Visit to the oncologist & more MTX

The gyn-oncologist was 45 minutes late to a 9am appointment. He had emergency surgery this morning. I guess I was lucky to see him at all, considering. The appointment was just a consult, meant to put my mind at ease and answer the questions my OBGYN hasn't been able to. But it was still a little scary. He said it could be anything along a spectrum of gestational trophoblastic diseases (GTD) from a molar pregnancy to choriocarcinoma (an aggressive metastatic cancer). All of these possibilities are a form of cancer, he said. So what I heard was: "you probably have cancer." But I had already come to terms with this possibility anyway. As much as you really can come to terms with having cancer. And I can appreciate the difference between this kind of cancer and the more aggressive, less treatable kinds. That makes this easier to come to terms with.



He discussed possible Plans B and C should the MTX not work. He seemed to think today's third dose of MTX was a questionable step but said go ahead anyway. He warned against keeping at the MTX since it is a poison and perhaps isn't having much effect. But he also acknowledged that it may be working since my betas have been lower since the treatments began. He was more concerned than I hoped he would be about the fact that my levels climbed from 9 back up to 15 recently. "They almost doubled!" he exclaimed. I guess that's true. But they've stayed there, they doubled once in two weeks and they're plateauing. And really, they dropped in two or three weeks, from 21 to 15. They're not doubling like choriocarcinoma or even like a viable pregnancy.



So the next steps depend on what happens over the next week. If the MTX works, he says to continue to take a couple more doses of that. If it doesn't, he thinks we should do a pelvic scan. If the scan shows tissue that can be taken out, he thinks another D&C is in order (PleaseGodNo). If not, he thinks we should try another drug. D-actinomyacin. He also mentioned a third, the name of which I forgot. He called the trio of chemo drugs "MAC." Probably the "C" in MAC is the one I'm forgetting.



He told a horror story about a girl who had gotten down to zero, decided she didn't want to over do it with the MTX and so she rejected that final dose the Dr. had recommended, and she ended up with HCG in the thousands a couple months later because the GTD had persisted. He told me this to convince me that it's a good idea to get a couple more treatments of whatever drug ends up working even after (& if) HCG hits zero. But he also had a good story about a girl who was about to be upped to a pretty aggressive chemo regimen becuase her HCG was rising and she had a lesion on her liver suggesting the GTD had spread and suddenly, the day before the drastic measures were to start, her levels started dropping. Inexplicably. And she's been fine since.



He had a seemingly reckless approach to TTC again. He said the MTX will be sufficiently out of my system in a month, no problem, probably days. And he seemed to promote trying again in around 3 months, contrary to the 6-12 I keep hearing about. I'm trying to prepare myself to wait 12. But I know that will be difficult. And if I have a doctor telling me three, well, all the better. He seemed similarly unconcerned about the possibility of this particular incidence of gestational trophoblastic disease (GTD) recurring during a subsequent, healthy pregnancy. I asked whether they'd be able to distinguish between HCG from the healthy pregnancy and HCG from a recurrence of the GTD. He said yes, sort of. If the levels stray outside normal limits during a later pregnancy, they can conclude that the GTD has acted up again. What he didn't mention is what in the H#@(( we'd do about it if it did recur while I had a little life inside me. I don't think there's much they can do. Which is why I'm preparing myself to wait a year.



He also said that if this is a molar pregnancy (probably a partial molar in my case since there were NO signs of a mole in the pathology report or elsewhere) I have a 1% chance of this being caused again by a subsequent pregnancy. Which is not large but it is significantly larger than the baseline risk of the general population which is .01-something. He said "it's not like down syndrome, it's more like having fraternal twins." By that he meant that DS is something you carry in your DNA, a mutation - twins is more of a predisposition of your body to mechanically behave a certain way (by releasing more than one egg in this analogy).

He mentioned two possibilities of what it could be other than GTD. One was a subsequent failed pregnancy which is resolving itself. I had been over this before with my OBGYN. It seems so unlikely. But of course preferable to GTD. Although on the other hand, if we're preparing for the worst and treating it like GTD, what good would it do me if it was a second pregnancy after all. I'd still be going through chemo and waiting to TTC again.

The second non-GTD possibility is "phantom HCG." Sometimes, he says, a few hormones can interfere and present in such a way that you get a "false positive" Beta test. So there's nothing producing HCG in your system but whatever the test looks for is there in some amount. We both thought this was unlikely too. I'm not cycling (could be stress, he pointed out), I tested negative on plenty of pee sticks before I got my BFP, and it would be too weird of a coincidence I think. Or maybe the pregnancy threw my hormones totally out of whack and this is phantom hcg...

Finally, for the sake of completeness, I will mention that he encouraged me to try a progesterone trigger, like Provera, to see if AF would come. This would help rule out Ashermans and could clean out my system such that the cells that are causing such a problem are shed. I think my OBGYN had been resistant to try this until my levels reached zero, but the oncologist is going to talk to her about it.

Overall I feel more informed, basically his was a third opinion. And was consistent with the others. And now I'm in knowing hands. And I was comforted to know there are more steps we can take if the MTX doesn't do the trick. But I don't feel any more optimistic about my current condition. I feel increasingly stuck and frustrated. How could the MTX not work? It works for a lot of things, it's supposed to be the go-to drug for someone in my position. It has to work.



I'm glad he recommended against getting a CT scan to look for signs of cancer in other areas of the body - he thought it unnecessary since my levels are so low. I'm also glad he acknowledged that I could have a molar issue - and that this is probably GTD. An almost-diagnosis! Albeit a scary one. My OBGYN kept trying to sweep this possibility under the rug since the pathology report was clean. But he didn't rule anything out either. He didn't say, much to my disappointment - "this can't be choriocarcinoma because your levels would be higher." But he's also not the guy who's been hearing my weekly updates and pulling the strings on my treatment. That guy was too busy to see me. The guy I saw had to familiarize himself w/ my case in about seven seconds and given that, I think he did a pretty good job of reassuring me that this can be resolved.