Partial molar and molar pregnancy support thread - all welcome!

(504 Posts)
MrsJohnDeere Wed 28-Nov-12 11:06:13

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.

biscuity13 Fri 12-Jul-13 10:16:18

pizzaqueen- hope your hcg is continuing to fall and sorry you had to go through this. I had a complete molar in April and it is utterly horrible.

My hcg levels had come back down to normal and I got the letter from Sheffield confirming it. But last week, although still just in the normal range, it had risen again. However, I have since had my first AF. Does anyone know if hcg can rise and fall during the monthly cycle? At the time I did the sample where it had risen, I was ovulating so could this have raised it? I'm about to phone Sheffield to find out my latest results but am so scared it is rising again after finally feeling like I was getting back to normal.

pizzaqueen Fri 12-Jul-13 15:10:52

thanks biscuity. my levels came down to about 130 in four days; I had another scan that showed products still remaining so the docs decided it was just the mc taking a while to complete rather than a molar, which I am so thankful for, although im still waiting for my levels to return to normal and it's been 5 weeks now. I am still no clearer as to what the abnormal tissue was though.

Good luck for your next results I have everything crossed for you

50degreesintheshade Fri 12-Jul-13 19:35:16

Hello,
I have seen a lovely dr in the uk and had my first bloods taken this week. I have just got my results and they are 569. I don't know if this is a good decrease or not as I have not had my bloods taken before the d and c. Fingers crossed that they continue to drop.

LucyElizabeth10 Mon 15-Jul-13 18:22:40

Hi
I haven't posted for a while, I was diagnosed incorrectly with a partial mole in April (in GReece) and I am now under Dr. Savage in Charing Cross. I have just completed my first Chemo cycle and my hCG went down to 61, then back up to 70. Am feeling very up & down and a totally useless mother to my toddler.. PLease can someone offer advise who had been through this....

MrsJohnDeere Mon 15-Jul-13 21:57:34

Hello all. Sorry not to have posted for ages. Life has been very hectic of late.

LucyElizabeth - I finished chemo at Charing Cross a couple of months ago (under Prof S though). Try not to be down-hearted. I was told it was normal for hCG to rise a little when you start chemo, then plummet. I'm surprised they even measured it during your first cycle. The numbers are still pretty low which is good. Please feel free to ask any questions if you think I can help at all.

It is tough to look after children when having chemo but it will only be for a few weeks and your toddler won't remember any of it. Just do the bare minimum to get through the next few weeks, even if you just eat sandwiches and toast and watch far too much TV. Fwiw I found that after the first cycle the chemo weeks flew by and then the 6 weeks from ending chemo to going back for follow-up dragged so badly!

I have been totally head-in-the-sand about my hCG since finishing chemo. I assume that if there was a problem someone would call. I still find it hard to relax and believe that it really is all over (that 3% relapse statistic eats away at me). I also get paranoid that I am pg. Still no period yet (last one was 15 months ago!). I hope that by posting that it will arrive within the hour!

Bluelass Wed 17-Jul-13 21:28:17

Hello all,

I'm new to this thread so apologies for gate crashing, but I'm looking for some advice.

My husband and I are thinking of ttc again next month. Our story is that we were diagnosed with a pmp at our 12 week scan in April. My levels went to 0 within 5 weeks, and have remained so for all other tests to date.

My cycles have returned to normal and settled to a 28 day cycle, currently on 3rd AF since d&c.

We very much want a family and want to try again sooner than the six month wait advised, as from all accounts the risk is minimal. It also took us around 14 months to conceive this pregnancy.

So m really looking for reassurance that trying again two month before the "all clear" isn't a bad idea.... [shocked]

MrsJohnDeere Wed 17-Jul-13 22:11:39

Bluelass - hello and welcome smile

I'd go for it tbh.
Prof S at CHaring Cross told me that they have to hand out the advice about waiting for 6 months but that most people he sees ignore him and go for it straight away!

Coming at it from the other side, I was told to wait a year (because I had chemo) and don't actually want to ttc, but he told me that if I did I might not want to wait a year because, in his words 'you're no spring chicken are you?!' (I'm 41).

Bluelass Thu 18-Jul-13 09:19:50

Thanks for the reply.

Good to know I'm not al

Bluelass Thu 18-Jul-13 12:58:26

Tried to respond earlier from my phone but it only partially worked!

MrsJohn - thanks for your response and advise. It is good to know I'm not alone in thinking that it is okay to start to ttc again. Sometimes I think that the 6 month rule should be reviewed based on each individuals experience, as one size doesn't fit all!

I'm getting excited about moving forward from the past few months of limbo, and hopefully starting our family!

Ashoething Thu 18-Jul-13 16:04:28

Hi bluelass-I had the high dose chemo 13 years ago following a partial mole. I conceived 5 months after finishing chemo-purposely-as was so desperate to have a baby.

Sadly we lost that dc at 24 weeks. I was told it was due to cervical incompetence but did ask if it could be due to the chemo and they said no.

The only thing I found was that I had to fight to get extra check ups.They weren't going to give me an early scan despite my historyshock

Hope it all works out for you.

NoahsMummyJul12 Thu 18-Jul-13 23:05:46

Well looks like I am back :-( in May 2 weeks after my ERPC I got a call to say it wasn't a partial molar as suspected. However today at an appointment I assumed was just a follow up, I was told they still have a suspician it was a mole and I have been Referred to Charing cross! Feel like I have been thrown back 9 weeks to all the worry and anxiety. AF arrived yesterday so I was pleased my body was getting back to normal then bang back to the start :-( x

LucyElizabeth10 Thu 18-Jul-13 23:44:02

-MrsJohnDeere; thanks for writing. That makes me feel normal; or at least makes me understand it is not just me... which is always nice to hear.

Got my hCG from second week of first cycle chemo and it is 50; so am MEGA pleased. Totally killed me last week when it increased, even though I had been warned.

-MrsJDeere- how long did you have chemo for and what were your starting levels?
I am desparate for another child, so for me time is a real factor as I am 37 in December and never expected to be facing motherhood approaching my 40th birthday- which looks very likely now. (or at least close enough if I manage to conceive real fast when we ttc, hopefully at the end of next year.... )
Intersting what Prof S said to you re. 'no spring chicken'..... and rather tactless (!)

I wonder also how long it plays in your mind about waiting for the hCG after you are down to zero... So many things to think about.

I was thinking about work also; all this sitting about feeling tired/annoyed/fed up/depressed.. would it be better to try and work maybe? I am lucky that I have the choice & the support of my family, but no my life is down to a 'needle' day or not. Sad.
I worry that if I did work; I would have lterally zero energy for my daughter & cooking so even less would get done than I am doing now.
Do people tend to work with this treatment?
I feel tired all the time. Is that normal???

Hope to get some feedback. My mind is working in overdrive the past few weeks.
xxx

Ashoething Fri 19-Jul-13 08:35:12

Hi lucyelizabeth-sorry to hear you having to go through this. I had the high dose chemo 13 years ago and tbh was pretty poorly. I had to drop out of uni as there was no way I could have continued.

Yes severe tiredness is normal. I also had severe sickness,infections etc-but I think I was a bit unlucky because some of the other girls just sailed through the chemo!

50 for hcg is fantastic though! My levels started at 250,000! Fingers crossed yours continues to drop really fast.

It night help you to hear that I have gone on to have 3 dcs since finishing the treatement.

Please feel free to pm me if you have any more questions or need a chat. All the best.

LucyElizabeth10 Sat 27-Jul-13 23:09:42

Hi
Thanks Ashoething for the pep talk. I need some more advise.
I have just been told that as my hCG has only dropped to 37 from 90 after 2 Methotrexate courses, i should now go on to Actinomycin D via IV in hospital.
Does anyone have advise on whether I will feel ok to navigate London back to Euston and then a 1 1/2hr train journey alone back to my house???
Any advise/words useful.
thanks- am booked in to Charing Cross on Tuesday 30 July...

bam13 Wed 07-Aug-13 11:50:05

Hi All,

Just registered as having been reading all the messages on here and thought I would share my experiences too.

I had a complete MP in Nov 2012, it was our first attempt at pregnancy so was all a bit of a shock to the system. I had the ERPC 2 days later and then my levels were monitored. I was contacted about them going up and had to go in to Charing Cross to start Methotrexate injections on Christmas Eve. It sounds rubbish being in hospital over christmas but the TV on kept me entertained! smile

My first key bit of advice would be to check if you have private healthcare that covers you, say that it is a cancer and is not a pregnancy-related condition otherwise most won't cover you. If you do then you will be on the 15th floor in your own room (assuming they have a bed available).

It is a scary process until you meet the team at Charing Cross. They are the most supportive and understanding group of medical people I have ever dealt with. Being told you are going to have chemo is scary...it's a big word and you will probably find that parents will struggle with it the most, mainly due to the fact that in their generation cancer means something completely different and much more scary. Just keep in your mind that it's curable and the treatment is simply a process you have to go through to get rid of tissues that shouldn't be there.

My levels dropped well on MTX but then started to rise again so I was then moved to the higher dose chemo. That was a bigger fish to fry! The concept of losing my hair took a bit of adjusting to but once I got my head round it (no pun intended) I was OK with it. I had a good 4 inches cut off my hair to a chin length bob to make it less of a transition.

The worst part of the high dose chemo is having the IV drip overnight. Mainly as it stopped me sleeping. Next key bit of advice....TAKE EAR PLUGS!!! With the machine whirring away it can keep you awake, if you block it out it's easier to sleep.

My body responded very quickly to this treatment (I am apparently a freak of science). However my hair did thin alot. I decided to shave it off when I had 1 treatment left. The main reason being that I thought I looked more like a cancer patient with thin hair that I would if I just embraced the bald! smile It was the best decision I made as it was the only thing I could control. My hair continued to thin for 4 weeks after I finished treatment but I'm also pleased to say that now 8 weeks after treatment I have had my first hair cut. smile

You are given the option to not work whilst you are receiving this treatment, this wasn't an option for me. I'm lucky enough to really enjoy my work and the people I work with are very supportive. I went down to working 5 hours a day either in the office or at home. The days when I had IV chemo I didn't go into the office. Working gave me the sense that I still had some normality in my life, that I was still me and not the 'cancer patient'.

This message is much longer than I was intending it to be but just wanted to share my experiences and hope that it settles a few peoples nerves about what they are going through or potentially facing.

Listen to the advice you are given by the medical team, take it easy when you feel tired and stay as positive as you can. I'm a big believer that a positive attitude helped my husband and I get through this and has made us stronger and even more determined to be parents when the time is right.

I'm now waiting to have an AVM sorted, once this is done then hopefully that should be the end of a period of our lives that has been challenging but at the same time (bizarrely) enriching in many ways. smile

LucyElizabeth10 Mon 12-Aug-13 23:37:30

wow-Bam13; your positivity is amazing. I wish I had the same spirit. I am having my 2nd ActinomycinD tomorrow, and I am still fairly emotionally yoyoing. I think this is because I have been away from my husband for 8 weeks (he us running our business in Greece) throughout my chemo and I have our 2 1/2 daughter with me at my parents' house here. All-in-all not ideal.
My hCG is down to 26.... so I am praying that I only have a little while longer until I get to under 5. How long did it take you to drop??

Wednesdayrach Thu 22-Aug-13 23:11:11

All very brave ladies - the human body is officially amazing but can trick us in the most hateful way! I am very lucky as have a beautiful 3 year old x however would be grateful for advice x thought we were expecting again but at 12 week scan told that although signs of a pregnancy the baby hadn't survived. Had medical management which was awful as lost so much blood- had a scan day after as had to be kept in overnight to be told no tissue remained. Went on to bleed for 5 weeks and when I finally went back it was diagnosed as a partial molar and a full evacuation was completed next day. june 25th! I was referred to Sheffield and have been posting samples weekly as initial hcg was 2.02 - last week confirmed back to normal luckily within the 56 days. After evacuation I bled for a couple of weeks stopped for 10 days and then started again - I don't know what it was it was neither the expected period nor similar to the miscarriage bleeding previously. I put a note on the card to the hospital but have not heard anything on this. It's been 4 weeks since the last bleed and I don't know when to expect next period - I know we are all different but what should i expect?

Purplefrogshoe Wed 18-Sep-13 10:01:44

Hi there not sure if this thread is still active, i had mc and erpc 4 july, found out 2 weeks ago it was a molar pregnancy, still dont know if it was partial or complete as tests not back yet, my hcg 9 weeks after erpc is 41 but still have heavy bleeding that comes and goes, anyone have any advice on this? Im due back at work after a 5 year career break and have no idea how im going to cope

Purplefrogshoe Thu 19-Sep-13 09:40:59

;) Bump

juniper81 Wed 25-Sep-13 21:21:24

hey purplefrogshoe. I had a CMP in Jan '11 which fortunately cleared after four months with no treatment. HCG of 41 is brilliant although the heavy bleeding sounds a bit odd. Has it been going on since the ERPC or started recently? If it's recent it could be AF coming back. Do chase up with your centre for results and possibly go to GP to see if they'll arrange a scan to see if everyone is OK.
Best of luck.

Purplefrogshoe Wed 25-Sep-13 23:12:22

Hi Juniper, I'm glad your hcg dropped so quickly, bleeding started 6 weeks after erpc and is still on and off now 11 weeks after erpc, dr doesn't really seem concerned about it although took bloods this week to check my iron levels, tests came back this week and showed it was CMP, I hope things settle down quickly

Purplefrogshoe Mon 30-Sep-13 22:33:34

Anyone around that can advise me on bleeding 11 weeks after erpc?

Missg123 Tue 01-Oct-13 19:35:32

Hi, I have followed this thread for a while but never posted. I had a partial molar pregnancy which was discovered at my 3 month scan in February. I thought I would post as I had a similar problem to you purplefrogshoe and could find nothing online to reassure me at the time. I bled for almost a full 16 weeks post d&c with varying degrees of heavy ness. I was having heavy periods from 6 weeks and in between I bled in lighter amounts. Sometimes my periods were coming only a week to 10 days apart. I often wondered how I was producing enough blood to sustain this!! Anyway to cut a long story short I had a scan which showed a piece of retained tissue that was about 1cm by 2cms. This passed about 15 weeks post d&c. Then within about 2 weeks I finally stopped bleeding and got my negative HCG result (which had been crawling down from 90 since week 7). I just wanted to share incase it helped you. I remember feeling that I must have been the only one in the world who had bled for so long after a partial molar! It also felt at the time that the doctors were not too concerned even though I obviously was! I hope your problem resolves as mine did.

Purplefrogshoe Tue 01-Oct-13 20:56:35

Thanks missg, all ive been told is to wait it will settle down but im going to call tomorrow and ask for a scan as ive had heavy bleeding and pain from Wednesday and its very difficult to manage. Im glad yours settled finally ;)

Missg123 Tue 01-Oct-13 21:41:22

Good luck with the scan. Hopefully they will give you one and it will answer some questions. I think it is the best idea.

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