Hi All
Reaching out as I have a follow up with my Oncologist on Thursday to discuss the Desmoid I have on the left side of my back.
Long story short - I was on the cancer pathway Jan 2024, and a 2cm mass was missed on a contrast CT and I was discharged from the service, clear of cancer.
6 months later in August 2024 I was hospitalised, and was told my “tumour had doubled in size”. I was sat in a hospital bed when told this, and asked what tumour, and they told me it was on my scan 6 months previous. When I showed them the discharge letter, they were gobsmacked.
I was put on the Sarcoma MDT, with no treatment till another scan was done at the end of Oct 2024, when tamoxifen was prescribed. I took the tamoxifen and had another scan in Jan 2025, where the tumour was over 9cm on 2 axis.
The Sarcoma MDT referred me to Oncology - and I expected another line of treatment. I was brutally told that, operating wasn’t an option due to the disabling and disfiguring effect it would have, radiotherapy wasn’t an option due to the close proximity of my kidney, which would die, and chemotherapy wasn’t an option, and to stop tamoxifen immediately. Oncology are reaching out for compassionate approval for Nirogacestat from the USA.
Lots has happened inbetween, including a perceived lack of support, being pushed back to my GP for pain management (who have no idea how to manage the pain - as well as not having an update since December 2024 from the Sarcoma MDT) - I went to my GP as a patient last week and they still thought the tumour was relatively small and I was still on Tamoxifen, and defused to change any pain meds to relieve my pain.
Oncology also told me that palliative care, as well as an oncologist nurse specialist would be in touch, but they haven’t.
At no point, despite asking, have they spent time explain scans or the location of the tumour in my body, brushing us off and just saying, “it’s in the muscle wall”. When this tumour was found in August, it was 11cm away from my spine it’s now less than 5cm away.
I feel like with the removal and refusal of any UK based treatment, they’ve given up, and I’ve been handed a death sentence, and don’t know who to turn to.
I suppose I’m reaching out on here for what important questions should we be asking this week with the Oncologist, or what do we really need to know. Fortunately, cancer isn’t a story either of our families have dealt with, and our heads are all over the place.
Any help or feedback much appreciated. Thanks in advance.
Hi ATF1985 ……. I put Desmoid Fibromatosis into the search tool 
near the top and found a few posts mentioning it but they are ‘former members’ so have moved on from the site.
I have two very rare Lymphomas and one is incurable but at the moment fast asleep……. but my situation is very different…… I do see you have been posting in our Living with incurable cancer - incurable patients only group.
You just need to keep your pointy elbows in the doors of the system and look to get some clear answers and all the support that you need.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
