seeding

This might seem like a silly question but I'll explain my position and ask it anyway. I have low grade tumours which are all over my peritoneum. When I had the laparoscopy last year, I was told that it was hard for my surgeon to get in to the abdomen to get samples because everything was stuck together as a result of both adhesions and the disease. I was 3c at the time but since then evidence has pointed to the cells being outside of the abdominal cavity at the time of diagnosis. I had six rounds of carboplatin which seemed to reduce the tumours and stablilize the condition. I was wondering if the organs get unstuck and everything (except the adhesions) goes back to normal. I get a lot of pain from my abdomen and don't know how other women can be active with the condition because I find the pain gets in the way even with pain medication. Maybe the pain comes from the adhesions and not the cancer.

[Dolcie]

Hi Tina I was told the chronic pain I have all the time might be the disease or it could be the adhesions so I'm in the same position and every time you have any surgery it will cause more adhesions. I too have a low grade slow growing rare OC and am awaiting surgery which my consultant has to wait for them to grow as they are hard to get too. No painkillers help with the pain like you and just had an epidural !! And that didn't work. The constant pain is very tiring.

[Hidden in reply to Dolcie]

Hi Dolcie

I've had ops in the past but they weren't connected to the disease. When I was diagnosed, I'd already had my uterus, gallbladder, appendix and various other bits and pieces removed because of other conditions which means that the majority of the debulking had been done. I think the only thing that might have been removed which was not was the omentum. Now I'm not on the pathway to any more surgery which I hope will stay that way. The pain is very tiring. When I try to do things, the pain is so bad along the flanks of my back and my abdomen and the tops of my legs feel cramped. I'm trying to work on my fitness but walking is hard too because I just get exhausted and despondent. I feel I'm not living up to expectations for people in my condition but I am trying ... or as my husband says, 'Yes, you are... very!'

[charlie12]

Hi ladies

So sorry that you are both suffering like this. My understanding is that adhesions do cause the organs to stick together and this causes agonising pain. The more often you are re-opened the worse they can get.

I had a borderline 16 cm tumour removed in 2010 and have had pain since then. I was unzipped again 5 months later I guess to check if there was anything in there, but nothing physical was found and this made the pain much worse for ages.

I have learned to live with it on low dose medication, amitriptyline 35mg. I also found computerised CBT really helpful for me. It's called Living life to the Full and it is free on the internet.

But I didn't have chemo or radiotherapy and the recurrence rate of borderline cancer is low. To be honest I feel so fake on this board sometime with other ladies who have had such difficult journeys.

Big healing hugs to you both.

Charlie xxxx

[Hidden in reply to charlie12]

Hi Charlie...

I don't think you're fake at all and I really appreciate that you took time out to reply. Everyone's journey with this disease is different and there can be no measure to compare any of them. We're actually all in the same boat but on different journeys and at different ports. For most of us though, the emotions we go through I guess are similar which is why we're here with each other. A healing hug to you too.