[Andrea's mum]

Hi everyone,

I fell pregnant in May this year and at my 12 week scan discovered that I had a partial molar pregnancy. I have been having twice weekly blood tests for the last 12 weeks and, although my hCG levels have been dropping quite rapidly they are now at a stand-still. I spoke with my dr last week and he said that we have to look at chemotherapy. He said that the chemo is mild and that I will have to wait 12 months after the therapy before I can try to conceive again. I have been very alone throughout this process and wish there was someone I could talk to about it that has gone through the same experience and has come out of it with a healthy pregnancy. I was told that this is very rare and that needing chemo is almost unheard of but I have given up on statistics and they mean nothing to me anymore.

During my first pregnancy with my daughter I had no morning sickness and therefore had nothing to compare the second pregnancy's sickness to. Everyone was telling me to suck it up and that I was probably having a boy due to the difference between the two pregnancies.

I was very ill during those first 3 months of the molar pregnancy and in the last week before the ultrasound I was even saying to my husband that I felt as though I was dying. My hCG levels had reached 796,000 (normal level being 1,000) and the geneticist explained that the highest he had ever seen was 26,000 so that explained why I felt like death. The following week I had the D&C and had a really tough time dealing with the loss for the next few weeks. I have since been watching my levels drop with every blood test but I am now completely scared out of my mind that they had stopped dropping and need to have the chemo.

My daughter is 16 months old and I dont want to leave her without any siblings. I would love to hear from people who went through the same/similar thing and have had healthy children afterward.

Thank you for reading this.

[miinii]

OP i have not been in your situation but i could not read and not reply. I am so sorry for what you have gone through. I do hope everything works out for the best.

[AdelTwins]

I have not been through your situation, but there is a support group in the UK who may be able to answer your questions.

http://www.molarpregnancy.co.uk

Good luck & best wishes.

[LFM2012]

I had a twin molar pregnancy in July 2012. This is a bit different to what you had as we had the molar pregnancy, plus a healthy twin. I also had a complete molar not a partial.

This was undiagnosed at the time and resulted in the prem birth of my daughter @ 22 weeks (she passed away not long after birth). It wasn't until I gave birth that our OB new something was wrong. Like you, I was very very sick throughout my pregnancy and was hospitalised a number of times due to the hyperemesis.

At the time I was a private patient, however for follow up with the molar I was directed to the Royal Womens in Melbourne. I had a D&C the day my daughter was born, but like you my numbers plateued out (plus I was still bleeding heavily months later). Rather than try chemo, the Professer sugegsted another D&C and they found retained molar tissue which they hadn't seen on the ultrasounds. Within 4 weeks of this second surgery my numbers had fallen to zero and after 3 more months of monitoring (11 months in total) I was released from monitoring. I also had 24 hour urine analysis every week, rather than blood tests as they said this was more accurate.

My husband and I haven't decided we want to try again, so I can't help you with that part of your question. There are a few others on here who have had single complete / partial molars, so hopefully they will reply.

If you have any questions, I'm happy to try and answer them. I've done a lot of reading on this topic!!

[Persnickety_]

Hi I had a partial molar pregnancy in 2005 at 12 weeks. My 2nd daughter was only 4 months old when I got pregnant. It was discovered at the D and C when my uterus was quite large for the stage of pregnancy and my hcg was unusually high. Pathology confirmed a partial molar pregnancy.

I tracked my hcg down to zero, I think it took around 7 or 8 weeks and from advice from my doctor I was able to ttc once my hcg was down to zero and I had had one normal cycle without any spotting or such.

I went on to conceive my son on the cycle that were we're given the go ahead to try on and he is a happy and healthy just turned 6 year old and I also have had one more daughter after him (she is 4).

I'm sorry that I am a bit vague about the details as it was so long ago. I'm sure that I was charting my cycles at the time and might have tracked my hcg down to zero on my chart. Feel free to send me a pm if you want me to track them down, or have any other questions.

It is very scary, I found a lot of good info on the net and from joining groups.

Edited to add a post of mine that I wrote at the time. I rang this support group and they were very helpful I was not able to go to a meeting as I was living in a different state. I'm not sure if it is still running.
Link to thread I found this post on http://www.essentialbaby.com.au/forums/lof...hp/t311375.html

hi

i had a d&c for a partial molar in nov 05 dx at 12 weeks, my initial levels were 300 000+ and they returned to normal about 8 weeks after my d&c. I was cleared to ttc 1 normal period after my levels were at 0. So my levels hit 0 and I had a period and fell pregnant that cycle and now have a gorgeous 3 month old.

I found some great info from the RWH in Melbourne and they actually have a support group that you can attend or call, which I did and they were very helpful, here is the link

http://www.rch.org.au/hydat-info/info.html

ETA link is not working for me, I have the doc saved so will cut and paste the info on PMP.

QUOTE
What is a partial mole?

A partial mole means that the changes in the placenta are less marked. Usually a baby does develop but dies in the womb. The likelihood of needing drug treatment after a partial mole is considered to be extremely rare.

In 1999 a decision was made by leading Gynaecologists and Pathologists that partial mole patients do not need to be monitored. These patient's pathology specimens are reviewed to confirm their diagnosis. Thereafter they are managed as for 'common' miscarriages.

When can I get pregnant again?

* After a partial mole

When your doctor confirms that you have definitely had a partial mole and you have had a normal period and physical check up.

* After a complete mole

We recommend that you should not try to get pregnant until 12 months have elapsed following a normal hormone level. This is because if you get pregnant before then, we will not know if the hormone rise is due to a normal pregnancy or due to persistent cells from the hydatidiform mole.

Who can I contact for more information?

Please speak to your own doctor, or you might like to telephone The Royal Women�s Hospital on (03) 9344 2286 to make an appointment to see a doctor in the Hydatidiform Mole Clinic.

If you wish, you might like to contact the Hydatidiform Mole Information & Support Group.

The group are former patients who have attended a course to enable them to guide another person through the process. It can be most helpful to have someone else to talk to, especially about a shared experience. Contact can be whatever you require, from a single phone call, to meeting another person your own age, for a chat.

The Royal Women's Hospital

Map of The Royal Women's

Telephone numbers

The Royal Women�s Hospital
(03) 9344 2000

Appointments - Hydatidiform Mole Clinic
(03) 9344 2286

This post has been edited by Persnickety_: 05/11/2012, 08:54 AM

[Persnickety_]

Here is a baby centre group I found helpful. http://community.babycenter.com/groups/a11...lar_pregnancies

[Andrea's mum]

Thank you everyone for your kind words. I thought I'd seen the worst of it until a week ago when discussing chemo with the dr. I am so happy to hear that a healthy pregnancy is very likely after gestational trophoblastic disease. I was also told by the dr that if I fell pregnant before the recommended time that it may not only be another partial/complete molar but also that it would elevate my chances of it in the future drastically.

I dont want to go through this again and would love for the doctors to tell me that there was some way to avoid it but unfortunately there is nothing.

I have an appt with the specialist for referral for chemo on 14 November and will ask if a second D&C would help my situation (fingers crossed) because I would love the opportunity to avoid chemo. Although I know that the chemo will completely destroy any remaining cancerous cells, I also don't want to have to wait another 14 months before I can TTC again.

I'm really over this whole waiting game - not knowing if I'm coming or going and still feeling quite ill all the time from the remaining hCG. I just want to be free to move on from such a tragic loss. My baby is gone but the constant blood tests and talk of chemo wont allow me to move on.

My little Nicholas is gone but never forgotten. He is my little angel watching over us.

[Zarlias]

Hi OP,

I had a partial mole diagnosed at my 12 week scan in February of this year.

Although, unlike you, my D & C was successful and my HCG levels dropped after 7 or so weeks. Having said that, I did a lot of research during that time, as I too hated the unknown that came with waiting, and a massive lack of information available. Although there are differing views due in part to the sheer rarity of the condition, one thing I did find out was that the cure rate for GTD and the extremely rare cancer that can follow is very high, and the treatment with methotrexate is highly successful.

We decided after my levels had dropped and stayed down, that we'd not, not try, and I am now 31 weeks. At first I got growled at, but like I said, I had done my research, and there were so many differing views on "the wait" that we decided to just see what happens. I was monitored very closely for the first trimester, with weekly scans and tests to make sure that it was a baby and not the mole returned, but it's all ended well this time.

Yes, our chances of having a repeat mole are high(er) and I will need to be monitored after birth, and for any future pregnancies as well to make sure that it doesn't return - I think the chance of a second is 1% now, as opposed to less than 0.01% for the general population.

From what I read during my experience, Melbourne is this country's leader in research, treatment and understanding of this, so you are in good hands.

I wish you all the best. I know that the limbo that comes with a PMP is the worst, but I hope you can see the end of it soon.

[scarfie]

I had a partial molar pregnancy in 2000 and started bleeding at 16 weeks. It took around 5-6 months for my bHCg to return to <5, and I had monthly scans until 12 months and then another 6 months later.

DS2 was born in December 2002. I did develop obstetric cholestasis during his pregnancy but aside from that was well.

Hope your levels return to <5 soon and you can start TTC again.

[MrsTan08]

Hi Andrea's mum,

I'm so sorry to hear what you are going through. Last year, in my first pregnancy, I was diagnosed with a complete molar pregnancy after I had some spotting at 8 weeks and a scan showed no heart beat. I had a D&C and the tissue was sent for pathology testing, which is where they found it was a complete molar. My specialist transferred my care to the Royal Women's hospital which involved weekly blood tests to make sure my hCG levels were dropping. The best result is for the levels to return back to normal (less than 5).

After a few weeks, my levels started rising again and the oncologist said I should start the low dose chemo right away. I was devasted after having found out I lost my first pregnancy and then that I would have to start the low dose chemo.

I believe it was a miracle, but the day before I was due to start treatment, I woke up with heavy bleeding like a period. With rising hCG levels, I shouldn't be having a period so I went to the Emergency department at RWH straight away. They tested my hCG levels and actually found they had dropped from my last test! I was sent for an ultrasound to see whether it would be viable for them to do another D&C. They don't normally do another D&C if your levels increase in a molar pregnancy - they just start the treatment. Thankfully the oncologist thought another D&C was a good idea so I went in for surgery that afternoon.

It took a good few weeks after the surgery for my hCG levels to return back to normal and then I went on to monthly testing. It was such a joyous moment when I received the news that I was discharged from the molar registry at RWH and got the clearance to start trying to conceive again!

Anyway, fast forward to now, a year later, and I am 13 weeks pregnant! The 6 week scan for me was harrowing, but seeing that little heart beating was one of the best moments of my life after everything we had been through.

As someone who has gotten through to the other side, everything will work out even though it might not seem like it at the time. I was terrified that I would have another molar pregnancy and there's something wrong with me or my eggs, but I've been able to get pregnant with a healthy foetus so far.

I wish you all the best. Feel free to get in touch if you want to know anything else.