Good Sarcoma Resources!

http://www.liddyshriversarcomainitiative.org/Sarcomas/sarcomas.htm

The Basic Question (the Basic Answer as we all know is 42)

Because so few people are aware of sarcoma, many of them will ask you, "What is sarcoma?" Some simple "Sarcoma Facts" are listed below. We have used them in numerous conversations with people to help address that question.

What is sarcoma?
It is a cancer of the connective tissues, such as nerves, muscles, cartilage, joints, bone, or blood vessels. It can arise anywhere in the body, frequently hidden deep in the limbs.

How prevalent are sarcomas?
About 1% of all adult cancers are sarcomas.
Between 15-20% of all children’s cancers are sarcomas.
There are hundreds of thousands of patients and their families struggling with sarcoma world wide

How are sarcomas treated?
When possible, sarcoma patients have surgery to remove the cancer. Surgery is often combined with chemotherapy and/or radiation.

Why are sarcomas dangerous?
They are often misdiagnosed. Sometimes they are thought to be sports injuries.
When they are diagnosed, they may be large and difficult to remove surgically and they may have metastasized.
Many sarcomas resist current treatments.

And treatment information: (note that the most aggressive recommended treatment that I have received, mainly because there is no data is: hysterectomy, removal of lymph nodes for biopsy, post surgery radiation and chemotherapy - even though it seems that they don't really know whether that's a good idea or not)

And from our friends the Brits!

http://www.cancerhelp.org.uk/help/default.asp?page=4568

And an incredibly useful statistics page with no stats at all!!!!
http://www.cancerhelp.org.uk/help/default.asp?page=4569

Oncologist #3 and Tumor Board recommendation

Hello hitchhikers to the galaxy,

I just met with Oncologist #3. I like her a lot now. She's extremely funny, knowledgeable and I think very human. She seems to truly care about her patients. She told me a lot of patient stories. She knows their nationalities - and she seems to specialize in international cases-, she has followed them even after treatment, etc...

Before I start, I must report that I have lost 1 pound since my last doctor visit (on Friday) so I am actively working on eliminating the IVF waste :)

So, she said that she has talked to their pathologist who did take a look at the slides. He also happens to be a sarcoma specialist. Here's what he said:
"Hmm hmpf hooooom prfprf"

(I am not kidding, that's exactly what I heard)

I looked down (I was sitting on the exam table) at her with a face that must have displayed a cocktail of amusement, worry at a potential sudden declaration of madness and surprise. Since this sentence had not been spoken in any of the languages I master or slaughter, I asked for an English translation. The oncologist kindly obliged.

-"This is the rarest thing that he has seen in his entire career. It does look malignant, and it has aspects of the sarcoma but it also has some weird additional things going for it. The pathology report thus decided to call the lesion "atypical adenosarcoma". The Pathologist was so fascinated by the specimen that he's decided to continue to mess up with it, just for fun. Apparently, this made his day. I will ask Oncologist #2 to send him some more tumor tissue after the trachelectomy as a Thank You gift.

So the first piece of news is something that we have by now grown accustomed to. This is a very rare case, and a super weird looking tumor.

Armed with such precise information, oncologist #3 and the tumor board looked at the literature on adenosarcoma. That was fairly quick. No study fits my case.

Finally, they went on discussing my case....and the winner is...(drum rolls)
#1 complete hysterectomy with removal of the lymph node
#2 if the patient is aware of the risk, the board feels comfortable with a trachelectomy now without lymph node removal - and if the margins are clear, wait for ~ 6 months for tissues to heal, do an MRI. If the MRI does not show visible signs of tumor in the uterus/ex-cervix area, become pregnant. Ideally immediately after the scan. oncologist #3 suggested to wear a short skirt and invite a partner at the MRI session, so I could conceive within minutes of the results. Then go through a pregnancy - she feels confident that with the right level of care, I would have up to 70% chances to bring a baby to the 32rd week, which would be what I should strive for. Then wait for recovery and tissues to heal (probably another 6 months) and do a complete hysterectomy with removal of the lymph nodes. If the margins are not clear, then a hysterectomy at the same time as the trachelectomy (or shortly thereafter).

I asked what the risk was. She said that she couldn't tell me and didn't believe that anyone could because it is such a rare case within a rare disease family. The scans are clear and it looks like the tumor did form in one place, strangely enough but she won't know for sure about other seeds. The fact that they feel comfortable with a wait and two check up milestones. So basically, I need to be made aware of a risk that can't be quantified by anybody.

Recurrence rates (usually top of the vagina) after hysterectomy are high (over 40%, in some sarcomas, over 50%) so the risk of relapse does exist but she is not certain that waiting prior to the hysterectomy will affect this.

So she said, "I think it's OK if you have clear margins and a clear 6-month MRI to try a pregnancy. Just don't go anywhere during this pregnancy. Pop the baby out and blow this thing back into space. But then, I may be wrong. Oncologist #1 may be wrong and Oncologist #2 may be wrong. We will only know 5 years from now if you picked the right one..."

She added that there is currently no standard therapy for patients with recurrent disease. Typically, these patients are entered into ongoing clinical trials.

Upon leaving oncologist #3 said "It has been a pleasure working on your case. And just to make sure that the lawyers heard it, we do recommend a hysterectomy ;-) But I think that you can have the joy of a beautiful baby before that happens. If you ever have more of these really interesting situations, please come and see us again. And if oncologist what's-her-name breaks her leg or anything like that between now and March, I have a very very sharp knife..."

and Oncologist #2 reaction below

" My recommendations are similar for the most past - how do you think you would like to proceed?"


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


I'd like to proceed one step at a time. Let's do the trachelectomy and wait to see if the margins are clear, if that is all right with you. It would be wonderful if I could go through a pregnancy but it looks like this doesn't have to be decided now.

After the hysterectomy, I think that I would like to be very conservative/aggressive."

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

" as you said - let us take this one step at a time. "

Confusing...

A new piece of evidence...

...that I am a star :)

From a friend who is a physician:
"I don't have any doctorly words of wisdom because I have never heard of adenosarcoma of the uterus"

This is for the nice part. The trouble comes from when my specialist confuses me...

"Yes I agree but our pathologists feel very comfortable. The radical treatment applies in the case of trying to clear all potentially microscopic metastatic disease but in this case there seems to be very little potential for that. I am quite willing to be very aggressive if you would like but that may not be necessary at this time."

Then, to support her opinion, she attaches the pathology report that I had seen after the first surgery (which indicated another type of cancer). Now I just read what it says next to the DIAGNOSIS line, as "diagnosis" is the only word I understand in those reports.

Sentences like "These cells are CD34 positive and focally S-100 positive." don't mean much to me frankly; although in this particular case, I am glad to know because I had been wondering about that.

Next to diagnosis is written "Uterus. Polypectomy" which describes the first surgery. This was at the time when no one could agree on what the problem was because there wasn't enough sample to make an accurate diagnosis (apparently, common with adenosarcoma since half the tumor is benign and the other half is malignant, it is often mis-diagnosed, even with biopsies)

The second pathology report that I was shown after the 2nd surgery clearly states "malignant Mullerian adenosarcoma" on the diagnosis line...next to which the words "Conization of the cervix" were written, This is not the report that my oncologist has attached...

I emailed back that I was confused (explained why) and said that I would call her. I wish all these people could speak plain English...
"I am confused. I thought that this was the initial pathology report (after the polypectomy), not the second pathology report (after the conization). The pathology report I was shown states "Mullerian Adenosarcoma".

Her response this morning: "I will look into that as I know we saw both the cone and the polyp."

tbc...

Work

I am more involved in work again - I actually get to do a lot of what I really like. We meet every week with my manager to agree on the priorities for that week and we cut it down to what's realistic for me. Feels just like my life. Identify the priorities and ONLY spend time on those.
It makes you feel incredibly clean...

Still, I find that the emotional up and downs make it hard to be a reliable worker. The news from the radiation oncologist and the East Coast oncologist made me want to spend more time researching, talking to more people. I now would like to forward their messages onto my oncologist to see what she has to say. So this was not planned and it will take time. And obviously, I am fine with this. Between my little work project and my life, I haven't spent much time revisiting the priorities. Certain things just seem futile in this light :)

My company has been SO supportive. No expectations put on me, no pressure, actively engaged in a dialogue with me to find out what would work best, a million offers of help from everyone in my team including those in overseas offices, people jumped in to take care of the most pressing issues. I feel so incredibly lucky!

More Oncologist Advice

Hello Klingons,

I have just talked with the retired radiation oncologist. I was very touched by this conversation. He was an extremely sweet person who said "please make sure that you speak loud enough so that I can hear you. I am 85 to quote only the major health deficit."

He said that he was going to talk to me as if I were his daughter, adding that if he learned that a 32-year-old daughter would have to have a hysterectomy, he would be very sad, but he would be devastated if he learned that this same daughter died. There was a lot of emotion in his voice. He said that he would be willing to talk to me all day if that's what it took to make me change my mind. He also said that I should keep talking and talking and talking before I make a final call on this. He said that as a physician he has dedicated his life to preserving life. As such anything he is going to tell me is what is the best course of action to preserve life in his opinion. NOT to preserve organ structure. It was a long conversation (he did most of the talking). Here are the main points.

- Sarcomas are very nasty beasts. Adenosarcoma is among the nicest of them but still a very nasty beast
- The reason why they are nasty isn't so much because they are aggressive (although they all grow super aggressive after a little while) but because they are resistant to a lot of the regular cancer treatments, so prognosis is very poor.
- Soft tissue adenosarcoma is a very rare tumor and there's virtually no data out there. The good news is that you get a lot of specialists who want to take a look at the case, the bad news is that they have no data to look at to make decisions.
- Sarcomas usually start as low grade (because they don't form a tumor then grow it, they migrate as individual cells to nearby tissues). However, after a while, they all become high grade (or rather, the grade becomes irrelevant) because the size of the tumor now determines the growth rate.
- Sarcomas first spread around nearby tissues with the jumping habit (in my case, that means that depending on how much time it's been there, there is a possibility that it is in the following area: uterus, cervix, Fallopian tubes, ovaries, vagina and vulva, even though the furthest of those have a much lower chance of already being affected. I mean, an inch for a microscopic cell must be like a light-year for us). Then, they are very eager to find a blood stream and they first metastase through the blood stream. Only at the very late stages will they metastase through the lymphatic system (that is based on known history).
- Recurrence rates do not seem to be correlated with the grade but they are with the type of treatment (eg the more tissue you remove, the less chances the tumor will come back). Still, they are among the cancers with the highest relapse rates just because they spread and seed without anyone noticing.
- This physician doesn't actually think that what's in the cervix is the primary tumor. His strong feeling is that it did start in the uterus and is spreading from there. He also said that for all he knows, it could have started in the ovaries.
- He believes that tumor boards answer the question they are asked. In this case, he feels that the question they were contemplating was "how can we maintaing max organ structure", not "what is the recommended course of action for uterine adenosarcoma. He said that physicians find solutions for their patients and can do pretty much what the patient wants them to do, even if it is not the right solution to preserve life.
- He doesn't care about which grade it is. He said that the grade only affected the rate of growth at the beginning. He doesn't change the jumping habit, in fact it is a product of the jumping habit and as far as he knows, there's so little data and this is a cancer that is SO HARD to treat if it is not caught by surgery that anything that's not a hysterectomy is too big of a gamble as far as he is concerned. He said that even for low grade sarcomas, there's no way of knowing how long they have been in the body and for this particular sarcoma, how long it will take for it to become more aggressive. He said that with a carcinoma, even an aggressive one, he would be more comfortable with different approaches because they are known entities. Not with sarcomas.

His main points were
- There is no data out there to make any decision. Be as aggressive and as conservative as possible in your treatment options
- Do not gamble on your life. It's not worth it. Because there is no data, it's a gamble
- Cancer treatments and research have made a lot of progress but NOT around sarcomas.
- This type of sarcoma is rare among the rare and one of the most determinant factors for treatment efficacy in terms of how spot on an oncologist's opinion will be is case history...there is no case history.
- This tiny little thing can kill me - and if I do nothing will kill me. The only question will be how long it will take. This type of sarcomas do not kill people by doing damage locally. They kill people because they spread without man knowing how to contain them and without telling anyone about where they go, thus seeding loads of new tumors all over the place.
- He thinks that if I don't do a hysterectomy now, I will live in hell because every day I will wonder when and where it will relapse
- He understands the emotional dilemna and how hard this decision is, apparently much harder than with patients that are told, you are just going to lose one of your feet. He still thinks that a radical hysterectomy right now is the right thing to do to preserve life. It is not a guarantee but the best shot I will ever get at a cure.

But then of course, he said that only I could make this decision and that I should stop by and say 'hi' next time I am on the East Coast. I'll be sure to bring a few of my pathology slides with me for his living-room.

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

I also called the oncologist who is currently treating a patient with recurrent uterine adenosarcoma (it recurred after a hysterectomy). He is not a GYN oncologist so he also asked the GYN onc. department and did some research. Here's what he had to say:

- There isn't a lot of data
- Treatment options are limited because everything is experimental. It's not that chemo doesn't work, it is that we don't know what drug(s) to administer. Adjuvant radiations may work better.
- Consensus is toward the hysterectomy - however, if it is really an early tumor, starting with a trachelectomy, esp. if the Stanford expert has voted OK - could be reasonable. He feels that he doesn't have enough data to make that call.
- He thinks that it's OK to do a trachelectomy, even if soon after, it is followed by a hysterectomy. It shouldn't spread the cancer further if it is performed by a trained oncologist. The main risk is related to anesthesia but he doesn't think that it is very big for someone my age. Apparently, I am more likely to get hit by a car tomorrow than to suffer brain damage from this operation.
- Doing the trachelectomy shouldn't do any harm. It will also help the oncologist confirm the staging and see if she sees anything wrong with the uterus when she goes in, or if it still looks pretty clean. They will also send the tissue to pathology labs so there will be a lot more data available.
- Waiting for one year is a very long time for a cancer, even if it is in early stages. It was already big enough to show up on scans (and fall into the > 2cm category)
- He would still recommend a hysterectomy now - he said that it is my best chance of survival.
- This tumor is heterogenous so he wouldn't bet on knowing the grade by just looking at a sample. Some of those cells may be low-grade, some may be high-grade
- Sarcomas are really hard to treat if surgery doesn't remove them. After a relapse, prognosis is usually very poor. If it spreads outside of the uterus, even if it doesn't really metastase, eg, just spread by tissue hopping, the prognosis would be much poorer.
- He is giving chemo now to the lady that relapsed. He has no idea whether or not it will work. He couldn't find any suggestions anywhere as to what treatment would work best.
- He doesn't believe that removing both the ovaries is necessary at this point. He would like the oncologist to perform the hysterectomy abdominally so she can take a look at the ovaries and see if they look weird. Or perhaps remove one of them to send in for a biopsy. It is also possible to slice out a small section of an ovary, freeze it and use it for biopsy. However, given the dual and heterogenous nature of this type of cancer, it may not provide enough sample.
- Since it is so rare and since there is no data, he thinks that I am bound to hear many different opinions. He doesn't believe that they can all be founded since there is no way of knowing how this cancer will behave. Did I say that in his opinion, a hysterectomy is the safest way to go?

Bottom line, no harm done with a trachelectomy. Hysterectomy is safer. So I can follow my plan of:
- challenge my oncologist with those opinions
- get the city hospital tumor board opinion
- go for the trachelectomy
- discuss next step after pathology results and surgery info

More Decisions...and info

Hello First Class droids,

I wanted to share a few other pieces of information and associated questions in my mind.

- A breast cancer survivor told me: "Really, just get rid of it and be as aggressive as possible. They thought they had all of the bad cells from me too, and they used dye and everything, but less than a year later, it reappeared. "
- A friend oncologist wrote to me: "I am not sure where you stand with surgical/fertility decisions. I, though, pause and worry about you delaying your definitve treatment for too long."
- A close friend told me tonight (having asked an uncle who's an oncologist who's read up about adenosarcoma and who talked to GYN oncologists - and I believe one that's treating a patient for adenosarcoma, and a grandfather who is a retired radiologist, working with cancer patients): "Both said that anything but a hysterectomy is too big a risk at this time. Sarcomas don't respond well to traditional cancer treatment, so if they spread or come back, the prognosis is very poor. They say that I can forget about radiation if she doesn't get it out now, that surgery is my best shot at a cure. They haven't looked at my pathology slides but here's the thing, they don't seem to care..."

The main reasons that they gave seem to be:
- It's so rare that there's no data to base any decision on
- The "Sarcoma" aspect - which I already told you about...it's the jumping thing, not sure if it has a name...so the risk of the cancer spreading looks too high in their opinion.

And if I were my oncologist's daughter, I would be sterile by the end of this month.

I can't believe that my oncologist is suggesting to me an option that would be obviously wrong.

Anyway - I thought that this was a tad worrying. I will chat with these people tomorrow morning, chat with my oncologist about those opinions to see what she has to say (since the tumor board seems to be just fine with the idea of a trachelectomy right now), hear what the other tumor boards think, probably go through the trachelectomy since new info will be available after that, and then decide about next steps.

I remember my oncologist's words on the phone after the tumor board meeting: "we have discussed your case at length during our tumor board meeting. For quite a long time actually, and I believe that this is good news for you, but we think that you do not need a radical hysterectomy AT THIS TIME"
- Anything in there that I may have misunderstood??? -

If you have opinions, other references or suggestions, feel free to either post them as comments (which may trigger thoughts from other readers), or e-mail me!


(and some additional info:
So...I recall Oncologist #1 telling me: "You have an adenosarcoma, or a malignant adenosarcoma" which I thought was redundant.
If it is a malignant adenosarcoma, does this mean that it is malignant Mullerian mixed tumor? What's the difference between the two?

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=6277257&dopt=Abstract
A case of heterologous Mullerian adenosarcoma of the uterus is presented with emphasis on morphologic differentiation, clinical course, prognosis, and treatment. This tumor was described first by Clement and Scully in 1974. Since that time 36 cases have been reported in the literature. The neoplasm consists of benign epithelial and malignant mesenchymal elements. The latter are composed of tissue with homologous and heterologous differentiation. Our microscopic and ultrastructural studies suggested that the heterologous elements were rhabdomyoblasts with a variable degree of differentiation. According to the literature the prognosis of Mullerian adenosarcoma is better than that of malignant mixed Mullerian tumor. The location of the tumor - whether intrauterine or extrauterine - seems to be more important as regards prognosis than the differentiation of the sarcomatous elements. The clinical course in our patients was not different from those described in the literature. Surgical removal of the tumor remains the treatment of choice. Some authors report a better survival rate when surgical treatment is followed by radiotherapy. Chemotherapy may be useful in cases of local or distant metastasis, and in cases of incomplete excision of the tumor mass.

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

I experienced vaginal bleeding, there was a uterine polyp which was removed during the first surgery which was a polypectomy and a cervical mass. Hmm...2% of the time originating in the cervix? Wow...My oncologist said that it had a 50% chance of recurring. I take it that this is so so news?

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9625851&dopt=Abstract

Section of Gynecologic Medical Oncology, The University of Texas M.D. Anderson Cancer Center, Houston, TX 77030, USA.

The records of 41 patients diagnosed with adenosarcoma of the female genital tract between 1982 and 1996 were reviewed. The median age at diagnosis is 51 years (range, 14-84). The most common symptom is vaginal bleeding (71%). Clinical signs at presentation include pelvic mass (37%), uterine polyps (29%), and enlarged uterus (22%). In 71% of patients, the tumor originates from the uterus. Other sites include ovary (15%), pelvis (12%), cervix (2%). A history of thyroid cancer, benign ovarian cyst, and polycystic ovarian disease is found more frequently than expected in this patient population, whereas no relationship to endometriosis is observed. Surgery is the mainstay of treatment, but platin-based chemotherapy given upfront in inoperable patient has definite efficacy. An overall response rate of 92.5% was observed after primary therapy (surgery with or without radiotherapy, and/or chemotherapy), with a median survival of 48 months (range, 1-174). Thirty-eight percent of patients had recurrent disease. The median time to recurrence is 12 months (range, 5-132). Although 60% of patients with recurrence achieved a complete remission after treatment, only 1 (8%) is alive without disease, and 3 (22%), with disease at the time of this analysis. In our series, histologic sarcomatous overgrowth is a predictor of poor prognosis (p<0.03),>)



About soft-tissue sarcomas. However, these are not adenosarcomas and not the uterine/cervical type. My oncologist said that there was data for sarcomas in other parts of the bodies, other types of sarcomas or other types of cancer in that area of the body but nothing that really combines everything. So all this data is to take with a grain of salt. Basically, they have no real clue it seems :)

It also says that low grade/high grade diagnosis is hard to make since this is a heterogenous tumor, eg, some of it may be low grade and some of it may be high grade and it's hard to know because the biopsy may remove only low grade portions.

Sounds like the main difference for the staging of a Sarcoma is that grade (and size) is incorporated in the determination of the stage. Interesting still.

http://telescan.nki.nl/start/chapt-01/chap1-4.html
http://telescan.nki.nl/start/chapt-01/chap1-6.html#6.1

Blessing

Hey folks,

I am going to make a paradoxical statement. I think that this diagnosis *could* be the best thing that has ever happened to me (comes in third actually, after my birth and the fact that I naturally don't like chocolate). I have heard a lot of people talk about an illness or something bad that happens to them and say that they feel so fortunate about it because it has somehow transformed them. Every time, I would think "I don't know what those guys are on but it must be real good"- perhaps because I figured that this was what they needed to believe in order to carry on. I think that I understand much better what they might have tried to say. I also believe them now. I don't quite feel the same (I am having a hard time accepting the possibility of infertility) but I am starting to believe them.

I also feel lucky that things are moving slowly. They allow me to take it all in at my own pace and mature both my thoughts and feelings. I realize that this may be a very selfish attitude because I am sure that this situation is also very tough on all of you. Hopefully after reading this you will feel a little better!

I am going to try to explain how I feel - I don't expect you to believe me. I wouldn't have believed myself two days ago.

Here are a few differences between my reaction to this event Vs. to some other tough things that have happened (such as my Dad's death when I was even shorter than I am today, meningitis and the boredom of the same bedroom for months, a close family friend dying of the flu, some PTSD-related events, even being dumped by my ex. The whale thing was a vacation so it doesn't count. In general, anything happening near Hawaii does not qualify as drama).
- I am not trying to act as if nothing had happened (for me to take it easy at work is a premiere!!)
- I felt compelled to tell everyone and thie overflow is support feels wonderful
- I am not trying to find means to keep myself busy and not face the situation
- I am curious about how this event is changing the way I FEEL about myself/others
- I am not trying to look like a hero and pretend that I am perfect
- I am not worried about how people will perceive me (not anymore. Early on, I was really concerned about how men would perceive me after this. Like a half-woman? I would elaborate all these nightmare scenarios in which I would try to date a guy and he would always walk away the minute he'd discover that I am sterile. Worse! In this nightmare scenario, I would think that he would be absolutely right to act like this!!! I really felt that my identity as a woman was going to be altered forever. I find this silly now).

The strangest thing is that this is a time when I feel extremely vulnerable and strong at the same time. With all the previous events, my sense of personal security was affected but I excelled at building a fence around it, to give me the illusion that everything was cool. Maybe it is a mini-representation of life events - haven't you ever felt betrayed (by your body, by God, by friends, destiny, etc...) when something bad has happened to you? Haven't you looked back at some tough experiences and realized that you have grown tremendously through them?

What may be the most difficult in all of this is that I repeatedly hear people say that past the "one shot" (eg surgery), there may be nothing to do, or rather, nothing proven. I feel that we all like it when there's a battle with a well-defined enemy toward whom we can point our guns. We may feel scared but our bravery often expresses itself through some kind of heroic action. So long as we are doing something, not everything is lost. This is probably how I found the whole whale experience rather fun and interesting. There always was something for us to try. At no point in time was our situation REALLY desperate.

Anyway :) One step at a time! I wish you the most wonderful weekend!!

Visual Aid - Giving The Enemy A Face

in English
http://commons.wikimedia.org/wiki/Image:M%C3%BCllerian_adenosarcoma_of_the_uterus.jpg

and in Spanish (an even bigger one!)
http://www.zambon.es/areasterapeuticas/03mujer/atlas/fichas/1023.htm

It actually looks really pretty, just like a butterfly!

And a live trachelectomy (GROSS!!!!!!!!!!!!!!!!!!!) - You have been warned...
http://www.youtube.com/watch?v=NVsczkyLdOA

And some info about Kitty Grass. No, this is not about my new joint venture.
I just got the cats some kitty grass. They love it and it works beautifully as a distraction from the flowers. I like green solutions a lot :)

I had to ask for some assistance since my oncologist didn't want to believe that my cats would be smart enough to ask for help if things went wrong. I got her to agree that they could be trained to dial 911 but she remained doubtful about their ability to communicate effectively what the problem might be. Here's a copy of the e-mail. And many many thanks to those who have already volunteered.

"Brave Alien Fighters,

I have just booked a relaxing few days at the 4 * lodging at Hospital Beach. I will continue my vacation with 3 weeks of intensive bed meditation training, taught by Hershel and Pumpkin. Around this time of deep soul searching, I may need a little help with the mundane earthly chores such as driving and cooking. Here is a copy of the program I have received from the tour operator.

checking into Hospital Beach Hotel. I am looking for a Chauffeur to drive me to the hotel...I am told that they will try to schedule me as the first case of the day so this could be something applicable only to early risers.
During that time, Hershel and Pumpkin would require a one-time/day Purina calories booster in preparation for the bed meditation training, as well as a little scooping of their royal quarters. Best delivered by a local neighbor.

3 days later: looking for a Chauffeur to drive me back to the bed meditation facilities and complete the one-time/day Purina Calories Booster for the bed meditation training feline coaches.

Therapeutic bed meditation courses taught by cats are in the final stages of approval with the FDA. As a result, such courses still require human supervision in the first few days of their development. This could be broken into
Daily
- Morning attendance (work from home type...) - croissants/coffee can be provided
- Afternoon attendance (work from home type...) - lunch and afternoon tea can be provided
- Evening attendance (cool DVD on the Wall can be offered) - wine and dinner can be provided
- Night attendance (very entertaining with cat chasing) - herbal tea. pillow and heating can be provided

Nursing degree not required. The cats are very experienced.

Volunteers can apply via e-mail, responding to this message with their preferred choice. Their name will be entered in a special draw to win a "Day Sail" on the most uncomfortable 27-footer you have seen. The cats will get in touch with them about next steps.

Thank you!"

Planning Surgery

Hello crowd,

Busy day today.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1835616&dopt=Citation

This is a different type from what I have but it is a very interesting read. I actually found a really interesting article on how ants plan their vacation. I will look it up and post it too. I am sure that you will all find it extremely educational.

I drove to the cancer center this morning, after a little dispute with the cats over the ownership of my pyjamas. My appointment was at 9:00. I got there at 8:47 (that's what it says on my parking ticket, my memory isn't that good)

First Class Service:
At about 9:20, I still haven't been called. Someone walks up to me with a hospital badge and kindly asked me if she could do anything for me, since she noticed that I had been here for a little while. I asked for some water, she took a note of it on her "order book" and she brought me a bottle. Wow! This beats the ice chips!!! Next time, I'll ask for champagne!

I only had time for a sip before I got called by the nurse. Of course, my vitals had to be taken again...And I am sure that on Tuesday at the other hospital, they will check my blood pressure again and make sure that I haven't lost a few inches. Slightly overweight since last time (the miracle of IVF cycle) but otherwise I quote the nurse "Wow, you're in great shape".

Of course :) I have a demanding master: my boat!

Then I saw Oncologist #2 and we talked about next steps. Whenever I talk to her, I feel ready to take a medical exam. Somehow, she's really good at communicating in really clear terms what looks like a complicated situation. Battling cancer feels like a detective story to me. First there's a bad guy (let's call him The Sucker from now on). Then there are clues (tumor size, grade, stage of cancer, age of patient, etc...). More investigation can be done (loads of tumor board meetings, more lab tests, etc...) and then sentences can be given (trachelectomy and 2 weeks of bed rest in a state-approved facility). It's even presented like a TV series, one episode at a time. a) conization, b) IVF cycle, c) trachelectomy. Each time, you don't know what happens next!

- We will start with the trachelectomy, then see what comes next. She will learn a lot during the surgery and we will use this knowledge to make the next decision.
I said "It sounds like it's pretty benign right since we can wait all this time" - to which she replied: "No cancer is benign. They are all nasty. Some are just more gentlemanlike in how they decide to put their victims to death. Like I said, the safest option is to do a hysterectomy now. Anything else carries more risk. How much is hard to tell"
- Assuming that it is safe to go through a pregnancy before the hysterectomy, Oncologist #2 wanted to discuss other things. She said that there are 4 types of treatments for sarcomas (one can be a combo), although it is a cancer with one of the fewest treatment options...
#1 surgery: always has to be done and is always the safest path
#2 chemotherapy: this works only after the tumor is more aggressive. In my case, the tumor was removed and after the cervix is removed (apparently > 95% of the cells there are cancerous now...), the seeds will probably be small enough. It could take another 1-5 yrs before it becomes aggressive. However, it could spread to nearby tissues quicker. So chemotherapy could not work after the trachelectomy and not for a while. It would have been an option prior to the first surgery but not necessary now as they shrunk the tumor with two successive waves of partial removals :) So no chemo for now. Sarcomas are not receptive to a lot of chemo treatments but to some in very special cases. Prior or after the hysterectomy, in say, a year or so from now, it may be required.
#3 radiation: this is the most commonly used treatment for sarcomas. She will wait until after the hysterectomy, otherwise, my uterus would take even longer to heal and it would delay the time when I can get pregnany. She believed that time was more precious that a radiation cycle. However, she thinks that she will probably order post-op radiations after the hysterectomy. Apparently, there is conflicting data w.r.t. whether or not that's a good thing. She prefers to be conservative.
A combo of #2 and #3 is also used in some cases
#4 hormonal treatment - so even though this sarcoma is not ERP+, there might be some hormones that could kick its bloody little ass. And this would not damage the uterine tissues and might be doable during the 2-3 months recovery time. So we will discuss this after the surgery. If she believes that it won't actually buy me a lot more time, she may drop it.
- I asked about how the ovaries could be protected if she wanted to do radiation to the pelvic area. She said that she could detach them from the uterus/Fallopian tubes and stitch them up somewhere else. She doesn't want to do this prior to the hysterectomy because this could make the fertility's doc job more complicated than it needs to be. Instead of needing an ultrasound to assist the egg retrieval operation, the fertility doc would first need a GPS to locate the ovaries. Oncologist #2 said that it was a really easy and quick laparoscopic procedure which could always be done prior to radiation. So no need to do this now.

Trachelectomy:
- Trachelectomy is scheduled. (she gave me the choice between two weeks. I pushed it out as much as I could. This doesn't make any sense but somehow, I feel that I want to keep my cervix as long as possible). It couldn't be earlier because the ovaries are still swollen which means that there's increased blood flow in the pelvic area which increases the risk of hemorrage. I am not a doctor but this doesn't sound like a good thing.
- Oncologist #2 expects me to be in the hospital for about 3 days unless I recover extremely quickly. She also asked me to take 3 weeks off (she will sign the papers for short-term disability leave) to recover at home. She said that there will be much more post-op cramping, bleeding and pain and that she will have to manage this with more narcotic painkillers as well as nice bed rest. Given my last "slaughterhouse" experience, I wasn't going to argue with this at all.
- Oncologist #2 explained that they will put a catheter in my bladder so that I can stay in bed without having to go to the bathroom. Nice! ;-) This should be removed when I leave the hospital.
- Oncologist #2 wants someone to stay with me for 5 days to a week during that time...(well, hopefully, minus the 3 days in the hospital???). Hmm. This will be a logistical challenge. Also I need to find someone to drive me to the hospital, then drive me back home upon discharge.
- They don't expect that they will need to do blood transfusions from a donor (they can recycle my own blood during surgery apparently) but they said that I should know about the blood bank and the fact that I can donate blood in advance if I want to. Now, if I choose to do this, I will have to wait longer for the surgery because they will have to wait for my counts to come back up (I will be anemic). No point really. On top of that, I'd have to pay $175 for each vial! They told me that I had 1 chance in half a million to get infected by HIV and 1 change in 60,000 to get infected by Hep B virus (I got a vaccine for that, so should be no problem). I replied than unfortunately, 1 change in half a million is exactly the type of odds that seems to apply to me...
- Oncologist #2 is planning on doing the procedure vaginally (with a side incision). However, in some rare cases (that has got to be me!), it is not possible, in which case, they will do it via an abdominal incision. She will also put a circlage which will permanently close the uterus. That is, until the uterus is removed, I guess that how permanent this fix will be.
- Total recovery time is 2-3 months
- Limited sexual activity (read no penetrative sex) for at least 8 weeks post-surgery.

All in all, this looks like a really friendly procedure. Really looking forward to it.

During the surgery:
- Dr. will remove the cervix, stitch close the uterus, connect the top of the vagina to the rest of the uterus.
If she gets clear margins after that (no visible cancer cells for 2 cm above where the cervix used to be), she will then freeze at least 1cm of tissue of those cells to kill them and reduce the risk of recurrence. Remember, that this won't mean that I am cancer free, given the nice little jumping feature of sarcomas. It will just mean that the trachelectomy was successful and that the risk of the cancer growing back to worrying levels (eg ready to spread) within the next year or so will be low enough in her opinion that I could envisage a pregnancy during that time.

If she does not get clear margins OR if she sees visible tumors or lesions around the uterus, she will not proceed onto doing a hysterectomy because I didn't sign the consent form. She will wake me up and ask for my permission. She said that I would always be free to refuse and let the disease hold its course. (not my intention obviously, but I figured that I'd want a chat with her). Then she would schedule the hysterectomy within days of the trachelectomy.

She will remove my uterus during this procedure only if it is required to save my life at that time (eg some uncontrollable blood flow, not cancer-related). Apparently it's a pretty technical operation and not many oncologists can do it. So I had to sign a semi-consent hysterectomy form (if it is an emergency situation and this is required to save my life). On the form it says it big bold letters: "YOU UNDERSTAND THAT A HYSTERECTOMY WILL MAKE YOU PERMANENTLY STERILE"
Thanks. This is exactly the issue I have with the procedure.

Post Surgery
- She said that if I did manage to get pregnant after the trachelectomy, I would have to plan to spend 19 to 20 weeks in bed prior to the birth!!! That's months!!!!! She also made sure that I knew that there would be an increased risk of pre-term labor and miscarriage and that I shouldn't get too excited.

We talked a little bit about all these stats. Apparently, sarcomas do recur. In my case, even if she removes the uterus, it could recur at the top of the vagina for example. There is no defined therapy for recurring sarcomas and they have a poor prognosis, even if they start out slow. She said that we would have to watch out for that.

The other problem is due to limited detection abilities. So a lot of women are diagnosed too late for just surgery and post-op radiations. (although this does not explain the "stage I" stats).

The last issue is the fact that with this jumping habit, it can sometimes spread without anyone noticing.

She did say that I was unbelievably lucky that they have caught this early. She has no idea why I experienced any symptoms (but then I am a rare phenomenon, I think that this is by now a generally accepted fact). She is honestly not sure about my prognosis. She suggested to discuss this again after the trachelectomy. She feels that short term, it is very manageable, mid-term (5 yrs), she finds it hard to tell. Sarcomas usually carry bad prognosis. This type is among the nicest of them (in terms of predictability) but also has only a short window during which it can be treated, and apparently treatment options are more limited for sarcomas.

So I signed the half dozen consent forms and made my "pre-anesthesia" appointment. On a roll.

And an e-mail from the other hospital...

"Hi
Received your slides they have been submitted to pathology. Thank you for all your help with the slides.
Thanks"

Thank God. I drove all the way back to the city, elevated myself to the 4th floor of one of the medical center campuses, picked up the envelope with the slides (while she made copies of some forms, I took a look: positively disgusting. Sort of blood puddles between glass...I remember now why I am a vegetarian). Then I took the precious envelope to the city Cancer Center which also happens to be on the 4th floor and handed it over to the receptionist.

National INSEAD Alumno Association just sent me some flowers!!! How nice of them! The card says
"Thinking of You. Best Wishes From Your INSEAD Friends". I am now busy building a fence around it to protect it from the cats.

More Admin Stuff!!!

And I was thinking that this would be a quiet week! Big mistake!!!

I had to fax a homemade release form to Oncologist #2. I got a call today from the office of Oncologist #3. Oncologist #2 office just sent the pathology slides back to the medical group of my regular OB/GYN. Apparently, it needs them for their tumor board meeting on Thursday (???? Why???? I don't have any follow up appointments with them) These slides are real stars...Every tumor board is trying to get hold of them. Even I need to fit my schedule around their meetings.

I called that medical group Pathology Lab. They will have the slides ready for me to pick up on Friday at noon (Friday morning, I have my follow up appointment with Oncologist #2, in exactly the opposite direction, 30 miles away). I will then drive a few blocks down to bring them to Oncologist #3 so that she can discuss them with her team prior to her weekly tumor board (scheduled for Tuesday, my next appointment with her is right after that meeting).

I am sure that all these people are very good at medicine. I can see where I could contribute a few workflow/process improvement hints though...

My brother called earlier today - apparently, one of my mom's friends is suffering from cervical cancer. It wasn't treated properly apparently and now she's in a pretty bad condition. My mom was understandably quite upset about that.

Obviously, my situation is very different.

a) I am starting a treatment
b) It is very early stage
c) I have a team of world-class specialists taking care of me
d) I have made a specialty of beating the odds

However, I have a feeling that telling my mom that I have uterine cancer at this time may not be the smartest thing to do...

And some useful info!
Treatment Options for Uterine Sarcoma:
http://www.cancer.org/docroot/cri/content/cri_2_4_4x_how_is_uterine_sarcoma_treated_63.asp?sitearea=cri

What is uterine sarcoma (my type isn't exactly listed there):
http://www.cancer.org/docroot/cri/content/cri_2_4_1x_what_is_uterine_sarcoma_63.asp?sitearea=cri

Sexuality after cancer treatment (Mayo Clinic):
buh...better stock up now!!!
http://www.mayoclinic.com/print/cancer-treatment/SA00071/METHOD=print

Why uterine sarcomas are hard to detect (and why I am so lucky):
http://www.cancer.org/docroot/cri/content/cri_2_4_3x_can_uterine_sarcoma_be_found_early_63.asp?sitearea=cri

General info:
http://search.nlm.nih.gov/medlineplus/query?FUNCTION=search&PARAMETER=uterine+sarcoma&DISAMBIGUATION=true&SERVER1=server1&SERVER2=server2&START=0&END=25&MAX=500&ASPECT=0

What is uterine sarcoma (and why adenosarcoma is the rarest of the rarest...):
http://www.wcn.org/interior.cfm?pagetype=detail&diseaseid=15&contentid=10600&featureid=1&ContentTypeID=1

Uterine Sarcoma spread in all sort of ways that doctors do not understand:
http://www.wcn.org/interior.cfm?pagetype=detail&diseaseid=15&contentid=10607&featureid=1&ContentTypeID=1

Staging (I am assumed to have the beginning of a stage II cancer right now):
"Stage II. The cancer has spread from the uterus to the cervix. The cervix is the lower end of the uterus that connects to the vagina."
Except that in my case, it started in the cervix, even rarer :)

Various treatment info:
Chemo not generally used, hormonal treatment often only ok temporarily
http://www.wcn.org/interior.cfm?diseaseid=15&featureid=1

So long!

Another Professional Advice

(from a radiation oncologist)

"
uterine sarcomas are fairly rare the best current advice on proper treatment is from the NCCN go to http://www.nccn.org/professionals/physician_gls/PDF/uterine.pdf

There is also a web site about uterine sarcomas : http://www.aboutcancer.com/uterus_sarcoma.htm

if the woman has a hysterectomy it may be possible at the time of surgery to preserve the ovaries and transpose them (move them out of the pelvic area) so that if postOp radiation is used the ovaries can be spared.... if the surgeon didn't move them then routine postOp radiation to the pelvic region would basically wipe out the ovaries"

Ahem. So the oncologist said that she would try to avoid radiation after the trachelectomy because it would wipe out the ovaries. I heard two possible solutions after the hysterectomy:

- this "surgical" trick
- take a special hormone to shut down the ovaries during the radiation cycle

In passing...I read. People with stage I disease have a 50% survival rate. People with Mixed Mullerian Tumors (mine :)) in some cases 33%.

But then stats mean nothing :) Nobody gets hit by a whale either. Or it's just like someone telling you that you have 50% chances to have a boy (Vs. a girl). It's not really helpful in your case, eg. it doesn't give you any info about the gender of your child...

Egg Freezing and The Path To Sainthood

Dr. Westphall does a conference call, which you can download/listen to at:
http://www.extendfertility.com/experts/learn.php
Pretty cool stuff!!! Dr Westphal is a pioneer in that field. Apparently, they really get 10 to 20 eggs normally...I guess that 7 is really on the low side...And apparently my FSH level was a little high (12, whatever that means!) which could be the problem (eg, not so responsive to the drugs).

Some of you have asked me about timing for the trachelectomy. I needed to wait for 6 weeks after the last surgery before any other surgery. So this gave us time for an IVF cycle and it fits perfectly with this schedule because I also need to wait for 3 weeks after the egg retrieval procedure before I can have surgery. The egg retrieval procedure is performed under anesthesia but it isn't really a surgical procedure in that there really is no incision. It's just a big needle :)

And to end on a happy note!

GYN Cancer is accepted by all religions and peace movements around the world. This is a disease that just makes it impossible for patients to sin. During various treatments (or related protocols such as IVF cycles), it is dangerous to:

- Drink alcohol (even wine...)
- Have intercourse
- Enjoy the sun
- Indulge in more vigorous exercise than hoisting fork to mouth
- Eat ice-cream, milk-based pastries and cheese
- Drive a car

It also sounds very difficult to be French without sin then. No sex, no wine and no cheese???

How Can I Break The News To My Mom?

Just spent a fabulous afternoon with a wonderful friend of mine. He's the kind of person I feel I can talk to about anything. He's also the best cook I have come across :) What makes this chat interesting is that we talked about how I could break the news to my mother. Damien suggested a letter. Apparently this is what he used once to share difficult news with his own parents. I was worried that it might be too impersonal, distant. Apparently, his parents didn't take it bad, they had time to think about the issue and they were more prepared and less distressed when he subsequently called them on the phone.

I was wondering what you guys thought about that? (I never send letters to my mom!).

Also - I love it when you comment on the blog. Why?
a) shared burden is halved burden and knowing that you are reading keeps me strong
b) comments are better than email as everyone can build on them
c) they are funny
d) I won't be the only one doing all the writing
e) this blog is a monument of literature
f) in 20 years, we will read them all with wide eyes and a thoughtful look on our face wondering how we could possibly write something so bizarre

Sahara and Pole Nord Marathon!

From an INSEAD friend - this is amazing!

Hello Inseaders,

a couple of you are already aware that last month I ran the Sahara marathon, and will run the North Pole marathon in a few days as a kick start to a campaign we (myself an an insead friend) have just launched to raise awareness of the effect individual action from any and all of us can have in reducing carbon emissions - http://www.earthfireice.com - check out our website (still in beta, few issues need to be ironed out...) where you can pledge online via a google maps mash-up to make small everyday changes to reduce your carbon output.

As part of this would really appreciate your support in pledging on the map.
And in terms of the campaign itself, would love to hear any ideas, thoughts or suggestions you guys have.

As for the actual marathon itself, well i have had somewhat of a shocker with the training - you can laugh at our misery at www.earthfireice.com/blog !

and if you'd like to make a donation and sponsor me, that would be awesome - all monies go to the charities global-cool.com, pure trust and practical action (see w http://earthfireice.com/blog/sponsors for more details): - easiest is via the website, as you sign up to make a pledge, just tick the option to make a donation;


In addition if you're interested:

+ 6 min video on the Sahara marathon earthfireice campaign which we have just uploaded:
http://www.youtube.com/watch?v=b-af5vyqD1Q

+ Kriotherapy training in London last weekend: minus 130 degrees C!!
http://www.global-cool.com/en/2007/04/02/earthfireice-ice-baby
http://video.msn.com/v/en-gb/dw.htm?m=us&p=truveo&g=907c50a0-07c7-4678-8ae8-f49f73e6955c

Clingfilm run to train for the heat of sahara:
http://news.bbc.co.uk/1/hi/england/london/6378929.stm
http://www.thesun.co.uk/article/0,,2-2007080361,00.html

+ pictures of the sahara marathon and yours truely struggling through the heat - as well as pics of the refugee camps: http://picasaweb.google.com/sean.cornwell

+ Short 5 min video on the Saharawi people and their plight which our camera crew made which i thought you might be interested in looking at:
http://vids.myspace.com/index.cfm?fuseaction=vids.individual&videoid=2018644589


anyway, have to go and train now at -35C...off to the pole itself tomorrow!

Weekend!

I spent a lot of time working on my sailing race program this weekend. I wrote up most of the crew manual, ordered a boat cover, did boat/rust work on the boat, registered for the next race, bought a sextant. I also cleaned up paperwork, dishes, clothes and have a pristine appartment (well, anything that my cleaning lady does not tackle on a weekly basis).
Tomorrow, I will work on some INSEAD association stuff.

This week will be a busy week. I have a improv board meeting and I want to throw myself back into work. I have decided that I don't want to let my mind wander around when I am at work. I have requested added 'artificial' short-term pressure to get me back in the mood. I really enjoy that. Until last week, I just couldn't concentrate on work. I only did the most urgent/bare minimum when I wasn't on sick leave. Now I think that I miss it!

Oh, and I need to go on some kind of diet to lose the padding that those unfriendly hormones have so generously given me...

Three Weeks Of Near Normal Life

OK - I have a follow up appointment with Oncologist #2 next Friday and a follow up with Oncologist #3 the following Tuesday but other than that, the next three weeks leading to the trachelectomy should be pretty quiet.

I expect Oncologist #3 to agree with the other numbers (eg. the trachelectomy and a potential treatment should buy enough time to go through a pregnancy). I am sure that she will say that anything that's not a radical hysterectomy at this time is risky and it will be difficult for them to quantify that risk.

BTW - it's OK to post comments on this blog. This may encourage group discussions :)

So how do I feel?

Uncertainty was scary. There is still a fair amount of uncertainty now since most people don't really know what's safe and what's not but we are now dealing with something that has a name...I can dream of a sarcoma and punch it in the face a couple of times a day, or send the cats on a group attack.
Now that I know what it is, strangely enough, I do not fear for my life at all. There isn't 100% chance of survival, it is a little known cancer and it typically has a high relapse rate but so what. It's curable and somehow, I'll manage.

What seems to be the most difficult thing for me to accept is any potential loss of fertility. For a short while, the thought of babies or the sight of babies was unbearable and would cause me to break down in tears. Nothing else seemed to matter. My whole body was in revolt. When the first oncologist hinted at the possibility of racing through a pregnancy (even with reduced chances of success after a trachelectomy) prior to doing anything definitive, I became almost insanely focused on that goal. This strong biological need, fed by a sense of urgency, took enormous proportions. Everything else became secondary. When the oncologist would say "this is the risky approach", I would hear "it's possible, let's do it". I would read furiously through mountains of scientific articles about sarcoma, all of them pointing to the aggressiveness of the disease and the difficulty to treat it if surgery is not an option but I was thinking that they were all talking about a different sarcoma, not mine.
When oncologist #2 initially ruled out the 'wait time' between the trachelectomy (and potential treatment) and the hysterectomy (and probably more treatment), I felt like I had just lost a child. When they changed their mind and admitted that a trachelectomy may buy enough time for a pregnancy to happen, I was back in heaven!!!

So cancer meant nothing to me and fertility meant everything. Still does.

Things are not as bad now. I feel more relaxed about the whole thing but this need has not completely disappeared. Having gone through an IVF cycle probably contributed to increased peace of mind.

The most wonderful thing throughout this little adventure is how much closer I feel to my friends or people in general. First, there was a small group of people who so generously offered their unconditional support. Even when I would get bad news (fertility-wise), this team kept me going. Their e-mails, calls or visits would keep me strong, no matter what.

Initially, I was very shy about this. It felt too personal, almost intimate. Now, after so many casual conversations with oncologists, after so many personal reflections and prayers, it feels so natural. I had to tell people, and it was liberating to provide as much detail as possible.

As I shared the news of my disease, I was overwhelmed by responses. Most offered support of course but quite a few contained very personal information. As I had decided to open my heart, people felt compelled to respond in a similar manner. This outpouring of trust did not confine itself to cancer stories. People talked about relationship issues, about their family, their couple, their fears and doubts. I felt so honored to receive these confessions. My story looks pale in comparison.

I feel extremely strong now. I can talk without any shame about this disease. I can take in whatever will come my way and I feel so extraordinarily fortunate to be among so many wonderful people.

I can only be thankful for cancer to have taught me one of the most important life lessons!

Mixed Mullerian Tumors???

from some GYN Oncologist Message Board:

Mullerian - refers to an embryonic structure from which the tissues of the female reproductive tract develop. The uterus, vagina, and fallopian tubes are referred to as mullerian structures in this context.

Mixed Tumor - Most tumors come from one type of tissue and are classified accordingly. For example, a carcinoma arises from epithelial tissue - that means from the covering or lining of the organs and passageways of the body. A sarcoma arises from bone, muscle, or other supporting or connective tissue. A mixed tumor has elements of more than one tumor type. In the case of a mullerian mixed tumor, there would be elements of both carcinoma and sarcoma - in this case, both the lining and connective tissue of the uterus. Mixed mullerian tumors in the uterus are often classified under uterine sarcomas. They are also called carcinosarcomas, to show both of their origins.

There have been some suggestions in the research literature that the drug tamoxifen may play a role in the development of some mixed mullerian tumors. In general, these tumors are quite uncommon.

Treatment - Often treatment information can be found under information about uterine sarcomas. Check out the Uterine Cancer section on this site, as well as this link about the treatment of uterine sarcomas. In the case of someone who has such a large tumor, it seems likely that radiation and/or chemotherapy will be suggested to shrink the tumor. Following that, surgery might be more feasible. Some studies have shown mixed mullerian tumors to be more responsive to chemotherapy than endometrial carcinomas.

Prognosis - Unfortunately, uterine sarcomas as a group tend to be more aggressive than endometrial cancers, and mixed mullerian tumors are no exception. As in most cancers, they are most treatable before they have spread. Sadly, from what you say, it sounds like this case has spread already, at least outside of the uterus. Of course, I can only tell you about general statistics, which may not apply to any individual case where I'm unaware of many of the details (besides not being a physician!). But in general, a mixed mullerian tumor that had spread outside the uterus would not carry a favorable long-term prognosis.

My best wishes to you and your family member. Please keep in touch and let us know how things are going.

and from: http://www.thedoctorsdoctor.com/diseases/uterus_mmmt.htm

"This malignant tumor of the uterus is also known as a MMMT. It is a highly malignant tumor that usually arises in the post-menopausal age group. It commonly presents with post-menopausal bleeding, abdominal pain, and distension. This tumor is aggressive and may also present with symptoms of extra-uterine spread."

Oncologist #3

Some friend have referred me to oncologists. Given the main characteristic of this particular tumor (eg. rarity), I am certainly interested in getting more than one opinion!

However, some set the bar really high in terms of remuneration...Quoting from an email

"I'm sorry to hear about your friend. She has a form of uterine mixed mullerian tumour which I have seen only a few times in my career. The last lady with an MMT that I looked after was a concert pianist, and she gave me a recording of Rachmaninov's 2nd Piano concerto."

Not sure how I can beat this...

I slept all day and I am feeling great!



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


My REI clinic's favorite nurse just called to make sure that I was OK and to give me an update on my "cryopreservation" report.

They harvested 7 eggs.
Out of those 7, 1 fertilized beautifully and was frozen as an embryo
4 fertilized but so so (the nurse said that they were slow) and didn't display a 100% healthy behavior. Still they were frozen as embryos. They may not be viable though.

The others did not fertilize and were discarded.

I was also reading about this clinic. They really have a special program for cancer patients who face fertility issue (either because their cancer is a GYN cancer or because they need to have radiation). Apparently, less than 20 people in this case were treated by the clinic. They short-circuit their usual waiting lists for these patients. I feel SO fortunate!!!

I might have to go back to this clinic after the trachelectomy...


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


I had an appointment today at 1pm at another Cancer Center:

Initially, I had been referred there but after a week of daily calls that never got returned, I ended up with Oncologist #2. So today's visit was a fun one.

First you talk to an intern, (super nice and apparently, very involved in volunteer work, we could almost be friends :)) - and then The Dr. comes in.
She is a lot of fun. I liked her a lot! And she had this really inquisitive way to look at me without saying anything...

First she asked me why I went to that other center. I had to smile and said that I would have loved to have been given the opportunity to try her first...Then she said, "OK, I'd better beat them with the options that I can offer. Let's see what we're talking about here."

Here's her reaction when I expressed my desire to carry a pregnancy:
- "you're definitely young. Who would want to maintain the privilege of going into labor at all cost..."

It is interesting how much doctors trust other medical center's labs.
"well, I really want to have our pathologist look at the slides. I will work off of their report"

She looked at the original Harvard report as well who indicated a slightly different type of malignancy, one that has an even higher rate of recurrence and that is very unstable. She was worried about that.

"Also, I want to discuss this at our tumor board (YAY! Another one!!), as this is a complex case and a lot is at stake. I will also go back to articles I have read about this type of tumor, there aren't that many but hopefully, I'll find some data I can use"

Anyway, I will spare you the details of a full exam (apparently, a breast exam is necessary when you come in for cervical cancer...) and offer the conclusions of this visit.

- My next appointment is in two weeks, right after the tumor board meets. It's a day when this Dr. usually doesn't see patients.
- This type of tumor never arises in the cervix, in the few rare cases of Mullerian Mixed Tumor (is this another name for it???), it arises in the uterus. So chances that this is also in the uterus are extremely high in her opinion
- A hysterectomy will be the only solution she will feel completely comfortable with
- Post-hysterectomy, she will want regular MRI to monitor the ovaries and the rest of the reproductive tract.
- She doesn't believe that the lymph nodes need to be removed at this stage (with the trachelectomy) since it is early stages. Maybe with the hysterectomy if it is done later.
- A trachelectomy now is betting that the tumor will behave like the slides suggest it would (eg, grow slowly again over the next year or so), but she said that it's a very uncommon tumor at a very unusual location and I might not fit the "general" population profile, so data might not be so useful for me
- She guessed (right) that most doctors can't give me certainty, even with a hysterectomy. She said that's because of the nature of the tumor.
- It can be "pesty" and often recurs
- she's confident that the cancer can be treated at this early stage. She said that with GYN cancers, before they spread, they have nearly 100% cure rate because they are operable. With sarcoma it's not 100% but it's above 50.
In my case, they won't remove the ovaries so there's a small chance that some cancer cells will be left hence the monitoring but she feels pretty good about that. (eg that it will be caught early enough if it develops there and will be treatable). Given the chances, she doesn't want to remove my ability to have biological children on the off chance that there's something there. She doesn't believe it's justified (which I was very pleased to hear as you can imagine!)
- There's a 70% success rate in getting pregnancy after a trachelectomy but very few will reach full-term and not everyone will pass the 32 week point...
So leaving the uterus in does not guarantee a successful pregnancy and a cute baby (whereas, removing it does guarantee no pregnancy at all :))
- Doing nothing is not an option. There's enough cancer cells left in the cervix to give me a lot of trouble. So a trachelectomy is the very minimum I asked what would happen if I decided to wait before I complete a pregnancy before doing a trachelectomy and she replied: "you'd die. your call. Oh and I'd look ridiculous because I'll have to beg you to allow me to convince you that at the very least you need a trachelectomy"

After I left, they gave me a sheet to hand out to the check out person. It's a diagnosis sheet for my charts. It says

"Comprehensive examination"
"Cervical/Uterine malignancy"
and next to "medical decision" it had "highly complex"

Note that the complexity of the decision is in no way related to survival rates.
My case is not an urgent case of phase IV cancer. However, in some more serious cases, they may not hesitate about what to do.

Lol :)

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Oncologist #3 was really upset at the fact that I didn't get an appointment the first time around. "I know your OB/GYN - very well and if she refers a patient to me I want to be available for that person"

She asked for more detail but I replied that I didn't really want to get anyone in trouble so that it was better to leave it at that. We are now talking which is the important thing.

After we resolved the medical matters - that is did not resolve the situation at all - the Dr came back with the Practice Manager.
She said that even though I didn't want to get anyone into any kind of trouble, she would really appreciate if I could work with her to make sure it wouldn't happen again."

So the manager and I had a little friendly chat that sounded like a police interview. She wrote down all my answers into a notebook.
"When was the first time you called?"
"How many times did you call? how many times/day?"
"which number did you call?"
- the one with the voicemail that said, you have reached the line for Dr.... -
"How long was it after we returned your call?"
- no one returned my calls -
"So how did you get this appointment today?"
- through a friend's sister who works here -
etc...

Before she left, the manager gave me her card and said: "Here's my phone number and my email address. If you ever have any problems getting appointments at the cancer center, call me direct."

Then, Oncologist #3's practice assistant and who called/emailed me to make this appointment came in, gave me her card with her direct line and said: "Call me whenever you need to see Oncologist #3, I will personally make sure that you get on her schedule".

Well, well, well...I feel super important now...

Egg Retrieval and Recap for New Readers

Welcome new Alien fans

You can browse through the blog to get more background on what's been happening but here's in a nutshell the timeline of recent events PRIOR to what's on the blog.

I had been experiencing irregular bleeding and had seen my OB/GYN about 5 times at regular intervals about that. First, it was thought to be an infection so I was treated for that (looked inflammed, kept bleeding as soon as they would touch it). We did a special PAP test and it came back negative. Etc...Toward the end, it was so bad that when I was asked "when was the first day of your last period", I couldn't answer because I couldn't tell the difference between normal and abnormal bleeding...

Finally, since nothing seemed to work (and it could be a million thing), the OB/GYN ordered an ultrasound (months after my first visit). The ultrasound did show a mass (pretty big by polyp standard, ~ 5 cm) in the uterus (bottom, top of cervix).
The day of the ultrasound, I get a call from my OB/GYN who says: we think that we have found the cause of your bleeding. Looks like it's a gigantic polyp. So if we remove it we should be fine.

Polyp is removed. Right after the surgery I get a call from my OB/GYN.
"I removed that small mass in the uterus but I found something totally strange too. It's huge and I have never seen anything like it before. I took a sample and sent it to the pathology lab. Hopefully, they'll be able to tell us what it is. We should have the results in two weeks"

2 weeks later: no results available when I go for my post-op check up. OB/GYN checks with the lab and calls me with the weirdest story of all.
- "OK, so the lab isn't 100% sure of what it is, so they sent it to an expert at Harvard Med School for a second opinion"
- "and what are the options they are hesitating between?"
- "No, it's so rare that I really don't think that it is really possible so let's not talk about this"
- "I insist" - it took me three phone calls to get her to say
- "OK, they are hesitating between a benign tumor or a malignant sarcoma"
- "And why is it so difficult to tell?"
-"Well, sarcomas are really rare, start in the gland but half of the tumor is benign and the other half is very malignant so they are often mis-diagnosed is the sample contains the benign portion"

2 days later, I learn that the Boston specialist of soft tissue tumors has sent a report back "cancer" - he also chose that time to disappear for 2 weeks on vacation and was not available for comments.

The city lab still didn't want to believe it (50% of the people there thought that it was sarcoma and 50% thought that it was benign) so they also send it to another local hospital that says "we don't know". The city lab puts "cancer" in the report. I actually had to speak directly with the MD heading up the lab because I still couldn't get a response. This took over a month...

Meanwhile, I am wondering whether I have cancer or nothing :)

My OB/GYN calls after I got these results:
- "OK, so looks like it's cancer even though there's no consensus. However, everyone thinks that it should be removed so let's go ahead and schedule that operation. And let's do a CT-Scan/MRI (better for soft-tissue) including one with contrast prior to the surgery to make sure that we remove it all"
- A few days later, I am put on emergency schedule for an MRI at UCSF. I stayed in that stupid machine for TWO hours (with an IV in my arm for the contrast solution). My legs were so numb after that!
- I get a call that same evening from the doctor:
"- I can't just go ahead and remove this. This is all over your cervix, up the cervical canal into the uterus. If we remove this, your cervix has to go and potentially some of your uterus. I am going to refer you to a GYN oncologist. He can see you next week."

Oncologist #1 reads the two reports that say cancer and tells me "I am not sure it is cancer. Or if it is it's probably so early that we can just wait and see, and manage the growth with some drugs. Let's do a scan every month and see how fast this thing grows"

Next scan: "Mass identified on the inside of the cervix, marginally smaller than the original mass after partial removal"
Exam after the result of the scan and comment from the oncologist #1: "Hmmm, I can feel the tumor with my fingers, it's probably about golf ball size. It has grown much faster than I had anticipated. Let's schedule a conization of the cervix, which is a partial removal of the cervix and see if I can get it out"

My OB/GYN doesn't understand how that can work...

Meanwhile, my"case" is being discussed at various tumor boards. They all say it's cancer.

I finally have the operation (this is one of the first posts on this blog) -
- a) it is cancer
- b) it is super rare and they have no clue
- c) it is early stages but they aren't sure about how this will develop since there's no data and apparently it can mutate into all sorts of monsters
- d) margins were not clear (eg still cancer cells in there)
- e) there's only one solution: a hysterectomy potentially with chemo/radiation



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

This !$)^#%^)&*@#)( cat has peed on my spinnaker bag.

OK, took another of those round pills, got myself a nice filling little dinner and I am drinking a ton of water. Most importantly, I will take what I will sorely be missing for a couple of weeks: a HOT BATH!!

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

I just went over that consent document for egg freezing. Basically, this is so rarely done that it is still a research study. They accept only two new people into this study every month and give priority to cancer patients wishing to preserve fertility. Also true of ovarian tissue (if they ever have to remove them) and because only 2 pregnancies have worked with this solution, the storage is free for this (for embryos/oocytes, it's about $350/yr)

So by signing this form I am consenting to be part of this research study.

It is also specified that if at any time, research shows that there is a risk in keeping those eggs (probably to the future baby I would think), then they will notify participants in the research.

Whenever something like this happens (or when I turn 50), I can choose to have the eggs donated to research or discarded. I opted for the former. Might as well be useful to someone else!

So I was already asked to be a research case for the tumor itself and now I have just enlisted into a research program for fertility preservation with cryo-eggs :) Cool!

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

Assuming that one needs 2 eggs and 250g of flour (+ some sugar, oil, etc...) to make some wonderful crepes for 8 people, how many people can we feed on my SEVEN eggs????

Everything went well at the retrieval procedure. Feeling a little groggy still :) I spoke with the doctor and she doesn't believe that the quality of the eggs is good enough to freeze them as eggs. So they will all be frozen as embryos.

Which simplifies greatly the problem stated above!!! None!!!!

Mystery Oncologist ;-)

So...the reason why I switched oncologist is because I had a hard time trusting what oncologist #1 was telling me. Here are some examples.

a) "I don't believe that there is enough information to say that this is cancer" he says looking at the pathology report that states "sarcoma". He finally agreed that this was cancer...
b) "It's just an outpatient procedure" - and the nurses tell me that he has booked a room for 2 days for me...so clearly my overnight stay was planned ahead
c) "I got all the tumor out" - later the Stanford oncologist says "there was no clear margin on your last surgery which means that the tumor has not been removed, there are still tons of cancer cells left in there. And in any case, the MRI cleary shows that the cancer is all the way up the cervical canal, so no, the bulk of the tumor may be out, but we need to remove a lot more before we can say it's out"
d) "I am going to have to remove your cervix and your lymph nodes" - oncologist #2 is saying "I want to do this trachelectomy but let's try to keep your lymph nodes until the hysterectomy. It should definitely help w/ fertility. Right now, there's 1-8% that they are affected. We will monitor closely and see if we need to change this"

Weird huh?

*********************
I got an email from oncologist #2

"There are many people doing gene profiling of tumors in the research setting here including myself. Dr. so and so has a particular interest in sarcomas and if we have enough tumor tissue to save I can give him some. Not sure what we will do with the information but it is certainly potentially useful to have.
Also I would want to wait at least 3 weeks after your retrieval procedure to do your surgery."

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

Hey, I don't know about that last shot. It's super sore, feels hard and looks swollen. I might call in to double check and make sure this is normal. I seem to support the antibiotic pretty well which is good news (I can certainly do without nausea!)

OK, I checked with the nurse and the soreness, hard on touch, swelling and redness is not uncommon for this type of shot. Apparently it has some proteins in it and that's what's causing this discomfort. No big deal.

Also, those hormones put your weight completely out of whack. I am eating less than usual and I think that I have put on some weight. I talked with an aunt of mine who had this procedure done a few years back. She also put on a lot of weight during the treatment for no apparent reason so all hormonal driven and had to go on a diet afterwards. The "no exercise" bit is not very helpful there!!!

Fortunately, this is ending soon!!! Harvest is tomorrow!