I'm not 100% sure on not having another child. Right now I'm feeling it's a no. In saying that I'm still a bit shook so maybe down the line I'll feel differently, who knows! (I'm 42 now with 2 frozen embryos left) Has this thing not been around for very long then?? I wonder what's the longest lenght of time someone has been monitored.. I can't imagine going through 10 years or more of monitoring! What a pain. I'm in Ireland and the doctor said there are only 9 of us in the whole country! 

It’s a very grey area so I couldn’t say how long however, APSN are slow growing if that’s any consolation. My second child was PGD because my first has cystic fibrosis. I wanted another but was told no more after uterus split, placenta rupture and a few other complications on my second and we were very fortunate that Pgd which is ivf but they test for the cystic fibrosis gene before implanting the embryo - this worked first time and chances of a second round working was probably slim as I only had 4 embryos, 1 non carrier of the CF gene and 3 were carriers, the other embryos had CF. There are 23 on Facebook group, 2 are local to me and I believe there are 4 US and 1 Australia. There are very limited clinics in the country. I  south wales and had to go to london. For me monitoring was not an option, they did mention it but as I was told I couldn’t have more children after my uterus split I processed all that 5 years ago and my embryos were used for CF research - hard to swallow at the time but am ok with it now. Hands are pretty full with eldest having cystic fibrosis so two is enough. It is a complete shock to begin with. If there is an option for you to have a second I think it maybe safe to do so if you did it soon but only the consultant can advise you on this as I’m going by what I’ve researched on. 

That's alot to go through! Yes they said It was safe to have more kids.. It's hard to find much info online about APSN! It says online type 1 uterine cancer is slow growing and type 2 uterine cancers spreads quicker. Is APSN slow growing but if the cells mutate and grow does it become the type 2 the fast growing cancer? They haven't given me any detailed info even though the Nodule was found a year ago. I didn't ask either as I was totally focused on getting pregnant and then giving birth. It's 12 weeks since the birth of my son so it's only now that I'm giving this any headspace! 

I’d ask the consultant about length of time. Blood and urine monitoring will test for tumour markers every 3 months and if that changes then I think it’s time to operate. My consultant did not seem to have much information overall, only what they know to date. I asked if there was a link between this and ivf but they’ve never looked into it. I do wonder how many woman have these nodules and have never known! A lot of my symptoms point to menopause so it’s a grey area but having said that I never seen a Doctor over this until I was fast tracked in October under suspected cancer. The nurse kept pushing contraception on me to control the heavy bleeding - not the answer really! I had to push back in august when I seen an associate for further testing then thank goodness I had a heavy black period and Doctor sent me to gyno urgently. 

The only knowledge I have is that it’s slow growing hence those who want another child do have the option with close monitoring. 
I don’t know if I was different to others however, I seemed to be seen within 3 weeks of diagnosis and would have been on the nhs list for hysteractomy within 3-6 months. I went private because mentally couldn’t wait months as our family has been through such alot of drastic life changes with cancer amongst other things. I appreciate not everyone is in a position to go privately and I’m so thankful I was because even waiting 3-4 weeks until the operation felt like years. When is your next appointment? 

Yes I do wonder how many women have atypical placental site nodule and never know about it! And how many of us have done ivf and is there a link! I had absolutely no symptoms what so ever, no pain , no bleeding, no raised hcg or anything. It would never have been found if the doctor hadn't suggested a hysteroscopy due to 3 failed embryo transfers with excellent quality embryos.  I've had no meeting with doctors or any info sent to me about it just a brief letter in the post stating I'm now being monitored under the trophoblastic disease concern. They want me to do a hcg blood test this week at my GP and MRI in September. I still havent been approved for the Facebook group, would  you mind approving my request please or must it be done by the admin? You must be so glad to be out the end of all of this yourself! I've decided I'm not going to let this consume me with worry.. I've spent 6 years trying to get my son and now hes finally here.. I really just want to enjoy my life & my little newborn

The admin on the group is living in Australia so could be time difference. The group was on 16 members when I joined in March and now is on 23 members so it’s grown quite quickly since March. 
I wonder if you had this nodule before your son. They cannot be too concerned at this point if you are being monitored with bloods so try and relax and enjoy your newborn. My nodule was 5 years old before I had hysteractomy and happened after last pregnancy March 2019. My body asides from the hysteractomy recovery and nursing a kidney infection feels like it did before my first pregnancy. The weight isn’t coming off very quick at all but I instantly dropped 7lbs. I’m eating well but not moving much but I hope by summer to lose one stone and be back to pre ‘all these problems’ weight. I’m not fatigued like I was, I’m just post op fatigued now, mentally I’m back to how I was as no more bleeding or periods which I’m over the moon about. 
You are the third person now with ivf so I do wonder if there is a link x

That's fantastic! You must be so thrilled to be feeling great & well again. I spoke to the nurse earlier. she said the plan is hcg blood tests every 3 months and MRI scans twice per year for 5 years.. After 5 years then it's hcg bloods twice per year and MRI scan once per year. After 10 years monitoring you are completely discharged!!! Delighted about that because at least theres a positive end in sight with it, and it's not constant  monitoring FOREVER for the rest of your life! She said they're currently over diagnosing it which is adding alot of unnecessary psychological stress to patients. They're hoping new data will help to decrease the lenght of time monitoring. In your case it was warranted as you had severe symptoms. Thankfully u had that black period which resulted in your hysterectomy. Great that u had it done so fast! Yes I had this Nodule before my son, with absolutely no symptoms! They found it coincidentally! Had a few failed embryo transfers so they did a hysteroscopy to have a look inside.. and it's then that they found remains from my previous miscarriage still inside and the Nodule! Everything was removed but nodule came back as APSN. got pregnant easily once it was removed and forgot about the whole thing while pregnant. Be interesting to know if they ever find out if ivf meds caused it. Wouldnt be surprised. Anyway I'm Just praying this will never progress and I can just get on with enjoying my life and my little son. Wishing u the best with your recovery! And thanks so much for the chats, it has really helped to have someone to talk to! Xx

Thank you so much ️