Was this the wrong surgery?
To oncologist #2
"Below is a 3rd-hand transcript of a conversation that a friend of mine had with an oncologist. I hope that I am not distorting the message. The bottom line was that, in this physician's opinion, waiting before a hysterectomy conveyed a significant risk.
A hysterectomy is a big decision (I have just had a trachelectomy) and I have a strong desire to go through a pregnancy. On the other hand, the strength of the reaction below is puzzling to me. "
Here's the transcript
"Removing the cervix = a good start but not enough . It may be possible to preserve the ovaries. Other than that, he would really recommend the big surgery, ASAP. If I were a close relative, we wouldn't be having this discussion. He stated that life _WAS_ being jeopardized by delaying surgery, that even with definitive surgery now, survival was not guaranteed. There is no doubt in his mind that this is the best shot at survival I will ever get.
He believes that I still have a chance to be cured and survive (past surgery and potential adjuvant therapy, there is no known cure for this type of cancer) and he wants me to have the best chance.
"Sarcoma" (the type did not matter as much as sarcoma characteristics), scarcity of data about the disease, difficulty of diagnosis seem to be enough information for him to recommend this course of action. He did state that without full data he was on a less certain footing.
He added that if I wanted to sacrifice some of that chance of survival to have a baby, it would be my prerogative."
***********************
To oncologist #3
"As a follow up to our discussion today, I wanted to give you more detail about the other opinions I have been hearing, as an FYI.
Here's the latest e-mail that I have received from a friend who is a medical oncologist and who consulted with a GYN oncologist.
The information I have shared with her are the tumor board recommendations, the diagnosis of a lMullerian adenosarcoma as well as the alternate diagnosis proposed by the Stanford pathology department. I have also given her the history (dates + procedures performed)
The other oncologists (most of whom I do not know as they were introduced to me by friends), including a radiation oncologist and an oncologist who is currently treating a patient with relapsed adenosarcoma, after a hysterectomy, also have received the same information. I have mentioned to them my current decision to do a trachelectomy, to attempt a pregnancy followed by a hysterectomy and be done with it, and a summary of our discussion. Their reaction is very similar to the one listed below.
These people have all urged me emphatically to consider a more aggressive treatment. To give you an example, one of them called me early yesterday to dissuade me from doing a trachelectomy. All of them seem personally concerned that my life is being jeopardized by waiting.
Let's wait until the final pathology becomes available and I would love to have a referral into Sloan-Kettering. I am struggling to understand the risks inherent to my current decision.
"[Follows a quoted email stating that delaying surgery would convey a significant risk]"
**************************
And the counsellor of the REI clinic
"I have heard conflicting recommendations re: best treatment options for my disease, all from very competent physicians. When I mentioned to these oncologists my current decision to do a trachelectomy, to attempt a pregnancy followed by a hysterectomy/adjuvant therapy, they have all emphatically urged me NOT to delay radical/aggressive surgery any longer. Most of them seem personally concerned that my life is being jeopardized by waiting, given the difficult of diagnosis, the rarity of the disease and associated scarcity of data and its incurable nature past the first attempt at a cure. Some oncologists are also recommending radiation and chemotherapy. I will most likely have radiation.
I am terrified at the idea of a hysterectomy now (as opposed to post pregnancy). I have just had a trachelectomy done. It occurs to me that I have spent a lot of time justifying the recommendations that fit my desire to go through a pregnancy and not dedicated enough time to contemplate the alternative.
I know that the clinic has dealt with other cancer patients and I was wondering if I could benefit from their experience. I would be curious to hear how they have lived through a hysterectomy/potential loss of fertility during their reproductive years). Specifically, I am interested in understanding how this experience has affected their perceived self-worth, both as a woman and as a mother.
I am reluctant to join a support group. I was wondering if you would accept reaching out to these patients and sharing my contact details with them, asking if they would be open to having this conversation with me, or if there would be anyone else I could reach out to. I hope that my request is not unethical or inappropriate but if I am mistaken, please accept my apologies. "
The doctor replied to me:
"I hope your recovery from the surgery has gone well.
I do not have a lot of patients who have been in a similar situation, but I will try to contact a few patients who have had hysterectomies to see if they are willing to talk."
disclaimer: I am still drowsy from the Percocet so don't mind my English...
Just got a call from oncologist #2
- "We believe that there is a high risk of local recurrence (read uterus/top of the vagina) but that this does not put your life in jeopardy because it can be treated with resection and radiation. So if you did go through a pregnancy and we saw this recurrence, then we would both feel good because you would have tried all you could (except that you might lose a baby half way through...) and I will still feel confident that I can save your life and remove the disease before it spreads any further."
[Note from my medical self]
So the risk of local recurence *could* be quantified if we believe the little data that's available, even though none of it fits my case. It's called "significant" and oscillates between 30 to 50%. Oncologist #3 had estimated this risk to be well over 50% in my case because all of the cervix was already gone.
"- What is worrying is the risk of lumps and mets way outside of that area. This risk is not zero with sarcoma but our position is that it is small enough to let you consider Option 2. If your final pathology reports indicates that there is anything suspicious close the cervix in the uterus, then Option 2 should disappear."
(but my pathology report will focus on the cervix! not the uterus. Read, this risk sounds really low and we don't believe that it should affect your decision making)
[Note from my eminent medical self again]
This is where things get blurry. The risk of NON LOCAL RECURRENCE IS NOT ZERO but she can't give me a number!! It is small at this stage, because the cancer was found so early, hence their recommendation. Note that oncologists said that clear margins meant NOTHING for sarcomas because of the hopping habit, so I am really confused as to why all of the sudden those margins are so important to everyone. Is it because it is still an early stage?
When I mentioned that one of the oncologists believed that there were already seeds in the uterus (beside the polyp that was removed), she said that there was no way of knowing at this time, and that if it was the case, then leaving the uterus in would lead to metastatic disease over the course of 1+ year. However, she felt that I have read up a lot about this type of cancer and the associated risk and that she feels that it is reasonable for me to attempt Option 2 and that risk to my life does exist as the disease will most likely recur or progress but is deemed manageable. She said that I would have to be watched very regularly and quick action would have to be taken the minute anything starts to show its ugly face.
When I mentioned people's concerns about leaving cancer cells behind in the uterus and the fact that the disease is so rare that it is hard to predict how it will behave, oncologist #2 agreed and said that the only condition she's comfortable with letting me go down the path of Option 2 is if I agree to be watched super regularly, accept that my life can be saved only if I go through aggressive treatment WHEN it recurs. Under these conditions and based on the information that she has, she believes that she can manage the disease in that length of time to give me a chance at a pregnancy.
She also said: "the problem of course is that all the people you are talking to can be right. The more extreme or the more moderate opinions could all be right. No one will be able to tell you for sure what will happen. That's why I believe that you are doing the right thing, giving this due consideration, gathering data and understanding your decision."
She left me on a very nice note, saying that she was glad that I was recovering so well from the trachelectomy. That, she said was something that definitely could NOT be delayed any longer. I really appreciate her getting back to me so quickly.
So bottom line, if I understand correctly:
- Risk of local recurrence of the disease is high (let's take it for granted) but with regular watch, it can be managed. If it recurs too early, it will kill my pregnancy but it won't kill me (since a hysterectomy/adjuvant therapy should take care of it then)
- Risk of metastatic disease is low but not zero, principally because the cancer is at early stage
I think that I now understand their position. It seems extremely consistent and logical. I also better understand why they are making this MY decision.
- This is a big deal but it's early and we have dealt with the most urgent issues
- If the margins are clear, we are confident that if there are seeds in the uterus (or not as it will probably recur anyway), then the recurrence will be local and can be dealt with through resection (eg surgery) and radiation (and/or chemo) which means that my life is not in jeopardy
- risk of metastatic disease at this stage in their opinion is low but not quantifiable, thus more aggressive surgery AT THIS TIME may not be necessary if my desire is to go through a pregnancy.
- I will need to have a hysterectomy at some point. This will be my only chance for a cure.
- This disease is rare and it will be hard for anyone to tell me how it will behave. There is indeed no data that fits my case and it is hard to treat once it spreads beyond the uterus/cervix.
OK, I will chew a bit more on that...
************************
I just received flowers from my team at work! It's such a huge bouquet that the delivery man was panting when he got to my place (top floor). I just sent a Thank You email around. I am so touched! I really wonder if I deserve all this support. In the grand scheme of things, I suffer from a cancer that was found early and things don't seem bad at all. I am terrified at the idea of having to undergo a hysterectomy at age 32 but it won't stop the world from spinning.
"Hello everyone!
Thank you for all your support and kind words! I am doing well and these beautiful flowers will no doubt speed up my recovery! So far the only casualty of this whole operation is my beloved teapot (a "volunteer nurse" tried a very original recipe which didn't work out so well). You will find below the obituary, edited for a local news page.
My cats think that I have finally understood the meaning of life as I join them in daily naps, induced by narcotic pain killers :)
See you all soon!
ps: no cat or elephant was hurt in the making of this story
[the obituary you are all familiar with]
***********************
Someone pointed out to me that she wasn't sure that my reason to delay a hysterectomy (whether or not there was any risk in that) held much water.
It sounded to her that I was depicting a very romantic pregnancy, a time where mother and child will bond, the first kick, the first ultrasound, the first meeting...breastfeeding, etc...
She then rather plainly laid out in front of me what a pregnancy without a cervix might look like, esp. under a little time pressure.
- Work with a fertility doctor to get pregnant
- Ensure that no twins grow in there (not sure if the circlage would hold this), at least, no triplets...
- Worry every day about miscarriage and losing your child
- Restrain your activities to minimize the risk described above
- Stay bored in bed for 19 to 20 weeks
- Assuming 32 week point is reached, schedule a C-section and have surgery
- Assuming baby is viable, probably look at him/her from a distance for 6 weeks as he/she keeps growing in an incubator
Of course, to this mix, we should add:
- Meet doctors on a regular basis to make sure that cancer isn't growing too fast/coming back too early
Her next question was: is this what you really want?
Trachelectomy is a fairly new procedure that was created specifically for women with very early stages of cervical cancer that wanted to preserve the ability to carry a child. Not many GYN oncologists can perform it and to qualify women must have expressed a very strong desire to carry out a pregnancy. It is a high risk pregnancy, but it is a pregnancy. Many other women have this procedure done and enjoy a pregnancy. Seems to me that there might be something stronger in this?
Nathan was also worried that if all the odds were multiplied, it's not worth it.
- Getting pregnant within 3-6 months (assuming clear scan and OK final pathology report) - % chances?
- Cervixless uterus has healed well enough to allow for either insemination or normal sperm travel (apparently in some cases, it heals in bizarre ways and makes this virtually impossible without laparoscopic surgery) - no idea % ?
- Cancer does not develop too much too fast so pregnancy does not have to be interrupted (no idea % but I am told it's LOW, whatever that means...)
- Pregnancy carried to viability (70% of the cases?)
Well, if there is no additional risk (eg, like the oncologists say, they can manage a local recurrence if it happens during that time), I would argue that even a 10% chance of success would be worthwhile.
Granted, it would be a little more stressful and less glamorous than a regular pregnancy. Point taken and assimilating this in my thought process.
"Below is a 3rd-hand transcript of a conversation that a friend of mine had with an oncologist. I hope that I am not distorting the message. The bottom line was that, in this physician's opinion, waiting before a hysterectomy conveyed a significant risk.
A hysterectomy is a big decision (I have just had a trachelectomy) and I have a strong desire to go through a pregnancy. On the other hand, the strength of the reaction below is puzzling to me. "
Here's the transcript
"Removing the cervix = a good start but not enough . It may be possible to preserve the ovaries. Other than that, he would really recommend the big surgery, ASAP. If I were a close relative, we wouldn't be having this discussion. He stated that life _WAS_ being jeopardized by delaying surgery, that even with definitive surgery now, survival was not guaranteed. There is no doubt in his mind that this is the best shot at survival I will ever get.
He believes that I still have a chance to be cured and survive (past surgery and potential adjuvant therapy, there is no known cure for this type of cancer) and he wants me to have the best chance.
"Sarcoma" (the type did not matter as much as sarcoma characteristics), scarcity of data about the disease, difficulty of diagnosis seem to be enough information for him to recommend this course of action. He did state that without full data he was on a less certain footing.
He added that if I wanted to sacrifice some of that chance of survival to have a baby, it would be my prerogative."
***********************
To oncologist #3
"As a follow up to our discussion today, I wanted to give you more detail about the other opinions I have been hearing, as an FYI.
Here's the latest e-mail that I have received from a friend who is a medical oncologist and who consulted with a GYN oncologist.
The information I have shared with her are the tumor board recommendations, the diagnosis of a lMullerian adenosarcoma as well as the alternate diagnosis proposed by the Stanford pathology department. I have also given her the history (dates + procedures performed)
The other oncologists (most of whom I do not know as they were introduced to me by friends), including a radiation oncologist and an oncologist who is currently treating a patient with relapsed adenosarcoma, after a hysterectomy, also have received the same information. I have mentioned to them my current decision to do a trachelectomy, to attempt a pregnancy followed by a hysterectomy and be done with it, and a summary of our discussion. Their reaction is very similar to the one listed below.
These people have all urged me emphatically to consider a more aggressive treatment. To give you an example, one of them called me early yesterday to dissuade me from doing a trachelectomy. All of them seem personally concerned that my life is being jeopardized by waiting.
Let's wait until the final pathology becomes available and I would love to have a referral into Sloan-Kettering. I am struggling to understand the risks inherent to my current decision.
"[Follows a quoted email stating that delaying surgery would convey a significant risk]"
**************************
And the counsellor of the REI clinic
"I have heard conflicting recommendations re: best treatment options for my disease, all from very competent physicians. When I mentioned to these oncologists my current decision to do a trachelectomy, to attempt a pregnancy followed by a hysterectomy/adjuvant therapy, they have all emphatically urged me NOT to delay radical/aggressive surgery any longer. Most of them seem personally concerned that my life is being jeopardized by waiting, given the difficult of diagnosis, the rarity of the disease and associated scarcity of data and its incurable nature past the first attempt at a cure. Some oncologists are also recommending radiation and chemotherapy. I will most likely have radiation.
I am terrified at the idea of a hysterectomy now (as opposed to post pregnancy). I have just had a trachelectomy done. It occurs to me that I have spent a lot of time justifying the recommendations that fit my desire to go through a pregnancy and not dedicated enough time to contemplate the alternative.
I know that the clinic has dealt with other cancer patients and I was wondering if I could benefit from their experience. I would be curious to hear how they have lived through a hysterectomy/potential loss of fertility during their reproductive years). Specifically, I am interested in understanding how this experience has affected their perceived self-worth, both as a woman and as a mother.
I am reluctant to join a support group. I was wondering if you would accept reaching out to these patients and sharing my contact details with them, asking if they would be open to having this conversation with me, or if there would be anyone else I could reach out to. I hope that my request is not unethical or inappropriate but if I am mistaken, please accept my apologies. "
The doctor replied to me:
"I hope your recovery from the surgery has gone well.
I do not have a lot of patients who have been in a similar situation, but I will try to contact a few patients who have had hysterectomies to see if they are willing to talk."
disclaimer: I am still drowsy from the Percocet so don't mind my English...
Just got a call from oncologist #2
- "We believe that there is a high risk of local recurrence (read uterus/top of the vagina) but that this does not put your life in jeopardy because it can be treated with resection and radiation. So if you did go through a pregnancy and we saw this recurrence, then we would both feel good because you would have tried all you could (except that you might lose a baby half way through...) and I will still feel confident that I can save your life and remove the disease before it spreads any further."
[Note from my medical self]
So the risk of local recurence *could* be quantified if we believe the little data that's available, even though none of it fits my case. It's called "significant" and oscillates between 30 to 50%. Oncologist #3 had estimated this risk to be well over 50% in my case because all of the cervix was already gone.
"- What is worrying is the risk of lumps and mets way outside of that area. This risk is not zero with sarcoma but our position is that it is small enough to let you consider Option 2. If your final pathology reports indicates that there is anything suspicious close the cervix in the uterus, then Option 2 should disappear."
(but my pathology report will focus on the cervix! not the uterus. Read, this risk sounds really low and we don't believe that it should affect your decision making)
[Note from my eminent medical self again]
This is where things get blurry. The risk of NON LOCAL RECURRENCE IS NOT ZERO but she can't give me a number!! It is small at this stage, because the cancer was found so early, hence their recommendation. Note that oncologists said that clear margins meant NOTHING for sarcomas because of the hopping habit, so I am really confused as to why all of the sudden those margins are so important to everyone. Is it because it is still an early stage?
When I mentioned that one of the oncologists believed that there were already seeds in the uterus (beside the polyp that was removed), she said that there was no way of knowing at this time, and that if it was the case, then leaving the uterus in would lead to metastatic disease over the course of 1+ year. However, she felt that I have read up a lot about this type of cancer and the associated risk and that she feels that it is reasonable for me to attempt Option 2 and that risk to my life does exist as the disease will most likely recur or progress but is deemed manageable. She said that I would have to be watched very regularly and quick action would have to be taken the minute anything starts to show its ugly face.
When I mentioned people's concerns about leaving cancer cells behind in the uterus and the fact that the disease is so rare that it is hard to predict how it will behave, oncologist #2 agreed and said that the only condition she's comfortable with letting me go down the path of Option 2 is if I agree to be watched super regularly, accept that my life can be saved only if I go through aggressive treatment WHEN it recurs. Under these conditions and based on the information that she has, she believes that she can manage the disease in that length of time to give me a chance at a pregnancy.
She also said: "the problem of course is that all the people you are talking to can be right. The more extreme or the more moderate opinions could all be right. No one will be able to tell you for sure what will happen. That's why I believe that you are doing the right thing, giving this due consideration, gathering data and understanding your decision."
She left me on a very nice note, saying that she was glad that I was recovering so well from the trachelectomy. That, she said was something that definitely could NOT be delayed any longer. I really appreciate her getting back to me so quickly.
So bottom line, if I understand correctly:
- Risk of local recurrence of the disease is high (let's take it for granted) but with regular watch, it can be managed. If it recurs too early, it will kill my pregnancy but it won't kill me (since a hysterectomy/adjuvant therapy should take care of it then)
- Risk of metastatic disease is low but not zero, principally because the cancer is at early stage
I think that I now understand their position. It seems extremely consistent and logical. I also better understand why they are making this MY decision.
- This is a big deal but it's early and we have dealt with the most urgent issues
- If the margins are clear, we are confident that if there are seeds in the uterus (or not as it will probably recur anyway), then the recurrence will be local and can be dealt with through resection (eg surgery) and radiation (and/or chemo) which means that my life is not in jeopardy
- risk of metastatic disease at this stage in their opinion is low but not quantifiable, thus more aggressive surgery AT THIS TIME may not be necessary if my desire is to go through a pregnancy.
- I will need to have a hysterectomy at some point. This will be my only chance for a cure.
- This disease is rare and it will be hard for anyone to tell me how it will behave. There is indeed no data that fits my case and it is hard to treat once it spreads beyond the uterus/cervix.
OK, I will chew a bit more on that...
************************
I just received flowers from my team at work! It's such a huge bouquet that the delivery man was panting when he got to my place (top floor). I just sent a Thank You email around. I am so touched! I really wonder if I deserve all this support. In the grand scheme of things, I suffer from a cancer that was found early and things don't seem bad at all. I am terrified at the idea of having to undergo a hysterectomy at age 32 but it won't stop the world from spinning.
"Hello everyone!
Thank you for all your support and kind words! I am doing well and these beautiful flowers will no doubt speed up my recovery! So far the only casualty of this whole operation is my beloved teapot (a "volunteer nurse" tried a very original recipe which didn't work out so well). You will find below the obituary, edited for a local news page.
My cats think that I have finally understood the meaning of life as I join them in daily naps, induced by narcotic pain killers :)
See you all soon!
ps: no cat or elephant was hurt in the making of this story
[the obituary you are all familiar with]
***********************
Someone pointed out to me that she wasn't sure that my reason to delay a hysterectomy (whether or not there was any risk in that) held much water.
It sounded to her that I was depicting a very romantic pregnancy, a time where mother and child will bond, the first kick, the first ultrasound, the first meeting...breastfeeding, etc...
She then rather plainly laid out in front of me what a pregnancy without a cervix might look like, esp. under a little time pressure.
- Work with a fertility doctor to get pregnant
- Ensure that no twins grow in there (not sure if the circlage would hold this), at least, no triplets...
- Worry every day about miscarriage and losing your child
- Restrain your activities to minimize the risk described above
- Stay bored in bed for 19 to 20 weeks
- Assuming 32 week point is reached, schedule a C-section and have surgery
- Assuming baby is viable, probably look at him/her from a distance for 6 weeks as he/she keeps growing in an incubator
Of course, to this mix, we should add:
- Meet doctors on a regular basis to make sure that cancer isn't growing too fast/coming back too early
Her next question was: is this what you really want?
Trachelectomy is a fairly new procedure that was created specifically for women with very early stages of cervical cancer that wanted to preserve the ability to carry a child. Not many GYN oncologists can perform it and to qualify women must have expressed a very strong desire to carry out a pregnancy. It is a high risk pregnancy, but it is a pregnancy. Many other women have this procedure done and enjoy a pregnancy. Seems to me that there might be something stronger in this?
Nathan was also worried that if all the odds were multiplied, it's not worth it.
- Getting pregnant within 3-6 months (assuming clear scan and OK final pathology report) - % chances?
- Cervixless uterus has healed well enough to allow for either insemination or normal sperm travel (apparently in some cases, it heals in bizarre ways and makes this virtually impossible without laparoscopic surgery) - no idea % ?
- Cancer does not develop too much too fast so pregnancy does not have to be interrupted (no idea % but I am told it's LOW, whatever that means...)
- Pregnancy carried to viability (70% of the cases?)
Well, if there is no additional risk (eg, like the oncologists say, they can manage a local recurrence if it happens during that time), I would argue that even a 10% chance of success would be worthwhile.
Granted, it would be a little more stressful and less glamorous than a regular pregnancy. Point taken and assimilating this in my thought process.
posted by Finance Monkey at 11:12 AM
0 Comments:
Post a Comment
<< Home