Back to Oncologist #1
Hi Anatomy friends,
I just met with my first oncologist. He's so busy that he had to find time over the weekend to meet (he offered, I didn't ask). He does regular trips to Asia so whenever he's in town, he's triple-booked. Even though he "made" time, I had about 20 min with him and I always felt like he was trying to push me out of his office...Of course, this may be only an impression. It is true that not all visits to the other Cancer Center are the same, in this case it was a new patient visit so they plan for a long time as they go over this long lecture (which as very helpful!). So decision #1 is what path I want to follow, and decision #2 is where to have this treatment.
So the good news is that the two doc are not really saying anything different, they just have proposed two different paths toward the same thing. Also note that the second oncologist I talked to wanted to have the opinion of the Pathology lab as well as the recommendation from the tumor board, and that after this, she might feel comfortable taking a greater risk, because she would feel that she could manage it (eg perhaps a stronger treatment but no difference in chances of cure - which is what my first oncologist is saying: risk of having a heavier treatment increases but he's still confident that he can manage the disease by watching it closely. He did say that there was a small risk of course in doing anything that's not a hysterectomy in the next three weeks because it is such a rare cancer). Here's what he said.
Option 1 (hysterectomy) is clearly the default treatment for uterine sarcomas. The first oncologist also said that she would feel comfortable leaving the ovaries and not do radiation after a hysterectomy because the chances were < 10% of spread to the ovaries. So in any case, this is going to happen (now or in ~ 1 yr from now, it will have to happen). And a year from now, the risk of having to do radiation (eg cancer spread to ovaries) or have to remove the ovaries is greater. The second oncologist did not say anything against this either. The hysterectomy would be performed through an abdominal incision, may require up to 4-5 days in the hospital and a slightly longer recovery time than the removal of the cervix.
Where they differ slightly is around option 2 but then not that much.
Option 2:
Oncologist #2 said that she would be OK removing only the cervix for now to conserve the top of the uterus. However, she said that she would want me to have radiation over several weeks to manage the risk. This would kill my ovaries.
Oncologist #1 also said today that he would have to remove the cervix. However, he said that to try to help save the ovaries for a while longer - or forever since they might not be affected by the cancer yet - he would remove the lymph nodes in this area through a laparoscopy. This would reduce significantly the risk of further spread and buy me time. He would also send them to the pathology lab. If cancer cells are found in the lymph nodes, the whole thing would get interrupted ASAP and he would remove the uterus and do radiation/chemo. He said that radiation had another side effect which is increased risk of cancer in another part of your body (even if they are very localized) and so he feels that saving the ovaries + avoiding this risk is worth it. He's not sure that there's a clear cut answer on that one.
So they are both aware of the risk and both have a suggestion to reduce it.
Oncologist #2 talked about a 60-70% to have a baby without a cervix. Oncologist #1 talked about a 50% chance, but he said that they can save a lot of premature babies as they put them in incubator which can raise the chances to 60-70% so it makes it worth trying. He also said that to minimize this risk, I'd have to stay in bed for a long long time...to avoid putting any down pressure on the cervix.
After the removal of the cervix, I would have to wait for ~ 3 months before getting pregnant as this would be the time needed for this area to heal. They would place permanent stitches (circlage) in lieu of a cervix to close the uterus and sutture the vagina directly to the top of the uterus. He said that this was a fairly common procedure. Delivery would have to be through a scheduled C-section. In this case, insurance would cover it because there would be a strong medical reason for this.
Both doctors said that ultimately, I would have to have a hysterectomy, there will be no way around this - the removal of the cervix will only be a temporary solution. Oncologist #1 feels that given the pathology report, he can manage the disease during a pregnancy. He also said that sarcomas don't seem to react badly to hormonal changes (Oncologist #2 also said that). However, he did recognize that there was a risk and that he would have to watch me very closely and would not hesitate to interrupt the pregnancy if anything abnormal were to pop up. He also did say that I am putting myself at increased risk for additional therapy but if I felt so strongly about carrying a baby, then I might think that it is worth it, which is why he's putting this option on the table.
He also agreed that success rates of IVF procedures are low with frozen eggs but very decent in his opinion with frozen embryos (although he could not give me a number). And this would remain an option in the future, after the hysterectomy - even if it is for a second child.
So the options with him are now:
option 1: hysterectomy (and lymph node removal just in case) + monitoring (as not 100% sure that ovaries or other abdominal organs are clear of cancer)
option 2: removal of cervix and lymph nodes, monitoring, pregnancy ASAP and then removal of the uterus + monitoring (as not 100% sure that ovaries or other abdominal organs are clear of cancer)
He did say that the cancer was found early (comparatively) even though the tumor was quite big which means that it probably is at least 1 yr old. He also agreed with with a tumor this size, the likelihood of having cancer cells elsewhere in the uterus are higher (Oncologist #2 also said that, that's why she wanted to do radiation). However, he feels that if the lymph nodes are intact, most likely it is still confined to the uterus and an immediate pregnancy might still be possible. He doesn't know for sure, he was clear that there was a risk and that this was not his recommended option. However, he would understand my desire to try to have a child now, and he would support it. He also said that there was a much more aggressive form of sarcomas but that the current biopsy did not reveal signs of that type. However, of course, the cancer can become more aggressive over time. Sarcomas don't turn into carcinomas but they can evolve within the universe of sarcomas and develop what is called an overgrowth (a boost of the malignant portion of the hybrid tumor) or become a combo carcinomasarcoma - there is so little data out there that it's hard to tell what will happen. (eg grow faster, the malignant potential of a cancer is the speed at which it grows and spread. All cancers ultimately grow and spread. Cancers that are too aggressive can grow faster than the time the body needs to recover in-between treatments, often this is due to genetic factors - in the case of sarcomas, there is no known genetic cause. Cancers that are not very aggressive are actually very dangerous too if they have started to spread or if they can jump places because chemotherapy is not very effective at treating them since it targets fastest growing cells, the least aggressive cancer that are non linearly invasive can grow slowly but surely... - the easiest cancer to treat fall in the middle) and he did agree that it was not a common cancer nor the easiest one to treat and that I was unbelievably lucky that it was diagnosed so early.
That's the news for today! - and it seems that co-parenting could still be an option...and the urgency is for him to know whether or not to remove the uterus or the cervix. He did say that I shouldn't wait to remove the cervix because it is still full of cancer cells.
So all in all - getting a much better idea of what's going on. Far from being an ideal situation but far from being the worst possible case.
Have a great week!
I just met with my first oncologist. He's so busy that he had to find time over the weekend to meet (he offered, I didn't ask). He does regular trips to Asia so whenever he's in town, he's triple-booked. Even though he "made" time, I had about 20 min with him and I always felt like he was trying to push me out of his office...Of course, this may be only an impression. It is true that not all visits to the other Cancer Center are the same, in this case it was a new patient visit so they plan for a long time as they go over this long lecture (which as very helpful!). So decision #1 is what path I want to follow, and decision #2 is where to have this treatment.
So the good news is that the two doc are not really saying anything different, they just have proposed two different paths toward the same thing. Also note that the second oncologist I talked to wanted to have the opinion of the Pathology lab as well as the recommendation from the tumor board, and that after this, she might feel comfortable taking a greater risk, because she would feel that she could manage it (eg perhaps a stronger treatment but no difference in chances of cure - which is what my first oncologist is saying: risk of having a heavier treatment increases but he's still confident that he can manage the disease by watching it closely. He did say that there was a small risk of course in doing anything that's not a hysterectomy in the next three weeks because it is such a rare cancer). Here's what he said.
Option 1 (hysterectomy) is clearly the default treatment for uterine sarcomas. The first oncologist also said that she would feel comfortable leaving the ovaries and not do radiation after a hysterectomy because the chances were < 10% of spread to the ovaries. So in any case, this is going to happen (now or in ~ 1 yr from now, it will have to happen). And a year from now, the risk of having to do radiation (eg cancer spread to ovaries) or have to remove the ovaries is greater. The second oncologist did not say anything against this either. The hysterectomy would be performed through an abdominal incision, may require up to 4-5 days in the hospital and a slightly longer recovery time than the removal of the cervix.
Where they differ slightly is around option 2 but then not that much.
Option 2:
Oncologist #2 said that she would be OK removing only the cervix for now to conserve the top of the uterus. However, she said that she would want me to have radiation over several weeks to manage the risk. This would kill my ovaries.
Oncologist #1 also said today that he would have to remove the cervix. However, he said that to try to help save the ovaries for a while longer - or forever since they might not be affected by the cancer yet - he would remove the lymph nodes in this area through a laparoscopy. This would reduce significantly the risk of further spread and buy me time. He would also send them to the pathology lab. If cancer cells are found in the lymph nodes, the whole thing would get interrupted ASAP and he would remove the uterus and do radiation/chemo. He said that radiation had another side effect which is increased risk of cancer in another part of your body (even if they are very localized) and so he feels that saving the ovaries + avoiding this risk is worth it. He's not sure that there's a clear cut answer on that one.
So they are both aware of the risk and both have a suggestion to reduce it.
Oncologist #2 talked about a 60-70% to have a baby without a cervix. Oncologist #1 talked about a 50% chance, but he said that they can save a lot of premature babies as they put them in incubator which can raise the chances to 60-70% so it makes it worth trying. He also said that to minimize this risk, I'd have to stay in bed for a long long time...to avoid putting any down pressure on the cervix.
After the removal of the cervix, I would have to wait for ~ 3 months before getting pregnant as this would be the time needed for this area to heal. They would place permanent stitches (circlage) in lieu of a cervix to close the uterus and sutture the vagina directly to the top of the uterus. He said that this was a fairly common procedure. Delivery would have to be through a scheduled C-section. In this case, insurance would cover it because there would be a strong medical reason for this.
Both doctors said that ultimately, I would have to have a hysterectomy, there will be no way around this - the removal of the cervix will only be a temporary solution. Oncologist #1 feels that given the pathology report, he can manage the disease during a pregnancy. He also said that sarcomas don't seem to react badly to hormonal changes (Oncologist #2 also said that). However, he did recognize that there was a risk and that he would have to watch me very closely and would not hesitate to interrupt the pregnancy if anything abnormal were to pop up. He also did say that I am putting myself at increased risk for additional therapy but if I felt so strongly about carrying a baby, then I might think that it is worth it, which is why he's putting this option on the table.
He also agreed that success rates of IVF procedures are low with frozen eggs but very decent in his opinion with frozen embryos (although he could not give me a number). And this would remain an option in the future, after the hysterectomy - even if it is for a second child.
So the options with him are now:
option 1: hysterectomy (and lymph node removal just in case) + monitoring (as not 100% sure that ovaries or other abdominal organs are clear of cancer)
option 2: removal of cervix and lymph nodes, monitoring, pregnancy ASAP and then removal of the uterus + monitoring (as not 100% sure that ovaries or other abdominal organs are clear of cancer)
He did say that the cancer was found early (comparatively) even though the tumor was quite big which means that it probably is at least 1 yr old. He also agreed with with a tumor this size, the likelihood of having cancer cells elsewhere in the uterus are higher (Oncologist #2 also said that, that's why she wanted to do radiation). However, he feels that if the lymph nodes are intact, most likely it is still confined to the uterus and an immediate pregnancy might still be possible. He doesn't know for sure, he was clear that there was a risk and that this was not his recommended option. However, he would understand my desire to try to have a child now, and he would support it. He also said that there was a much more aggressive form of sarcomas but that the current biopsy did not reveal signs of that type. However, of course, the cancer can become more aggressive over time. Sarcomas don't turn into carcinomas but they can evolve within the universe of sarcomas and develop what is called an overgrowth (a boost of the malignant portion of the hybrid tumor) or become a combo carcinomasarcoma - there is so little data out there that it's hard to tell what will happen. (eg grow faster, the malignant potential of a cancer is the speed at which it grows and spread. All cancers ultimately grow and spread. Cancers that are too aggressive can grow faster than the time the body needs to recover in-between treatments, often this is due to genetic factors - in the case of sarcomas, there is no known genetic cause. Cancers that are not very aggressive are actually very dangerous too if they have started to spread or if they can jump places because chemotherapy is not very effective at treating them since it targets fastest growing cells, the least aggressive cancer that are non linearly invasive can grow slowly but surely... - the easiest cancer to treat fall in the middle) and he did agree that it was not a common cancer nor the easiest one to treat and that I was unbelievably lucky that it was diagnosed so early.
That's the news for today! - and it seems that co-parenting could still be an option...and the urgency is for him to know whether or not to remove the uterus or the cervix. He did say that I shouldn't wait to remove the cervix because it is still full of cancer cells.
So all in all - getting a much better idea of what's going on. Far from being an ideal situation but far from being the worst possible case.
Have a great week!
posted by Finance Monkey at 7:54 PM
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