molar pregancy - can anyone give me some info so I can support my friend?

[olivo]

my friend has just been diagnosed with a molar pregnancy and I would like to support her the best i can. I have googled a bit but am quite confused. Do they leave you to miscarry and then give a D and C? She is about 9 weeks, she thinks. She said yesterday (after she found out -she had been in hospital with severe sickness) that she 'would have to have surgery'.

I'd really appreciate it if anyone could give me any info on what she'll have to go through, and how i can best support her. her dh is lovely but no doubt he too will need support.
thank you.

[cadelaide]

no experience olivo, bumping for you.

[Posey]

I had one in 2000. After the scan, I was allowed home overnight then went in the next day for a d&c. Because I didn't have it til late in the day, they kept me in overnight.
After that I was referred to Charing Cross hospital (which takes everyone from the south). Otherwise it is Sheffield I think or a hospital in Scotland. They then monitor you with blood tests, then urine tests to keep an eye on your hormone levels. If all the molar tissue has been successfully removed, hormone levels should drop pretty rapidly. What they don't want to see is a rise in the level as this may mean there is some tissue remaining which may grow.
In my case I had my first bllod test at my local hosp, they sent the sample to Charing X. After that I had urine sample kits sent to me in the post which I then sent back!
I'll see if I can find the website for Charing X which was very useful.

Hope your friend is feeling okay. Was this her first pregnancy? It was my 2nd, and I have subsequently had another normal pregnancy and healthy baby.

[hester]

I don't know much, I'm afraid, but this is what I picked up recently when a friend went through similar. Oviously the pregnancy will have to end, so I guess a D&C is on the cards. Then they will have to monitor her with regular urine tests to check her HCG levels, perhaps for up to a year. Molar pregnancies are quite serious in that if they are left unmonitored there is an associated cancer risk, but your friend should be reassured that the vast majority of molar pregnancies do NOT lead to cancer, and those that start going dodgy are treated successfully at an early pre-cancerous stage. So there is no risk to her life if she is being monitored, as she will be. But it does mean that she can't conceive again until they have given her the all-clear.

I hope I've got that right. Have you tried googling it?

[Posey]

The website is hmole-chorio.org.uk
There's a good section on info for patients.

[olivo]

thank you everyone. this was her 2nd pg, we had our first babies at roughly the same time. It is helpful to hear your info - I don't want to be in her face but want to be there to support her if she needs it and so needed to understand myself. I did google it but was still a bit confused. Another friend ( not a very close one so didnt really feel i could ask her) had a molar and went on to have a healthy baby and is now pg again and being monitored closely.

thanks for the link posey, i will have a look and note it down should my friend need/want it. do you know how long it is usually before yo ucan conceive again?

[Posey]

Bear in mind my mole was 8 years ago so things may have changed, but I think they advised 6 months of negative results before trying to conceive again.
HTH

[olivo]

thanks Posey.

[frogs]

Posey, have you stolen my life?

I had a molar pg in 1998, also my 2nd pg. Went on to have two more babies, but did conceive ds rather sooner than was recommended.

The testing is annoying rather than intrusive, tho my blood tests took longer than usual to go back to normal.

It was a devastating experience at the time, but seems like a distant blip now. It does get better with time, and for most people it is just a one-off. I think you need to give a couple of urine samples after every subsequent pg as well, just to make sure.

[suwoo]

I'm very sorry to hear all your sad stories , I apologise for my ignorance but I've never heard of this, what does it mean?

[olivo]

thanks again folks. just spoken to my friend's dh, she is in theatre now. she is, quite naturally, very stressed out and he is shattered.. They are so worried about the future too, as well as the devastating news about this baby.
have told them to let me know what i can do to help and will just text etc until she wants a visitor.

[olivo]

sorry, forgot to say, thanks for sharing your knowledge and experiences on this difficult subject. It really helps and I hope it will help her too.

[Posey]

suwoo - have a look at the link further down. It really is a very good site and explains all about molar pregnancy much better than I could.

Frogs - you're right about having to get back in touch with Charing Cross if you get pregnant again, I'd forgotten that. Think they sent me urine sample kit, but may have had a blood test too.

Olivo - hope your friend and her dh are okay. Its a rotten thing to happen, but you are so closely monitored that any problems are quickly picked up.

[hazeyjane]

Hi Olivo
Hope your friend is doing ok. I had a molar pregnancy in 2003 (have had 2 babies since).
I had to have 2 d&c's, followed by chemotherapy (because molar tissue remained after each d&c, and it can grow very quicky), this is rare BTW, so hopefully this will not happen to your friend. The good thing (and bad thing, because it can drag on) is that you are very closely monitered by Charing Cross (or one of the other centres),to measure your hcg levels, so that chances of it being persistent or recurring are rare.Because I had a long period of chemo, I was unable to TTC for a year after, but if the d&c is 'successful' then I think it is 6 months.
It is a little known disease, and can be difficult to explain to people. There is a website with a forum, started by a lady who had a MP www.molarpregnancy.co.uk, which she might be interested in.
You sound like a great friend, and I'm sure your support will be a huge help to her.

[LOVEMYMUM]

My sister had a molar pregnancy. She was 24 and it is rare to have it at a young age. The mole was spotted at her 12 week scan. She has since had two healthy children. Please tell your friend that a molar pregnancy is rare.

[Mungarra]

I had a molar pregnancy nearly 2 years ago. They don't let you miscarry naturally. You have a D&C because cells are growing when they shouldn't be and it needs to be cleared out. It is scary for the first two months when you don't know if your hsg levels are going to go down or not.

I had 6 months of follow up with Charing Cross hospital and was in the 50 percent, who don't need any more follow up. 1 in 12 with a molar pregnancy need to have chemotherapy. Charing Cross hospital has a website with information for patients.

I had a missed miscarriage later that year and had 10 weeks of follow up after that. I now have a 6 week old baby and am also being followed up again. Basically, after any pregnancy (no matter how short it is), she'll need to be followed up to make sure that the cells don't continue growing.

The hospital will refer her for follow up after her D&C.

[HeatherFJ]

I had a molar in Feb 2002. Scan, no foetus and the placenta looks like a bunch of grapes.

I had a D&C and bloods tests about 2 weeks later. They then monitor you for a year with weekly urine tests (dropped to 2 weekly after 6 months) They are looking for an increase in hormones that could indicate some of the mole/dodgy cells were left behind and could grow and become cancerous. It's rare but it can cause cancer of the uterus which can be fatal but I thinks that's in less than 5%. It also means you can't try for another baby for a year and nor can you go on the pill as this contains the hormone they are looking for and gives false readings.

12 months after my mole I was given the all clear and conceived in March 2003. My daughter was born Dec 2003

[MadFran]

Hi. I had a molar preg in Jan this year. Twas a real shock. Your friend will have struggled with her hormones telling her she's pregnant. It really messed my head up for a bit. All calmed down now. I've just sent off my 3rd urine sample to Charing Cross. Gotta have a clear 6 months b4 risking getting preg again. . which is hard when you've set your heart on it.
Your friend won't have much longer to go.