Endometrioid ovarian adenocarcinoma

Hi Glass Not Full 

I didn't have this type of cancer but noticed that your post hadn't had any replies.

I've searched the group and found these previous posts which mention this particular type. You could have a read through them and reply to any posters if you think they can help you further.

Thank you!

Yes I have.  I had surgery (full hysterectomy, omentectomy and appendectomy) in March 24 and started adjuvant chemotherapy at the end of April.  Having Paclitaxel and Carboplatin every 3 weeks for 6 cycles.  Just had my second infusion. 

I hope chemo is going ok for you and side effects are manageable.

were you told this is a rare type too?

Yes I was.

Wish my endometriosis had been diagnosed years ago and not as a result of this (post menopause). Wish I’d had a full hysterectomy years ago to avoid this. 

I was but then a nurse told me it's a very common type, so I wasn't sure who was right in the end!

I've also been told that it's often found at an early stage because the tumours are large and there's only a low chance of recurrence too - no idea if that's right though!

I'm so sorry to read that - that must be so frustrating and distressing for you, especially if you had the symptoms for endometriosis too. I had no symptoms of endometriosis and was surprised when the histology report came back saying "endometriosis in the background" although the surgeon told me it's not always linked. 

It wasn't a gynaecologist that performed my surgery so he only removed the one ovary. Considering the endometriosis component, I thought my periods would be heavier but actually, prior to diagnosis and now, they're much lighter than they have been previously (and they've never been excessive as I know so many people suffer from with endometriosis)

Hi,

I was just wondering how you are getting on? 
I’m 41 and was diagnosed with endometrioid ovarian cancer 1c1 on Friday. 
After they found a complex cyst during a routine scan for endometriosis, I was given a full hysterectomy and the cyst was sent off for biopsy. 
my surgeon called me on Friday to tell me the news. She was shocked it was cancer from what she seen when removing it. 

im not being offered chemo as they are happy they have removed it all and it was contained in the one ovary. I just feel sick that it will come back and I won’t see my children grow up x

That is tough to be left worrying.  I did have chemo because my cyst burst before they could operate.  Stage 1 and it all coming out is very good.  Was it just a full hysterectomy or a radical one where they remove the omentum and appendix too, plus cervix etc.

Worrying about the future is common.  Being clear on your monitoring plan will help you.  When will you have blood tests and CT scans etc.

many charities offer great support.  Obviously MacMillan so give them a ring.  I highly value Ovacome’s Rare Cancer group (Endometrioid adenocarcinoma is one). Our WhatsApp is very supportive.  The Robin Cancer Trust have recently set up an Ovarian Cancer WhatsApp group and that is also very supportive.  Penny Brohn and Life After Cancer do some great retreats and support sessions focusing on fears of recurrence amongst other things.

i know my risk of recurrence and the survival rates but the way I look at is that might not be me and it might be a long time from now.  I intend to thrive not merely survive.  I am living the best life I can and finding joy in the small things.  I have also started doing some mini and major bucket list tick off items.  Went to Japan 2 months ago and loved it!

wishing you health and happiness xx

Hi Sarah, 

Thank you for taking the time to write back to me, it’s really appreciated. I had the full lot removed, so my cervix and both ovaries. My doctor basically said she didn’t want to leave me in a position if it was cancer that I may have to go back again. I have three beautiful children and was lucky enough my family was complete. 

Am I right in saying that this type of cancer is rare? 
My doctor explained that a bit of blood came away when they removed the cyst, but not cancer cells were present in the wash, so that’s why I have been graded 1c1.

I completely get your outlook, I’m sure I’ll get there when the shock has gone. The best thing to do is just take everyday and enjoy life! Xxx

It is rare and it’s good you got rid of most of the junk in your trunk.  It gets easier.  The only thing you might want to ask about next time is genetic testing..wishing you well xx