molar or partial molar pregnancy

[maggie01]

Has anyone had a molar or partial molar pregnancy. My daughter is going through this at the moment and wondered if anyone else had any experience of it

[Grimalkin]

I'm sorry to hear your daughter has had this condition.  I only have limited experience of it from working in a hospital, where the patients received good care from the obs/gynae team.  Your daughter should expect to be kept well informed and receive follow-up care, and I hope you/she has confidence in her consultant.  Are you looking for further information on the condition? If so there are resources on the web.

[maggie01]

She has spent a week in a London hospital for chemo and is still having treatment but her hcg levels after coming down have now started to rise again. She is worried about having to have stronger chemo and the chances of a future pregnancy. I have found sites explaining what a partial molar is but its all new to me. Her own doctor does not know much about it and it was about 8 weeks after her d&c that she found out it was a partial molar and started treatment for it.

[Grimalkin]

It doesn't seem to be widely known about - I had never heard of it until I worked at the hospital.  You could seek further info and perhaps details of support groups through NHS Direct (tel [phone]) or the Patients Advice and Liason Service (PALS) - they have a website with contact details for your local branch.  

I would have thought her doctors/nurses would discuss the effects of the chemo itself (as well as possible recurrence of molar pregnancy) on her fertility, and be able to advise her of her options. 

It must be a worrying time for you all - best wishes for the future.

[janesmythe22]

Her Obs and Gynae consultant should know all about it.

As you mentioned 'a London hospital' I suppose that it must've been Charing Cross Hospital as one of three centres in the UK dealing specifically with 'molar pregnancies' (the other two are The Sheffield Trophoblastic Disease Centre and Ninewells Hospital, Dundee).

Just ask them to tell you all details until you get some peace of mind.

Best wishes

[maggie01]

Yes it was Kings Cross. I think she was under the impression that once she started chemo her levels would go down as they have untill this week. She is due back at the hospital in a few weeks time. She is going to make a list of all the questions she needs to ask. I was just wondering if anyone had gone through this experience. This would have been her first baby so naturally she is anxious. Thank you for your replies

[cat woman]

Hi maggie, I had a Hydatidiform Moler pregnancy in 1986, it was discovered when I went for my first scan at 16 weeks, I was devastated and was admitted into hospital that same day for a Suction and D&C, as some of these pregnancies can carry the risk of cancer, the Mole was analised and found to be benign.  As you would have found out some information, the mole mimics the pregnancy hormone, but at very high levels, mine was in 200 hundred mark and I was referred to Charing Cross hospital where every week I had to give a urine sample for them to monitor the hormone levels, I did this 18 months until the hormone level was back to normal.  I was told at the time "IF" I was to become pregnant while the hormone was still high there was a risk that could have another Moler pregnancy.  My  pregnancy was a Complete Mole, which is when only the placenta grows and there is no evidence of a fetus. I wrote to Charing Cross hospital for them to explain to me why this happens, they said that this sort of pregnancy occurs in 1 in 1500-2000 births in the UK, and it starts at conception by an extra chromosome. There is also a Partial Mole where there is evidence of a fetus and a Minor Mole where there is a successful pregnancy and is only discovered at birth.  I hope that I have helped you and your daughter in some way, I do know what you all are going through and her emotions will be very jumbled, I wish you, your daughter and family my very best wishes and sympathy.  :-)

[gss]

Like your duaghter, I have also just been diagnosed with a partial mole.  I have two gorgeous wee boys already so this was my 3rd pregnancy.  We went for the normal scan at 13weeks and were told that not only had the baby died but that they suspected I had a partial mole. I had never heard of this condition and on top of the shock, devastation and heratbreak of losing our baby, it was hard to take in.From what I understand of it, the partial mole happens when two sperm fertilise one egg.  This should be impossible and they dont seem to know why it happens. The tissue that should be the placenta then over produces and that is where the bad cells come from. I read that it only becomes malignant in 2% of woman and even then the success rate of treating it is almost 100%.

I have just sent my first lot of blood and urine to Charing Cross. When I had my D&C 6 weeks ago my hcg level was 138000.  Its now dropped to 20 so I am praying that my next reading in two weeks will be 5 and back to normal.

I have been told that the partial mole should not effect our chances of getting pregnant again.  The chance of having another molsr pregnancy are 1 in 80 which at first glance may seem high but would you bet on a horse that had 1 to 80 odds of winning!!!

I can only imagine the pain and heartache your daughter is going through.  And then the worry on top of that.  The only advice I can give you is to read all the information that charing cross gives her as its very imformative and positive.  And let her talk and cry about both loosing the baby and the health fears.

On a positive note, i have just met someone who also had the pm. It took her a year to get the all clear. She is now 11 weeks pregnant and scans have shown its normal.  There is hope

[maggie01]

my daughter has just spent a week in hospital having dactinomyacin (I think thats right) it has made her feel very tired and have a burning sensation. She is due home today where she has a week off and then she has another week on it. Her levels have never been that high, around the high 300 mark where everyone elses seem to be in the 1000s but they never seem to go down very quickly. Hopefully it will soon go down to 0. This must be hard when you have two children already as you would not expect this to happen. I'm glad you levels are dropping and you hopefully you won't have the chemo. I hope she doesn't loose her hair but she seems to think she may. Things can only get better. Good luck with your results.

[faithful]

Hi, My daughter is 21 and her first baby has turned out to be a moler pregnancy she has had 2 d&c's and has recieved her first time of chemo and now we wait. Since this has happened to you and your daughter I was wondering if you could let me know about your experiece. I read your message and my heart goes out to you, you didn't get many responses as this is such a rare disorder, I believe I am feeling just as you did in 2005 and I would really be grateful for your reply.

Sincerey Joanne

[leggers]

I had a moler pregency in nov 2005 following a miscarriage in the January, I had never heard of it and was devastated when it happened, the hospital explained that it is caused by 2 sperms getting into the egg instead of 1.

I already had a litle boy and longed for another child, I was told I could not try to get pregnant for 6 months while I sent in urine sample to the hospital to be checked for cancer.

when I got the all clear I managed to fall pregnant again in nov 06 and am delighted to say I have a beautiful healthy little boy who is 19 weeks old. I had to sent of more urine sample's to the hospital after the pregnancy and am happy to say I have been given the all clear again. Stay possitive it will all work out fine in the end.

[LOUISE9787]

Hi iam sorry to here your daughter is going through this, i was 21 when i found out i had a molar pregnancy i also had a live baby, he was 8 weeks early and after 3 months my HCG levels also went up i had chemotherapy for 4 months and got the all clear it has been 6 years now and iam healthy, my son has got developmental delays but he is a very happy child, i have been told it does not affect your fertility although there is a 10% chance of it happening again. The care and follow up is excelIent and wish your daughter family my best wishes.

[maggie01]

I just wanted to say that my daughter is now expecting a baby due in October and everything is going well. She had a scare at the beginning of this pregnancy but her scans show everything is normal.

I just wanted to share this encase anyone else is going through this at the moment. we look forward to October 10th or thereabouts

[cornishflowe]

i also have just received a letter from the hospital regarding a partial molar..
I went for my 12 week scan on the 19th Jan 2009 to be told our baby had died 3 weeks prior, that was a shock enough for us. 2 days later i went in for a D&C which all went well. thinking everything was ok and back to normal a letter came 21st March 09 explaining that i need to register with Charing Cross Hospital in london and my consultant wants to see me. This is as each of us know a very scary feeling. The literature that they give is percise but your mind goes in to sudden turmoil. I am scared, And pray that everything is gunna be ok. This was my 4th pregnancy although with a different partner, I have 3 beautiful children. I think this makes it harder cause you just think "WHY" has it gone wrong... Hard knowing what to expect, but heartwarming to read others experiences too.

[maggie01]

cornishflowe. Sorry you have to go through this.
My daughter gave birth to a healthy girl in September after all this trauma.
Her pregnancy was a nightmare for most of the way through.
Now we have a little Darcy Beau who is beautiful.
The pregnancy was made harder because she would allow herself to think of the end result encase it all went wrong again.
I have no idea why this molar think happens but I am just grateful that she now has the baby she longed for.

[cornishflowe]

thanks Maggie.

Im back to my hospital on 27th Friday.. Im really scared & nervous ,,strange cause at 37 you think i'd be ok. It's the not knowing i think that does it.

Beautiful news that ur daughter had the baby in Sept..

Thanks for your kind words,, we shall see what friday brings ...x maggie x aka cornishflower

[cornishflowe]

I went back yesterday to treliske. I got given an all clear. My hormone level didnt even register in my urine sample. Im so pleased, although the fetus is still being examined by charing cross and i still have to register with them for 6 months.

[maggie01]

Wishing you all the best and take care x

[mantony]

Hi ladies i am 34 years old and only last friday was diagnosed with a complete molar pregnancy. My HCG levels were 62,200 prior to evacuation, which dropped down to 3,220 a week later and this weeks levels have again dropped to 2,990 but unfortunatly my pregnancy test was still positive. I also live in cornwall and RCHT have now discharged me and am awaiting Charing Cross to contact me with sample kits for futher bloods and urine levels.
It is so nice to hear from other people with this condition as its a lonely old journey, even if family and friends are very supportive, but they really don't understand what it feels like to loose a child and also have the imposing threat of futher treatment.
Good luck to all you lovely ladies out there.
Mandy xx

[maggie01]

Mantony. So sorry you have to experience this. We had never heard of it before my daughter had it. It was a very worrying time but I am pleased to say she went on to have a little girl who is 10months old now and both my daughter and her daughter are very healthy.
You are right in that no one understands what you are going through because not many people have heard of it.

Wishing you all the best. thinking of you .