Ask and you shall receive

Visiting Dr. GO today was on the top shelf of best decisions I ever made. Right up there with marrying DH and adopting my dogs. THANK YOU THANK YOU THANK YOU to all who encouraged me to go as I deliberated last week. You were 100% right and I owe all of my newfound joy to each of you. I came very close to skipping it. Especially since, wouldn't you know, everyone and their mother at work wanted to schedule a meeting this morning. I had to ward them all off, one by one, reshuffling, rescheduling, lots of back and forth, disappointing a few people, mildly. But it wasn't too hard since I've foregone vacation this summer just to make hours. I feel entitled to take a couple hours off. And it's not like I spent the couple hours at a bar by the beach. It was a medical appointment.

There are a couple punchlines here, so without further ado: (1) He effectively eliminated The Wait and (2) he completely, utterly and consciously undermined everything that Dr. OBG said during The Conversation and made her look the fool. Actually, "fool" isn't a harsh enough word. Hateful Bitch is more appropriate.

Here's the longer, more detailed version. My appointment was for 9am and Dr. GO made his first appearance at 9:56. I spent that whole hour praying that it would be worth it, but without much hope. I thought Dr. GO would be stern and consistent with what Dr. OBG had said (she had said that she didn't think there was any chance that The Wait would be shortened by Dr. GO, after all). A nurse practitioner came in at one point to get to know me and my case a little. She was new and told me that the doctors at her prior facility would ask people in my situation to wait for one year. My heart sank. Maybe this was a bad idea.

When Dr. GO showed up, he said some interesting things, from both a personal and medical perspective, NONE of which involved a 7.5 month wait.

First the bad news: He does think I had GTD. He doesn't think a left over piece of tissue or second miscarriage would have had the same pattern of HCG levels as the trend that I had. He said when normal tissue is treated with MTX, HCG usually comes straight down - or pretty close to it. It took over a month after my last MTX injection for my levels to come down. While this is bad news, because it means I probably had cancer (albeit a mild, highly treatable form), it also vindicates my theory that it was not a second miscarriage and flies in the face of what Dr. OBG has maintained all this time.

The good news is he has no reason to think it has any higher likelihood of recurring in the next six months than at any time thereafter. Which means what you think it means - he said we could try again right away!!!
Excuse me? I said....so all these molar pregnancy patients and GTD sufferers are being told to wait 6-12 months for NO reason at all?!? He said the reason for the 6-12 month wait times were (a) solely for differential diagnosis purposes (the need to be able distinguish between GTD and a healthy pregnancy if HCG levels rise) and (b) outdated due to advances in HCG tests and ultrasound technology.

He said the differential diagnosis thing shouldn't be an issue for me because I am "compulsive" enough about my care - meaning I will be in Dr. OBG's office first thing when HCG goes up, I'll get early ultrasounds, and we'll be able to determine quickly whether what I have is a healthy pregnancy or not. No need to monitor for 6-12. He did say that if I had come in with no questions or concerns or desires he would recommend 6 months from the time HCG normalized (less than 2). He didn't understand Dr. OBG's whole 7.5 thing. So where did that come from? Anyway, the reason he would have suggested 6 months was mostly because not everyone is as alert to their conditions as I am (sometimes this condition is never diagnosed since most doctors do not follow their patients' levels to zero after every pregnancy and m/c - even though GTD can occur after ANY pregnancy event) and he wants to make sure he catches any GTD recurrence quickly. A lot of patients won't come in or won't know anything is wrong until "they're coughing up blood, because they just don't know what to be alert for" he said, morosely, "we're not worried about that with you." This was all a pretty big shock, but it makes sense to me because I am painfully aware of the pattern of GTD and what to watch out for. I've also heard that, notwithstanding these long wait times that you always hear about, a patient with GTD or a molar pregnancy is considered to be in "remission" after three normal beta results. So remission occurs in three weeks. Not 12 months. He said my situation is "resolved." He's not worried that this year's case will recur. He said I am at an elevated risk for getting GTD again, but not by much (my risk goes from about 1/1000 to 1/100) and that risk will not change depending on when I start to TTC again. Whether I start tomorrow or three years from now, my chances are still elevated.

So my ticker has flown through time to the middle of November. Why November, you may ask, and not immediately? Well, I have a dentist appointment that involves X-rays on Sept. 2. And, more importantly, I read one study that suggests that if you are treated with MTX, it can be found in your tissue for up to six months (although Dr. GO says that it's mostly out of your system in a few days). So that would put me at the beginning of November.

And I have to admit that I still have this nagging feeling that I should wait longer. Because that's all I've ever read. A good patient would wait the whole time. There are blogs of women on the Stirrup Queen's list that did wait, the entire waiting period - 12 months in one case. Was that really unnecessary? Maybe the research and technology in this area have developed that much in just a short time. Maybe my doctor is just not afraid of lawsuits. I have this impulse that I can't shake to think that waiting a few more months will be better, I will be safer. I have to remind myself that my oncologist is not worried if I start sooner. NOT WORRIED! It's my doctor telling me this! Not a website, not another anecdote, my oncologist. And when I asked him how we should break this news to Dr. OBG, given her conviction that I simply must wait 7.5 months and not ask questions, period, he stopped me by saying "Astrid, do what you want, if you get pregnant, you can tell them that I said you could." It was adorable. And a little weird.

He said, straight up, that the six and twelve month wait times were totally arbitrary, on some level. But he also said that not a lot of research (or research money) goes into the study of wait times after GTD. "It's not like breast cancer" he said. So while he doesn't have any reason to think there's any higher chance of recurrence in the first six months after a zero result, he also acknowledged that there wasn't research supporting the shorter wait time either. And, to repeat, he said the longer wait times were not meant to allow for the risk of reocurrence, but to enable doctors to make a diagnosis.

He hugged me before I left. I think it's because I was on the verge of tears. Of joy. So the appointment had as severe an effect on me as The Conversation but of course in the opposite direction. I felt happy and relieved and lucky and thankful and like I was walking on air. Not just at the shorter wait period, but at the thought of feeling informed and supported by my doctor. Amazing what that will do to a person's mood.

Still, there are things that bug me. I wish I had asked what the recurrence rate is. And I wish I had drilled a little more into - why the long waits? Maybe it is to make a diagnosis, but why six months? Why a year? Once you hit zero is there any question that an elevated HCG level would be cause for concern? I would expect that most patients with this condition watch that level like a hawk and are just as alert to their conditions as I am. And yet still, the protocol is 6-12 months. In any case, I think I will be ready to try in November. I think that is long enough. My doctor said it was long enough. The only other question is whether I'll be able to hold out even that long. I think the longer I have to get used to Dr. GO's opinion, the more waiting at all seems futile. Silly even. Hmmm.