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.
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.
posted by Finance Monkey at 3:26 PM
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