I feel like I'm adrift in the middle of a vast ocean. I thought reaching out to this community might help in some way.
Please see my profile for my full story.
My PET scan results were discussed this week and my 2 liver tumours have grown significantly since my last scan meaning surgery is not possible. I am waiting to discuss Lonsurf and Regorafenib with my oncologist.
At the back of my mind is, and it saddens me to say this, medical negligence. My surgeon was adamant a perianal abscess was a recurrence of my original bowel cancer, so I agreed to invasive surgery to remove remaining anal area and surrounding tissue. The histology report showed no signs of cancer.
The resulting post operative wound is, 7 months later, still open and is bring packed daily. Because of this wound chemotherapy was stopped after I had received 4 out of 6 rounds.
Now I am inoperable.
I have asked to be referred to Hammersmith, Christie's, and Royal Marsden all with no update. Thankfully, a referral to Bristol proved positive with the oncologist there recommending chemo resume.
Does anyone have any suggestions about centres to contact, treatment options, anything?
Hi Saxon and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It sounds like you've been through an incredibly difficult time.
I don't have any suggestions of centres to contact, not having had the same type of cancer as you, 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 again.
You might also benefit from posting this in the bowel cancer group, which I can see you've joined, as it's a far more active group than this one and there are bound to be people there who have liver mets.
Wishing you all the best
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
