Here's My Dilemma (very long). Opinions/Advice Please.

[Bev]

First some history: In May 2003 I was diagnosed with a complete molar pregnancy (CMP). That means an egg with no genetic information was fertilized and implanted. The father's genetic information duplicated itself, but of course there is no baby and then what would normally be the placenta develops into a tumor called a "hydatiform mole." So to fix it all up I had a D&C to remove the tumor, and commenced with my weekly blood draws (measuring hCG) to ensure there is no re-growth. Well, I had re-growth, likely because all of the tissue had not been removed at the D&C. In the meantime, I moved across the country.

I had a second D&C to remove the remains of the tumor in June. That did not work, as my hCG continued to increase. So I began a regimen of methotrexate, 50ml IM for 12 weeks until my hCG reached "normal" plus 2 extra shots for good measure. Methotrexate preserves/does not affect fertility and is very effective used as a means to treat molar or ectopic pregnancy.

More blather: So far, I have had 3 differing opinions on when I can TTC in 3 different cities. My first opinion was by the guy that did my 1st D&C and he said 12 months from D&C not from Zero. My CMP was the first one he had seen in 8 years. The second opinion is from the two gynecological oncologists who did my 2nd D&C and my chemotherapy. They said I could try 6 months after my chemo (due to my age 37 and my otherwise excellent health). The third opinion is from my new OB (in my 3rd city now, but I'm staying put this time. http://www.ultimatebaby.com/images/smilies/smile.gif ) and he is following the "standard of care in Ontario" party line of 12 months from zero.

I have written/called the New England Trophoblastic Disease Center and they sent me a package based on their research. It says if you have a:
Partial Molar and hCG returns to normal in 7 weeks or less--3 months to TTC.
Partial Molar and hCG returns to normal in over 7 weeks--6 months to TTC.
Complete Molar (with no chemo) after hCG is normal--6 months to TTC.
Complete Molar (with chemo) after hCG is normal--12 months to TTC.

Now here, finally, is my dilemma: Why is there a difference in the wait times for chemo or no chemo? No one, in any of the dozens of hours I have spent on the internet researching this, says why. I mean, if you have normal hCG levels for 6 months with or without chemo, why should one group wait longer? The only reason you need chemo is because the tumour is growing faster than the body can destroy it. Okay, but now it is destroyed; the hCG levels confirm this. So why wait the extra 6 months?

I just don't want wait that long, and honestly, I think the gyn-onc is the expert as opposed to my OB. I'm really torn about trying in March or not. I desperately want to but if something happened I would blame myself, which I did not do with this because it is totally a fluke. Actually I guess the NETDC are the "experts" but they provide NO rationale as to why I would have to wait 12 months to TTC so why should I go along with them? I saw two Gyn-Onc's, one is head of the Obstetrics and Gynecology Department of the medical school and the other is the head of the Gynecology Oncology Division. So they must know something!

I spoke to my family doc today and she said she'd send me to another OB if I wanted, but agreed he'd probably say the same thing (ie wait 12 months); she did agree thatI should call the OB again and make another appointment to discuss what the gyn-onc said (I was too busy crying at the appointment to tell him they said 6 months). She also said, "You could just go off birth control pills in March and see what happens." (Let's be honest, if I did that I'd be charting and BD'ing like crazy!)

Whew! If you actually read all of that, my congratulations to you! Now if you don't mind giving me your opinion that would be great. Thank you. :)

[Brooke]

I read this thread earlier but I didn't post because I didn't know what to say.

I guess I have a couple questions.

1. How common are full molar pregnancies? You said your one dr. hadn't seen one in 8 years...

2. What are the chances that you will have a repeat molar pregnancy?

3. Maybe they are suggesting the 1 year wait after chemo to give the chemo time to get out of your system?

Honestly, I think it's a decision YOU and your DH have to make. What risks are you willing to take? What are the chances of a baby having defects if you don't wait the full year? Are you willing to take that chance? And what roll does your age play into all of this? There are increased risks associated with age, too.

I'm sorry this is so hard on you. It's a very difficult situation. I wish we all had the right answer. But I'm not sure there is one. Dr's recommendations are just that - suggestions. You have to weigh the consequences and do what's right for you.

[Karly]

Are they worried that if you do ttc again it will turn into another molar pregnancy? Is that the fear?

[Bev]

Brooke and Karly, Thank you so much for taking the time to read this and responding. Good questions Brooke, I should have addressed those.

1. How common are full molar pregnancies? You said your one dr. hadn't seen one in 8 years... They aren't common at all; in North America 1/1500 or 2000 pregnancies.

2. What are the chances that you will have a repeat molar pregnancy? Now that I have had one, the chances increase to 1/100. Still pretty low, really.

3. Maybe they are suggesting the 1 year wait after chemo to give the chemo time to get out of your system? I'm not sure on this, as nothing anywhere indicates it takes nearly that long to leave your system, and the oncologist at Queen's University wouldn't have said 6 months if that's the case. Of the hundreds of documents I have seen, I read one thing somewhere that mentioned about getting the eggs that were in your system at the time of chemo out by waiting, but seeing as how I'm on BCP and therefore not ovulating, I'm not getting rid of those eggs. Also, methotrexate preserves or does not negatively affect your fertility which is why they use it.

What are the chances of a baby having defects if you don't wait the full year? The risk of birth defects is the same in any pregnancy after a molar. No indication of those waiting less that defects are increased.

And what roll does your age play into all of this? There are increased risks associated with age, too. For me, it plays into it a lot. I am almost 38 and risks go up with age, as you know. If I was 27 it wouldn't be such a big deal. Also, I do want Mason to have a sibling close in age.

Are they worried that if you do ttc again it will turn into another molar pregnancy? Is that the fear? A pregnancy is molar right from the start; having said that, I think the big fear is that if there were still residual molar cells that the added hCG from a pregnancy would cause them to go into overdrive and start multiplying again. This is not really fully addressed at all. The reports all just say if there is re-growth they won't be able to know for sure due to the pregnancy. They can use ultrasound to see the tissue if there is enough to see. My big thing is that there are no reports to say once your hCG has hit zero that the tumour can come back. They want you to wait for a few months just to make sure, but I have not seen any reports that say it has ever happened. I think they are going along the lines of "better safe than sorry." Can't argue with that really.

So, DH won't really talk about it, and in fact really pissed me off today when he wouldn't get into a discussion about it with me. He doesn't really want to hear anything I have to say, he just says, "do what the doctor's say. The ones who know what they're talking about." Well who is that? The head of the University? The trophoblastic disease centre (who I didn't have to tell him about but I did) who won't explain why they want you to wait? The OB? Then when I said it was really important to me and I wanted to talk about it, he said "now you're going to pester me forever about it." Well a$$hole, now I want nothing to do with you. :angrywife

It is a very confusing thing, and I guess I am just looking to hash it out, because the person who should be doing it with me, isn't.

Thank you both. :)

[Kate]

Bev,
I really wish I had the magic answer for you. I personally would go with a modified recommendation. One doctor told you to wait 6 months, one told you to wait a year. So, how about waiting 9 months. Doctors don't know everything. This way you are being somewhat conservative without being very aggressive. KWIM??

I read a little bit about it and spoke to my brother (he is a PA) and he just says that some physcians are ultra conservative so that they are not faced with a lawsuit, while others are aggressive because they want to make their patients happy. He is also agrees with the 9 months.

HTH!!

:bighug:

~Kate

[Bev]

Kate, thanks for taking the time to read all that nonsense and to respond! I'm not sure what a PA is but we had sort of agreed with 9 months for the same reason, but now Patrick is willing to start at 6, which is great for me, and for my part, I am not going to chart or anything, but just guess at my fertile days. Which for me is a big sacrifice, but I'm sure he doesn't know that! :lol:

It is a very difficult situation. I wouldn't wish it on my worst enemy. I do go on another board specifically for molar pregnancy, and no one on there has had problems with molar tissue after they've gotten pregnant, including a gal due in July who only waited 6 months after chemo. So that makes me feel good. I swear I wouldn't be this fixated on it if I was 10 years younger.

Thanks again, Brooke, Karly and Kate. I guess we will be OTL starting in March. :)

[Kate]

A PA is a physcians assistant. He has a masters is medical science. He can write presciptions and perform surgeries. So, one step below a doctor.

Good luck in March!!

[Brooke]

Of the hundreds of documents I have seen, I read one thing somewhere that mentioned about getting the eggs that were in your system at the time of chemo out by waiting
Ok...I thought that men produce sperm all the time but women are born with all the eggs they will ever have and they don't make new ones throughout their life. So, I don't see how you can get all the eggs "out of your system" because that would be all of them and you wouldn't have any left. That's also one of the concerns with getting older - your eggs are getting older, too.

[Bev]

Ok...I thought that men produce sperm all the time but women are born with all the eggs they will ever have and they don't make new ones throughout their life. So, I don't see how you can get all the eggs "out of your system" because that would be all of them and you wouldn't have any left. That's also one of the concerns with getting older - your eggs are getting older, too.
See! Great minds think alike! (or fools seldom differ, but I prefer the former.) :lol: Kate, I thought that's what PA meant, but I have never heard of that. Thank you for your support. :)

[Ami]

I would go with the 9 months too. Most doctors, like someone else said, are really conservative to avoid lawsuits. It sounds like you have done tons of research on this, I wish you the best of luck!

[Lette]

Oh Bev.. :bighug: I know you are having a hard time with this! :bighug:

I'm older, so I know I'd probably be the same way. I can say wait the 9 months, which I think is a good suggestion, but if it were me, I'd be pushing the envelope after 6.

Good luck to you. I wish you everything you hope for.

[Cat]

I just wanted to give you a :bighug: I have read your posts with interest and agree with the ladies here. I think your Drs are all giving you different opinions just to protect their own asses. To be honest, Drs dont know everything, sure they can help prevent and protect the human body but they forget that everyone is an individual and what works for one doesnt necessarly work for everyone.

I agree, making a compromise and waiting 9 months, hopefully this time it will work out just fine :crossfing:

[Bev]

Thank you ladies, you guys are the best. :) I am comfortable with our decision, but still nervous. We will be OTL in March and I will go for broke in June if we aren't PG by then. I know I will be a wreck when I do get PG until I see the u/s and know everything is okay. Cat, I almost laughed out loud when you said you read the posts with interest. I'm surprised you didn't fall asleep! :)

[Cat]

Cat, I almost laughed out loud when you said you read the posts with interest. I'm surprised you didn't fall asleep! :):lol: No I didnt fall asleep! :) I am just interested to note that Drs on your side of the ocean are just as conservitive on this side of the pond! I had 4 D&C's in 2yrs and was given different TTC times from 3 different Dr's too (one even told me I probably wont concieve naturally! - Had stage 3 endo). I just went for broke ended up pregnant in 6 months and had a succesful pregnancy and gave birth to a beautiful girl. Who I smuggly showed of to gynecological oncologist who told me I would never conceive.

Hope thing go smoothly for you and you get a great big :bfp: at the end of March :)

[Karly]

March isn't that far away, Bev!

[Bev]

March isn't that far away, Bev!
I know! :jump2: I'm quite excited but very scared too. If we got pg right away the due date would be 3 days different than the "mole." That would make that time of year, much nicer. :) If we did the following month (assuming AF follows her schedule) it would be Mason's birthday!

[Lette]

I know I will be a wreck when I do get PG until I see the u/s and know everything is okay.
Don't worry.. We will be here for you! :bighug:

[cimberdog]

Bev,
I have no advice, but wanted to let you know a UB member Alexis (lexistiana) had a partial molar last year (no chemo) and is pg right now. You might want to PM her to see if she has any additional information she could share with you.

[Bev]

Thanks Kelli! She is the only person on these boards that I know of who had an mp. I have talked to her already. :) I do go on another board specifically for mp and you would be surprised the number of women on there!

[bunybomb]

I'm older, so I know I'd probably be the same way. I can say wait the 9 months, which I think is a good suggestion, but if it were me, I'd be pushing the envelope after 6.
I have to second what Lette has to say. If it were me, I would be pushing the envelope now, however it's easy for me to say since I haven't walked in your shoes. I have lost a pregnancy but for me it made me more determined.

Stay positive Beverly!

[Bev]

Thanks Becky! My OB says I can TTC in March! :woo: I'm not going to chart or anything, but if I'm not pg by June then I will. :)

[Aussierach]

I don't know if I'm too late with a reply I had one injection only of methotextrate and was told to wait 3 months as this is how long it takes to get out of your system.

From what I gather you had numerous doses (yes????)

the effects of methotextrate on a fetus is very harmful.

I personally would wait the full length of time to TTC again:hug99:

I'm sorry if this is not what you wanted to hear:hug99:

[Bev]

Hey Rach, I had 12 shots of methotrexate and I got two different wait times, but I'm going with the shorter which is still 6 months from the end of treatment. I did read on the internet (so it must be true!), that you have to wait because the mtx may damage the cells in an egg, so you need to expel a bunch of eggs and then give the others time to repair themselves. Also though, I think the wait time from the mole is a precaution that if there are dormant cells they don't jump up and start multiplying. Thanks for responding. :)