Peritoneal cancer, 'tethering', etc.

Hi PTP 

I can't help with your questions but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be easier to spot by anyone who does have the experience you're looking for.

It might also be an idea to post this in the oesophageal cancer group as you may find others there who have had the same issues as your wife.

Does your wife have a CNS (cancer nurse specialist) sometimes referred to as a key worker or Macmillan nurse? If so, they're usually a font of knowledge and could possibly answer your question about what causes tethering.

Wishing you both all the best 

Thanks very much for your reply.

We do have specialist nurses - and they are excellent! - so indeed I'll ask them about this when I see them again next week.

One of the ways I try to deal with this miserable situation is to try to understand as much as I can about both the disease and its effects, as well as any proposed treatments. I fully trust our medical team, and I have full confidence in what they're doing - but understanding the detail (insofar as I can) helps me cope. And that's really the reason I've asked the question.

Thanks again.

I have had this and this is a common symptom of pertitoneal cancer as well as the other symptoms you describe. There is a danger of bowel blockage so it is very important to monitor bowel movements. I used laxatives daily (and still do) l also used suppositories on one occasion, l am not sure if you should do this with this complaint but it worked for me.
I have since had a major debulking op including surgery on the bowel. It was resectioned and l now have a permanent stoma. It is no problem. I was unable to have the op for nearly two years because l had too much cancer dotted about in my abdomen. But l had so much chemo over the 2 years (Carboplatin and Paclitaxel which is commonly given for peritoneal cancer) that it got rid of the small scattered cancer. I also had immunotherapy (Avastin) that kept my cancer in check for a year before surgery.  l hope some of this info is helpful. It is important to remember that all patients are different even if we have a similar diagnosis so don’t be alarmed if your wife is offered anything different. I just follow my oncologists advice. 

Thanks very much for your reply - it's very helpful.  I have also now read your profile, and I admire your determination: you have been through a lot.

Unfortunately, our own situation has now progressed, and it currently looks like my wife will be offered no further treatment for the disease itself - just palliative symptom-relief. I am impressed that you were able to insist on further chemotherapy and immunotherapy, and I will press our own oncology team as to whether any of that is possible.

Thanks again.