Desmoid Fibromatosis

ATF1985 11 days ago

3 replies
20 subscribers
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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.

eddiel 11 days ago

Hi ATF1985, and a warm welcome to our little forum, though I'm so sorry you have to be here, and truly saddened to hear about the awful way you've been dealt with by those who were supposed to be looking after you, and I'm not remotely surprised your head and emotions are all over the place as a consequence.

I don't have DF myself, but I'm on a palliative pathway, 3 years now, and have just been through 8 months of treatment with my eldest daughter who had sarcoma of the breast, so learned through her experiences and studying a little about sarcoma/DF,

I found www.sarcoma.org.uk very helpful, especially their helpline, and found a website www.everyone.org helpful when researching trials of drugs not yet available here.

You are allowed to change oncologists or hospitals, or attend another hospital that provides a treatment not available at yours, as for questions I would ask. Is targeted therapy an option, are inhibitors, tyrosine kinas or gamma secretese an option, or more precisely targeted radiotherapy's SBRT or brachytherapy possible, I'm sure if you use sarcoma uk, they can give you advice on your upcoming consultation too, as well as some of the lovely people on here, a few of whom have sarcoma as well. my very best wishes with your meeting, and please feel free to ask us about anything, we all know what it's like living with our prognosis, and how to live your life despite it, and there's always someone here, if you want to scream, rant, talk too, need a shoulder to cry on or even want a laugh.

Eddie xx

anndanv 11 days ago

Hi ATF, A warm welcome to the Group no one wants to be in but it is a very friendly supportive Group as you will soon find out, probably later in the morning.

What a shocking way you have been treated and the sad thing is you are not alone. When I first went to my GP (I’m no longer at that surgery) it was a Locum and when I showed her the mark on my shin and that my brother had died of Melanoma, she told me to put Vaseline on it and that I was letting my imagination run away with me! Later I was diagnosed with Malignant Melanoma Stage4 incurable.

As Eddie said, change your Oncologist there are a lot of good ones around who will fight in your corner. As you haven’t yet filled out your Profile Page I don’t know where you are being treated. However I just wanted to let you know chemo and radiotherapy don’t work for melanoma so my oncologist fought to get me on a Combination Drug Trial. Long story short, I failed the screening for the trial but one of the drugs was a Target Drug and my oncologist managed to get Glaxo Smith & Kline to supply and pay for the drug for me -under “special circumstances” and I’m still here to tell the tale! Never give up, there is always Hope, shout until someone hears you. Try the websites Eddie has referred to for information and help and I am sure they will let you know who to contact next! Good luck on Thursday please let us know how you get on.

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!

ATF1985 11 days ago in reply to eddiel

Thankyou for your kind words and advice x