So sad, so scared, so confused

I saw Dr C today.

It was the first day in a month that I actually felt normal. Finally felt pretty much pain free all day after the surgery, and felt the worry behind me - we have a plan, it's not the scariest medical scenario we feared, and it will still allow a chance for us to have a child - possibly even our child.

It's been stressful between me & E because we haven't seen the pregnancy / gestational carrier thing in the same way, and it's been difficult to discuss because he doesn't feel like he has many options (except to deny me the possiblity to be a mother) and I feel like it's riskier for me and less likely to succeed in a baby that is born healthy.

I did a bunch of stuff around the house today, and thought seriously about cancelling the appointment w Dr C, but he'd been nice to us before, and I thought he might have some ideas of experts who could help us work out some of the questions around risk of pregnancy, so I kept the appointment. But I was so sure it was unnecessary that I put on makeup for the first time in several weeks - and mascara for the first time since May 25th. I've just gotten used to crying pretty much any day - even if it's just a short outburst, so rather than be all racoony I try to prevent the terrible eye makeup problems altogether.

Our visit w Dr C shattered the fragile calm. Now, he is a general oncologist, not a gynecologic oncologist, so he doesn't know the specifics of these kinds of tumors or treatments. But he knows cancer, and he knows that cancer caught very very early and completly cut out is the best kind to have. And he told us so in no uncertain terms. Basically said that since they found cancer again now in June that we were playing with fire by doing anything but a total hysterectomy right away. Said that he thought the risk of going through a pregnancy (and the additional 9+ months of having the cancer around) was really pushing what was medically advisable. He did say that an egg collection (for use in a gestational carrier), done sooner, would be a better option, but then asked why we wouldn't do that right away instead of doing the 6 months of progesterin treatment first.

Basically he scared the crap out of me.

Unfortunately he didn't scare me into not wanting to at least *try* for a baby that is genetically mine, even if I don't carry him or her. I can't stop wanting that, no matter how hard I try to make my mind accept it. Not being pregnant myself has been easy to accept - and I didn't expect it to be. But giving up the genetic link isn't the same.

He did push me into action. I've basically spent the past few days trying to get cancer-thoughts out of the front and center of m mind (where they had lived for about a month). Now they're back.

I'm trying to set up to talk to a gyn-onc at the NIH, and I need to get on the ball about getting my 3 docs talking together if we decide to go ahead. I'm pretty sure I've got too many questions about my treatment right now to go ahead and start drugs if he does send them to me without further discussion - at the least I want a clotting evaluation, and I think it makes sense to make sure the 2 fertility docs are completely onboard with whatever we do for this treatment. Including how long it will go. Still don't have the final path report with grade and hormone receptor status.

I also finally started seriously digging into the scientific literature myself. It took several hours but I think I found most of the relevant stuff. I saved it all to disk and will need to print and organize it, but it's pretty much what I'd though in late May - not very rigorous. Most typically are small case-report type abstracts, andthe most rigorous are 'studies' which are retrospective looks at a given medical center's collective experience over a number of years, in general with around 20 patients with conservative treatment for endometrial cancer (and in some cases another group with the same treatment for complex atypical hyperplasia). Not rigorous science, not prospective, not controlled, not terribly convincing.

The most reassuring things that I found out were that 1) I seem to qualify for the conservative treatment, given that I am Stage 1A, married wanting kids, and with a well-differentiated cancer (assuming this gets Grade 1 & is hormone sensitive on the final pathology, of course). 2) Most cases of "failure" of the conservative treatment with progestins is that the cancer at stage 1A is still present after treatment. The cases of tumors getting more aggressive or patients coming back with mets or things later seem to be limited to just a few cases, some of which were transplant patients taking immunosuppressants, or a 24 year old who was 'lost' to follow up for 2 years, only to re-present with cancer again, and who then again refused a hysterectomy - who later had more invasive disease.

If I sound like I'm trying to justify a decision to stay the course you'd be right. Overall I was pretty reassured by what I read - at least the criteria for who is eligible seem pretty solid, as does the monitoring program. I'm going to try to collate the various stats I gathered so I can have a better picture of risk (and share it with E), and also so that I can get a clear sense from the fertility people of where my chances stand and balance this out a bit. If I have higher chance of recurrence than a take-home baby with my eggs, that math won't work, even I can see that.

But maybe there is a way to move faster to egg collection if we are not planning a pregnancy ourselves (something it seems E accepted much easier today, hearing it from Dr C).

This is muddled - I'll need to come back to edit it when its not 4am. But maybe now I can sleep.