I hope your okay and recovery was okay for you

ive just been told by gynae that I have placental site nodule, I go to see them on weds this week.

this is the only information I have and whilst I know it isn't cancer, I feel so misinformed and anxious. 
has anyone had this? How did they treat it? 
 

ive been having nausea weight loss irregular bleeding for nearly a year now and have just discovered this placental site nodule 

Hi Ashbash98,

I've had a recent atypical placental site nodule diagnosis (APSN) and went to a specialist hospital to have a consultation and various scans. It's the atypical nature of the nodule that makes it cause for concern. Perhaps they are wanting to do more tests on you to see if it is atypical or is concealing something else.

Mine was initially discovered in a biopsy I had a year ago for endometrial hyperplasia without atypia, where they assessed it as leftover placental tissue and said it's fairly common and often gets absorbed into the body after a bit of time. This was at my local hospital. They saw it again after a number of months in my next two biopsies and decided it was atypical from an ultrasound scan and I was referred to the specialist hospital.

Hope your appointment goes ok tomorrow and that you can find out more about your diagnosis and if they think it's atypical or not.

All the best x

Hi Clare,

Similar to you I have been having abnormal bleeding & I suffer with Pelvic pain but have been told the PSN isn't the cause of pain, I have had a few Pelvic MRI's which show I have polysistic ovaries as well, I have just seen some specialists last week but I have been doing monthly urine& blood tests, and I'm due to have a smear soon and currently Under surveillance by the specialists in London. 

my son is 5 and I was on mirena the whole time after so I too was shocked  

it's great that you are seeing some specialists hopefully they will give you some more info once you see them and good luck 

take care x

Hi lovely, 

thank you so much for the reply . 

So sorry that you are still in pain and they arent doing anything! Did they give a reason to why they are just monitoring you and nothing else? Just seems very unfair!

Clare x

Hi Ashbash98

I was just wondering if you have had anymore appointments regarding this?

I have my pre assessment this week as they are giving me a hysterectomy.

Hope you are ok

Clare xx

Hi Clare, 

hope your okay! And I'm due to have an mri in Feb and see what that's saying.

so sorry to hear that. How are you doing and have they said why they will do that? I'm thinking of you this sounds like a really hard time 

take care xxx

Hi! I was also diagnosed with APSN. Today I am going to consult and test results. I would like to ask how your treatment is going? Maybe someone can give me some advice?

Hi everyone 

Hope you are all doing ok.  It's good to see other people's stories here.  I have recently been diagnosed with APSN.  This was discovered after several years of irregular bleeding (had ultrasounds/smears & nothing showed up) from a biopsy.  It is likely due to having to have my placenta removed by operation when my child was born.

I have received MRI/CT scans (at my local hospital) which were clear and have been sent a tumour marker test to do in the post.  I have also been advised that I will need a hysterectomy within the next 2 years as there is a 15% chance that the APSN could turn cancerous in that time frame.  I am currently on surveillance so have to have another MRI in a few months and do tumour marker tests every month.

It would be good to hear how everyone is doing especially further down the line - what symptoms you have/how long surveillance can last/if anyone has had a successful pregnancy after APSN/how hysterectomy went etc.

Thought I'd say hi. I got diagnosed with apsn in late 2020 and had hysterectomy in early 2021. Loads of MRIs, CTs, x-rays and blood tests later I'm still in surveillance but everything is clear so far. I had an infection following surgery which meant further surgery but otherwise it's been fairly smooth sailing. 

My only symptom was intermittent bleeding after sex, I was otherwise fine. Been an emotional rollercoaster but it's nice to find others with similar experiences. I'm due to be on surveillance for 5 years post surgery. 

Hi Bumblebee87

Thanks for posting, there doesn't seem to be many places to speak to anyone about APSN as it's so rare!

Can I ask did they advise you to get a hysterectomy as soon as possible and how quickly were you on the waiting list for (it might vary depending on your location/urgency etc though)?

I was given the option to go on surveillance but told I would need the hysterectomy within about 16 months (think I'd put 2 years above but made a mistake).  Do you get MRI's and CT's every 6 months?  At the moment, I am only down to get an another MRI but that could be as I haven't had a hysterectomy yet.  I am concerned at how many MRI's/CT's there will be as they themselves are a cancer risk!

There's been nothing mentioned about x-rays either.  Are the blood tests hormone level tests or is it just the tumour marker kits?

Hope you're doing well now.  I'm just a bit worried about the surgery itself and going straight into menopause after it as I feel I am still too young for that!

Lots of questions! Exactly how I felt when it all started. Super rare doesn't feel good. It's the club you don't want to join.

I can only speak from my experience but found almost nothing online so happy to share my experiences fairly openly if it helps.

I was advised to get the hysterectomy and they fitted me in quickly. My issue was we couldn't date whether it came from my successful pregnancy or miscarriage so things moved a little faster. Equally my stuff happened during lockdowns so it was all a bit weird full stop. I was given the choice of 3 weeks time or 2 months for surgery once I made the decision and just decided to get it over and done with. 

MRI scans are every 6 months at the moment with an annual CT. The x-ray is a chest one to check the chest is clear and also 6 monthly I believe. 

Blood tests are every 2 months I think now (but used to be more frequent). That's to check HCG levels as an early indicator of things coming back. 

With regards to surgery, I kept my ovaries which means I'm avoiding menopause for now. Also felt too young for that! But speak with surgeons if that might be an option. I had complications post surgery and ended up back in surgery with an infection which is rare and made recovery slower. I took 4-6 weeks to get back to mostly normal and now have some awesome scars that almost look like a six pack if you squint a lot. 

The worst bit now in all seriousness is the anxiety every time I have a test or scan and having to wait for results but nothing can be done about that really. 

Hope you are managing ok and not too stressed by it all. I remember the insane amount of overwhelm and lack of control I felt at the time. Sending hugs and best wishes

Hi

Sorry for all the questions, hope I haven't asked anything too personal.

I thought I would be the same as my only pregnancy was quite a long time ago but they seem happy to let me do the surveillance option just now.  That's good they fitted you in quite quickly even during lockdown.

Thanks for the information about CT's being every year & regular X-rays.  I haven't been told about both of those so I will ask the question.  I thought I'd read somewhere about bone scans too but not sure if that's just if menopause has began or not.

I think for me I will be able to keep my ovaries too, think for some the menopause can arrive sooner than it normally would after the op (even if kept ovaries).  I guess I would just need to hope it would be a few years yet!.

That's not so good about the complications, hope you're doing well now except for the anxiety about results.  Thank you, the waiting on results is the also the worst bit for me just now and not even post op!  I'm also thinking how has this even happened and why!

Hi

Sorry for all the questions, hope I haven't asked anything too personal.

I thought I would be the same as my only pregnancy was quite a long time ago but they seem happy to let me do the surveillance option just now.  That's good they fitted you in quite quickly even during lockdown.

Thanks for the information about CT's being every year & regular X-rays.  I haven't been told about both of those so I will ask the question.  I thought I'd read somewhere about bone scans too but not sure if that's just if menopause has began or not.

I think for me I will be able to keep my ovaries too, think for some the menopause can arrive sooner than it normally would after the op (even if kept ovaries).  I guess I would just need to hope it would be a few years yet!.

That's not so good about the complications, hope you're doing well now except for the anxiety about results.  Thank you, the waiting on results is the also the worst bit for me just now and not even post op!  I'm also thinking how has this even happened and why!