News from the tumor board!!
Today is Christmas. No kidding. I just spoke with the oncologist #2. They have looked at all the information and discussed my case at length at the Tumor Board (the head of the cancer center, my oncologist, some other guy and one of the top oncologists in the country are on this board) and there is a consensus!!! (by the way, the lead guy had seen the first sample when it was sent to the Stanford Lab).
- this type of cancer is rare, especially arising in the cervix/uterus, so most of the data that they can work with will be with cancers of the same type in other parts of the body.
- the tumor must be really young - so closer to the 5 yr mark - and in this case, a complete resection may be enough to contend the cancer for quite a while. After a while, it will most likely return in the same area and grow from there. When is hard to tell
- Sarcomas at this stage in general don't typically spread through microscopic blood vessels or lymph nodes so if she performs a radical trachelectomy (removal of the cervix), she thinks that she will leave the lymph nodes in, as well as the blood vessels around the cervix. She said that this would really help with fertility. Note that the other oncologist wanted to remove the lymph nodes to double check. She really said that there was no data out there to support this. If I didn't want to get pregnant, she probably would have but it has other side effects (swollen legs, etc...) which I might as well try to avoid.
- Sarcomas in general spread by invading tissue after tissue first, not through metastasis (only when they are more advanced).
- I am really lucky that they have found this so early. Most people would not have had any symptoms at this stage (yeah, I am a really cool person...)
- I DO NOT NEED A RADICAL HYSTERECTOMY AT THIS STAGE - IT IS SAFE TO WAIT
- I will need to be monitored super closely as there is a very high risk that this cancer will come back, even with resection, at least for the next 2-5 years, and there is a risk that the uterus has some cancer cells in it. However, because the cancer is early, she doesn't believe that it requires a hysterectomy and she believes that it will behave like a nice healthy uterus during a pregnancy, and bravely meets its OKR.
- The trachelectomy (removal of the cervix) was apparently invented by a French doctor (of course!!!) who died 2 years ago and who was a pioneer in preserving fertility in women with cancer.
- The oncologist can't give me a percentage change or a timeline for when I would need a hysterectomy. She said that the more I waited the more I would run the risk of having a cancer grow during a pregnancy. She feels than one pregnancy (eg, started as soon as possible) will be OK for sure. I asked if I could wait a little longer (for anyone who's not in the know, I don't have a partner right now) and that is something she can't answer. Maybe, Maybe not. The other oncologist told me: "don't wait for 5 years, we're really talking 1 yr or so here" but then he also wanted to remove the lymph nodes...and make it harder for me to bear a child...
Where is this taking us?
- Oncologist is fine with me harvesting some eggs and freezing eggs/embryos this next cycle. She said that she really doesn't think that she would have to remove the ovaries at this stage but she understands that I want to keep all options open...
- Option 1: Hysterectomy is still open if I want to do this (then no worries ever again), she feels comfortable not removing the ovaries. However, this is not the only option!!!!!
- Option 2: Remove the cervix, leave the lymph nodes in, monitor and get pregnant :)
- Option 3: Do nothing and wait and try to have a baby as soon as possible WITH THE CERVIX still in place. There are cancer cells there, so she said that this was great from a fertility standpoint but there was a high chance of the cancer growing back in that area and of the need of a procedure prior to the end of the pregnancy. The cervix will have to go for sure fairly soon. She does not recommend this approach.
- Option 4: remove another portion of the cervix but try to leave as much in place as possible. However, if they still find cancer cells, they will have to do another surgery, then yet another one. The MRI seems to indicate that this tumor is pretty much all over the place. Pros: only the minimum will be removed from the uterus (for now at least), Cons: risk of having to go through multiple general anesthesia procedures in a short amount of time, - and delay a pregnancy...
So I even end up with more choices than before. She said that there was a small chance that if they remove the cervix entirely and if there are no cancer cells in the uterus, it might grow back so late in life that removing the uterus won't be an issue for me...it's small but exists. She also said that since they don't really know much about this type of cancer, it could grow back, mutate into some sort of monster tumor and devor the whole thing in 12 months. But then, they would catch this.
So next steps are:
- Appt with the fertility doctor to discuss the risk of pregnancies without a cervix (will probably be my preferred option from a safety standpoint)
- Appt with regular OB to get her view on that as well
- Appt with oncologist after I discuss with those two docs, so in the next 2-3 weeks
I talked to my manager because I couldn't concentrate at work. He said that it was OK if it was going to be only a few days. I think that I already feel much better and that I can make this decision pretty soon (there's less urgency too because of the harvesting cycle). So I will probably need a couple of days to digest all this and then back in business!!!!
The trees looks particularly beautiful around campus today, and my cats have to be the most majestic of all the animal reign. Even my blackberry looks kind of attractive right now.
- this type of cancer is rare, especially arising in the cervix/uterus, so most of the data that they can work with will be with cancers of the same type in other parts of the body.
- the tumor must be really young - so closer to the 5 yr mark - and in this case, a complete resection may be enough to contend the cancer for quite a while. After a while, it will most likely return in the same area and grow from there. When is hard to tell
- Sarcomas at this stage in general don't typically spread through microscopic blood vessels or lymph nodes so if she performs a radical trachelectomy (removal of the cervix), she thinks that she will leave the lymph nodes in, as well as the blood vessels around the cervix. She said that this would really help with fertility. Note that the other oncologist wanted to remove the lymph nodes to double check. She really said that there was no data out there to support this. If I didn't want to get pregnant, she probably would have but it has other side effects (swollen legs, etc...) which I might as well try to avoid.
- Sarcomas in general spread by invading tissue after tissue first, not through metastasis (only when they are more advanced).
- I am really lucky that they have found this so early. Most people would not have had any symptoms at this stage (yeah, I am a really cool person...)
- I DO NOT NEED A RADICAL HYSTERECTOMY AT THIS STAGE - IT IS SAFE TO WAIT
- I will need to be monitored super closely as there is a very high risk that this cancer will come back, even with resection, at least for the next 2-5 years, and there is a risk that the uterus has some cancer cells in it. However, because the cancer is early, she doesn't believe that it requires a hysterectomy and she believes that it will behave like a nice healthy uterus during a pregnancy, and bravely meets its OKR.
- The trachelectomy (removal of the cervix) was apparently invented by a French doctor (of course!!!) who died 2 years ago and who was a pioneer in preserving fertility in women with cancer.
- The oncologist can't give me a percentage change or a timeline for when I would need a hysterectomy. She said that the more I waited the more I would run the risk of having a cancer grow during a pregnancy. She feels than one pregnancy (eg, started as soon as possible) will be OK for sure. I asked if I could wait a little longer (for anyone who's not in the know, I don't have a partner right now) and that is something she can't answer. Maybe, Maybe not. The other oncologist told me: "don't wait for 5 years, we're really talking 1 yr or so here" but then he also wanted to remove the lymph nodes...and make it harder for me to bear a child...
Where is this taking us?
- Oncologist is fine with me harvesting some eggs and freezing eggs/embryos this next cycle. She said that she really doesn't think that she would have to remove the ovaries at this stage but she understands that I want to keep all options open...
- Option 1: Hysterectomy is still open if I want to do this (then no worries ever again), she feels comfortable not removing the ovaries. However, this is not the only option!!!!!
- Option 2: Remove the cervix, leave the lymph nodes in, monitor and get pregnant :)
- Option 3: Do nothing and wait and try to have a baby as soon as possible WITH THE CERVIX still in place. There are cancer cells there, so she said that this was great from a fertility standpoint but there was a high chance of the cancer growing back in that area and of the need of a procedure prior to the end of the pregnancy. The cervix will have to go for sure fairly soon. She does not recommend this approach.
- Option 4: remove another portion of the cervix but try to leave as much in place as possible. However, if they still find cancer cells, they will have to do another surgery, then yet another one. The MRI seems to indicate that this tumor is pretty much all over the place. Pros: only the minimum will be removed from the uterus (for now at least), Cons: risk of having to go through multiple general anesthesia procedures in a short amount of time, - and delay a pregnancy...
So I even end up with more choices than before. She said that there was a small chance that if they remove the cervix entirely and if there are no cancer cells in the uterus, it might grow back so late in life that removing the uterus won't be an issue for me...it's small but exists. She also said that since they don't really know much about this type of cancer, it could grow back, mutate into some sort of monster tumor and devor the whole thing in 12 months. But then, they would catch this.
So next steps are:
- Appt with the fertility doctor to discuss the risk of pregnancies without a cervix (will probably be my preferred option from a safety standpoint)
- Appt with regular OB to get her view on that as well
- Appt with oncologist after I discuss with those two docs, so in the next 2-3 weeks
I talked to my manager because I couldn't concentrate at work. He said that it was OK if it was going to be only a few days. I think that I already feel much better and that I can make this decision pretty soon (there's less urgency too because of the harvesting cycle). So I will probably need a couple of days to digest all this and then back in business!!!!
The trees looks particularly beautiful around campus today, and my cats have to be the most majestic of all the animal reign. Even my blackberry looks kind of attractive right now.
posted by Finance Monkey at 7:28 AM
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