More Oncologist Advice

Hello Klingons,

I have just talked with the retired radiation oncologist. I was very touched by this conversation. He was an extremely sweet person who said "please make sure that you speak loud enough so that I can hear you. I am 85 to quote only the major health deficit."

He said that he was going to talk to me as if I were his daughter, adding that if he learned that a 32-year-old daughter would have to have a hysterectomy, he would be very sad, but he would be devastated if he learned that this same daughter died. There was a lot of emotion in his voice. He said that he would be willing to talk to me all day if that's what it took to make me change my mind. He also said that I should keep talking and talking and talking before I make a final call on this. He said that as a physician he has dedicated his life to preserving life. As such anything he is going to tell me is what is the best course of action to preserve life in his opinion. NOT to preserve organ structure. It was a long conversation (he did most of the talking). Here are the main points.

- Sarcomas are very nasty beasts. Adenosarcoma is among the nicest of them but still a very nasty beast
- The reason why they are nasty isn't so much because they are aggressive (although they all grow super aggressive after a little while) but because they are resistant to a lot of the regular cancer treatments, so prognosis is very poor.
- Soft tissue adenosarcoma is a very rare tumor and there's virtually no data out there. The good news is that you get a lot of specialists who want to take a look at the case, the bad news is that they have no data to look at to make decisions.
- Sarcomas usually start as low grade (because they don't form a tumor then grow it, they migrate as individual cells to nearby tissues). However, after a while, they all become high grade (or rather, the grade becomes irrelevant) because the size of the tumor now determines the growth rate.
- Sarcomas first spread around nearby tissues with the jumping habit (in my case, that means that depending on how much time it's been there, there is a possibility that it is in the following area: uterus, cervix, Fallopian tubes, ovaries, vagina and vulva, even though the furthest of those have a much lower chance of already being affected. I mean, an inch for a microscopic cell must be like a light-year for us). Then, they are very eager to find a blood stream and they first metastase through the blood stream. Only at the very late stages will they metastase through the lymphatic system (that is based on known history).
- Recurrence rates do not seem to be correlated with the grade but they are with the type of treatment (eg the more tissue you remove, the less chances the tumor will come back). Still, they are among the cancers with the highest relapse rates just because they spread and seed without anyone noticing.
- This physician doesn't actually think that what's in the cervix is the primary tumor. His strong feeling is that it did start in the uterus and is spreading from there. He also said that for all he knows, it could have started in the ovaries.
- He believes that tumor boards answer the question they are asked. In this case, he feels that the question they were contemplating was "how can we maintaing max organ structure", not "what is the recommended course of action for uterine adenosarcoma. He said that physicians find solutions for their patients and can do pretty much what the patient wants them to do, even if it is not the right solution to preserve life.
- He doesn't care about which grade it is. He said that the grade only affected the rate of growth at the beginning. He doesn't change the jumping habit, in fact it is a product of the jumping habit and as far as he knows, there's so little data and this is a cancer that is SO HARD to treat if it is not caught by surgery that anything that's not a hysterectomy is too big of a gamble as far as he is concerned. He said that even for low grade sarcomas, there's no way of knowing how long they have been in the body and for this particular sarcoma, how long it will take for it to become more aggressive. He said that with a carcinoma, even an aggressive one, he would be more comfortable with different approaches because they are known entities. Not with sarcomas.

His main points were
- There is no data out there to make any decision. Be as aggressive and as conservative as possible in your treatment options
- Do not gamble on your life. It's not worth it. Because there is no data, it's a gamble
- Cancer treatments and research have made a lot of progress but NOT around sarcomas.
- This type of sarcoma is rare among the rare and one of the most determinant factors for treatment efficacy in terms of how spot on an oncologist's opinion will be is case history...there is no case history.
- This tiny little thing can kill me - and if I do nothing will kill me. The only question will be how long it will take. This type of sarcomas do not kill people by doing damage locally. They kill people because they spread without man knowing how to contain them and without telling anyone about where they go, thus seeding loads of new tumors all over the place.
- He thinks that if I don't do a hysterectomy now, I will live in hell because every day I will wonder when and where it will relapse
- He understands the emotional dilemna and how hard this decision is, apparently much harder than with patients that are told, you are just going to lose one of your feet. He still thinks that a radical hysterectomy right now is the right thing to do to preserve life. It is not a guarantee but the best shot I will ever get at a cure.

But then of course, he said that only I could make this decision and that I should stop by and say 'hi' next time I am on the East Coast. I'll be sure to bring a few of my pathology slides with me for his living-room.

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I also called the oncologist who is currently treating a patient with recurrent uterine adenosarcoma (it recurred after a hysterectomy). He is not a GYN oncologist so he also asked the GYN onc. department and did some research. Here's what he had to say:

- There isn't a lot of data
- Treatment options are limited because everything is experimental. It's not that chemo doesn't work, it is that we don't know what drug(s) to administer. Adjuvant radiations may work better.
- Consensus is toward the hysterectomy - however, if it is really an early tumor, starting with a trachelectomy, esp. if the Stanford expert has voted OK - could be reasonable. He feels that he doesn't have enough data to make that call.
- He thinks that it's OK to do a trachelectomy, even if soon after, it is followed by a hysterectomy. It shouldn't spread the cancer further if it is performed by a trained oncologist. The main risk is related to anesthesia but he doesn't think that it is very big for someone my age. Apparently, I am more likely to get hit by a car tomorrow than to suffer brain damage from this operation.
- Doing the trachelectomy shouldn't do any harm. It will also help the oncologist confirm the staging and see if she sees anything wrong with the uterus when she goes in, or if it still looks pretty clean. They will also send the tissue to pathology labs so there will be a lot more data available.
- Waiting for one year is a very long time for a cancer, even if it is in early stages. It was already big enough to show up on scans (and fall into the > 2cm category)
- He would still recommend a hysterectomy now - he said that it is my best chance of survival.
- This tumor is heterogenous so he wouldn't bet on knowing the grade by just looking at a sample. Some of those cells may be low-grade, some may be high-grade
- Sarcomas are really hard to treat if surgery doesn't remove them. After a relapse, prognosis is usually very poor. If it spreads outside of the uterus, even if it doesn't really metastase, eg, just spread by tissue hopping, the prognosis would be much poorer.
- He is giving chemo now to the lady that relapsed. He has no idea whether or not it will work. He couldn't find any suggestions anywhere as to what treatment would work best.
- He doesn't believe that removing both the ovaries is necessary at this point. He would like the oncologist to perform the hysterectomy abdominally so she can take a look at the ovaries and see if they look weird. Or perhaps remove one of them to send in for a biopsy. It is also possible to slice out a small section of an ovary, freeze it and use it for biopsy. However, given the dual and heterogenous nature of this type of cancer, it may not provide enough sample.
- Since it is so rare and since there is no data, he thinks that I am bound to hear many different opinions. He doesn't believe that they can all be founded since there is no way of knowing how this cancer will behave. Did I say that in his opinion, a hysterectomy is the safest way to go?

Bottom line, no harm done with a trachelectomy. Hysterectomy is safer. So I can follow my plan of:
- challenge my oncologist with those opinions
- get the city hospital tumor board opinion
- go for the trachelectomy
- discuss next step after pathology results and surgery info