Any advice for my sister or me?

I had Ovarian cancer stage 3c in 1997 (been fine ever since!) and now my sister, age 60, has Stage 111 c serous carcinoma likely ovarian in origin, possibly stage 1V, treated with carboplatin and paclitaxel. She has had 6 chemo sessions but her CA125 has not been affected much and the hospital said they still couldn't operate and she has to go back in 2 months.

When I asked my sister about her pains, this is the response I got from her as an SMS (we live in different countries)... after she said pain killers gave her constipation but this is what she feels is causing the pain:-

"The covering or Fascia allows organs to move and slide past each other and I feel that it is 1) restricting movement and 2) sort of glueing the various parts to each other and that's what causes the pain when I move. (I saw a similar thing in a horse dissection I took part in.) I feel it's kind of like when you pinch a piece of candy floss and it goes solid - I feel it pulling and unable to stretch into the position I move intestines as my body changes position One gynaecological woman said she couldn't see one of the Ovaries and I got the impression it had been '"eaten away " but they do now think that's where it started ."

My sister has just told me there is now a spot on her liver and she has to go for a bone scan. She isn't making an effort to eat more healthy food or take alternatives that my brother has spent weeks finding out about and trying to help her. We don't really know what to do as she also never writes down questions or answers and both she and her husband are quite vague with details.

Any thoughts or ideas?

4 Replies

  • Hi Jacquie, it is hard to understand your sister's message but I wonder if she is saying that she has adhesions and that that is causing pain.

    It is great to hear that you have survived for 18 years following stage 3 C ovarian cancer. That is very encouraging. I hope that you continue to be well.

    Have your clinicians suggested that either you or your sister be tested for any of the genetic mutations that can cause ovarian cancer, such as BRCA or Lynch syndrome?

    Sorry that I can't be more helpful.

  • Dear Adele,

    Thank you but she has already been tested and told there is no link. Yes, I think she means the adhesions are causing pain.

    She has just told me she has to have a bone scan as the GP thinks this is why she has pain breathing.

    She told us she had pain but never mentioned it was when she breathed. We feel it is all so vague and are just waiting to hear the next thing.

    Thanks for the reply and hope you have lots of support and hugs.

    Jacquie xx

  • Dear Jacqueline

    I had pain breathing but had fluid on lung and ascitis caused pain breathing too as fluid pushed up on lungs as your sister any ascitis babs x

  • Thanks Babs I'll tell her. Good luck to you and a hug. xx

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