molar pregnancy

[TOD]

HI. Has anyone ever heard of a molar pregnancy? diagnosed last week, had d and c done. have to have weekly bloods to monitor hormone levels and may not be able to try for another baby for another year. am still in a bit of shock cos i really wanted this baby and then to be told there was never even a baby there.....very confused. no information forthcoming from hospital except they will be monitoring me!!! all info on net talking about cancerous cells and possible need for chemo at some stage....all very frightening....anyone had similar experience?

yes, I've heard of it, my SIL had one. Hasn't had chemo AFAIK, but no further pregnancies (on the other hand that was her fifth and not planned, so maybe she's decided that enough was enough!).

i'm so sorry you're going through this. IIRC, there's a poster on here who had a molar pregnancy.

don't know if you've seen \link{http://www.bbc.co.uk/health/conditions/hydatidiformmole1.shtml\this} from the bbc. Says that the risk of cancer is low.

this site goes into details
\link{http://www.obgyn.net/women/women.asp?page=/women/articles/molarpreg_dah\here}

sorry you have had this, hope you ok

poor you - what a lot to have to suddenly take in and get your head round. Sorry I can't offer any advice as I don't know anything about this - but do just want to say good luck, stay calm, research but be wary of internet - there's a load of old balls on it, so read with caution. Take lots of care of yourself and go with how you are feeling each day - you will probably have a load of different emotions. Be really kind to yourself.
lots of love
dhw
x

thank for links and kind thoughts. All the articles vary. Some say 2% chance and others say 20% chance of developing cancer. But there are a lot of sucess stories also and i have a wonderful little 18 month boy who will help keep my mind off things.but have this awful sence of loss which seems a little silly since it was never a baby. my husband finding it difficult also.

Tod, don't be hard on yourself. You lost what you thought was a baby, and so did your body! It is difficult to accept, at any stage. Let yourself grieve and talk to your dh about it as much as you are able. If RL friends can't offer support, you will get plenty on here .

Thank Miaou. Do find it hard to talk to friends as dont want to bring them down.nice to be anonymous somtimes!!

Yes, when I had my ds they thought he may have had a molar twin. I have had conflicting information regarding this as they sent my placenta of to histology for examination but they said it had no 'molar charateristics'. When I was pregnant with ds I had horrific morning sickness and exceptionally high levels of HCG (the pregnancy hormone) and bled for about the first 3 months. At 12 weeks on a scan they found a 2nd sac that was empty. The consultant I was put under said that increased HCG levels are characteristic of a 'mole' and they monitored the 2nd sac, which at about 20 weeks disappeared but I continued to produce HCG right up to the birth. I was told that my body may have thought I was still carrying twins, so produced the extra amounts of hormone to sustain 2, althought 1 was dead, either that or it was a mole which I think itself, makes the hormone. Do you have any info on Molar pregnancies? I was wondering whether to look into this closer? I did read on the internet that a mole's twin rarely survives and my ds sadly and suddenly died aged 9 weeks. Althought this was put down to intrapulmonary shunting, I don't really know enough about molar pregnancies and the intrapulmonary shunt was all they could put it down to, although I got the feeling they still maybe weren't 100%

Can't really tell you much as it happened to my SIL and not me but I do know she went on (after 2 additional but 'normal' miscarriages) to have a healthy DS. I think you can find some info on the internet, I'm sure she did and I know she joined a chat group about it too which I guess she also got from the internet. She does not have cancer and AFAIK this was never considered as possibility.

Jelly.... so sorry to hear of your awful tradgedy and loss.
All i know about molar pregnancies is what i have looked up on the net so would not have enough info to advice you.
From what i have read the twin in a molar pregnancy sometimes doesnt survive to birth but not sure if it can affect a baby after birth.
However i do know that Charing Cross Hospital have molar pregnancy clinic and have email adress if you would like further information. Hopefully they have monitored your HCG levels and kept monitoring you. Sounds like you need some answers.
This is the email address....hope it helps:
[email protected]

So sorry to hear this. I've had one, back in 2000. Was diagnosed as a missed miscarriage, so had an ERPC. That routinely is sent to labs to see why you lost baby and it came back as a molar pregnancy.
I was immediately referred to Charing Cross hospital. Where are you living? If you are in the south you will be referred there, otherwise to Sheffield or Aberdeen (I think).
I had to have a blood test to check for pregnancy hormones. They should be dropping quite rapidly. If they don't fall, or even rise, then the concern is that some cells will be replicating very fast, like foetal tissue but also cancer cells. Depending on that result will determine what happens next. In my case it had dropped to almost nothing, so then it was monthly urine samples (sent in special tins to Charing X). I think, though am not completely certain, that I had to have 6 months of samples being negative to pregnancy hormone before I could try to get pregnant again.
Charing Cross had a fab wesite which had a message board which was very helpful. I can't remember off hand the address but it was something like h-chorio... you may be able to find it via the hospital website.
I must add that even if you do go on to develop cancerous cells, you are already being monitored so would be treated straight away and I was told this made it 100% cureable.

For me it was my 2nd pregnancy. I did go on, with some trepidation, to get pregnant again, and now have a 3.5 year old boy.

Please come back to me if I can help any more. Its a long time ago now so I may not remember everything and some things may have changed.

Sending you lots of hugs xxx

Yes, I had a molar pregnancy about 8 years ago, between dd1 and ds. It was awful at the time, not so much physically as emotionally -- I was desperate for another baby, and was hysterically convinced I'd never have another one. Also my hormone levels didn't go down quite as quickly as they were supposed to, so I had to have the extended monitoring, and was meant to wait even longer before conceiving again.

But it was all fine in the end you get used to peeing into a microscopic test tube (handy tip get a cheap plastic jug and decant) and explaining at great length to the hospital bloods dept exactly what you need them to do with your blood sample. The people at Charing Cross are great, and will talk to you at endless length if you need to. The risk of cancer is microscopically small -- obviously it is there, but don't overdose on internet info! I went on to have two more healthy babies, although ds was conceived (accidentally) only 4 months after the ERPC for the molar (this is not recommended, I was being crap about contraception and got a well-deserved b*llocking from GP). You do have to have a brief monitoring after subsequent pregnancies, but it's all pretty low key.

If you want to discuss off board, feel free to CAT me or post an email address and I'll mail you.

hth

The website is www.hmole-chorio.org.uk
Hope it helps.

Posey and Frogs thanks for sharing your stories with me. Its good to hear success stories...it gives me hope for future pregnancies.
Fortunately my levels are dropping quite fast..so thats a good sign and again i was lucky to have early diagnosis at 8 weeks because of spotting... so my levels never got completely out of control.
However i live in Ireland so there is no specialised unit for me to attend. At the moment I am having weekly bloods at the admissions room of the maternity hospital....not ideal. But hopefully when my levels reach normal i can have remainder of follow up whith GP.
How long before ye felt able to return to work??
Was in hospital for a week, now home two weeks and feel anxious about returning to work but know i have to face it sometime soon.

Thanks for website posey.

What a tough thing to deal with, TOD, be kind to yourself.
Hope it helps to say that a friend of mine had a molar prgenancy about four years ago, had no problems at all with her follow ups and has subsequently gone on to have a beautiful little girl.

I didn't stay in hospital at all, actually. Was diagnosed in antenatal dept during my 14-week scan. I then had the ERPC two days later, but went home the same day. I drowned my sorrows fairly heavily in alcohol (also not recommended!) so it's all a bit of a haze. I took quite a long time off work iirc -- several weeks. But that was more for emotional than physical recovery. I was in a job I hated as well, and when I went back found that in my absence my colleagues had dumped all the marking for all the jointly taught courses on my desk. So I not only had four times as much work, I had less than half the time to do it in. Fairly shortly after that I resigned.

With hindsight some fairly lifechanging decisions emerged from the wreckage of it all, but it was awful at the time, without a doubt.

TOD, don't know how the system works in Ireland, but in England they have an excellent national protocol for molar pregnancy, which means that all women with this diagnosis will be receive the same treatment. This is very reassuring, as you know that the centres of expertise (Dundee, Sheffield and Charing Cross) really do know what they are talking about, and you never need to worry whether you are getting the appropriate treatment. I don't know if there is a similar centralised system in Ireland, but you could phone Marianne Foskett's dept at Charing Cross and I'm sure someone there would be able to point you in the right direction.

Thanks Frogs. No centralised system here but info i got on Friday from hospital....(after much frusration and annoyance at lack of information coming my way from anyone in the hospital).....was Charring Cross Hospital protocol....Must follow their expertise so that is reassuring. Have also been referred to specialist ..so maybe he will be more enlightening!

My placenta was sent to Charing Cross

Jelly....I believe that Charing Cross specialises in this area so they most certainly would have been able to tell if it was a molar pregnancy, but you should contact them for more information if you need to clear a few things up.

Hi, just like to say i'm so sorry to hear of your loss, but i too went through a molar pregnancy back in 2002/2003 - not a period of my life i like to remember!!! Everything seemed to be going fine ( this was my 2nd pregnancy), although i had felt that i should'nt be attending my booking in appointment with the midwife, perhaps it was my six sense telling me something!!! It was'nt until my 12 week scan i found out i was no longer pregnant. I went on to have a erpc & then i was told it was a molar pregnancy. Even today i'm still not sure what it is. That evening i went on the internet & came away shocked & upset after reading about how it could go on & lead to 'cancer'. I went through the weekly blood tests, but unfortunately my hormone levels started to go up!! I was absolutely petrified. The initial treatment for this was a internal scan where they found a tiny piece of tissue remaining in my womb. Another erpc followed & thankfully my hcg levels slowly began to drop, & i could eventually just send in urine samples & this went on for a year. I think when you have acceptable levels for 6 months you can then try and get pregnant again - but the info from Charing Cross or your doctor will beable to tell you. I eventually became pregnant again & was very apprehensive until the 12 week scan which i was dreading due to the previous result, but everything was fine & my son will be 2 in a couple of weeks, & i also went on to have my 3rd child with no problems & he's now 6 months, so there is always light at the end of the tunnel although i know everything can seem so bleak at the moment!!! After both subsequent pregnancies i had to send a urine sample to Charing Cross 6 weeks after the birth & a blood sample at 10/12 weeks just to check everything was o.k. I hope this has helped a little & i'd like to say you're not alone, although at the time i felt very much so!!! So i send you my very best wishes and try and keep your chin up, as i know how hard all of this is for you.

Thanks Cuillan.... sorry to hear you were not picked up until your 12 week scan..must have been a horrible time for you.
Delighted to hear that you have since had 2 healthy babies after it.... I can imagine how anxious you were until your scan.....its very reassuring to hear such a lovely story...gives me hope for the future.
I still feel quite upset and emotional about the whole thing. Am due levels again tomorrow and i get anxious the night before i have them done.... hard to move on when i still have the weekly bloods...they were way down last week, so hopefully they will keep going that way.
Heres hoping!!!!

Hi TOD, Just to let you know i'm still thinking of you and hope your bloods continue to be heading in the right direction!!! You begin to start to fill like a pin cushion, and yes i know exactly where you are coming from with the nerves before the blood test & then when the results are in!!! If you can get through this, which you will, everything in life to a degree will seem like a doodle!!! On a positive note, well i had to find something positive out of this whole experience, is that blood tests no longer worry me as much!!! Anyway take good care of yourself.

Thanks Cuillan, this is the first chance i have had all week to log on.
Bloods were normal last week, had repeat ones today and also saw specialist today... he was very nice, easy to talk to and very reassuring...he is hoping to only have me followed up for 6 months all going well!!!
I am actually starting to feel a little normal now...small steps!!
Thanks for your kind words of support....