And some more opinions!!!
From a wonderful person whom I am lucky enough to count among my friends. This is combined with some help from the ship's medical oncologist who clarified a few of the "confusing" things I had been hearing.
"My advice on how to make your decision, which is different from my opinion on the best treatment option, is to raise your thoughts to a higher level and not let them get tangled in the details. Having the mind untangle details is somewhat comforting, but it prevents it from looking at the issue holistically. Step back from the issue and try to look at it from an unattached perspective -- then ask yourself what decision seems clear. "
I agree that all this new knowledge + playing with stats is reassuring. It makes me feel that I am getting to know my "enemy". It feels that I am running in circles now though since there really isn't a good basis for stats and pathologists can't even agree on the diagnosis/grade of the tumor.
We then walked through all the possible outcomes for the two options. This friend's argument is that even if it has less than a 1% chance of occuring, I must be prepared to accept the reality of that outcome and deal with it. When I go sailing, the probability of sinking is very low but I need to be prepared for it. I like that approach a lot. It allows for human (read: personal risk profile), ethical, emotional and religious dimensions. Let's do a mix in this post (add some stats and some other stuff)
Option 1:
OK, so let's take Option 1: aggressive treatment now. (No doctors are arguing about the nature of this treatment, only about the timing of it). This would be a hysterectomy (with or without removal of the ovaries, sounds like risk of spread to the ovaries isn't easy to quantify when I ask) followed by radiation.
The little data that was available on adenosarcoma has shown over a 30% risk of relapse for patients that undergo this treatment (although it's not quite accurate because some had adjuvant therapy and some did not. I don't know how the risk is distributed over this population). I thought that this was rather high...Most often when it recurs locally, it recurs at the top of the vagina or in the ovaries. In some cases, it's in other locations. This would be consistent with the 70% survival rate though post-treatment since after relapse, the numbers that I have read were not so good. 15% of the patients still alive after one year, 5% after 2 and 0% after 5...So it sounds like relapsed adenosarcoma is the real problem and that all treatments have tried to reduce the risk of relapse as much as possible.
So if I do this and if I believe this data then I would fall in the 70% category. The studies that I have read can't agree on what correlates highly with a poorer prognosis (eg. grade does not seem to)
The worst possible outcome is that I have a child, then relapse. This risk could be mitigated by waiting before having a child as I guess that the risk of relapse goes down as time goes by (?)
I would also probably feel quite good about myself because there's probably little else that I could have done, given the world's current knowledge of this disease (read none). And as a mom, I think that I can be prepared to die and not be there to raise my child so long as I have done anything that's in my power to prevent it.
The best possible outcome is that I don't relapse and have a child (somehow...). This is a reality that I am quite willing to accept. It will be tainted with regret though as I would never know whether a pregnancy would have been possible. This may be better than guilt.
The intermediate outcome #1 is that I don't relapse but can't have a child. I guess that if I try everything I can, then it's a reality that I will have to accept and that's what's in store for me. It's also a problem that many people that don't have cancer at all face every day. At least, I will have the opportunity to try.
The intermediate outcome #2 is that I relapse and don't have a child but then, it sounds like the risk of this happening would be minimized by my decision to go with Option 1. So anything else, I'd better work on accepting it and do God's will. To my knowledge which seems to be as current as the world's knowledge on this topic, there is nothing in my lifestyle that I would have had to alter to reduce the risk of developing adenosarcoma.
So Option 1 lead to outcomes I can deal with, even though it does deviate from an ideal family planning route and will not be something I can easily accept (when I was first told about a hysterectomy, it felt like I had just lost a child)
Option 2:
This means wait for a couple of months, work on perfecting insemination techniques, get pregnant ASAP, try to carry the baby to viability then go to Option 1. Total wait time could range anywhere between 12 to 18 months (including the fact that I did go through an IVF cycle as an insurance policy, have not had a hysterectomy yet). Risk of local recurrence after trachelectomy is high so there is a high risk of tiny little cancer cells left behind. Those cells can be managed locally through resection but what I learned today is that the wait would increase the chances of one of those cells taking a ride in a vein and travel to the lungs to make babies, hence would increase the risk of non-local recurrence. This is probably what doctors meant by "risk of non local recurrence is LOW, in their opinion, but NOT zero".
Best Outcome: I can get pregnant in no time, deliver a baby and go through Option 1. I would feel pretty good about this of course, this is the main advantage of Option 2 and it would mean that it was successful. I would have a stressful pregnancy most likely and would not get to enjoy my child full time for a few months after birth since I would have to go through treatment.
Now, the likelihood of this outcome is rather low (20% maybe). We do have quite a bit of data on this so we can certainly estimate it. I read on the Internet that success rates of IVF insemination hover around 30%, it will be lower for me as there is a risk that my cervix won't heal perfectly and make it harder for either sperm or embryos to get through. I have some 70% chances to deliver a healthy baby. And I also found out that the average time for a couple who can conceive successfully from the time they start trying is about 6 months. Since I need to achieve the same feat in less than 2 months, my chances of success are less than 50%. So let's say between 20 to 40% overall from today. Let's note that the risk of local recurrence is over 50%. She has also given an opinion about the % increase in risk (combined) associated with waiting. She could not give a strong basis for this estimate but she did say 5% and it's the only number I have. Let's assume an initial risk of 1% of non local recurrence (that would be low by stats standards, in fact, noise given most error margins...) and let's assume that this 5% applies to both local and non local recurrence risk. Then the total risk of non local recurrence with waiting would be 6%. For someone with a child, knowing that survival chance will be reduced by 6% sounds high to me. My risk profile changes with a child, I will be willing to take fewer risks because I will feel responsible toward this child.
Worst outcome (there's no point in going through the intermediate here because if I can't accept the worst outcome, then this option should no longer be viable). I get pregnant but the local recurrence happens fairly early on and my doctors feel that they should interrupt the pregnancy. I would feel awful for three reasons:
a) I would feel very guilty because I would have known that there was an increased risk to this pregnancy due to this cancer diagnosis and yet, I would have gone ahead. So part of this outcome would be because of my decision. There is also a risk of this pregnancy being "interrupted" through a miscarriage because I don't have a cervix. However, this was a risk associated with the trachelectomy in the first place. It would exist even for women who have a more predictable cervical cancer.
b) I would feel worse about losing a child mid-pregnancy than not attempting a pregnancy.
c) My overall survival rate would be lower for certain (how much is unsure but if the local recurrence is noticeable, it means that it was active for a little while and could have sent more cells elsewhere). This is scenario that was referred to as "Oh Shit, I should have taken the most conservative route".
Out of these three, b ranks first in how bad I would feel and the combination of a+b is a real problem. I would have actively contributed to an abortion...I don't care so much about c in this case because it concerns only me, not me + a child. I frankly am not sure if I am willing to accept this. I would have to think some more about this but I think that losing a child to cancer (indirectly) mid-pregnancy sounds like the worst possible thing I could do from a human, ethical, religious (I am catholic) and emotional perspective.
How likely is this outcome? I don't know because the 50% that I was quoted was within a 5 year window. However, if there is a local recurrence, it will most likely happen soon (within 2 years). So it sounds like the risk is front-loaded and decreases over time. What's unclear is the impact on pregnancy. What's clear is that it will increase the risk of non local recurrence (if it can be seen on a scan, it will probably be quite active already) so I would be in a bit of a dilemna as I may have to choose between my life and my baby's.
So my decision might rest on a+b. I could assume a minimum risk of 0.001%, probably higher than the likelihood of getting hit by a whale.
Sorry for the length of this post and potential typos (I have not proof-read this post). I will think about this some more.
************************
Chat with the ship's medical officer.
- high risk of local recurrence is equivalent to high risk of microscopic cancer cells left behind
- risk of non local recurrence increases with time if microscopic cancer cells are still present
- it is possible to manage the disease LOCALLY through resection during or right after a pregnancy but this won't apply to non local instances of the disease. This sounds like a reasonable approach if the tumor is considered low grade (slow growing) and if the goal is organ preservation. It is not the standard course of treatment which is defined to increase the likelihood of survival.
- This kind of disease seems to favor travelling through the blood stream. So the next likely organ on the list would be lungs. This would be very difficult to treat.
- Chemotherapy would be a big question mark in terms of how helpful it would be
- This cancer is hard to detect and if it has spread to other parts of the body might not be detected for a little while, thus increasing the chance of it spreading to yet another part of the body. So assuming that it has spread to the lungs and can be dealt with, it might next show up somewhere else, and so on and so forth. Not quite what I want to spend the rest of my life dealing with
- Even for known cancers; historical data does not explain everything as each individual and each cancer will have a unique biology. In particular, in my case, since there is no case history, the range of possibilities is big
- Melanoma and sarcoma are really very different diseases and the melanoma comparison is probably not relevant
- The low grade factor plays a role in the short-term decision as it would affect the time after which the tumor needs to really be resected. It is not clear how it influences the non local recurrence risk since this type of cancer seems to be keeping some of these new cells locally but could also send some remotely at all stages of development.
- Sarcomas do not typically metastase through the lymphatic system but through the blood stream. However, removing the lymph nodes with the hysterectomy (at least a sample) would be fine. It increases the risk of lymphoedema (eg. swelling of the legs) combined with radiations.
- It is hard to quantify the risk of spread to the ovaries
Hope that I am not forgetting anything. I didn't take notes...
- If the final pathology report looks bad, then Option 2 disappears
- Else, I can go back to the a+b discussion from the previous post
"My advice on how to make your decision, which is different from my opinion on the best treatment option, is to raise your thoughts to a higher level and not let them get tangled in the details. Having the mind untangle details is somewhat comforting, but it prevents it from looking at the issue holistically. Step back from the issue and try to look at it from an unattached perspective -- then ask yourself what decision seems clear. "
I agree that all this new knowledge + playing with stats is reassuring. It makes me feel that I am getting to know my "enemy". It feels that I am running in circles now though since there really isn't a good basis for stats and pathologists can't even agree on the diagnosis/grade of the tumor.
We then walked through all the possible outcomes for the two options. This friend's argument is that even if it has less than a 1% chance of occuring, I must be prepared to accept the reality of that outcome and deal with it. When I go sailing, the probability of sinking is very low but I need to be prepared for it. I like that approach a lot. It allows for human (read: personal risk profile), ethical, emotional and religious dimensions. Let's do a mix in this post (add some stats and some other stuff)
Option 1:
OK, so let's take Option 1: aggressive treatment now. (No doctors are arguing about the nature of this treatment, only about the timing of it). This would be a hysterectomy (with or without removal of the ovaries, sounds like risk of spread to the ovaries isn't easy to quantify when I ask) followed by radiation.
The little data that was available on adenosarcoma has shown over a 30% risk of relapse for patients that undergo this treatment (although it's not quite accurate because some had adjuvant therapy and some did not. I don't know how the risk is distributed over this population). I thought that this was rather high...Most often when it recurs locally, it recurs at the top of the vagina or in the ovaries. In some cases, it's in other locations. This would be consistent with the 70% survival rate though post-treatment since after relapse, the numbers that I have read were not so good. 15% of the patients still alive after one year, 5% after 2 and 0% after 5...So it sounds like relapsed adenosarcoma is the real problem and that all treatments have tried to reduce the risk of relapse as much as possible.
So if I do this and if I believe this data then I would fall in the 70% category. The studies that I have read can't agree on what correlates highly with a poorer prognosis (eg. grade does not seem to)
The worst possible outcome is that I have a child, then relapse. This risk could be mitigated by waiting before having a child as I guess that the risk of relapse goes down as time goes by (?)
I would also probably feel quite good about myself because there's probably little else that I could have done, given the world's current knowledge of this disease (read none). And as a mom, I think that I can be prepared to die and not be there to raise my child so long as I have done anything that's in my power to prevent it.
The best possible outcome is that I don't relapse and have a child (somehow...). This is a reality that I am quite willing to accept. It will be tainted with regret though as I would never know whether a pregnancy would have been possible. This may be better than guilt.
The intermediate outcome #1 is that I don't relapse but can't have a child. I guess that if I try everything I can, then it's a reality that I will have to accept and that's what's in store for me. It's also a problem that many people that don't have cancer at all face every day. At least, I will have the opportunity to try.
The intermediate outcome #2 is that I relapse and don't have a child but then, it sounds like the risk of this happening would be minimized by my decision to go with Option 1. So anything else, I'd better work on accepting it and do God's will. To my knowledge which seems to be as current as the world's knowledge on this topic, there is nothing in my lifestyle that I would have had to alter to reduce the risk of developing adenosarcoma.
So Option 1 lead to outcomes I can deal with, even though it does deviate from an ideal family planning route and will not be something I can easily accept (when I was first told about a hysterectomy, it felt like I had just lost a child)
Option 2:
This means wait for a couple of months, work on perfecting insemination techniques, get pregnant ASAP, try to carry the baby to viability then go to Option 1. Total wait time could range anywhere between 12 to 18 months (including the fact that I did go through an IVF cycle as an insurance policy, have not had a hysterectomy yet). Risk of local recurrence after trachelectomy is high so there is a high risk of tiny little cancer cells left behind. Those cells can be managed locally through resection but what I learned today is that the wait would increase the chances of one of those cells taking a ride in a vein and travel to the lungs to make babies, hence would increase the risk of non-local recurrence. This is probably what doctors meant by "risk of non local recurrence is LOW, in their opinion, but NOT zero".
Best Outcome: I can get pregnant in no time, deliver a baby and go through Option 1. I would feel pretty good about this of course, this is the main advantage of Option 2 and it would mean that it was successful. I would have a stressful pregnancy most likely and would not get to enjoy my child full time for a few months after birth since I would have to go through treatment.
Now, the likelihood of this outcome is rather low (20% maybe). We do have quite a bit of data on this so we can certainly estimate it. I read on the Internet that success rates of IVF insemination hover around 30%, it will be lower for me as there is a risk that my cervix won't heal perfectly and make it harder for either sperm or embryos to get through. I have some 70% chances to deliver a healthy baby. And I also found out that the average time for a couple who can conceive successfully from the time they start trying is about 6 months. Since I need to achieve the same feat in less than 2 months, my chances of success are less than 50%. So let's say between 20 to 40% overall from today. Let's note that the risk of local recurrence is over 50%. She has also given an opinion about the % increase in risk (combined) associated with waiting. She could not give a strong basis for this estimate but she did say 5% and it's the only number I have. Let's assume an initial risk of 1% of non local recurrence (that would be low by stats standards, in fact, noise given most error margins...) and let's assume that this 5% applies to both local and non local recurrence risk. Then the total risk of non local recurrence with waiting would be 6%. For someone with a child, knowing that survival chance will be reduced by 6% sounds high to me. My risk profile changes with a child, I will be willing to take fewer risks because I will feel responsible toward this child.
Worst outcome (there's no point in going through the intermediate here because if I can't accept the worst outcome, then this option should no longer be viable). I get pregnant but the local recurrence happens fairly early on and my doctors feel that they should interrupt the pregnancy. I would feel awful for three reasons:
a) I would feel very guilty because I would have known that there was an increased risk to this pregnancy due to this cancer diagnosis and yet, I would have gone ahead. So part of this outcome would be because of my decision. There is also a risk of this pregnancy being "interrupted" through a miscarriage because I don't have a cervix. However, this was a risk associated with the trachelectomy in the first place. It would exist even for women who have a more predictable cervical cancer.
b) I would feel worse about losing a child mid-pregnancy than not attempting a pregnancy.
c) My overall survival rate would be lower for certain (how much is unsure but if the local recurrence is noticeable, it means that it was active for a little while and could have sent more cells elsewhere). This is scenario that was referred to as "Oh Shit, I should have taken the most conservative route".
Out of these three, b ranks first in how bad I would feel and the combination of a+b is a real problem. I would have actively contributed to an abortion...I don't care so much about c in this case because it concerns only me, not me + a child. I frankly am not sure if I am willing to accept this. I would have to think some more about this but I think that losing a child to cancer (indirectly) mid-pregnancy sounds like the worst possible thing I could do from a human, ethical, religious (I am catholic) and emotional perspective.
How likely is this outcome? I don't know because the 50% that I was quoted was within a 5 year window. However, if there is a local recurrence, it will most likely happen soon (within 2 years). So it sounds like the risk is front-loaded and decreases over time. What's unclear is the impact on pregnancy. What's clear is that it will increase the risk of non local recurrence (if it can be seen on a scan, it will probably be quite active already) so I would be in a bit of a dilemna as I may have to choose between my life and my baby's.
So my decision might rest on a+b. I could assume a minimum risk of 0.001%, probably higher than the likelihood of getting hit by a whale.
Sorry for the length of this post and potential typos (I have not proof-read this post). I will think about this some more.
************************
Chat with the ship's medical officer.
- high risk of local recurrence is equivalent to high risk of microscopic cancer cells left behind
- risk of non local recurrence increases with time if microscopic cancer cells are still present
- it is possible to manage the disease LOCALLY through resection during or right after a pregnancy but this won't apply to non local instances of the disease. This sounds like a reasonable approach if the tumor is considered low grade (slow growing) and if the goal is organ preservation. It is not the standard course of treatment which is defined to increase the likelihood of survival.
- This kind of disease seems to favor travelling through the blood stream. So the next likely organ on the list would be lungs. This would be very difficult to treat.
- Chemotherapy would be a big question mark in terms of how helpful it would be
- This cancer is hard to detect and if it has spread to other parts of the body might not be detected for a little while, thus increasing the chance of it spreading to yet another part of the body. So assuming that it has spread to the lungs and can be dealt with, it might next show up somewhere else, and so on and so forth. Not quite what I want to spend the rest of my life dealing with
- Even for known cancers; historical data does not explain everything as each individual and each cancer will have a unique biology. In particular, in my case, since there is no case history, the range of possibilities is big
- Melanoma and sarcoma are really very different diseases and the melanoma comparison is probably not relevant
- The low grade factor plays a role in the short-term decision as it would affect the time after which the tumor needs to really be resected. It is not clear how it influences the non local recurrence risk since this type of cancer seems to be keeping some of these new cells locally but could also send some remotely at all stages of development.
- Sarcomas do not typically metastase through the lymphatic system but through the blood stream. However, removing the lymph nodes with the hysterectomy (at least a sample) would be fine. It increases the risk of lymphoedema (eg. swelling of the legs) combined with radiations.
- It is hard to quantify the risk of spread to the ovaries
Hope that I am not forgetting anything. I didn't take notes...
- If the final pathology report looks bad, then Option 2 disappears
- Else, I can go back to the a+b discussion from the previous post
posted by Finance Monkey at 11:41 AM
1 Comments:
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