Partial molar and molar pregnancy support thread - all welcome!(514 Posts)
I thought I would start this thread as a place where anyone who is going this or has gone through this in the past could share experiences, vent about life, etc.
After a MMC at 12 weeks and an ERPC a few weeks ago I've just found out the cause was a partial mole. I've been referred to Charing Cross and am waiting to hear back from them to start the monitoring etc.
I know the chances of cancer developing are about 1/100 but I'm still struggling with the 'OMG I'm going to die' feeling at the moment, plus the grief and stress of the miscarriage itself.
I haven't told anyone in RL, other than dh, even friends who know about the miscarriage. I'm worried abut how they'll react and that I'll end up blubbing.
Also, my last 'period' was in Feb, and I have no really had any bleeding since.... minor after both D&Cs.... it seems like everyone else experiences lots more bleeding- although I'm not complaining.... should I expect it at some point?
Lucy Elizabeth- haven't really got much useful advice I'm afraid but just wanted to welcome you to the board and wish you the best of luck. I'm sure that with the chemo your levels will start to come down. It sounds like you need to take some time off work and just let yourself get some rest if that is possible. The one thing I have learnt from this molar pregnancy thing is that everybody's experience is slightly different and everybody's body seems to act in different ways so I don't know what one can say is 'normal'.
Sorry this isn't much help but fingers crossed for you.
Does anyone know if hcg levels have to be very low before AF returns? I assumed they did but my consultant told me yesterday they could return any day now. My hcg is still 299 or 1.33 according to the urine system that Sheffield use. Surely this is too high for AF to come back? I'm panicking as I really don't want it just yet. I'm still bleeding lightly after the D&C 3 weeks ago and as I have haemorrhaged previously, if I suddenly see a load of fresh blood I will really freak!
Biscuity - I found it easy to tell between the two types of bleed...
Thanks for kind words; had a bad day yesterday and really felt like I needed to communicate with people who were experiencing some/all of what I am going through. Just reading other's experiences does help. I know things will turn out ok.
Hi. I was diagnosed 14wks into my pregnancy with a complete molar pregnancy in late January of this year. They did a D&C on me and then I had to have weekly blood draws to insure my hCG levels were dropping. 6wks into the testing I was called by my family Dr and told he was referring me to a OBGYN oncologist because my hCG levels had a raise in them. It was the oncologist who sat me down and told me I had developed gestational trophablastic cancer from the tumor/mole they removed from me. I have been on chemo for going on 12wks now. They placed a PICC line in my arm that later had to be pulled due to it causing a lg blood clot in my throat. I am on anticoagulant therapy for 6 months thanks to the blood clot where I have to give myself a shot twice a day in my stomach. I'm looking for someone to talk to who has gone through this or is now going through it. My family is a horrible support system and I feel very alone and scared. There's nothing like being told you have cancer....especially from something as innocent as trying to have a baby.
All my sympathies..... I can't offer much advice or support I'm afraid as I have not been through what you have but I didn't want to read and run. I had a complete molar last month and am under the care of Sheffield. I can imagine that you are feeling very alone and scared. If your family is not supportive, is your partner around and taking care of you? Do you have friends you can rely on? I hope so. I really empathise with your last sentence, 'especially from something as innocent as trying to have a baby.' I have found myself thinking that many times over the past few weeks.
So sorry to hear about all the horrible treatment and I really hope everything goes ok for you. x
Maidenmeadow, what a terrible experience you have had. I can only imagine how scared and difficult it is for you. I have recently had a partial molar at 7 1/2 weeks, and received chemo immediately as I live in Greece and the protocol here is different.
Reading online has had both a good and bad affect for me. It is certainly scary, but these forums/blogs are good support- so please read and take strength from us that have had similar, if not the same conditions. I hope you are feeling better soon.
Hi guys... you might be wondering "what's she doing back after an all clear?" basically I am wondering that myself!
As you may know I had a molar scare which turned out to be a MMC. Scans show no molar tissue. The pathology/histology showed no molar tissue. HOWEVER the genetics showed a 69 trisomy, and my HCG is lagging (going down but slooowly over months/weeks not days) so I have been referred to Charing X for tests. I had a massive freak out because I thought they must want to chemo me... but they contacted me by phone and kindly explained it was because I live locally to Hammersmith, it would be daft not to do the most basic tests there.
In fact they seemed quite calm: "no signs of molar inside, you're partial which is only 1% chance of chemo, and you have a mild lag in HCG (9000 pre-erpc down to 300 in one month then lagging)."
Still scared - well, at least it's not a heterotopic which they thought it might be and I might rupture/lose a tube!! It's just my symptoms are so weird.
Well, my PG fell right down finally on Monday, and I'm having a second lot of bleeding which looks MC-ish not period-ish if that makes sense. I let them know and they said that unless it was painful or v heavy it was possibly a good thing as it could 'get things moving' (ie flush out my HCG). I really really hope so!!
PS. The woman on the helpline said 'typically' the worst case scenario (ie 1/100) would be "one course of chemo to clear it all out" ... I feel like a crazy woman because I am still invisioning months of the stuff!! Why??
PPS. Now terrified because everyone on here, contrary to what the docs said, had problems when they bled. I have rung the helpline, they were on their lunch, hope they ring back.
Try not to worry, it sounds like it isn't molar but that's the only condition I know about I'm afraid as I haven't experienced anything else. You posted last week so you're probably more in the know now but I was also told by Sheffield that the bleeding 'flushes out' and brings down the hcg. And that's how it seemed to work for me. I have stopped bleeding now and am expecting a much smaller drop this week than I have been having. Hope everything has gone ok for you.
Thanks for you message. They are treating it as a partial molar via Charing X now. Essentially they didn't find any molar tissue, but I have lagging HCG and a triplody was found, so they feel it safest to proceed as if it is a partial molar with a teeny bit of molar tissue in there somewhere.
I have had various scans etc' on Friday - again nothing untoward like tumors seen, so they sent me off with 6 weeks of blood test boxes.
My serum on Friday came back at 265, so over 100 under the week before at my local hospital (though I am comparing 'crude' to serum results there - my crude on Friday was 284, so still a decent fall from 380 crude at the hospital).
Just had my first lot of weekly bloods locally. Nurse was lovely but not the gentlest with the needle. Fingers very crossed for a bit of a fall - only 5 days later (they said this was OK for week 1, as in terms of admin Weds is the best day) then after that weekly for 6 weeks.
Bleeding has tailed off... now I've had a fall, I wish it would start up again!
Glad they are sorting you out. At least Charing Cross and Sheffield are really efficient from what I have seen and are experts in the field. It reassures me when I speak to them. I had a complete molar in April and needed 2 D&Cs. I'm on weekly urine samples and so far, it has been dropping a lot and this week I've had some signs that I may be ovulating again for the first time so that's good. Fingers crossed we'll both come through this as quickly as possible!
Hi all, I last wrote on here back in April as they were still investigating whether I had a partial molar (following my ERPC from a MMC in March) finally today I got the confirmation that they believe it is so I have now been referred to Charing Cross. Not the news I wanted to hear as I have been trying to get back to normal these last couple of months
My HCG levels did got back to a normal level in May so my consultant thinks this is reassuring and I am trying to be optimistic... but its so damn hard when you keep falling into this 'rare 1% category' ...rare to have a mmc, rare to have a very short cervix (thats a whole other story!) and rare to a have a molar / pregnancy...its only fair to be in the 99% this time!
here hoping we all get the good results and this can be over for us all soon!
Fleur I know what you mean about the 'rare' thing. Prof Seckl said "only 1% of partial moles need chemotherapy" and I said "what like 1% of women lose 3 babies in a row, and 1/600 women have a partial molar in the first place...?" And he said yes, women with rare things are wary of statistics.
It is a very good thing that your HCG has fallen though - that should mean if it stays down you can TTC (if that is what you want to do) after 6 months. If you have 0 HCG, Charing X will just check your wee and blood by post and then tell you when you get the all clear. After that they track you once a year, and as far as I have been told the vast majority of women in our position have children and lead a perfectly normal life.
I have had my first set of bloods since a recent bleed - seems to have broken the plateau the docs were worried about. I was kind of stuck in the 300s (going down only 20 or so a week with a blip up to 380 from 360 at one point!) but since then I had serum blood on the 7th of 265, then serum blood on the 12th of 108 ... so things are moving again. Hope they keep going - slow movement now I'm close to 0 would make me super frustrated!
Fleur-sorry it ended up being a molar but at least your HCG has gone back to normal now. Has it stayed down? Let's hope that it has properly gone!
I'm feeling a bit down today because I was expecting my latest results in the post this morning but they didn't arrive so now I can't find out until Monday and last week my urine was 0.43 so I was really hoping to find out that maybe it was below 0.35 this week. I'm finding that now the physical side of things is back to normal (I bled a lot after both d&cs), the emotional side of things is starting to affect me more. I was in tears this morning just because they mentioned on the radio that William and Kate were at Trooping the Colour and it reminded me of all the baby stuff that there is going to be around next month- really not looking forward to all that. Squizita- glad you are moving downwards again now- here's hoping it continues! Does anyone know what 0.35 in urine compares to with blood hcg levels?
Squizita, really good to hear things are heading in the right direction, fingers crossed you get there soon. My consultant did say to me that not everyone HCH is 0 (due to your kidneys also producing this) so he said normal was classed as 0-4.83. The last test I had in May was 2.39 which he said was normal and sent me on my merry way...it was a good feeling although it only lasted a month! At the moment I feel scared about TTC again when this is all over, as if I did get pregnant it will be the most terrifying months ever. I wish I could still be that naive person and enjoy a pregnancy without knowing about all these bad things that can happen
Biscuity13, I have no idea if it has stayed down since May, just fingers crossed it has!! I have my first blood and urine tests tomorrow and am feeling a little anxious.... did you get your results through? (sorry I have no idea of the urine compared to blood). I am completely with you on the emotion side of things. Physically I am back to normal but emotionally I can be a wreck one minute and fine the next! I cannot wait for this year to be over... 2013 has definitely been unlucky for me!
I also feel scared about TTC again. I really want a baby but the thought of going through all this again horrifies me! Like you say, we will be panic stricken the whole time so won't be able to enjoy it. Also, my memories of when I thought I was pregnant, in the 10 weeks before a molar pregnancy was diagnosed are not good. I felt really awful, physically exhaused but also emotionally very low. I now think that was due to my hcg levels being so high (400 000) and messing with my brain but it still worries me that I could feel like that again. I was told yesterday that my hcg is now back to normal as it is 0.13 but I know it could still go up. If everything continues ok, I'll be TTC again in November/December, almost exactly a year since we last started trying. But like you say, it'll be difficult to deal with. Hope the results went ok for you today.
I had a d and c 10 days ago and I just got my results back for a complete molar pregnancy. I'm in shock, I don't know what to do! I live in dubai but I am back in the uk for 8 weeks. My husband will be talking to my dr tomorrow and I have worldwide health insurance ( thankfully) but I don't know what I have to do.
I can't believe this is happening, in 3 short weeks I feel like my world has been turned upside down :-(
Hi, I'm sorry anyone has to be on this thread. What a truly awful thing to go through .
I'm not sure if I should even be on this thread but I'm worried i might have a molar pg and in need of support and advice.
I will try to cut my story short. I miscarried by haemorrhaging on 21st June (started with slight bleeding the week before). Previous scan had shown an empty sac about 6 weeks, but I expected to be around 9 weeks. The doctor manually removed tissue in hospital to stop the bleeding, and a follow-up scan a week later showed I had retained 'products' but they will wait and see another 10-14 days and rescan. I was called by the hospital this morning as the tissue they removed in the 21st has tested 'abnormal', they took my blood for hcg which is sitting at 322 which they said is much higher than they would expect. I have to go back in a few days to see if this is falling.
I'm worried this is a molar pregnancy with the abnormal tissue results and higher hcg? is this what happened to anyone on this thread? I feel very luck to already have my DS but I am scared what this might mean.
Sorry for the ramble, just need to get it out somewhere. There may be other reasons my hcg is still up, but I can't find any other explanations for the tissue result or even what this means. The nurse wouldn't discuss it until I have an hcg comparison.
Hi PizzaQueen - sorry to hear of your sad and worrying situation- my HCG got stuck at about 300 too and I had a triplody. I had loads of blood tests to rule out heterotopic pregnancy then referred me to Charing Cross. They did various bloods and scans and screenings, all in one day.
I was so worried about having to stay in a week and have mexo! And not being able to TTC for up to a year!
[happy] BUT thankfully just before I went in the local consultant checked my progesterone (which had been falling). He said my bleeding might increase (I had very little)... lo and behold it did and luckily this re-started the HCG drop. The Prof at Charing X mentioned 'tiny roots' of material that could be left behind... the lag in HCG being caused by them having blood supply not how much was left. I had hardly any but it was causing a lag... once the clots came out HCG fell again. Phew! I have been going for blood tests which are sent to Charing X, and last week was down to normal. Once they are satisfied it's staying that way they said they will clear me to TTC again within the 'quick' follow up bracket (I was out by a day or two but as I'm a recurrent MCer they were really reasonable about it).
Of course I can't say what they'll say to you BUT at the start of the process I assumed any sticking meant in-hospital treatment and no TTC for a year. But my story shows it doesn't always mean that: the fall can stop then re-start and you can be back TTC within 6 months.
There is a website called www.molarpregnancy.co.uk with a great forum. Very useful for support and "TMI" answers about bleeding etc!
Thanks squizita, it is really so helpful to hear from someone who has been through and knows what I'm thinking and going through. (And who has quite a positive story).
I'm still hoping I get my repeat bloods tomorrow and they are coming down. Can I ask if you had a ERPC or D&C, or did it all happen naturally?
I'm in my early 20s so if I had to wait to TTC again wouldn't be the end of the world (although the sooner the better) but I am worried about complications and going through all this again. I have a toddler to look after and financially can't afford to be unwell and take any longer off work.
Thank you so much for sharing your story.
my levels came down to 200 today which is reassuring that it might not be a molar and but still no explanation for the abnormal tissue results? more tests every two days to make sure levels keep coming down, fingers crossed!
I've had some weird mucasy bleeding and passed a clot about golf ball sized today too. not sure what to think but hope its a sign my body is getting rid of retained products.
Good to hear they've fallen to 200, hope they continue to go down.
I had an ERPC originally, thank goodness for all the follow up it was how the issue was picked up. Weirdly I seem to be the opposite of you... all the worrying symptoms except no abnormal tissue!
Which turned out good because Charing X have cut my TTC time short yay! In light of no actual tissue found, they reckon relapse is very unlikely.
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