Genetic testing is back from D&C - partial molar pregnancy UPDATED after follow up visit 1/8/15

LittleDucky · January 2015

I just got a call from the OB that my genetic testing is back from my D&C two weeks ago and that it was a partial molar pregnancy. She said they will follow my HCG level to zero and then follow it for the next six months and that I will have to wait until my HCG level stays at zero for six months before we can TTC again. She explained briefly what a partial molar pregnancy is but not in a ton of detail - I have an appointment with her on Thursday so I will be able to talk to her in more detail then. She said she wanted to talk to me now to give me a chance to digest the information and come up with questions to talk about at my appointment on Thursday, which I appreciate.

I asked her whether she thought it would be worth seeing an RE at this point and she said that she doesn't think so, since it is unlikely to occur again. I'm not sure what I think about that. Although there hardly seems to be a point in seeing an RE right away if I am benched for at least six months. I don't know. I literally got off the phone 5 minutes ago so I am still processing things. Anyone have any decent resources on partial molar pregnancies? I honestly had never heard of one before my doctor called so I am pretty overwhelmed.

imnotfancy · January 2015

I am so so sorry to see your news. I don't have any experience with molar pregnancies but I done a little research in the past and I know it can be really scary. Definitely take the time to absorb and write down questions for her. Hopefully some other ladies have some advice for you.

Nikolie93 · January 2015

I have no experience with molar pregnancies but maybe someone else does.

I just wanted to offer *hugs*. It's much harder when you don't know much about it.

I do like the fact they told you ahead of time so you can do some research and gather questions.

NOBB14 · January 2015

I have no advice on your results but want to offer hugs. You are a rockstar to be dealing with this as calmly as you are, even with partial info. I hope I am not overstepping my bounds when I say this but, in the grand scheme of things, 6 months will go by in the blink of an eye... And Somehow, some way, over that time, things will slowly get easier- because we are here to help make it easier in any way we can. Keeping you in my thoughts that call must have been a blindside. Stay strong, lady. Xoxo

buggirl72 · January 2015

Lots of (((hugs))).

If you are looking for someone else with experience with molars, MsAmandaPants is a great resource. I did not tag her to this post because she is a grad and you do not have PgAL/PAL welcome in your sig.

If you PM her I know she would be more than happy to talk with you and share her experience and what she learned.

imnotfancy · January 2015

I just sent you a PM with some info I found. Excuse any typos as I wrote it on my phone. I have pictures from the textbook if you'd would like them.

LittleDucky · January 2015

Thanks ladies, and thank you @buggirl72 for suggesting MsAmandaPants as a resource. I will probably reach out to her, and it is reassuring to know that she is a graduate. (To be honest, I did not understand what the PgAL/PAL/AL welcome thing in people's signatures meant.)

I am feeling super overwhelmed at the moment and I'm not sure how coherent I am being, but I am just so, so glad that this community is here, even though I've only been here for two weeks. ((Hugs)) to everyone.

LittleDucky · January 2015

Thanks, @Ally1986. I would love to hear what research you found - but I think I'm a bit too overwhelmed tonight. I think I am going to take a hot shower and have a glass of wine, and generally throw myself a pity party.

kreardon11 · January 2015

I had a molar pregnancy as well with twin gestations. Only one was molar though. Feel free to PM me with questions. I, like PPs, also have a ton of research. My OB actually allowed me to start trying after 5 months, and with the next pg we got pg and saw the HB before we miscarried again. GL and seriously PM anytime.

meredithcarole · January 2015

I'm sorry for the diagnosis and that you're a little overwhelmed. That is totally understandable. Your doctor is going about it with the right protocol from what I know. I think @EurydiceNymph‌ gave you a very good and concise explaination of what a partial molar pregnancy is.

I would agree with your OB that at this time there is no reason for you to see an RE. Though many of us are under the care of an RE, the point at which to seek that additional help is not simply the point at which you have had a MC or a partial molar. In my case, for instance, I am AMA, I knew I had fibroids, and I went 6 months after my MC of trying without a BFP. If you are under 35 then you probably need to seek treatment only if you a) go 12 months of trying without success (after your 6 months with 0 betas), b) have irregular cycles, c) have an autoimmune issue of some sort (lupus, celiac, RA, etc.), or d) have another loss. In the meantime your OB hasn't given you any reason to not trust her medical experience or skill so I would let them follow your betas and try again when you are able.

So many (((hugs)))

rslh10 · January 2015

@ktlovess I love when you talk nerdy :-B

So many hugs to you, @LittleDucky‌!!!

LittleDucky · January 2015

Thank you, ladies. I took a long shower and now I am going to put myself to bed. I really appreciate those of you who offered to talk more individually - I will contact you when I've processed things a bit more and I'm in a better emotional place.

lcwed · January 2015

I am so sorry and I just wanted to send you big hugs.

alm288 · January 2015

I'm sorry for the news - sending (((hugs)))

Frenchteachermama · January 2015

Sending you huge ((hugs)). So sorry, we are here for you.

rmpar29 · January 2015

I have no experience, just (((((HUGS))))

lycih · January 2015

I'm sorry, that has to be overwhelming. Big, big hugs

LittleDucky · January 2015

And this is why I generally don't tell anyone IRL about my losses..... I just told the secretary I work with about the results from the testing (she's the only one in my office who knows anything) and her response was "I know that isn't ideal, but at least your doctor is saying that you can try again."

UGH. DH has not been helpful either. He processes things very differently than I do and I know he's dealing with this in his own way. But it's just hard.

meredithcarole · January 2015

I'm sorry @littleducky. I think people inherently try to "fix" things or offer "silver linings" to "help." The problem is that is sympathy and not empathy. There is not much you can do about the secretary (other than not sharing with her if it upsets you), but if you haven't yet, you can show YH that video on empathy that was posted on the miscarriage/loss board. I liked it so well that I reposted it here last week, too.

dandb925 · January 2015

Bigs ((hugs)) to you!!

Littleowl913 · January 2015

((HUGS))

LittleDucky · January 2015

I had my follow up appointment with my OB today and it went well. She took the time to discuss my big long list of questions with me, which I appreciated.

My OB acknowledged that the six month waiting period is pretty arbitrary following a partial molar pregnancy, and she said that in her 20 years of practice the only times she had ever had someone who was being followed after a partial mole have HCG that went up after reaching zero was when the patient had an accidental pregnancy. She emphasized that the most important thing was to make sure that my levels are decreasing and get to zero, and she said if I want to wait three months instead of six, she would be ok with that. She did emphasize that the standard of care is to wait six months (even though she couldn't tell me why that is the standard of care).

By the time I got out of my appointment today the lab was closed, so I will probably go get my blood drawn tomorrow or Saturday (most likely Saturday, since I still can't drive because of my broken toe, so DH can drive me on Saturday). She said it could take 4-8 weeks for my HCG to get to zero, so we'll see. I'm keeping my fingers crossed that my HCG drops within the next few weeks and that I'll be able to TTC again sometime in May.

I'm still not having the easiest time, but I feel better having a plan and knowing what we'll be doing moving forward. Going into the OB's office was difficult, since I have a lot of anxiety associated with that office at this point, but my doctor was super nice and I appreciated that she seemed to actually listen to what I had to say. I did end up crying when she asked me how I was doing (and I am NOT a public crier). But all in all, although of course I wish I hadn't had a partial molar pregnancy to begin with, the appointment itself went about as well as I could have hoped for.

Thank you again to all of you who have offered support to me on this thread and/or reached out individually to me. I've really appreciated it.

Nikolie93 · January 2015

It seems you had a good followup, I'm glad you felt your Dr listened to you.

I hope your numbers drop quickly!

schuebja · January 2015

I'm so sorry you are going through this. It looks like you've gotten some resources from the other ladies, but just want to send you hugs. I had a complete molar in October and had done a lot of research too, so if you are looking for more information, I can PM you. I'm glad your appointment today went well and you have a plan in place.

Kalidawn523 · January 2015

I'm so sorry that was such a hard visit but I'm so glad that you got some answers and a plan. FX your numbers drop quickly and you can begin to heal and move forward. (((Hugs)))

MrsG80inTN · January 2015

I have no advice, but wanted to offer you hugs.

megrae12 · January 2015

I am sorry you are dealing with this, hun. So many ((Hugs))

MyFirstRaspberry · January 2015

Piling on more ((hugs)) I am very sorry you are dealing with a partial molar.

As a couple of other ladies mentioned, I too have experienced a partial molar pregnancy. You are not alone. The benched time was really difficult on me. Find your self some hobbies if you don't already have some.

The one comforting thing my doctor told me is that there was nothing I could have done to prevent the loss.

imnotfancy · January 2015

From my understanding, the reason you might wait the 6 mo vs 3 mo is... If you ended up with the rare complications post mole (it growing back and such), they could could not treat it aggressively if you were pregnant again. I can see why your doctor would tell you it would be okay if you decided to start trying again after 3 months... Since the complications post partial mole are so rare.

I'm so glad you got your questions answered and are feeling a little better. Here are some more ((hugs)) today.

LittleDucky · January 2015

@imnotfancy, my understanding is that the reason for the waiting period (of whatever amount of time) is not so much that they can treat molar cells more aggressively when a patient is not pregnant, but that there is no way to tell whether molar cells are growing if someone is pregnant. The reason they track HCG to zero and then monitor thereafter is that the only sign that molar cells are growing is that HCG level goes up. But if a patient is pregnant, the HCG goes up anyway, and they can't tell whether the HCG is going up due to pregnancy or due to the growing molar cells.

Anyways, there is absolutely a justification for tracking HCG to zero and keeping an eye for some period of time, but what is the "right" amount of time to monitor once you get to zero is not totally agreed upon. The six month standard waiting period is the same for complete molar pregnancies and partial molar pregnancies even though the risk of molar cells growing is way higher for complete moles than partial moles.Because the risk of molar cells growing after getting to zero at all is SO low, and because the risk of molar cells growing after staying at zero for three months is SO, SO low, my doctor was ok with monitoring for three months after than six. Of course, this is a tentative plan, so we will see how long it takes for me to get HCG to zero and talk again.

I would never go against medical recommendations, but I did want to talk to my OB and ask her why she was recommending various things. I am thankful that she was willing to talk with me and explain the reasons the standard is to recommend various things, and that she was amenable to a three month waiting period (assuming betas drop to 0 relatively quickly).

imnotfancy · January 2015

Oh, Ok. I get that. You have learned so much already!

LittleDucky · January 2015

imnotfancy said:

Oh, Ok. I get that. You have learned so much already!

I think I might have gone a little crazy with Dr. Google. Still, I appreciate that my OB called a few days before my appointment so by the time I went in I had researched enough to have an informed discussion!

jsls926 · January 2015

I went through a partial molar pregnancy December 2013 (they couldn't find a heartbeat at the first ultrasound) and went through the D&E. The genetic testing came back as a partial molar, and I had to do the same thing you're doing; once a month HCG level checks. It can be pretty tough to go through that each month since it reminds you of the lost pregnancy. However it seems most people go on to have normal pregnancies. This is the link my doctor gave me to read:

https://my.clevelandclinic.org/health/diseases_conditions/hic_Partial_Molar_Pregnancy

good luck and know there's a light at the end of the tunnel! take time off from TTC (my husband and i went on a vacation!) and then were ready to go once we got the all clear.

Genetic testing is back from D&C - partial molar pregnancy UPDATED after follow up visit 1/8/15

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