Oncologist #3 and Tumor Board recommendation

Hello hitchhikers to the galaxy,

I just met with Oncologist #3. I like her a lot now. She's extremely funny, knowledgeable and I think very human. She seems to truly care about her patients. She told me a lot of patient stories. She knows their nationalities - and she seems to specialize in international cases-, she has followed them even after treatment, etc...

Before I start, I must report that I have lost 1 pound since my last doctor visit (on Friday) so I am actively working on eliminating the IVF waste :)

So, she said that she has talked to their pathologist who did take a look at the slides. He also happens to be a sarcoma specialist. Here's what he said:
"Hmm hmpf hooooom prfprf"

(I am not kidding, that's exactly what I heard)

I looked down (I was sitting on the exam table) at her with a face that must have displayed a cocktail of amusement, worry at a potential sudden declaration of madness and surprise. Since this sentence had not been spoken in any of the languages I master or slaughter, I asked for an English translation. The oncologist kindly obliged.

-"This is the rarest thing that he has seen in his entire career. It does look malignant, and it has aspects of the sarcoma but it also has some weird additional things going for it. The pathology report thus decided to call the lesion "atypical adenosarcoma". The Pathologist was so fascinated by the specimen that he's decided to continue to mess up with it, just for fun. Apparently, this made his day. I will ask Oncologist #2 to send him some more tumor tissue after the trachelectomy as a Thank You gift.

So the first piece of news is something that we have by now grown accustomed to. This is a very rare case, and a super weird looking tumor.

Armed with such precise information, oncologist #3 and the tumor board looked at the literature on adenosarcoma. That was fairly quick. No study fits my case.

Finally, they went on discussing my case....and the winner is...(drum rolls)
#1 complete hysterectomy with removal of the lymph node
#2 if the patient is aware of the risk, the board feels comfortable with a trachelectomy now without lymph node removal - and if the margins are clear, wait for ~ 6 months for tissues to heal, do an MRI. If the MRI does not show visible signs of tumor in the uterus/ex-cervix area, become pregnant. Ideally immediately after the scan. oncologist #3 suggested to wear a short skirt and invite a partner at the MRI session, so I could conceive within minutes of the results. Then go through a pregnancy - she feels confident that with the right level of care, I would have up to 70% chances to bring a baby to the 32rd week, which would be what I should strive for. Then wait for recovery and tissues to heal (probably another 6 months) and do a complete hysterectomy with removal of the lymph nodes. If the margins are not clear, then a hysterectomy at the same time as the trachelectomy (or shortly thereafter).

I asked what the risk was. She said that she couldn't tell me and didn't believe that anyone could because it is such a rare case within a rare disease family. The scans are clear and it looks like the tumor did form in one place, strangely enough but she won't know for sure about other seeds. The fact that they feel comfortable with a wait and two check up milestones. So basically, I need to be made aware of a risk that can't be quantified by anybody.

Recurrence rates (usually top of the vagina) after hysterectomy are high (over 40%, in some sarcomas, over 50%) so the risk of relapse does exist but she is not certain that waiting prior to the hysterectomy will affect this.

So she said, "I think it's OK if you have clear margins and a clear 6-month MRI to try a pregnancy. Just don't go anywhere during this pregnancy. Pop the baby out and blow this thing back into space. But then, I may be wrong. Oncologist #1 may be wrong and Oncologist #2 may be wrong. We will only know 5 years from now if you picked the right one..."

She added that there is currently no standard therapy for patients with recurrent disease. Typically, these patients are entered into ongoing clinical trials.

Upon leaving oncologist #3 said "It has been a pleasure working on your case. And just to make sure that the lawyers heard it, we do recommend a hysterectomy ;-) But I think that you can have the joy of a beautiful baby before that happens. If you ever have more of these really interesting situations, please come and see us again. And if oncologist what's-her-name breaks her leg or anything like that between now and March, I have a very very sharp knife..."

and Oncologist #2 reaction below

" My recommendations are similar for the most past - how do you think you would like to proceed?"


**************


I'd like to proceed one step at a time. Let's do the trachelectomy and wait to see if the margins are clear, if that is all right with you. It would be wonderful if I could go through a pregnancy but it looks like this doesn't have to be decided now.

After the hysterectomy, I think that I would like to be very conservative/aggressive."

*************

" as you said - let us take this one step at a time. "