This was one of the few outcomes that my extensive Googling pre-appointment had come up with. It didn’t make it any less devasting / scary / awful.
What this news meant for us:
– We wouldn’t be able to try again for at least 6 months from the date of my surgery
– Only 1 in 750 to 1 in 1000 pregnancies are affected by molar pregnancy. This was some rare stuff we were dealing with. It also meant our chances would be raised for any future pregnancy (1 in 75-100 chance of a second molar pregnancy, after this 1 in 7-10 are affected by a third)
– I would need to be followed up for at least 6 months by the National Trophoblastic Screening Centre’s surveillance programme, undertaken by only 2 specialist follow-up centres in England, whereby regular readings of my hCG levels would be taken (our nearest centre was the Sheffield Trophoblastic Disease Centre, the other centre being Charing Cross Hospital Trophoblast Disease Service)
– There was a chance that any molar cells left following my surgery could regrow, rather than die out, and become an invasive mole or, much more rarely, choriocarcinoma
– There was a 1 in 10 chance I would require chemotherapy…
To try and take all this in, on top of the feelings of loss and grief we were already experiencing was extremely difficult.
I commenced follow-up immediately, and was sent straight from this appointment to the blood rooms at the hospital, so my first hCG reading could be taken.
If the first reading was within the ‘normal’ range within 56 days post-surgery, then I would only need to be followed-up for 6 months post the date of my operation, otherwise it would be 6 months from my first ‘normal’ result.
Given we had already started trying again, there was also the issue that I may have fallen pregnant, which may make the results difficult to interpret (a pregnancy would cause rising hCG levels, but so also would remaining molar tissue…). I kept my fingers crossed that we had gotten lucky that month, but it wasn’t to be – there were mixed feelings therefore for me when my first result was confirmed as within the normal range. This meant no molar tissue and ‘only’ 6 months follow-up, but it also meant no baby and no more trying for a few months.