Molar pregnancy - please tell me your positive stories! I need cheering up...

[Habbibu]

Just back from hospital - test results after EPRC showed partial molar pregnancy. Tired, fed up and in need of good news stories. Please!

claire, i'll have a think (its a big question!). Its hard to know how to address the advice given when being diagnosed with a mp, because IME, experiences of it vary so widely (eg the length of follow up, whether chemo is necessary etc). One thing I would try to clarify is it's definition within the realm of cancer (as this is the area where I have met most confusion). Most of the info I found was on the internet, and I found I often had more information than various doctors! I will try and post again tomorrow.

Mabelina, that sounds very strange (I'm not sure they would be able to tell if it was an mp as early as 5 weeks), I hope your friend is ok.

Hi Claire, this is something I feel could be so useful!! At my hospital (Homerton in London) I was told I had a molar pregnancy, when I asked for some information, they printed off about three sheets of A4 with in depth information about the condition HOWEVER, I think that it was a resource meant for medical professionals as the terminology was very hard to understand. I actually found this to be more confusing and upsetting as with limited knowledge of this terminology, it seemed to imply that the condition was cancerous. I totally agree with hazeyjane that a simplified explanation of this would probably set alot of minds at rest.
The things I wanted to know were WHY this had happened (again, it is only recently that I have found a simplified explanation of this). As hazeyjane says, the follow up varies depending on the centre so I am not sure how you would cover this easily.
So (after alot of waffle on my part!!) I guess I am saying what I would have liked is a simple explanation of exactly what a molar pregnancy is, what causes it, how it is dealt with.
Will have a look and see if I can find any of the information I had, and let you know if I think any more on it....

Mabelina, if it was a molar pregnancy then the baby would not be fine - they just can't survive; they don't have the normal sets of chromosomes. It sounds like it may have been a misdiagnosis - I don't see how they could tell at 5 weeks...

Claire - luckily my hospital was the Scottish monitoring centre for mp, and I knew my consultant well, so we got very good information. I agree with hj - the "location" of hydatidiform mole and GTD in the realm of cancer/tumour would help - I know that dh got very scared about that, and I had to read more (and post on here!) to convince him it wasn't so terrifying!

The Why would help, though I know it's not always clear, and also the differences between partial and complete mole. Details of how follow-up works, etc would be really helpful.

I spent A Lot of time on PubMed...

claire i think i met you when i was diagnosed??? with jane shilito. it was 1st december, i was the one you were both surprised had heard of molar pregnancies and i said it was thanks to mumsnet that i did!

Hi,

Thankyou all very much for your advice - it's been really useful to me. I'll let you know when I've produced the first leaflet and I might ask you to have a look at it and give me some feedback if that's ok.

Yes Ruddynorah - I did meet you on the 1st with Dr Shillito. I had a look on this website after you mentioned it and I was amazed by how many discussions on molar pregnancy there were. Thanks for talking to me the other week. I hope you are well.

I was diagnosed with a partial mole after a 12 week scan revealed the baby had died in March - scans I had had at 7 and 8 weeks were both fine.

My HCG levels got back to normal just after the 8 weeks cut off, but they let me go onto the 6 month follow-up anyway which would have ended in September.

But we had a happy accident in June and I'm now 30 weeks pregnant and everything seems to be fine. I'm getting more scans than I would otherwise be getting and the hospital wants to send my placenta off for testing after the birth, but other than that I am completely normal.... apart from the loss of pregnancy naivete - I now know far more about what can go wrong - which on the plus side means that I appreciate the fact that it's going right all the more.

Good luck to you.

I'm bumping this, as I realise I've been hanging round the talkboards blethering, and did not think to update all the lovely people who were so very supportive to me last year.

Well, am 36 weeks pregnant today, and all is well. I'm huge, there's no molar regrowth, and am very happy. It was so helpful to have so much support and advice from everyone here while I was going through the whole thing. Many thanks to you all, and do keep your fingers crossed, won't you?

and thank you habbibu! you were a big help to me

i'm due in 7 weeks ish

7 weeks! Man - time flies. Good luck with everything.

I'm so happy for you, Habbibu and Ruddynorah.

Good luck

Hi Ruddynorah - saw this thread and wanted to congratulate you - you must have worked quickly to be due so soon!

I disappeared from the molar threads for a while as, once sending the tests off to Sheffield became routine, I really wanted to forget the whole molar pregnancy thing and use the 6 months to get my head together for the next attempt.

Good news for me too - I was discharged from Sheffield in early May and, fingers crossed, DS will have a sibling arriving at the beginning of April 2010. Still a long way to go though!

All the best to you and everyone else who's been through it

Oh, great news, Aniyan. Hope all continues to go well.

Just in case any of you lovely cheerleaders missed the announcement - ds was born on 1st Oct. 9lb 1 oz, so smaller than dd, but the spitting image of her, and just gorgeous.

RN - you must be due very soon - hope all's well.

Aniyan - keep us posted, please!