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!

Good to hear your doing well. Habbibu. I was desperate to start trying again, when i was in follow up, but when follow up finished, i was too scared for ages, because i thought it might happen again. It was hard because when someone would say, ' but it's a 1 in 5000 chance of it happening again...', I thought 'yes, but it was a 1 in 10,000 chance of it happening the first time!'
Fortunately a lovely consultant (who I would quite like to marry), said the wise words 'just stop thinking so much about it', and i got pregnantwith dd1 shortly afterwards. Actually he said lots of lovely things about fear and regret and Lance Armstrong as well, but it would probably all come out sounding quite sickly, so I will shut up and just wish you luck.

only just seen your thread. i had a molar pregnancy in 2005. after chemo i had to wait 1 year. i then got pregnant with my beautifull little girl ruby who just had her first birthday last wednesday. she has made my family complete we also had a little boy who is 5.

hazeyjane - you here? I was wondering what happens when you do get pregnant. Entertaining myself with the idea of starting early, and then getting the first inkling of being pregnant from frantic phonecall from Ninewells telling me hcg levels are up... But, what happens when you do get a positive test? I mean, after 6 months it's pretty much bound to be a pregnancy (or a new mole, but let's draw a veil over that just now) - but it could also in theory be a recurrence, couldn't it? Was your hcg monitored throughout pregnancy?

Hello Habbibu

I don't think they can monitor you when you become pregnant (they didn't with me) as your hcg levels will be raised from the pregnancy, so would confuse the issue. I contacted charing cross as soon as I was pregnant, and thety tell you the procedure. I had quite a few scans early on (pre 10 weeks), and they would specifically look for molar tissue. I had to have a consultant, rather than just a midwife and had lots of student doctors come in to ask me questions ( I did feel like a bit of a freak show for a while!). They also wanted to send my placenta off for analysis, afterwards, not sure why. After the birth Charing Cross wanted a blood and wee sample after 6 weeks. It was exactly the same procedure with dd2, who was born a year later.

So hopefully you will be all set to go by Christmas! I'll be keeping everything crossed for you.

Thanks for this, hj. Another scan fest, then. Had 7 scans with dd2, so I guess that's a record to beat(!) Did you have consultant-led care all the way through your pregnancies? I wonder if they monitor more if you've had GTD, though... Oh, I cannot wait for this follow-up to be over. Don't know how you managed to do the chemo and long follow-up .

Habbibu I had a partial molar back in Jan of 07. After a few months I was getting really broody and phoned up the centre in Sheffield. They were really helpful, talked through everything with me and said they would support me if I decided to try earlier, which I did.

Once pregnant we were scanned at about 8 weeks. We were taken pretty good care of as we have also had a baby with cystic hygroma.

Afterwards I just had to send off a urine sample which was thankfully normal and have been discharged.

Perhaps it is worth ringing up the centre you are under for a chat?

Habibu -- I got pg early with ds after a molar pg. IIRC I knew I was pg when I sent the sample off. I got a letter back saying something to the effect of 'your sample indicates you may be pg, please contact your GP'. It was ten years ago so can't remember exact details, but that was the gist.

After giving birth, placenta goes off for histology, and you send a blood/urine sample 6 weeks after the birth or so.

Hope all going well for you.

ooh - now you're tempting me... I've got this stupid thing in my head - I've been pregnant 3 times - each time it's taken 5 months, and each time I've got pregnant in January. Have this stupid idea that I'm missing my window of opportunity! Man, I am turning into a loon...

Wow, 7 scans, I thought I was doing well with 6! but I did have to have an extra anomaly scan, so that wasn't related to the mp. Yes, to the consultant led care, partly because of mp, but also because of 3rd degree tear in 1st pregnancy. I think I was probably monitered pretty closely because of the persistence of my mp, and I guess it varies depending on where you are.

I actually found it quite good for me to have to wait to ttc, because we had been trying for 5 years previous to mp, and having fertility treatment, and I think it may have been making me slightly loopy. So part of me found it a bit of a relief to be told not to try! Although another part of me was screaming 'I'm 36, I can't wait for a whole year!!!!'

I now have mental image of you doffing your hat (a trilby at a jaunty angle, I hope) whilst listening to Elvis Costello.

I didn't actually mean to, Habibu, and got a right b*llocking off my GP (in the nicest possible way). But it's v. hard to use contraception reliably when all you want is a baby.

in my case it was only 4 months after the mole and I was meant to be on a 12-month conception ban.

In my defence he's 9 now, and very very lovely.

Wow 7 scans! I thought I was doing well having 6 (but I did have an extra anomaly scan, so not related to the mp). I did have consultant led care through both pregnancies, but with 2nd it was because I had a 3rd degree tear with dd1. I guess I may have been monitered more closely because of the persistence of my mp, but it probably varies depending on where you are as well.

Part of me was relieved to be told to wait before trying, because we had been trying for 5 years before the mp, and having fertlity treatment, so i was going just a little bit mad, by that time! Of course part of me was screaming 'wait a whole year, are you insane, i'm 36 you fools!'

I hope the hat you are doffing is a trilby worn at a jaunty angle, the perfect hat to wear when listening to Elvis Costello

I can't beilieve it I just typed that whole message again, because it disappeared! Now I know where it disappeared to, what an idiot

HJ - I got the early scans too - but only had 2 extra early on, then back to the 'normal' set of appointments - no extra people monitoring or seniority of people doing scans etc. I wonder why there is so much difference?

Hello Mistlethrush

I think it is difficult with something like mp, because there is little experience of it, and because of the nature of the disease (ie it being treated at just the 3 centres) I found that the MW and consultant seemed to be asking me all the questions, rather than them telling me what I should do.

I did get the impression though that I was an 'interesting case' (freak show ), so had extra people involved for that reason.

My mw completely forgot about the whole thing which wasn't particularly helpful. Certainly by that stage, no one took any notice. Did get very good post mc follow -up - you say mp they say scan and hcg tests immediately - and the postal tests get closer together.... At least they are not the 12 hr ones now!

Ooh - are later tests not 12 hours, then? What shall I do with my pisjoeg?

Unless they expect me to fit 12 hours worth of wee into one of those teeny tiny test tubes, then no, thankfully not 12 hour tests.

Pisjoeg might look nice with a big bunch of dandelions (are they the flowers that are supposed to make you wee? or was that some craziness from my mother?)

Did they take your whole sample? I collect it, measure and note the volume, and then put a sample in a little tube. How did you get your vat of piss to the hospital?!! (and no, have never heard of diuretic daffoldils...)

It just goes to show how differently things are done in different places, the only 12 hour wee samples I had to do was a couple right at the beginning (when i was staying at Charing Cross, so just had to take all my wee to the nurses).

I did have to do a 12 hour sample once before years ago (for something else) and had to carry a big plastic bottle around with me, I remember taking it to work in a rucksack, and then taking it on the underground to the hospital - it was a nightmare, I had visions of someone snatching my bag on the tube, oh the humiliation!

I think Dundee is different, as they're covering the whole of Scotland, much of which is v. rural, so they don't do so many blood tests, but do lots of 12 hour samples. Ho hum. Only 2 more to go, I hope!

I got a letter about 2 years ago saying that they'd done some tests and could change from 12 hr (no, you collect it all and then send a small sample of it and dispose of the rest!) to a 1st thing in the morning - SOOOO much easier. Never had samples done in hospital at all.

HJ did you get to the stage where even the phlabotomists (sp?) couldn't find a vein to get a blood sample out? I managed to hold up the whole hospital one morning - one had 3 goes then gave up (after hitting nerve) - boss came and managed to get some after much poking around - I felt really faint and she wanted to get a wheelchair to get me back up to the day room - I refused but she still insisted on walking me all the way once I'd recovered a bit - meant that they went down to 1 chair working instead of two for at least 20mins

I think I was pretty luck as far as bloodtests go, I worked out once that I had had about 150 blood tests, 50 cannulas, and 50 injections in my bum, in a year, and the only time a blood test hurt was when a nurse who i was friendly with did one, I think she was so nervous about hurting me, that she just went too slowly. I found the phlebotomists in the hospital hurt more than the lady who took bloods in my village surgery, I didn't even notice with her, but I did end up looking like a bit of a junkie!

The stupid thing is after having dd1 I had to have a cannula put in, and cried like a baby!

I got a cannula done when they'd just decided they were going to cart me down to Sheffield. Student doc had a go first - large gauge as they were worried that I might have a big bleed - so she did some local anasthetic first. Made veins disappear. The registrar ended up doing it and poking around to try to find the vein properly for ages - nice .

I managed to get away with only 36 injections in bum - there was one that they hit a nerve with and dh had to drive home very carefully - felt like a bee had stung me for quite a long time and all the bumps hurt.

Lost track of blood tests, but less than you - did you end up having intraveinously re all the cannulas?

Yikes Mistlethrush, that sounds horrible, the nurses who did the cannulas for chemo were amazing, and used heat pads which really helped, I remember one of them saying that it's a bad idea to use local anaesthetic. Did you have to stay in at Sheffield, or did you live near enough to be able to go home? I had to have the cannulas for actinomycin d, which they switched me too when my levels started to creep back up after 6 months on methotrexate.

I felt like I'd got off lightly when I was staying in Charing Cross, being on a cancer ward kind of puts things into perspective.

Sorry if that suddenly sounded really grim!