The molar thread!

[dan-o]

This is discussion thread for those ladies unfortunate enough to have been diagnosed with any type molar pregnancy or GTD

Hopefully this will be a way we can all keep in touch to support one another & share our treatment & recovery stories

Also it might be handy for those who would just like to find out a little more about this 'rare' condition.

& please.. if you have any 'TTC after a mole' sucess stories, we would all love to hear them!!

Dan xx

PS. let me know if you want me to alter this in any way, or add a list etc xx

 

[dan-o]

I had an D&C for a MC in early 2009. The hospital routinely tested the tissue, which was flagged up as inconclusive (mst likley a partial molar)
I'm in the process of being referred to UK specialist 'Charing Cross Hospital'

I had no symptoms of either a molar pg or a MC, my baby was there- with HB, at 8 weeks & gone by 10 weeks.
I waited until almost 13 weeks for a natural MC, but went for the ERPC in the end as the waiting was driving me nutty!

I've not been pg before, unless you count a couple of chemicals (one recent & one in my 20's)

I'm still testing positive, but waiting until my referral pack comes through to do the next hGC beta.

 

[roc]

Hey Dan-o i see you've started a thread! Thanks!

I'd like to start with my little (actually i mean long, sorry!) story, and maybe we'll sniff out a few more of who have been/ are going through a molar, or associated experience!

I got my on the second of Feb. this year, i was due on the 6th.
I had very slight bleeding around that time which i put down to 'implantation',
as it went away for a while,
then at around 6 weeks it started again, so i went to the dr and was referred to an e.g.u (emergency gynae unit) where they took blood tests and did a scan, the scan was inconclusive as it was too early, so was back at the unit 2 days later for more blood tests,
turned out my hcg wasn't doubling , it was however still rising a bit, so i had to go back a few days later AGAIN,
and yet it was still rising a bit, so i had to go back yet again...

This time i had my second of what would eventually be 5 (or was it 6?) scans... and.. it was..... inconclusive, as there was actual growth, sooooo was back in for more blood tests (still rising), and more scans, each time, waiting on tenterhooks to find out if was to be having my baby or if i was going to miscarryas they couldn't say conclusively either way....

This to-ing and fro-ing went on, with the embryo growing VERY slowly (but growing all the same) till finally after multiple visits, scans and blood tests, they could no longer find the foetal pole in my scan, and instead saw multiple cysts, which were up till then not visible, the sonographer was purposefuly vague about what was wrong, for obvious reasons, until i saw the consultant, but having had a previous partial molar, i knew exactly what was going on, and waiting for the consultant to see me was agony.

So to cut this rather long story short, i was sent for an emergency d&c, and was told to wait for 2 weeks to hear back from histology, as to what was going to happen next (they have to confirm it after), and told if i didn't hear anything by then, it was just a 'normal' m/c.

So 2 weeks came and went, and i started hoping.. and even tried to contact the hospital ( to no avail ),to find out if i had this hanging over my head or not.

Eventually nearly a month after my emergency d&c i received a very mysterious call, from my consultants secretary, to 'come and have a chat with a nurse from the recurrent m/c ward' (will be on 28th)

So have resigned myself to the complications of a 2nd partial molar.

So sorry this has been so long, thanks for reading, and anyone who's going through this or anything similar, i'd love to hear from you!

thank-you!

 

[roc]

I was diagnosed with a partial molar last week (fetus present)
I had an ERPC for a missed MC six weeks ago & they routinely tested the tissue, which flagged up a problem.
I'm in the process of being referred to UK specialist 'Charing Cross Hospital'

I'm so sorry for your loss Dan-o,
six weeks is a long time to wait? did they suspect anything before hand?
when will know what your course of action is going to be?

 

[dan-o]

Thanks for joining me roc, shame it's under these circumstances tho!

Sorry to hear of you recent loss, seems like you are stuck in limbo for a while until you find out what's happening

They've known about my results for a while, i just had to wait 2-3 weeks for an gyne appt so he could tell me, no idea why they made me wait, think someone messed up!

 

[roc]

Thanks for joining me roc, shame it's under these circumstances tho!

Sorry to hear of you recent loss, seems like you are stuck in limbo for a while until you find out what's happening

They've known about my results for a while, i just had to wait 2-3 weeks for an gyne appt so he could tell me, no idea why they made me wait, think someone messed up!

you poor thing!

yeah, i've been a limbo bimbo,

am started to sound like a lunatic ranting all the time at this stage

which is weird, as i was so serene and calm throughout the whole rigmarall etc...
it's a pretty hard thing to wait for though, i'm sure you know!

 

[dan-o]

The weird thing for me is I feel I should be worried about the tumours spreading or turning cancerous..
But I'm not, all I'm worrying about is having to wait ages before being allowed to TTC again!
Totally irrational I know!

 

[loobylou2]

Hi Girls,

Hopefully this thread can help those going through this but don't know too much about molar pregnancies!

Just thought I'd add my (long) story. I was very happily 'pregnant' until I went for a routine scan at 12 weeks. I had no symptoms that anything was wrong other than having really bad morning sickness (which apparently is a sign of a molar due to the abnormally high pregnancy hormones!) but didn't think this was anything to worry about as everyone in my family has had bad MS.

Anyway, after a scan and an internal scan (doctor said just to check!) I was eventually told, rather uncaringly that there was no heartbeat, the baby had gone and that was that. So I'd had a mmc . I opted for a dnc and was booked in the next day, 12th March.

Nothing was said about molar pregnancies, after the dnc they just said the tissue was routinely taken to histopathology just to see if they could find anything out about the mmc. This usually takes about 4 weeks and told they only get back to you if they find something - so I didn't really think any more of it.

Anyway on 31st March, one of the midwives called and said it looked like a molar pregnancy and I was to come back in and see the gynae. Gynae said it had to be sent to Dundee to confirm the molar but would register me anyway just to start the ball rolling. Was told that if your hormones drop back to normal within 56 days of the removal, they continue to test you for 6 months, if not, they test you for 1-2 years and that you get sent sample bottles through the post to test urine. Sometimes you are also asked to go to GP for blood tests. If the levels rise again or just level off without coming down, you will need to get methotrexate - a chemo drug, just to stop any cells growing or continue to grow. Also, I was told not to use the pill as this could interfere with your hormone levels and alter the results.

I know it's difficult when people talk about the possible risk of tumours and cancer but with a complete molar there is only a 10-15% chance of needing further treatment and only 0.5% with a partial molar, so most people are OK and go onto have normal pregnancies. I found this web site really useful in helping me understand what was going on: https://www.hmole-chorio.org.uk/patients_info.html

Anyway, I got the sample bottles in the post to do at the weekend and have just called for the results and told that everything is ok and that I have been sent another one for this weekend and if that's still normal, I'll be tested every 2 weeks, and then I think it's every month until it has been clear for 6 months.

I also got the confirmation today by telephone that it was a partial molar pregnancy, so am waiting for the info pack they send you.

I know this was a long thread but I am a cancer research scientist and understand cell biology very well, so if anyone has any questions they need answered, please ask, no matter how trivial, and I will do my best to help.

Once again, I am sorry to anyone else who has had to go through this as there really isn't enough information out there, so hope this thread will help

 

[dan-o]

Hi loobylou, sorry again for the loss of your baby & subsequent diagnosis.
So it's been confirmed then? ugh, I am sorry sweetie

Me next, I'm still waiting for my referral to go through, but I'm sure it won't be long now.

Great news your tests are coming back normal already tho, no nasty shots for you!!

 

[dan-o]

Got my pack today! Off to to see my local friendly nurse thisavo for a blood draw

From what I have read, the 'follow up' is mainly a research scheme so they can find the genetic difference between benign & cancerous moles & develop a test for it?
How interesting!
I'm going to be a human guinea pig

 

[roc]

Hi Ladies.

Just wanted to ask, has anyone got the yet? and if so how long did it take? or has anyone been told about when to expect it?

Was curious as i have just gotten and was wondering if that was a good sign, with regards to my hcg levels going down?

Loobylou i'm very sorry for your loss, and thanks for your offer to try and explain, i'm sure anyone who comes across this thread, would be glad to know there's someone, who may be able to shed a bit of light on this very confusing, and scary situation.

How is everyone doing anyway?


to all

 

[roc]

The weird thing for me is I feel I should be worried about the tumours spreading or turning cancerous..
But I'm not, all I'm worrying about is having to wait ages before being allowed to TTC again!
Totally irrational I know!

I know what you mean, that's all i'm worried about too, i suppose we know the chances are slim of anything going wrong, with a partial molar, 5% i think, although, that seems like enough to me considering the chances of it happening twice are only > 1%, and i managed that one!

I'm soo desperate to get back to ttc!

 

[dan-o]

Hi Ladies.

Just wanted to ask, has anyone got the yet? and if so how long did it take? or has anyone been told about when to expect it?

Was curious as i have just gotten and was wondering if that was a good sign, with regards to my hcg levels going down?

Yes I've been bleeding too, it started again 6 weeks after my ERPC.
It's just come to an end now. Not sure if it's AF or my body turning loose the last little bit of tissue, but it's been pretty similar to my usual monthly (light with spotting).
I'm still testing positive on a cheapy HPT tho, but only just, it's squint-worthy!
I get my bloods done for CCH on tuesday, so I'll know a bit more then

I'm a tad worried about this 56 day cut off rule as I still deffo have hCG in my system, but I've still got 10 days yet.. come on body.. get a move on & get rid!!!

I'm also sooo desperate to get back to TTC!
Although if I only have to wait until september, I can probably just about manage that without going loopy!

 

[honey08]

dan-o uv had an awful time with this mc hun i really do feel for u
does ur doc know ur still testing pos ? i know ive said lots of times but day after my dnc my test was an obvious so i cant understand it , so frustrating for u i know, all i wanted to do was get af back and get back on track ttc ......... sending u a loada

 

[dan-o]

Hi Honey

I've actually just changed GP's to a much nicer lady doctor, I'm in to see her on tuesday & I'm going to explain the whole thing from start to finish. I'm sure I have retained tissue, which my body's been trying to reabsorb, slowly.

 

[dan-o]

How are you guys doing today?

I'm still spotting, it's been going on for a week now, no idea if its AF or what?

 

[roc]

Hey dan-o, mine is def my af i think, i've been testing negative on hpts for nearly a week now, it was about 3 1/2 weeks after my d&c, it's weird you've been bleeding like that, with positive tests?
does sound like a bit of retained tissue maybe? though i'm no doctor!

Maybe your new gp might be able to help you?
have you gone to see her yet?

I've heard it's not unusual to have 'a bit left' after a d&c for a partial molar, as it buries so deep into your uterus?

hope you're doing ok?

 

[loobylou2]

Hey guys ,

I've had this too, presuming its AF but not sure, I was expecting a lot worse. I thought the first AF was supposed to be really heavy and sore, but just had a couple of days of very light AF but not quite spotting, then 2 days of nothing and then another day of very light bleeding - not sure what to make of it all.

Anyway I hope you are all doing well

 

[dan-o]

Hi guys

Hmmm the AF thing sure is weird. I was expecting super heavy as my womb lining was still 18mm on my u/s a week after the ERPC!
This recent bleed was two days of very crampy but light AF, then 6 days spotting (some days heavier than others) & there's still a tiny bit there today.
My normal AF is quite similar.
I guess I'll know if it was a proper AF as my body will try to ovulate before long?
Everyone keeps saying it's not possibe to ov while still testing positive for hCG tho... hmmmm.

Maybe it's just another hormonal swing bringing on a bleed then? :shug:

I saw my doctor yesterday & had my first lot of bloods done for CCH, hoping for a nice LOW number!! I'll phone up on friday for the results I think

How's yours going roc? Looby, are you still at zero?

 

[roc]

Hi ladies,
mine was def a/f i think, was quite heavy, and is nearly finished now 5 days later.

loobylou, do you think you should see your doc?
i'm not sure about you, but i was told that if you start bleeding on/off few days here and there, to head back into them?

I don't know, seems a bit weird,it must be worrying you, poor thing?

is it really not possible to o/v while still getting +? i wonder must i have if i got af?
i was still getting a + 2 weeks before though?
or would i not have o/v?

Will you be testing with an opk at all anyone? after af?

I got one of those month long ones, you use day after af stops, just to see if i'm mucked up or not.