Fertility Preservation and Cancer

It looks like I have gone from an extremely big to an extremely small opponent as I was diagnosed with cancer over a year ago now - and my encounter with the sperm whale leading to my sinking in the middle of the Pacific was just a few months before that. Bit if I could dodge that 80-ton mammal, these microscopic cells stand no chance.

My cancer grew so attached to my reproductive tract that it decided to keep it as a souvenir. As I had not planned on being a tourist ground for cancer and menopausal at 32, I sought help to preserve my fertility. This affected me so much that she worked with top physicians in the field to make a documentary to raise public awareness of these solutions. Fertility preservation options are little known to patients and physicians alike and many patients embark on irreversible sterilizing therapies before exploring options.

You can see the short video at: http://www.youtube.com/watch?v=sFGg3yyDNYs

I now count on the frosted Mini-Mes to keep my spirits up! More info at stories.beatsarcoma.org.

Pacific Cup Blog Launched

and available at this location.

Update

Hi everyone - Sorry for the delay in posting an update. I am actually maintaining a private blog (much more detailed) and it took up a lot of my time. I am still in treatment and still chatting with a bunch of doctors, fighting off the nasty Alien but I have some news. I also founded a non-profit to help with sarcoma research since it currently gets less than 1% of funds available for cancer research. Still very early stages but it looks promising!

I may not be able to update this blog regularly. I am tired from the treatment which annoys me greatly, trying to do some work and setting things up with the non profit - in addition to some sailing and maintaining the private blog.

I will post an update once the non-profit is ready for prime time.

Meanwhile, if you are interested in finding out more about the Alien story, please email me and we should be able to get you an invite to the private Alien blog.

The Return of the Sarcoma

Hey skywalkers,

I was just trying to find something catchy to break through the clutter of uninteresting posts, all evidence that I am getting rather bored sitting at home or in some tea lounge all day. Even work (that small task I was asked to do) kept me busy for only half a day. Pumpkin played with a toy that has a small bell all day and I am now slowly but surely turning into a shepherd.

Interesting things can happen in my neighborhood. A friend and I sat at a coffee shop. I ordered a "cafe frappe". They had a Mocha version which I was asked about but confirmed that I really wanted the regular one. The waitress brought me the supersized version (I ordered a medium) because she made a mistake and prepared a Mocha frappe. She said apologetically "you get a big one for free because I made a Mocha, so I am giving you more for your money". The logic is fabulous. This is a drink that I explicitely did NOT want, and I am getting MORE of it???

It really feels so weird. The bleeding ceased after the first surgery. The pain stopped after the second surgery. I am feeling more or less fine now (a little pain at times in the lower abdomen, very sharp, like thousands of needles all aiming at the same point at once). The first week, I was more or less asleep the whole time. The second week, I couldn't drive but I can walk ~ 1 mile/day. From this weekend onward, I can gradually increase the distance I walk and I can drive to medical appointments. So I don't feel sick at all. Yet, I am supposed to be off work because I need to limit walking/movement of my belly (no belly dancing for me right now...I know you were all dying to see that). This is so bizarre...Anyway, back at work in 1 week now, so everything should be back in order after that. Still no exercise/heavy lifting/tampon/douche, etc... for another month (apart from walking and be a tourist on my boat for a cruise) so that's a bummer. Then if I were to opt for a pregnancy, I would have to wait for another month.

If you are bored by this blog, I can take feedback. Remember that this Reality Show where everything will be documented is FOR YOU ;-) I don't want my ratings to fall just before we get into prime time.

OK, things are getting hot.

The pathology report confirms the diagnosis of some sort of malignant sarcoma. In any case, it has not changed. No one is saying that it wasn't malignant and Oops, we just removed your cervix by mistake and no one is saying "actually it is a very rare form of malignant shingles and you need a series of shots in the butt". The margins are clear around what was removed, although 1 cm shorter than what my oncologist had hoped for. Remember that for sarcomas apparently, it means little as these little aliens can send microscopic satellites around the body to look for sunnier places at the same time as they peacefully grow in one location. Still, for the "wait" strategy, it is a good thing. If she hadn't achieved clear margins, my uterus would have be sent to Pathology Heaven immediately. And it was quite deep into the tissue of the cervix, eg apparently ~ 90% of the cells of the cervix were cancer cells (that was visible on the MRI, esp, the contrast version). So I guess that the trachelectomy was a good decision.

So this means that it's my decision...We're back to square one minus the cervix.

A friend referred me to someone who counsels a lot of cancer patients. She was kind enough to call me today. The disease is definitely rare, she asked me to spell adenosarcoma because she had never heard of it before. It was GREAT to talk to someone who didn't just throw numbers at me. She offered a more human perspective :)

Here's what I have learned from our little chat:
- In rare cases, it is very normal to have everyone disagree. It is not helpful but it is expected, esp. among physicians who can be quite opinionated.
-She said that there was a big difference between "I recommend to go through a pregnancy and then do a hysterectomy" and "our main recommendation is a hysterectomy but if you are aware of the risks, you may wait and be watched". The latter means "the second option is not safe but it is reasonable".
- She thinks that the oncologists are working on answering my question: can I get pregnant now. They seem to spend a whole lot of time on this. Most physicians' gut feel would be to offer the most aggressive treatment to preserve life. However, most physicians will also want to understand the patient's goal and risk profile so it can be factored in the discussion.
- She recommended to spend a lot of time looking at other options to become a mother.
- For this type of cases, she thinks that I should go to the world experts. She recommended that I travel to a major cancer center over the next month, have them review my pathology, examine me, chat with me. She also said that I should not state my goal of carry out a pregnancy openly so as not to bias them. Finally, she recommended that I should voice my concerns such as "I am worried about having to interrupt a pregnancy if I were to start one" or "I am worried about my life if I wait before a hysterectomy" so they can try to quantify those risks for me. She also thinks that since my case is so rare, they will most likely be delighted to be given a chance to look at it.

It does indeed sound like most of the world's knowledge on adenosarcoma (which can be transported in a backpack when confined to a book format, using Font 11 Arial) is concentrated at one of those centers.

So this will be my next destination.

Another surrogate mother

Hello galactic wizards,

I just talked to someone who is using a surrogate mother right now (in fact, she was about to go meet her for her 21-week doc appt).

This woman went through an agency. The agency has 12 clients using surrogate mothers.
The main deterrent? Price...

Total cost is a little North of $100,000. This includes:
- $25K for the surrogate, payable in installments throughout the pregnancy.
- legal and agency fees
- health insurance contributions for the surrogate mother (regular insurance won't cover this so she had to get a new policy established)
- medical bills for the surrogate mother
- misc. expenses (gas and mileage when she goes to doctor's appointment, etc...) managed through the agency.

Compared to this, the cost of owning a boat is negligible ;-)
The cost of IVF cycles (also expensive...between $6K to $10K) is not included. In my case, I would probably want to do at least one other cycle.

This woman got help from her family. She also looked into adoption apparently, and that was around $50K or so. Definitely a little steep...Not quite sure how I'll handle that yet, although
I am sure that there is a solution to every problem out there.

It took about 2 months for them to find a surrogate mothers because they picked the 3rd one. They saw a new one every 3 weeks. The surrogate mothers are screened (they need to have at least one child, stable relationship, etc...). You can ask them questions, they pick you and you pick them (for example, this woman wanted to know what the surrogate was planning to do with the money. The surrogate replied that they would buy a new car because their current car is getting too small for them and their son)

She also chose to spend a lot of time with the surrogate mother, going with her to doctor's appointment, meeting her regularly. She said that she felt indebted to her and she would do anything for her surrogate, so maintaining a good relationship was important to her. She knows one other person who decided not to have anything to do with the surrogate mother (everything can be done "remotely", eg through others).

Not stress-free. The surrogate was an ex-smoker and apparently was "tempted" at times...

This woman also offered to make herself available if I decided to go through this, help me select a surrogate, handle the process, etc...

How does this make me feel? Happy for her, comforted by the idea that there isn't a 10-year wait time before you can find a woman who's volunteering to lend you a uterus and maybe a little surprised at the cost? It may push things out a bit, or will probably force me to make choices (eg, house Vs baby). But hey! That's what life is all about, choices!

And if you want my 2 cents: get regular medical check-ups and screening, maintain a healthy lifestyle and diet which would include not smoking. It's a lot cheaper to be healthy!!!

Sorry, catching up on a lot of stuff...

Hello Vizirs of the Cosmos,

- I am doing well, officially off the Tylenol as well!! Hurray!! I do some daily walking (a little less than a mile) and will increase this to a little over a mile/day over the weekend. I use this to run my errands that do not involve heavy lifting.
- The cats are the funniest and cutest creatures in the known universe.
- I still have a ton of flowers in the apartment and I am taking very good care of them, for both my enjoyment and the cats.
- A lot of what I am exposed to has to do with either babies or cancer which is a little hard to deal with (recommended a book about 1st year of the life of a single mom's son. Only thing is that her best friend dies of cancer at the end of the book)
- I have had people call and visit every day which is so wonderful!
- My final pathology report isn't ready yet so more waiting
- I am getting ready to graduate in Sarcomatography.

I now feel well enough to process some work e-mails, and perhaps join a few calls, eg. gradually get back into the heat of things. As I started to do this, I got a message from my manager saying that it would be best if I ignored all work-related things, including e-mails until I got back to work 100%. He said that people had my cell number if they ever needed an urgent answer from me.

?????????????????????????????????????????????????????????????????

How am I going to spend my days???

As my manager realized that he could not lure me away from e-mail, he suggested a task that would help the team a lot. It's right up my alley so I gladly accepted (for those who don't know, I love my job). It feels really good to be a little useful :) Right now, I am in a holding pattern, waiting for the pathology report and for my tissues to heal. I have no one to entertain during the day. I think a lot about motherhood/hysterectomy, etc...but I am not really making any progress. Just feels like an unhealthy obsession. Physically I am fine and my limitations are limited to walking, lifting and general exercise. I don't think it applies to typing. So this is a welcome break!

His statement yesterday sounded like a "don't worry about work for now, just worry about getting better". I really think that doing a little bit of this work that I enjoy so much will help me recover faster!

To those who have expressed concerns over my professional situation (esp. the EU folks who might think of the US as this harsh corporate environment), I wanted to reiterate that I could not have found people more supportive. My managers, colleagues, etc...have all offered to help in various ways. This emotional roller-coaster as well as medical commitments (time sink) had bad consequences on my productivity. The decision to have a baby or to undergo a hysterectomy will have consequences that will outlive my current position.

I told my managers very early on about the situation. Their support has been phenomenal. We consulted with HR and agreed to take it slowly and make temporary changes to my job when we both feel it becomes necessary. I am working with the team to make sure that I can transfer knowledge and some of my responsibilities. I have reduced the scope of my work to focus on what really matters. If it came to that, we have talked about my switching to a less demanding project, working part-time, taking a leave of absence or some vacation time, go on long-term disability leave, etc...There are many options. All my managers have assured me that it wouldn't affect my performance/career, except of course for a little time hit. My VP also said that if I needed to take a longer disability leave, she would make sure that I have an equally interesting job/project when I got back.

All in all, we are actively talking about the situation. I communicate anything that might be relevant to my employer as soon as I know about it or if the likelihood of it happening is high. I also share with them some of my concerns/feelings/emotions as they relate to work. I feel that we are dealing with this as two informed adult parties who have an interest in maintaining a good relationship, and who consider this a temporary situation that requires a little flexibility and creativity. We both agree that getting healthy is a priority (a dead product manager is no good to most Earthly organizations). I can't stress enough how I appreciate their openness, and support.

This is also a reason why I don't mind putting in work during an official medical leave.

I am unbelievably lucky.


I just slept for a couple of hours...Post-lunch nap. I guess that this is still what my body needs...My cats and I are taking turns.

I am slowly leaning toward the hysterectomy after my discussions with everyone. The main argument is the risk of having to interrupt a pregnancy to get treated. I will probably not get any new info from talking to more physicians, but it might comfort me in whatever decision I end up making.

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I have just received a very intriguing parcel! It contains...

A TEAPOT - nice, green, elegant...

Teabags, cookies and a beautiful scented candle!!! From a close friend with whom I played volleyball at University!!

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I decided to walk to the Tea Lounge this morning to do some work (my cleaning lady is coming today so it will be havoc in my apartment), and the tea there is too good :) I turned up at 9:15 only to find out that it opens at 10:00. Fortunately, there was a small coffee shop right across the road where I patiently waited. Kind of a weird hippy and artisty place,
After a few minutes, I started to feel some pain in my lower abdomen (hopefully will subside soon because I don't have any painkillers with me today!).
Just before leaving the place, I did what a lot of people do, visited the restroom...There I found on the floor, an extremely thick book entitled "The Biology Of Cancer". I looked through it, looks like it's some textbook about cancer. How random!!!

Pain is better now, hopefully will completely go away by the end of the morning. I am now sitting at the Tea Lounge, sipping a nice warm Chai :)

And some more opinions!!!

From a wonderful person whom I am lucky enough to count among my friends. This is combined with some help from the ship's medical oncologist who clarified a few of the "confusing" things I had been hearing.

"My advice on how to make your decision, which is different from my opinion on the best treatment option, is to raise your thoughts to a higher level and not let them get tangled in the details. Having the mind untangle details is somewhat comforting, but it prevents it from looking at the issue holistically. Step back from the issue and try to look at it from an unattached perspective -- then ask yourself what decision seems clear. "

I agree that all this new knowledge + playing with stats is reassuring. It makes me feel that I am getting to know my "enemy". It feels that I am running in circles now though since there really isn't a good basis for stats and pathologists can't even agree on the diagnosis/grade of the tumor.

We then walked through all the possible outcomes for the two options. This friend's argument is that even if it has less than a 1% chance of occuring, I must be prepared to accept the reality of that outcome and deal with it. When I go sailing, the probability of sinking is very low but I need to be prepared for it. I like that approach a lot. It allows for human (read: personal risk profile), ethical, emotional and religious dimensions. Let's do a mix in this post (add some stats and some other stuff)

Option 1:
OK, so let's take Option 1: aggressive treatment now. (No doctors are arguing about the nature of this treatment, only about the timing of it). This would be a hysterectomy (with or without removal of the ovaries, sounds like risk of spread to the ovaries isn't easy to quantify when I ask) followed by radiation.
The little data that was available on adenosarcoma has shown over a 30% risk of relapse for patients that undergo this treatment (although it's not quite accurate because some had adjuvant therapy and some did not. I don't know how the risk is distributed over this population). I thought that this was rather high...Most often when it recurs locally, it recurs at the top of the vagina or in the ovaries. In some cases, it's in other locations. This would be consistent with the 70% survival rate though post-treatment since after relapse, the numbers that I have read were not so good. 15% of the patients still alive after one year, 5% after 2 and 0% after 5...So it sounds like relapsed adenosarcoma is the real problem and that all treatments have tried to reduce the risk of relapse as much as possible.

So if I do this and if I believe this data then I would fall in the 70% category. The studies that I have read can't agree on what correlates highly with a poorer prognosis (eg. grade does not seem to)

The worst possible outcome is that I have a child, then relapse. This risk could be mitigated by waiting before having a child as I guess that the risk of relapse goes down as time goes by (?)
I would also probably feel quite good about myself because there's probably little else that I could have done, given the world's current knowledge of this disease (read none). And as a mom, I think that I can be prepared to die and not be there to raise my child so long as I have done anything that's in my power to prevent it.

The best possible outcome is that I don't relapse and have a child (somehow...). This is a reality that I am quite willing to accept. It will be tainted with regret though as I would never know whether a pregnancy would have been possible. This may be better than guilt.

The intermediate outcome #1 is that I don't relapse but can't have a child. I guess that if I try everything I can, then it's a reality that I will have to accept and that's what's in store for me. It's also a problem that many people that don't have cancer at all face every day. At least, I will have the opportunity to try.

The intermediate outcome #2 is that I relapse and don't have a child but then, it sounds like the risk of this happening would be minimized by my decision to go with Option 1. So anything else, I'd better work on accepting it and do God's will. To my knowledge which seems to be as current as the world's knowledge on this topic, there is nothing in my lifestyle that I would have had to alter to reduce the risk of developing adenosarcoma.

So Option 1 lead to outcomes I can deal with, even though it does deviate from an ideal family planning route and will not be something I can easily accept (when I was first told about a hysterectomy, it felt like I had just lost a child)

Option 2:
This means wait for a couple of months, work on perfecting insemination techniques, get pregnant ASAP, try to carry the baby to viability then go to Option 1. Total wait time could range anywhere between 12 to 18 months (including the fact that I did go through an IVF cycle as an insurance policy, have not had a hysterectomy yet). Risk of local recurrence after trachelectomy is high so there is a high risk of tiny little cancer cells left behind. Those cells can be managed locally through resection but what I learned today is that the wait would increase the chances of one of those cells taking a ride in a vein and travel to the lungs to make babies, hence would increase the risk of non-local recurrence. This is probably what doctors meant by "risk of non local recurrence is LOW, in their opinion, but NOT zero".

Best Outcome: I can get pregnant in no time, deliver a baby and go through Option 1. I would feel pretty good about this of course, this is the main advantage of Option 2 and it would mean that it was successful. I would have a stressful pregnancy most likely and would not get to enjoy my child full time for a few months after birth since I would have to go through treatment.
Now, the likelihood of this outcome is rather low (20% maybe). We do have quite a bit of data on this so we can certainly estimate it. I read on the Internet that success rates of IVF insemination hover around 30%, it will be lower for me as there is a risk that my cervix won't heal perfectly and make it harder for either sperm or embryos to get through. I have some 70% chances to deliver a healthy baby. And I also found out that the average time for a couple who can conceive successfully from the time they start trying is about 6 months. Since I need to achieve the same feat in less than 2 months, my chances of success are less than 50%. So let's say between 20 to 40% overall from today. Let's note that the risk of local recurrence is over 50%. She has also given an opinion about the % increase in risk (combined) associated with waiting. She could not give a strong basis for this estimate but she did say 5% and it's the only number I have. Let's assume an initial risk of 1% of non local recurrence (that would be low by stats standards, in fact, noise given most error margins...) and let's assume that this 5% applies to both local and non local recurrence risk. Then the total risk of non local recurrence with waiting would be 6%. For someone with a child, knowing that survival chance will be reduced by 6% sounds high to me. My risk profile changes with a child, I will be willing to take fewer risks because I will feel responsible toward this child.

Worst outcome (there's no point in going through the intermediate here because if I can't accept the worst outcome, then this option should no longer be viable). I get pregnant but the local recurrence happens fairly early on and my doctors feel that they should interrupt the pregnancy. I would feel awful for three reasons:
a) I would feel very guilty because I would have known that there was an increased risk to this pregnancy due to this cancer diagnosis and yet, I would have gone ahead. So part of this outcome would be because of my decision. There is also a risk of this pregnancy being "interrupted" through a miscarriage because I don't have a cervix. However, this was a risk associated with the trachelectomy in the first place. It would exist even for women who have a more predictable cervical cancer.
b) I would feel worse about losing a child mid-pregnancy than not attempting a pregnancy.
c) My overall survival rate would be lower for certain (how much is unsure but if the local recurrence is noticeable, it means that it was active for a little while and could have sent more cells elsewhere). This is scenario that was referred to as "Oh Shit, I should have taken the most conservative route".

Out of these three, b ranks first in how bad I would feel and the combination of a+b is a real problem. I would have actively contributed to an abortion...I don't care so much about c in this case because it concerns only me, not me + a child. I frankly am not sure if I am willing to accept this. I would have to think some more about this but I think that losing a child to cancer (indirectly) mid-pregnancy sounds like the worst possible thing I could do from a human, ethical, religious (I am catholic) and emotional perspective.

How likely is this outcome? I don't know because the 50% that I was quoted was within a 5 year window. However, if there is a local recurrence, it will most likely happen soon (within 2 years). So it sounds like the risk is front-loaded and decreases over time. What's unclear is the impact on pregnancy. What's clear is that it will increase the risk of non local recurrence (if it can be seen on a scan, it will probably be quite active already) so I would be in a bit of a dilemna as I may have to choose between my life and my baby's.

So my decision might rest on a+b. I could assume a minimum risk of 0.001%, probably higher than the likelihood of getting hit by a whale.

Sorry for the length of this post and potential typos (I have not proof-read this post). I will think about this some more.

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Chat with the ship's medical officer.

- high risk of local recurrence is equivalent to high risk of microscopic cancer cells left behind
- risk of non local recurrence increases with time if microscopic cancer cells are still present
- it is possible to manage the disease LOCALLY through resection during or right after a pregnancy but this won't apply to non local instances of the disease. This sounds like a reasonable approach if the tumor is considered low grade (slow growing) and if the goal is organ preservation. It is not the standard course of treatment which is defined to increase the likelihood of survival.
- This kind of disease seems to favor travelling through the blood stream. So the next likely organ on the list would be lungs. This would be very difficult to treat.
- Chemotherapy would be a big question mark in terms of how helpful it would be
- This cancer is hard to detect and if it has spread to other parts of the body might not be detected for a little while, thus increasing the chance of it spreading to yet another part of the body. So assuming that it has spread to the lungs and can be dealt with, it might next show up somewhere else, and so on and so forth. Not quite what I want to spend the rest of my life dealing with
- Even for known cancers; historical data does not explain everything as each individual and each cancer will have a unique biology. In particular, in my case, since there is no case history, the range of possibilities is big
- Melanoma and sarcoma are really very different diseases and the melanoma comparison is probably not relevant
- The low grade factor plays a role in the short-term decision as it would affect the time after which the tumor needs to really be resected. It is not clear how it influences the non local recurrence risk since this type of cancer seems to be keeping some of these new cells locally but could also send some remotely at all stages of development.
- Sarcomas do not typically metastase through the lymphatic system but through the blood stream. However, removing the lymph nodes with the hysterectomy (at least a sample) would be fine. It increases the risk of lymphoedema (eg. swelling of the legs) combined with radiations.
- It is hard to quantify the risk of spread to the ovaries

Hope that I am not forgetting anything. I didn't take notes...

- If the final pathology report looks bad, then Option 2 disappears
- Else, I can go back to the a+b discussion from the previous post

Off Percocet

First off, it's the weekend. Not that it matters to me but it matters to a lot of people whom I deeply care about.

Next, I will try not to take any Percocet today. I took one last night to help me sleep but I will try to switch to Tylenol. The side effect of these little pain pills (constipation) is really not helping with my rectal fissure. I now have to choose between short but acute pain caused by the fissure and continuous but very bearable discomfort caused by the surgery. I choose to alleviate the former. Hopefully, this will also mean that I am finally awake (I slept some of yesterday and it took me about 45 minutes to read 3 pages of my book).
As I wrote in an email to a friend yesterday, I now feel like I am experiencing painful periods (I have never had painful periods before). Before, it felt like I was permanently in the final stages of labor (I have never been in labor).

It gets even better!!! I'll hang out at my favorite Tea Lounge for the afternoon. I will take my "Walk" from there. I know that I am supposed to be home bound for most of the time but I figured that the seats there are as comfortable as the ones in my appartment. And I am getting positively sick of my appartment.

I must not forget to say that Pumpkin is curled up on my lap, purring really loudly. Hershel is at my feet seemingly asleep.

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I am now officially off this thing which
- made my body feel like it was midnight at all times
- made my grammar in any language look similarly bad
- gave me a memory span equal to that of a goldfish
- prevented me from drinking wine

That's my BIG news for today.

More medical opinions

I asked a friend for an honest medical opinion. This friend also happens to crew on my boat so she is absolutely trustworthy :)

Notes:
1) The "third-hand' transcript was the one you have read
2) The "colleague" is a GYN oncologist
3) This friend has not seen the pathology reports. All the information that she has to work with is the information that you all have access to.

"I do not know you that well, or how much having a child genetically yours has played into your life plan, but I personally would not be considering, or recommending to you to try to carry a pregnancy. My recommendation would be hysterectomy - as it offers the best chance of completely removing your cancer at the earliest stage possible. Removing all disease before there has been any chance for spread offers you the best chance of cure. The "third-hand" transcript below most closely mirrors what my thoughts on your situation have been. I have been reluctant to state my view in such a bold manner as I am not your physician, I have not reviewed all of your information personally and certainly have not seen a case just like yours.

When I spoke with my colleague, he stated his recommendation would be hysterectomy, with discussion re: pros/cons of oophorectomy. He would be very reluctant to offer a more limited surgery given risk of leaving residual cancer behind, which could spread during a pregnancy, and the fact that getting pregnant, much less carrying to viability, would be low."

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Well, we are not very advanced in the day yet but I am already bored, so I will post something on this blog.

You are getting the first hint.

This blog is USEFUL to me, at least, it gives me something to do when I am not sleeping and not picking up guys, I mean, walking around the block.
I also find this blog extremely therapeutic. It helps me process and express my thoughts and feelings and none of it feels so big since it seems to be distributed over all of you (thanks I hear you say...) and doesn't stay with me. This is why your support, positive thoughts and prayers mean so much to me and why I always enjoy e-mails, comments on the blog, even the silliest thing! Having cancer on a desert island with no Internet access must be really tough.
I consider this little adventure a journey (I know, I am not the first/only one to say that) - I guess that life is - so let me rephrase this it's a special train, the Harry Potter one. It looks daunting at first, but it could be a great ride after all. There must be a reason for it. I don't know what your religious beliefs are and I don't mean to single out anyone with this post. Mine are telling me that God has picked this particular route to teach me something. My learning style is to talk this through, bounce off ideas and iterate on them (after I do a ton of personal research so I feel like I know what I am talking about). This blog is a great professor!
This blog helps me in one other way. I am a very secret person when it comes to personal emotions. So secret that it is sometimes hard to communicate those even to myself. First I started music/writing poetry and short stories, or travel journals, etc...They were all ways I chose to speak. Writing offers a nice safety net.

For this blog to work and help me, I must be totally open and not hide anything about what I might learn, even if it is laughable (I had never heard of a rectal fissure before!!!) or sounds ridiculous (I can't use tampons for another 5 weeks and post-op bleeding have to be dealt with with pads...)

The strangest thing is that I feel super powerful and super vulnerable at the same time...
I don't mean from a disease perspective. I feel vulnerable when I open up that way. You can all pick up anything you want, critique anything you like and realize how clueless or scared ("terrified at the idea of a hysterectomy pre-pregnancy") I am. I feel also powerful in that I have words for all of this, an army of wingless angels called friends (if you have wings, that's a scoop, I want to see them!!), and an infinite number of prayers and thoughts accompanying me. Friends who have gone on similar journeys, friends and family who are travelling with me on this one. Powerful because I don't have to hide from this, I don't have to pretend.

OK, pressure's on now. Better not make this boring...

You - through this blog, thoughts and prayers - are saving me!

more fun things!

Is Uncertainty a synonym of cancer? I wonder sometimes...

When pathology labs were fighting over the little sample that was available for diagnosis and while I was waiting to hear back from them about whether a) it was benign, b) it was malignant and c) what type of cancer it was so we could deal with it, I thought that the hardest thing to deal with was uncertainty.

I was also under the impression that once a+b+c would be figured out, there would be a plan and I'd just be cruising along. But not really. No data fits my case, most oncologists have never seen a disease quite like that and past surgery, treatment options are experimental. Option 2 and Option 1 both contain an unquantifiable amount of risk. So there is still uncertainty.

Every new bit of information comes with its load of decisions, stats and imbroglio of medical terms.

Glad that there's a bit of time in-between decisions...It definitely helps.

******************

Re: Low Potential, Low Risk and Me.

Someone who is quite astute with numbers did point out to me that Low could be Very Likely in my case, given my recent history, and should not be discarded in my decision making. Even though the events described below are probably quite independent, they prove one thing: rare can happen, and moreover, it has happened to me.

a) Not very many people get hit by a whale mid-ocean
b) Not very many people get this type of cancer in the first place
c) Not very many people do not like chocolate
d) Not very many people in the US do not own a TV
e) Not very many people lose their teapot to an angry stove burner

Someone who is even more astute with numbers did point out a correllary to this Law of Small Numbers.
"You said that you felt invincible because of the oddities like the whale that you came through just fine on, while I want to argue that independent probabilities do still apply to you."

It is true that this can work both ways - and I could feel both fortunate (to have survived the sinkage) and unfortunate (to have sunk). Or lucky that they have found an undetectable cancer (other than through biopsies) early and unlucky that they have found a cancer.

If there are any more Field Medals in the audience, feel free to add theorems, counter-theories and other unbelievably long formulas in the comment area.

***************************

I just went out for my Walk Around The Block. Walking around the block is a fairly dangerous activity, so my advice to you is to not attempt it without first checking with your family doctor.
If you get a green light from a competent physician, preferrably with a medical degree, then you may wish to proceed cautiously, and follow these steps. If you get a drawing that looks like a light bulb (green or not) and is supposed to represent your uterus, I suggest you switch to another doctor.

As a preparation, choose a flashy looking modern sports outfit that says "I can climb Everest in flip flops". "I Love Big Boobs", or "Am I Hot or Not" are not in fashion anymore.

First, you need to stretch. That's because most people look quite sexy when they do that. I recommend placing yourself at a street corner that gets quite a bit of traffic to increase your odds of picking someone up. It's always nice to have some company during a little stroll. Choose someone who seems to walk quite slowly. It will make you look good.

Next, make sure that you have forgotten your wallet with the money necessary to sustain you during this long trip so you need to walk back up two flights of stairs and get some extra exercise. It also allows you to check one last time your hairdo.

You will then start walking. To reduce the risk of falling, you should keep one foot on the ground while throwing the other one into the air and look as if you know where you're going. Do not try big steps. Research proves that small steps are more elegant and increase your chances of getting invited for a coffee (particularly handy if you decided not to walk back up to get your wallet).

This can be strenuous exercise. Stopping in front of a well-decorated shop and admire the various exceptional offers from time to time will certainly allow your heart to maintain a safe pace. You should save this organ for the rush of Love At First Sight, a side activity, often practiced pre and post-stretching. If you feel tired, you may be carrying too much weight for your level of fitness. This can also provide an excellent occasion to offload some of the contents of your wallet.

After you have walked half a block, find the most comfortable chair outside a coffee shop and take a break. Do not overdo it! This is a really important step because coffee is so good. You'd be stupid to miss out on it just because someone said you should do a loop around the block. The block will not go away but your coffee might get cold. If you haven't gone back for your wallet, offer to do the dishes. It will offer complementary exercise for your upper body and is excellent for hygiene. Don't stay too long back there though, you are less likely to attract The Person Of Your Life. It's hard to see that you have polished your trainers when they're out of the light.

The next and last real difficulty in this exercise is to cross the street. This is best done at a 90 degree angle from the curb as you would not want to walk 0.1 mile in the wrong direction. You do not need to wait until the street is clear of traffic. Just pick a driver that looks cute, look him or her in the eyes as a smile beams out on your face and reduce your pace as you cross in front of that car. Hopefully, you'll get a ride back to your place.

Finally, you will be back in front of your house, appartment, boat or office. Remember to look quite exhausted but make sure you haven't walked so fast as to sweat extensively. The smell can be quite repulsive. Open the door, walk to the phone and call the person who offered you that coffee and nearly ran you over as you were crossing the street. That's it! You're done!

Was this the wrong surgery?

To oncologist #2

"Below is a 3rd-hand transcript of a conversation that a friend of mine had with an oncologist. I hope that I am not distorting the message. The bottom line was that, in this physician's opinion, waiting before a hysterectomy conveyed a significant risk.

A hysterectomy is a big decision (I have just had a trachelectomy) and I have a strong desire to go through a pregnancy. On the other hand, the strength of the reaction below is puzzling to me. "
Here's the transcript
"Removing the cervix = a good start but not enough . It may be possible to preserve the ovaries. Other than that, he would really recommend the big surgery, ASAP. If I were a close relative, we wouldn't be having this discussion. He stated that life _WAS_ being jeopardized by delaying surgery, that even with definitive surgery now, survival was not guaranteed. There is no doubt in his mind that this is the best shot at survival I will ever get.
He believes that I still have a chance to be cured and survive (past surgery and potential adjuvant therapy, there is no known cure for this type of cancer) and he wants me to have the best chance.
"Sarcoma" (the type did not matter as much as sarcoma characteristics), scarcity of data about the disease, difficulty of diagnosis seem to be enough information for him to recommend this course of action. He did state that without full data he was on a less certain footing.
He added that if I wanted to sacrifice some of that chance of survival to have a baby, it would be my prerogative."


***********************

To oncologist #3

"As a follow up to our discussion today, I wanted to give you more detail about the other opinions I have been hearing, as an FYI.

Here's the latest e-mail that I have received from a friend who is a medical oncologist and who consulted with a GYN oncologist.
The information I have shared with her are the tumor board recommendations, the diagnosis of a lMullerian adenosarcoma as well as the alternate diagnosis proposed by the Stanford pathology department. I have also given her the history (dates + procedures performed)

The other oncologists (most of whom I do not know as they were introduced to me by friends), including a radiation oncologist and an oncologist who is currently treating a patient with relapsed adenosarcoma, after a hysterectomy, also have received the same information. I have mentioned to them my current decision to do a trachelectomy, to attempt a pregnancy followed by a hysterectomy and be done with it, and a summary of our discussion. Their reaction is very similar to the one listed below.

These people have all urged me emphatically to consider a more aggressive treatment. To give you an example, one of them called me early yesterday to dissuade me from doing a trachelectomy. All of them seem personally concerned that my life is being jeopardized by waiting.

Let's wait until the final pathology becomes available and I would love to have a referral into Sloan-Kettering. I am struggling to understand the risks inherent to my current decision.

"[Follows a quoted email stating that delaying surgery would convey a significant risk]"


**************************
And the counsellor of the REI clinic
"I have heard conflicting recommendations re: best treatment options for my disease, all from very competent physicians. When I mentioned to these oncologists my current decision to do a trachelectomy, to attempt a pregnancy followed by a hysterectomy/adjuvant therapy, they have all emphatically urged me NOT to delay radical/aggressive surgery any longer. Most of them seem personally concerned that my life is being jeopardized by waiting, given the difficult of diagnosis, the rarity of the disease and associated scarcity of data and its incurable nature past the first attempt at a cure. Some oncologists are also recommending radiation and chemotherapy. I will most likely have radiation.

I am terrified at the idea of a hysterectomy now (as opposed to post pregnancy). I have just had a trachelectomy done. It occurs to me that I have spent a lot of time justifying the recommendations that fit my desire to go through a pregnancy and not dedicated enough time to contemplate the alternative.

I know that the clinic has dealt with other cancer patients and I was wondering if I could benefit from their experience. I would be curious to hear how they have lived through a hysterectomy/potential loss of fertility during their reproductive years). Specifically, I am interested in understanding how this experience has affected their perceived self-worth, both as a woman and as a mother.

I am reluctant to join a support group. I was wondering if you would accept reaching out to these patients and sharing my contact details with them, asking if they would be open to having this conversation with me, or if there would be anyone else I could reach out to. I hope that my request is not unethical or inappropriate but if I am mistaken, please accept my apologies. "

The doctor replied to me:
"I hope your recovery from the surgery has gone well.
I do not have a lot of patients who have been in a similar situation, but I will try to contact a few patients who have had hysterectomies to see if they are willing to talk."

disclaimer: I am still drowsy from the Percocet so don't mind my English...

Just got a call from oncologist #2
- "We believe that there is a high risk of local recurrence (read uterus/top of the vagina) but that this does not put your life in jeopardy because it can be treated with resection and radiation. So if you did go through a pregnancy and we saw this recurrence, then we would both feel good because you would have tried all you could (except that you might lose a baby half way through...) and I will still feel confident that I can save your life and remove the disease before it spreads any further."

[Note from my medical self]
So the risk of local recurence *could* be quantified if we believe the little data that's available, even though none of it fits my case. It's called "significant" and oscillates between 30 to 50%. Oncologist #3 had estimated this risk to be well over 50% in my case because all of the cervix was already gone.

"- What is worrying is the risk of lumps and mets way outside of that area. This risk is not zero with sarcoma but our position is that it is small enough to let you consider Option 2. If your final pathology reports indicates that there is anything suspicious close the cervix in the uterus, then Option 2 should disappear."
(but my pathology report will focus on the cervix! not the uterus. Read, this risk sounds really low and we don't believe that it should affect your decision making)

[Note from my eminent medical self again]
This is where things get blurry. The risk of NON LOCAL RECURRENCE IS NOT ZERO but she can't give me a number!! It is small at this stage, because the cancer was found so early, hence their recommendation. Note that oncologists said that clear margins meant NOTHING for sarcomas because of the hopping habit, so I am really confused as to why all of the sudden those margins are so important to everyone. Is it because it is still an early stage?

When I mentioned that one of the oncologists believed that there were already seeds in the uterus (beside the polyp that was removed), she said that there was no way of knowing at this time, and that if it was the case, then leaving the uterus in would lead to metastatic disease over the course of 1+ year. However, she felt that I have read up a lot about this type of cancer and the associated risk and that she feels that it is reasonable for me to attempt Option 2 and that risk to my life does exist as the disease will most likely recur or progress but is deemed manageable. She said that I would have to be watched very regularly and quick action would have to be taken the minute anything starts to show its ugly face.

When I mentioned people's concerns about leaving cancer cells behind in the uterus and the fact that the disease is so rare that it is hard to predict how it will behave, oncologist #2 agreed and said that the only condition she's comfortable with letting me go down the path of Option 2 is if I agree to be watched super regularly, accept that my life can be saved only if I go through aggressive treatment WHEN it recurs. Under these conditions and based on the information that she has, she believes that she can manage the disease in that length of time to give me a chance at a pregnancy.

She also said: "the problem of course is that all the people you are talking to can be right. The more extreme or the more moderate opinions could all be right. No one will be able to tell you for sure what will happen. That's why I believe that you are doing the right thing, giving this due consideration, gathering data and understanding your decision."

She left me on a very nice note, saying that she was glad that I was recovering so well from the trachelectomy. That, she said was something that definitely could NOT be delayed any longer. I really appreciate her getting back to me so quickly.

So bottom line, if I understand correctly:
- Risk of local recurrence of the disease is high (let's take it for granted) but with regular watch, it can be managed. If it recurs too early, it will kill my pregnancy but it won't kill me (since a hysterectomy/adjuvant therapy should take care of it then)
- Risk of metastatic disease is low but not zero, principally because the cancer is at early stage

I think that I now understand their position. It seems extremely consistent and logical. I also better understand why they are making this MY decision.

- This is a big deal but it's early and we have dealt with the most urgent issues
- If the margins are clear, we are confident that if there are seeds in the uterus (or not as it will probably recur anyway), then the recurrence will be local and can be dealt with through resection (eg surgery) and radiation (and/or chemo) which means that my life is not in jeopardy
- risk of metastatic disease at this stage in their opinion is low but not quantifiable, thus more aggressive surgery AT THIS TIME may not be necessary if my desire is to go through a pregnancy.
- I will need to have a hysterectomy at some point. This will be my only chance for a cure.
- This disease is rare and it will be hard for anyone to tell me how it will behave. There is indeed no data that fits my case and it is hard to treat once it spreads beyond the uterus/cervix.

OK, I will chew a bit more on that...

************************

I just received flowers from my team at work! It's such a huge bouquet that the delivery man was panting when he got to my place (top floor). I just sent a Thank You email around. I am so touched! I really wonder if I deserve all this support. In the grand scheme of things, I suffer from a cancer that was found early and things don't seem bad at all. I am terrified at the idea of having to undergo a hysterectomy at age 32 but it won't stop the world from spinning.

"Hello everyone!

Thank you for all your support and kind words! I am doing well and these beautiful flowers will no doubt speed up my recovery! So far the only casualty of this whole operation is my beloved teapot (a "volunteer nurse" tried a very original recipe which didn't work out so well). You will find below the obituary, edited for a local news page.

My cats think that I have finally understood the meaning of life as I join them in daily naps, induced by narcotic pain killers :)

See you all soon!
ps: no cat or elephant was hurt in the making of this story

[the obituary you are all familiar with]

***********************


Someone pointed out to me that she wasn't sure that my reason to delay a hysterectomy (whether or not there was any risk in that) held much water.

It sounded to her that I was depicting a very romantic pregnancy, a time where mother and child will bond, the first kick, the first ultrasound, the first meeting...breastfeeding, etc...
She then rather plainly laid out in front of me what a pregnancy without a cervix might look like, esp. under a little time pressure.

- Work with a fertility doctor to get pregnant
- Ensure that no twins grow in there (not sure if the circlage would hold this), at least, no triplets...
- Worry every day about miscarriage and losing your child
- Restrain your activities to minimize the risk described above
- Stay bored in bed for 19 to 20 weeks
- Assuming 32 week point is reached, schedule a C-section and have surgery
- Assuming baby is viable, probably look at him/her from a distance for 6 weeks as he/she keeps growing in an incubator

Of course, to this mix, we should add:
- Meet doctors on a regular basis to make sure that cancer isn't growing too fast/coming back too early

Her next question was: is this what you really want?

Trachelectomy is a fairly new procedure that was created specifically for women with very early stages of cervical cancer that wanted to preserve the ability to carry a child. Not many GYN oncologists can perform it and to qualify women must have expressed a very strong desire to carry out a pregnancy. It is a high risk pregnancy, but it is a pregnancy. Many other women have this procedure done and enjoy a pregnancy. Seems to me that there might be something stronger in this?

Nathan was also worried that if all the odds were multiplied, it's not worth it.
- Getting pregnant within 3-6 months (assuming clear scan and OK final pathology report) - % chances?
- Cervixless uterus has healed well enough to allow for either insemination or normal sperm travel (apparently in some cases, it heals in bizarre ways and makes this virtually impossible without laparoscopic surgery) - no idea % ?
- Cancer does not develop too much too fast so pregnancy does not have to be interrupted (no idea % but I am told it's LOW, whatever that means...)
- Pregnancy carried to viability (70% of the cases?)

Well, if there is no additional risk (eg, like the oncologists say, they can manage a local recurrence if it happens during that time), I would argue that even a 10% chance of success would be worthwhile.

Granted, it would be a little more stressful and less glamorous than a regular pregnancy. Point taken and assimilating this in my thought process.

Recovery

I called the REI Clinic to schedule a follow up appointment. I followed the menu options. Option #1 was "if you are a new patient" choice, Option #2 was for non-new patients willing to speak with a coordinator which is the option I selected.

I got a voicemail back telling that I had picked the wrong option. I should have selected Option #1 and tell the new patient coordinator that I am not a new patient.

But of course! Why did I not think of that before?

************************

The Obituary of the Elephant Tea Pot

9/9/1992-3/20/2007


Farewell dear Elephant Teapot, companion of so many sleepless nights.

After sailing the Seven Seas and traveling five continents, Elephant Teapot succumb to a sad, unexpected, and molten end following a short but courageous battle with the right front burner.

Elephant teapot is survived by 2 elegant english mugs, Frog and Toad, and 2 understated but refined teaspoons. Also, the family pet cookie, Le Petit Ecolier.

Elephant teapot was 15 years old.

The burial ceremony took place at 6:30pm, in trash bin #2.


In lieu of flowers, the family requests a new teapot and 2 teabags.

*******************

OK. Let's look back at the past few days. I had no idea that domestic life could be so exciting. My fridge was just about to explode before an emergency Fondue rescue. A volunteer friend ran away with my insurance card. My landlord found cat's hair in the stairwell and has sent a quarantine order until he can clean things up. I have lost a teapot in a dramatic kitchen fire. My cleaning lady just broke the vase that used to contain the sunflowers. There's water all over the place. My left-hand is all bruised because of Anesthesiologist The Great and I can't get this band-aid glue off my arm. Apparently it makes me look so trashy that I just got an IM from a friend who's hoping that the garbage truck will leave me alone. I have become extremely skilled at stacking up in elegant domino fashion over 6 packs of "Le Petit Ecolier".

I have just received a call from the insurance company asking me about the procedure as they are processing my disability claim. It's such a rare procedure that I had to describe what it was. When I started a very scientific description of how the top of the vagina could be stitched to the bottom of the uterus, the lady on the phone said "All right, you can stop right there, I am going to approve your claim. I got the paperwork from your doctor's office. In fact if you wanted to take more time off, it sounds like a good idea"

I am now at serious risk of acute boredom since I sleep only one hour out of five, a rare disease in my family...

Surgery

Hello interstellar blizzard,

I was in agony in the recovery room (apparently they kept me there for 4 hours or so), holding my tummy, crying and constantly screaming that my pain levels were anywhere between 8 and 10 :) I don't have a very clear memory of that room, I can't remember faces there either as I think that they sedated me for most of the time I spent there. Then I was asleep/waking up and asking for more pain medication/asleep for most of the night :) Feeling much better (just groggy) and the pain medications are keeping me comfortable now!

Now that I am a little bit more awake, I will post a little something on this blog. On Thursday morning, my courageous chauffeur brave enough to fight early morning traffic picks me up and drives me to the hospital. I register at the Surgery Center. There, I am asked if there is a particular religious affiliation I would like to state. I am taken aback by the question. The person at the counter replies kindly that "if we need to call a priest for you, it's better that we call the right now".

Charming!

I am then led into the Pre-Op area where they ask you a ton of the same questions everyone has been asking you for the past few months. You dress up in a lovely gown, probably some 18th century fashion style, and you are left alone for an hour until the doctors decide it's time to come say hi. I use this time very wisely, getting educated in classic Spanish literature as you can see.

My oncologist drops by and reminds me that after this procedure, if I wanted to get pregnant, I will have to have a C-section to delivery. I thank her for this useful albeit late clarification and wish her well. She also says that my anesthesiologist is "Great".
The cute and great (and married with two kids) anesthesiologist finally comes by to start an IV. He is Swiss so we talk about his good old European days. He decides to start the IV on my left hand. He first numbs me (that's the uncomfortable part as the liquid that's used for that is quite painful), then just insert the tube. He misses the vein or did something wrong and he has to take everything out after messing about with the tube for a few minutes, thus creating a nice bruise. Meanwhile, he keeps asking me if I could feel something. I reply that I can feel a tube moving around in my hand, that it is rather painful and is making me feel nauseous. He thinks that it's strange since he numbed the area. He does it again on my right hand and everything goes smoothly this time around. I am so glad that he's a great physician. I wonder how many times a bad one would have had to try this.

I ask him how anesthesia worked. His response: "we really don't know. We know it does work but we don't know the mechanisms by which it works. But don't worry, we've done this plenty of times." Another reassuring tidbit of info from Dr. Anesthesiologist The Great. And if he's done it as often as he has inserted IV into people's hands, I am not sure that it is such a good thing.

Then because of my last "post-egg retrieval" PTSD experience, he wanted to give me something to knock me out and make me feel really relaxed. I thought that I could refuse but apparently not. He says: "you will feel things but you will really not care. I want to see how you're doing on it before I put you to sleep".

1 min later, I was totally out since I do not remember leaving the pre-op area, entering the OR, leaving the OR.

The next thing I remember is actually quite fuzzy. I remember feeling A LOT of pain in my tummy, holding it with my two hands and screaming as loud as I could. I have a very confused idea of where I am, I don't remember hearing the usual "your surgery's over", or seeing my doctor. I couldn't describe the recovery room to you. At times I hear "what's your pain level on a scale from 0 to 10". I start with a conservative 8 but whatever they gave me for this pain level didn't work. Next time I am asked the question, I shout back "25"!!! I have no notion of time, I don't remember how long I stayed in the recovery room. I just think that the surgery lasted for about 2 to 3 hours. I remember people holding me down, trying to keep me somewhat flat and motionless. I remember some orders flying over my head "4g of morphine" or "let's keep her on oxygen to help her relax". Then after what seemed to be a long struggle, in and out of consciousness and still experiencing some extreme pain in my abdomen, I vaguely hear "we're going to take you to your room now", feel the velcro portion of whatever they use to monitor your vital signs during surgery removed. Then nothing. Next I hear is "try to slide down more to the left. It's a softer bed, you'll be more comfortable". Then nothing. Then a lot of pain, rolling over to the side holding my tummy, nurses coming in and out to take vitals, adding morphine on a regular schedule and giving me valium every 8 hours and Percocet (2 tablets at a time) every 3 or 4 hours. I wake up for dinner, which was not vegetarian (they should have asked me about dietary restriction at the patient registration desk!), with no appetite and feeling quite nauseous, have a nurse take a picture and then go back to bed...

I spend the night with pain levels around 5 to 7, woken up every few hours...

************************

Oncologist #2 came by earlier today and we had a friendly chat.

- The good news is that the oncologist achieved clear margins after she removed the cervix (according to one of our past conversations, it doesn't mean anything but hey, it's still good news) and she even had a bit left to put the circlage around in a very elegant fashion.
- This also confirms that the cervix was full of cancer since there were no clear margins within it.
- The final pathology will become available sometime next week. We will do a special report on it. Stay tuned.
- She indicated that I could not douche, have intercourse, use tampons, take a bath or leave my house for the next three weeks, and no exercise for the next 1-2 months depending on how I feel. Wine seems to be OK, so we're cool.
- She then went on to say that I should wait for 2-3 months before becoming pregnant if I chose to do so. She thinks that it is better not to waste time waiting around. She will want to do an MRI at the end of this period and make sure it shows no visible sign of cancer. She also said that I should limit myself to a short period of time within which to attempt a pregnancy. If I am not successful within that time window, then I should abandon the idea of carrying a child and move on to Option 1.
- I did bring up the unanimous voice of most other oncologists I have talked to about the situation, urging me to go straight to Option 1. I also gave her some background as to which information they were basing their recommendation on.
- She said that her recommendation was based on the Stanford pathology report which states a different form of Sarcoma, much less aggressive in her opinion. Had she believed that this was a more typical sarcoma, she would not even have allowed me to go through an IVF cycle.
So she still feels confident that the remaining cancer if there is any, will grow slowly enough that it will be manageable after a pregnancy, through resection. She still recommends a hysterectomy afterwards and would support my desire to undergo adjuvant radiotherapy at that time.
- She said that she wanted me to feel comfortable with my decision and she would support me in whatever this decision is so long as she did not believe it entailed unreasonable risk. To help me better understand the risk of Option 2, she offered a referral at Sloan Kettering Memorial Cancer Center.
- I did mention that because this was so rare thus poorly understood, it would make sense to be conservative as the cancer could display unpredictable and potentially dangerous behaviors. She agreed that it was rare.

Let's wait for the final pathology report now.

**********************

I had a pretty decent night's sleep, waking up every 4 hours or so only for vital signs check ups. I think that I was a little tired and glad that I could rest. One shot of morphine prior to the night and then regular pain killers (2 tablets) every four hours + valium certainly helped accelerate my trip to Dreamland.
I have two beautiful sets of flowers in the room and they remind me of how fortunate I am to get so much support from so many wonderful friends! I will take them home with me!

Waking up this morning was a little rough as I experienced some pretty serious cramping, much worse than yesterday afternoon/evening but not as bad as Thursday post surgery! Anything that would take me away from a fetal position this morning would send me screaming...These painkillers do wonders though, so I am pretty confident that it'll be a comfy day overall! I am off the morphine for now, still on antibiotics through IV. I took two tablets of pain killers, 1 valium and my regular morning medication. The painkillers are already causing a serious bout of constipation which is not good at all for the fissure but I still prefer this than being in constant pain. Hopefully the cramping will get a little better. The nurse said that they will probably send me home with a good number of pain killer tablets as it is not uncommon to experience bad cramping for over a week after this procedure. I will probably have some antibiotics for another 10 days to prevent infection.

I have decided to dress up as soon as I can and sit in the chair as opposed to this bed which I am starting to get sick of. I am looking forward to a day of reading by the window and with the sun shining through, it will feel like I am outside. I am trying to drink as much fluid as I can to give my body as much energy catalysts as it might need to recover quickly. The 3-4 hour sleep at a time last night certainly helped!

The nurses were pleased with the fact that I took a little walk around the ward yesterday. I will try this again today. Apparently, it really helps with the healing. I can't walk fast/jump because the vagina is now stitched up to the bottom of the uterus and any serious effort might get this to break loose, causing pain and hemorrhages, none of which I am too keen on.

I was blogging this morning and one of the nurses was very curious so I did a little tutorial on how to use blogger, showed some of the pictures on there and said that this was a free service. Hopefully, we'll have a new blog fan by the end of my stay!

Another resident working with my oncologist came by this morning to check up on me. She did a quick exam, indicated that it was quite red/bloody which was normal but that I seem to be doing great, and much better than expected. My blood pressure is back to low levels and other than feeling very drowsy from the valium/pain killers I feel great!! She did explain that if I wanted to attempt a pregnancy, it will be a very difficult one, that I would have to be followed very closely (assuming it even gets started), probably stay in bed for 20 weeks and not expect to delivery after the 32 week mark. She also said that there can be complications with the circlage (the stitch that's permanently closing my uterus now) as it can get infected. This is a very rare and usually noticed because of pain in my lower abdomen and some bleeding. There is a standard procedure done vaginally to remove/replace it so they said that I shouldn't worry about that. Just be aware, monitor it and notify a doctor as soon as anything out of the ordinary were to happen.

*************************

The nurse came by to remove the IV...

I have a prescription to fill out today for more Percocet and colace (stool softener which I am already taking for the rectal fissure) to help with constipation. I will probably have to take painkillers every 4 hours for the next 5 to 10 days depending on how things go. Significant cramping is normal after this procedure.

Go home instructions say nothing in the vagina for 6 weeks but I guess that the latest is the one I want to follow.

Now, the reason for hospitalization and initial diagnosis is even more puzzling to me. It now says
Cervical AdenoCARCINOMA (not sarcoma) and Atypical Spindle Cell Malignant Tumor of the cervix.

Now, the worrying bit is that if some think it's sarcoma, other carcinoma, it could be both (mixed mullerian tumor) which would be really bad. Also, it sounds like they more or less agree that it is a very young tumor (and that I am so unbelievably lucky that they found it so early) which could explain why it hasn't been so aggressive yet. And maybe it wasn't malignant or just turning malignant around December/January timeframe.

Oh well, next steps make sense. Glad that someone at Sloan Kettering will look at this case. No one is arguing that it is not cancer and that I won't need a hysterectomy. It's the timing of it that's the crux of the matter.

Anyway, I am done with the Valium (just too the last one) which they gave me for PTSD.

************************

Actually, this diagnosis states BOTH carcinoma and sarcoma. Here's what it says

Discharge Diagnosis (post-op pathology to ensure clear margins): Uterine/cervix adenocarcinoma and malignant spindle cell tumor of the cervix (which is a sarcoma)

Principal Diagnosis: Same
Secondary Diagnosis: Mild Asthma

Reason for Hospitalization: uterine/cervical adenocarcinoma and trachelectomy for malignant spindle cell of the cervix.

Significant findings:
- PTSD: given valium post-op
- Regular diet post-op, started to eat on Post-Op Day #1 evening
- Vaginal Pack in until Post-Op Day #1
- Extreme pain post-op (given morphine, oxygen)
- Fever post-op: 39.3, given IV antibiotics, discharge temperature: 36.3 (morning)

Condition of patient at Discharge: stable
Home stay Medication: Percocet, Colace, hot pad
Physical Activity: nothing in the vagina for 6 weeks (no douche, no tampon, no intercourse), only mild walking at home in Post-Op week, no bath for 2 weeks Post-Op, slow walking around outside for < 1 mile/day Post-Op week 2, OK to attend medical appointments in Post-Op week 3. Require 24hr presence for Post-Op week 1 to watch out for infection and heavy bleeding. No heavy lifting for 4 weeks Post-Op, no exercise for 6 weeks Post-Op, mild exercise on week 7 and week 8 Post-Op. Resume normal activities Week 9 Post-Op.
Post-Op Follow-up visit on week 3 Post-Op

Rehabilitation Potential: Good. (thank God!)

****************************

Really nice to be back home. I come home and find dinner and Amy ready for me. I sleep all night (minus a few interruptions for pain killers) wake up and find Nathan and breakfast. I sleep all morning, get up and find Othman and lunch. I sleep all afternoon, get up and find Kim and dinner. I have dinner and find Celia with chocolates and a nice movie (Super Size Me...do not watch prior to dinner...). I go to bed, wake up and Celia's ready for breakfast. I go to sleep, wake up and Sarah is ready for lunch. I go to sleep, wake up and Nathan is ready with appetizers and wine, I am resting up and Nathan and Lynn are cooking a nice cheese fondue...This is what I call LIFE!

Getting Ready For The Hospital

Two people (my therapist and a friend) have suggested another theory, not the control freak one. This also got me thinking.

If I am to pick a name for this new theory, I think that "Denial" would fit quite well.

Here are pieces of evidence scattered around the place that seem to support this theory.
- I seem to be wanting to justify the fact that the magnitude of the problem is small
- I seem to be putting off decisions, and hoping that they are made for me (eg, trachelectomy without clear margins would shut down Option 2)
- I seem to desperately identify reasons why Option 2 is not risky (why would doctors be willing to pursue a course that entailed significant danger)
- I push back any "definitive" treatment to the last minute (Oncologists telling me that my cervix had to go now and my asking if it would be possible to wait through a pregnancy. We did not continue down that path after they replied that it would be suicidal. Or my choosing the later surgery date for the trachelectomy on the emotional grounds of keeping my cervix a bit longer - Hey, I care about my cervix!!)
- The fact that I am making frequent appeals to authority (various articles and studies I keep looking at) could mean that I just want to defer to others when it comes to decisions
- I am making constant requests for input, advice and support - and if I were a control-freak, I would display a solid/self-confident facade

These people noticed that I seem to be trying to take the minimum action possible (I feel that I have been quote proactive...) which would suggest denial, avoidance and self-deception more than control-freak. I guess that this is something else that I will ponder over. It feels strange to deny a reality by telling everyone about it...

On another note, I have been referred to a neurologist to investigate some headaches that I have been having for a little while and which don't seem to be linked to any medication

Before I head out to the hospital, I have to:
- Get some boat stuff ready so that the crew can keep going and get ready for the next event
- Do some ironing which I didn't finish last night. Better have some bed linen ready for my "guests"
- Go through my mail (medical bills for the most part...)
- Do some grocery shopping that I don't have an empty fridge when people turn up. Would be really bad for the reputation of the French
- Call the hospital to find out about the exact time of the surgery and call my "chauffeur" to let her know
- Feed the cats a nice pile of wet food to celebrate their 3-day emancipation
- Prepare 10 pieces of paper with numbers from 0 to 10 written on them so I can display the pain level evidently on the bed. Will save me from having to answer their questions all the time.

Thank you for all the good thoughts, prayers and support that you have been sending me! I feel so spoiled! I will take all of this with me to the hospital!

I was asked about entertainment options by my "home helpers"

"- I don't have TV but I have a computer/video projector and DVDs + a Netflix subscription. Feel free to bring your favorite movie if you like Tom Cruise.
- I have a ton of CDs and an iPod. Feel free to bring CDs/iPod/iPhone if you believe that my taste is a bit odd...
- I have a pack of cards and a few games, including juggling equipment...Feel free to bring your own if you actually want to win
- The cats are professional entertainers. Feel free to bring a mouse or a dog as designated volunteers
- I have books, magazines and comics (well, not very many) but feel free to bring a copy of The New Yorker as I don't have the latest issue
- I will have drinks (esp. wine) but feel free to bring any of the most current substances
- I have a piano if you are so inclined but feel free to bring a set of drums if the neighbors are annoying to you
- I have a phone if you'd like to chat with someone else after you realize that it's impossible to have a serious conversation with me

If you are still bored after all of the above, we can come up with random indispensable tasks such as measuring the perimeter of my living-room with teaspoons."

Cats have food and water. I have some clothes on. Ready to go.
And frankly this "you need to have someone with you for 24hr for a week after you get home" sounds like cheap outsourcing to me. If I need 24hr care, shouldn't I be in the hospital? The only requirement for these home nursing people is to be able to make a phone call. I am sure that we can find hospital staff to do that.

Talk to you whenever I get an Internet connection going again. God bless.

Dilemna...

Interesting Powerpoint on Sarcomas.

If you don't have time to read all hundred of slides :) You could read slides 6, 102 and 103.
Bottom line:
Sarcomas are rare tumors of the uterus
Adenosarcoma is the rarest type of uterine sarcomas
It seems to be lower grade than carcinosarcoma (eg won't spread as fast which is probably because the carcinosarcoma must have some of the "carcinoma" feature, eg one tumor in one site and spread fast from there)

And a much simpler powerpoint (pretty clear and nicely laid out, with pictures!!)
Although a bit dated

General note for all types of uterine sarcomas:
Limited data
Rapidly growing (doubling time is 4 weeks)
tend to be increasing

"

Specifically for adenosarcomas:
"- both malignant stromal and benign epithelial components
- a significantly increased occurence of this tumor (Seidman et al, 1999)
- present as polypoid masses"

"Because of their rarity, uterine sarcomas are not suitable for screening."

"Surgery is the only curative therapy for uterine sarcomas (2003)"
(with or without adjuvant therapy)

"five year survivals (2001) across all types of uterine sarcomas
Surgery Alone (46%)
Surgery and Radiotherapy (62%)
Surgery and Chemotherapy (43%)
Radiation Alone (8%)"

Surgery + Chemo + Radiation seems to be working better for other types of tumor.
Author notes that there isn't enough sample to really use these numbers (esp across different types, grades, etc...)

"Three-year local recurrent rates
- No adjuvant treatment: 62%
- Whole pelvis external beam radiation therapy: 31%
- Chemotherapy alone: 71%"

But people don't agree. Massachusset General thinks that adjuvant therapy has no impact on recurrence rate, other studies showed that cure rate was similar for those treated with surgery alone or followed by radiation, regardless of the stage of the disease.

"Recurrent Disease:
- Most relapses occur in the pelvis, followed by lung and abdomen
- Currently no standard therapy for patients with recurrent disease"

Only for uterine sarcomas (post-aggressive treatment):
"The 5-year survival rate was 33% for LMS, 38% for uterine MMMT, 57% for ESS, 69% for adenosarcoma and 30% for ovarian MMMT."

http://www.diva-portal.org/liu/abstract.xsql?dbid=4990

But from 1999...I am told that for adenosarcoma, it probably holds since I am told that there was no research, no progress and virtually no additional data between 1974 (year of discovery of adenosarcoma) and now...

And an article about an adenosarcoma survivor

http://www.wweek.com/editorial/3046/5515/

In this case it started in her abdomen, but looks like it's the same type.

and highlights below:

"June: During a follow-up exam, her gynecologist finds a hard mass. A CT scan shows a rare aggressive cancer, called adenosarcoma, in her abdomen spreading to her lungs. She begins chemotherapy in mid-June. Doctors discover her esophagus is bleeding (attributed, in part, to heavy use of anti-inflammatory drugs to combat back pain) and her kidneys are failing (from the chemo)."

"
Now you didn't go through chemo with the breast cancer, just radiation.

With the breast--right. Because the cancer hadn't burst out. But what I have now is a sarcoma, which is very, very different, because it's very aggressive, very invasive. It can spread very easily. And when they discovered it, they thought they took it all out, but then they found out that it had actually grown.

JS: And this is a pretty rare form of cancer, right?

Yeah. You go on the Web, well, there's hardly anything on it. In books, they don't even discuss it. There's maybe 12 cases in the country. There are a couple of clinical trials--very, very small ones. And the prognosis is God-awful. Chemotherapy doesn't help. Radiation doesn't help.

You say the prognosis is awful. How awful?

Some people live two years. Some people die before the two-year period. So it's really not terribly good. The oncologist asked, "What's your goal?" I said my goal is to finish my term. I said to her, 'You keep me alive until Dec. 31."

Brilliant!

Had a really nice weekend. Most of Saturday was spent doing housework and various sailing-related shopping. Ironing, laundry, cleaning up cat mess, mail/bills, reading, etc...I find this routine very soothing. At other times, it would probably annoy me and I would want to expedite it as quickly as possible. Now it's a solid, repetitive set of activities that just looks like normality...Life as usual! I also went out for a run. I hadn't run in a long time (last surgery + IVF cycle kept me off exercise for a little while) so I went out for only 30 minutes but up three hills :) Very sore legs the day after :) but I am definitely going back tonight. This is one of the things that I miss most! (not the sore legs, the exercise!)

Sunday was a double-handed practice on the boat. Well, it was supposed to be a race but we lost the gas cap for the engine and couldn't beat the ebb to go to the start line. It was a lot of fun. Much more active than with a full crew since two people have to do the job of five but so cool! I managed to do a quadruple wrap around three different lines (forestay, topping lift and pole cables) on my second spinnaker gybe. No one got hurt and nothing got broken :) When I am on the boat, I have to pay attention to really short term items, whatever is happening at that time so it takes my mind off any other problems! I find it very relaxing...even though it is physically and mentally demanding! At work, I am constantly tempted to check out some new articles, visit some sarcoma-related message boards, follow a link that some friend might send...So I can't concentrate on much else than sarcoma...

The other problem with work is that I really can't do as much as I used to, and even focusing on top top level priorities does not seem to be enough. On the one hand, it is useful to meet people and I really enjoy doing my job. On the other hand, it is frustrating because I can't really get excited about a project which competes in my mind with other worries. And I see all these cool developments without realistically being a part of them.

***********************

OK...I wanted to continue a dialogue here. I am wondering if there's anyone else who thinks like me or if I am hearing things that no one else can hear. I will still go ahead with the trachelectomy, there really seems to be no downside in doing this and it is the most urgent thing that needs to happen.

It really seems to me that this isn't such a big deal given that it was found early and that the most aggressive tumor has already been taken out. Otherwise I guess that I don't understand why doctors would even think about option #2.
It sounds like all doctors agree that ultimately, I will need a hysterectomy. There also seems to be some sort of consensus around recommendations, in that option #2 may be a viable option, and will allow me to go through a pregnancy.
When challenged with a more aggressive treatment view, Oncologist #2 replied "I am quite willing to be more aggressive but it may not be necessary at this time." It sounds to me as if she was worried that I would do something definitive that is not warranted (yet). She also changed her opinion from "hysterectomy ASAP and probably radiation" to Option #2 after she discussed my case at tumor board.

What am I missing?
Any other oncologist you know who would have a different opinion?
What is your opinion? Am I being over-optimistic?
I have shared all the information I have gathered and gave as accurate a transcript of my conversations with doctors as my memory allows me to.

Here are some pros and cons that I have picked up through research/chats with oncologists.
Let me know if I am missing anything.

Cons
- Sarcomas are tricky to treat because they spread without doctors noticing.
- It's a rare disease and there is no case history so treatment is experimental
- Chemotherapy/radiation is not proven to work (because there isn't enough data to find out what works)
- there is no standard therapy for recurrent disease (eg, officially recurrent adenosarcoma is incurable)
- Mine is listed as "atypical" sarcoma. Not all pathology labs agree on the diagnosis and type of cancer
- Seems that risk cannot be quantified
- Final staging diagnosis/prognosis can only be established after biopsy of the uterus (and removal of the uterus)

Pros
- Out of all the uterine sarcomas I have read about, adenosarcomas have the fairest prognosis. (LMS has a poor prognosis because it starts deeper in the uterine tissues and is closer to the extra-uterine region, and it spreads faster to that area. MMMT are really bad because they have both carcinoma and sarcoma features. ESS high grade spread so fast that chemo can't keep up with it (and human bodies need time to recover from each chemo cycle). Granted, there is little data (some 12 people over 20 years, or some 3 people in Scandinavia) and I also sometimes bump across an article that talks about how aggressive the disease is.
If it was that aggressive, I don't understand why doctors would support the "wait" option
- All doctors I spoke to entertain option #2 (trachelectomy now, pregnancy, then back to option 1 of hysterectomy with maybe adjuvant treatment) with close monitoring so they can manage the disease
- Most sarcomas start as low grade (eg low mitotic count, hehe, this means that the growth rate or number of new cells is lower than for high grade tumors. Low grade tumors have a mitotic count that is already erratic, eg, they fall in the malignant categories because this growth rate is higher than what it should be, but it is not as aggressive as it could be. The grade increases with the size of the tumor as it is an exponential growth curve) so don't grow as fast as for example carcinoma in early stages (apart from some even more abnormal ones)
- Most aggressive part is removed - the cervix where many other cancer cells have been confirmed will be removed on Thursday
- Scans have shown no other visible growth in the uterus/ovaries after polypectomy and main tumor removal.
- If after the removal of the main tumor, this was such an aggressive cancer, I don't think that even the IVF cycle would have been considered.
- Because it is so difficult to detect, a lot of people find out about it only in more advances stages (it could still be a stage I but an already bigger tumor, hence a more aggressive sarcoma). So the dire stats could well apply to these people but not to my case.
- If the margins are not clear after the trachelectomy, there will be no more Option #2
- I did not come up with option 2 in the first place; Oncologist #1 brought it up first as an option. If he had said, hysterectomy and no discussion, then I would have accepted it. So Option 2 is a physician's suggestion!

Here's a friend'ss opinion, substantiated by arguments, which he has agreed to share on this blog.

When I forwarded some positive stats (fair prognosis) from a recent article (2007)
"The numbers are "tentative" because of the large number of relevant factors compared to the sample size. They are not "true" or "untrue".
"This excerpt is clearly taken out of context. They say that their study examines THREE cases. Based on that, you can't call distant metastasis very rare. So either you've taken something out of context or they're stating invalid conclusions. I'm not saying that you've deliberately pulled out a selective quote, but I assume that this is an article abstract or something."
(article available at:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17292949&query_hl=1&itool=pubmed_docsum)

When I say that I think that this whole thing is "no biggies"
"Your last sentence is one of a few lately that I am certain ALL of the doctors you have spoken with would disagree with you about. They have used words like "reasonable" which take your own preferences (and their own lack of certainty as to what is going to happen) into account. There's a reason that there would be NO doubt as to the appropriate treatment if you were 50, or even 35 with 3 kids and no desire for more.
You are considering a very serious gamble, and no one knows the odds.
Remember the phrases like "patient understands the risks"? They may not know exactly how high the risks are, but they are NOT saying that the situation is "no big deal".
[...]
"Your doctors are still arguing about exactly which disease it is-doesn't that scare you?"

Debating whether or not, it has spread to the uterus (or started there which I found hard to believe)
"A polyp starts bleeding in your uterus. It is cut out. Some labs identify it as cancerous.
A few months later, you have a definite diagnosis of cancer in your cervix. The type is open to a bit of debate, but the most likely candidate is a cancer which in known medicine has always arisen first in the uterus." (documented as having started in the cervix in only 2% of the uterine adenosarcoma cases...given that there are some 12 cases overall, it's not much :))

On my arguing that there is time because growth rate seems to be pretty low
"Timing is linked to growth rate and metastasis, but we don't know which clock we're syncronized to. I also don't know whether the new seeds start out the least malignant level again or whether they are more dangerous. The very low probability of survival if the cancer recurs even once sounds to me as if the seeds are quite dangerous to miss in the first surgery."

Describing option 2 Vs option 1:
"they want your uterus out ASAP, and are negotiating on whether it gets used once first."
"It's not the growth that scares me. It's the hopping/metastasis, and the fact that it likely already has done so. If they didn't think it was spread around yet, then why would they be negotiating only timing and not whether a hysteresctomy was necessary at all? To beat the recurrence, it sounds like the only way to win is to cut one step ahead of the tumor."

And his last comment on the subject of my positive filtering:
"I'm not saying that option 1 makes the situation "no big deal" from a risk point of view either.
From what I've seen, I believe that there's significnt danger either way, and that option 2 is considerably more dangerous than option 1."

Another friend made a very interesting remark in her e-mail to me. She is also a cancer survivor so this may be something that she's experienced.

She says that she can understand a portion of my agony, and that my desire to have a baby is linked to the standard "human" reasons (birthing experience, genetic perpetuation, biological need, etc...). However, she wonders if by deciding to have a baby, despite all the health issues, I am not trying to feel/exert control over the situation.

She believes that cancer is all about loss of control. Cells behave abnormally. Our body cannot dictate the pace at which they multiply, our body cannot kill them (or more exactly, cancer cells do not commit suicide like well-disciplined cells). Our body is not in control. We are not in control physically. By making decision and by feeling in control of those decisions, we may regain a sense of mastery over the disease, even if it is an illusion.
This friend recommends to surrender to this reality, somehow trust that whatever happens happens for a good reason and believe that I will be made stronger through this experience.

I will ponder over this.

I am still struggling because Option 2 was a physician's suggestion so it appears to be OK to me, as if it was a reality I could accept. In a way, I think that I want to go through the trachelectomy to see if the decision will be made for me. If the margins are not clear, Option 2 disappears and there is no more struggle. If the margins are not clear - which may mean absolutely nothing in the case of a sarcoma, then I will challenge again this approach.

Another chat with the East Coast Oncologist - here are notes from that conversation (third-hand notes so hopefully not too distorted)

Oncologists #2 doesn't agree with the other labs on the cancer type. has come up with an alternate diagnosis.
Here's what this oncologist has to say about them.
peripheral nerve sheath: without a lot more data, it seems unlikely as such a tumor is pure sarcoma. Adeno means that it starts in the glands (endometrium, colon, prostate, lung, etc...). Peripheral nerve sheath tumor would be starting in supporting tissue (mesenchymal) and not be expected to demonstrate adeno characteristics.
spindle cell tumor = this is also sarcoma so same recommendations as with adenosarcoma should hold.

In short, both of these diagnosis are more sarcoma-like than the adenosarcoma. In the adenosarcoma, it's the sarcoma part that's evil. The adeno portion is the benign portion. This oncologist doesn't believe that classification is as important as the fact that there are sarcoma features present. This is what makes it mean! Adenosarcoma is typically hard to diagnose because it is heterogenous/a mix of benign and malignant and has this hopping habit, hence creates perfectly healthy areas. So if pathologists look at an ambiguous sample, they might find different diagnoses and recommended treatments.
If there's any questions about the pathology, best pathology referral agency for someone your age (military age) is the Armed Forces Institute of Pathology (AFIP). They have an absolutely
incredible reference file on people late teens to early 40's. Little doubt in his mind that they're the best in the world. So I could send some new tumor tissue sample to them.

About the "Big Deal" question
Everyone will agree that "this isn't good". Some might be pessimistic, some more optimistic but everyone should agree that it is serious.
He still maintains that in his opinion, the best chance of survival is aggressive surgery. The more variations on the sarcoma theme he hears, the more convinced he is of the aggressive surgery.

About "Why would doctors recommend an unsafe treatment?"
He thinks that doctors can be scared of making the conservative (safe) recommendation and having an angry patient later. When situation is less clear, the doctor is less likely to really come down solidly on one side.
He can't say that six weeks is an incremental risk but he thinks that six months certainly is.

In his case, he prefers to give an initial diagnosis and options when the patient is accompanied by a relative/friend/social worker/etc, because the patient never hears it all. The bigger the group the better. He feels that it is hard for both patient and doctor to be neutral as doctors are influenced by patient's desires which detract them from being objective.
He believes that I am having a substantial influence on my doctors' recommendations. From where he stands (granted far away), he doesn't think there's a whole lot of objectivity going on here.

Also, in his opinion, doctors have signalled to me that they disapprove.

About the trachelectomy approach
Removing the cervix = a good start but not enough (especially after he saw the recommendations and various diagnosis from the tumor boards). It may be possible to preserve the ovaries and physicians should try to do that. Other than that, he would really recommend the big surgery, ASAP. If I were a close relative, we wouldn't be having this discussion (eg, hysterectomy would not be questioned).
He stated that life _WAS_ being jeopardized by delaying surgery, that even with definitive surgery, survival was not guaranteed. There is no doubt in his mind that this is the best shot at survival I will ever get.
He believes that I still have a chance to be cured and survive (past surgery and potential adjuvant therapy, there is no known cure for this type of cancer) and he wants me to have the best chance.
He added that if I wanted to sacrifice some of that chance to have a baby that I might not be around for, that's my prerogative. I should know that a serious risk to my life is involved. It sounds like no one can say what kind of deal, but "no big deal" is definitely not applicable.
Unfortunately, this is a statistics game where there's no way to plot me as a specific point on the graph because of the lack of history. To give me an idea of this "unquantifiable risk", he used another cancer for which there is a lot of data available. With a melanoma (most deadly cancer type), a wait of 2 years would double the chances of being dead (which probably don't start very low in the first place). Sarcoma is worse than most other types of cancer so he's not very optimistic about the number. Adeno would give wiggle room, but sarcoma does not.

When both features (adeno and sarcoma) can be seen, it probably is a relatively primitive cell that turned malignant. Apparently (and there - this is Nat talking - I don't think that I understand the following sentence...If it were in Chinese, it might be easier) Mullerian duct is primitive, undifferentiated tissue that develops into the genital tract, which is why we see the adenosarcoma characteristic.

His Bottom Line:
1) I should never go to one of these appointments alone. There should ALWAYS be a second set of ears.
2) Any kind of stalling is a mistake.

My Next Steps
So, I will still go through the trachelectomy because I believe that there is no downside, potentially upside (negative margins so no more struggle) or more information as more sample.