Hi

I have just been diagnosed with the same thing! We had 6 rounds of IVF before being blessed with our daughter. She's almost 2 now. My periods went back to normal until about 6 months ago where I was having irregular bleeding and passing clots. My GP fobbed me off several times saying that it's because I've had a baby! We went back to our fertility doctor who did a hysteroscopy and found polyps. The biopsy came back abnormal and was told this is what it was. I went to to the specialist centre at a hospital in London and had bloods, mri, ct and ultrasound tests. 
They told me that the course of treatment is a hysterectomy which shocked me, I'm only 34! Am currently waiting for the results to come back to check it's not spread elsewhere then to discuss options. 
They then said that there is a 4 year window- so as the placenta left was from my daughter we've still got 2 years so if we wanted more children they will monitor me closely to ensure it's not spreading etc.

It was explained to us that when you get pregnant the placenta has almost claw like things to attach to the womb. When you have the baby the placenta detaches but the claws remain and are naturally absorbed back into the womb but in this case it hasn't happened if that all makes sense.

have you had any updates? 
 

Hello!

I didn't think I'd find anyone who even knew what I was talking about! It sounds like we are on the same path. I went to the London hospital at the end of July for blood, mri, cts and ultrasound. Results came back there is no sign of cancer currently and no signs of anything having spread. They did find something in my brain and said not to worry as they often get incidental findings on brain mris. I have another scan booked in sept to follow up on that.

It's be just over two years since delivery so I'd have another 2 years to be monitored unless I want a hysterectomy. Tbh, I felt pretty fobbed off by the consultant and I knew plenty about it all having done lots of reading. He said they can monitor me, but the papers say that if it gets to 4 years that the prognosis really isn't good. He also said that they can't be certain that it is an APCN but also can't rule it out. So I was thinking then surely I can just wait out, but then he said one patient (and I've read this paper too) decided on a hysterectomy even though her scans and bloods were negative, and when they did pathology on the uterus - she did have cancer! I felt like saying well then there no choice is there! Honestly. So for me, I'm 42. We have twins and didn't plan to have any more so it's an easier decision. For you that must be really hard to decide what to do.

Meeting the Gynae surgeon this Friday morning in London. See what they say as I have no idea about how much needs to come out, how or when. It is reassuring that they don't mess around though.

I hope your results come back all ok x

It's all so much to take in and so hard to know what decision to make. 
its tough as it's so rare that they can't give definite answers to things. My head is saying hysterectomy my heart is saying I want another baby. I just don't know what to do. 
Do you live in London? We are no where near so was wondering if the surgery could be done closer to home.

please keep me updated with how you get on it's nice to know there's someone else going through the same thing 

xx

It's hard isn't it. Even having already made the decision (before knowing anything about this) that we don't want anymore children, it's still a decision to have a big surgery. The APCN was found during prolapse repair surgery I had in the Spring so it may be a second op in a year :(

I wish I new how to help you with that decision, it is not easy at all. The stats are in favor of it not turning sinister aren't they, but what I don't understand is that if 4 years really is so important, why would they let anyone get anywhere near close to that. As you said, with the rarity they don't know.

I asked about surgery location, they do it at another London hospital within the same group so that they have better control of what happens to the material removed so it can be examined properly by pathology.

im an hour from London by train

How did it all go today?

x

It went well. A lot of information which I thought I had retained until I got home! Surgeon is great. He went through it all, mostly to find out if we want more children or not as that's the hard decision. Then talked about the surgery. Not sure if my ovaries are coming out or not. Under 40 they leave them, over 50 they come out. 40-45 they usually leave but I think my mum had early menopause so he did bloods to check my egg reserve. They also managed to fit me in for the repeat brain Mri rather than having to go back again in a couple of weeks, they found something on the scan last month. Unclear if it's an incidental finding as they can't rule out metastasis from the APCN, so we will see.

surgeon ringing me to go over it all again, with the blood results and brain Mri in 3 weeks. And oncology consultant ringing me in a month too.  
 

I asked about vaginal vault prolapse as I'm concerned after the hysterectomy so he may do a repair at the same time but he said about mesh, and I won't consent to that so not sure about that just yet.

a lot to take in but the surgeon explained lots.

surgey 14th October

Sounds like he covered things well. How are you feeling about it all?

The consultant phoned on Thursday to let me know the CT, ultrasound and bloods have all come back fine. They've said they are still waiting on the MRI but can't see that that will show anything. We asked again about having another baby and was basically told to go for it now. We've made the decision to go for it. As it's through IVF luckily we already have frozen embryos so it shouldn't take too long to get ready for transfer. I almost feel if we're lucky enough to be blessed with another baby I'd be ok about the hysterectomy

Ive had a blood test kit come through the post today have you had to do this ?.

Yes, they keep sending them to me. I hope to do it at work (GO surgery) but they didn't know what blood bottle to use so I've not done one yet. Will see if I can get to my surgery next week

ive send you a friend request on here if you can find it, then we can message x

I had twins one vanished and the other a still born at 19 weeks gestation I have this atypical nodules. You need to be referred. I went down yesterday and have mris scans and bloods and you need to be monitored for 10 years and access what's happened. I would love to talk to you via email or something and be able to support each other it's a rare form I'm afraid x