New Desmoid Fibromatotsis diagnosis

Hi Laura, I’m not going to be much use to you as my knowledge of desmoid  fibromatosis is pretty much non-existent. I just wanted you to know that there are some very knowledgeable people on this forum who, I am sure, will be able to point you in the right direction. It’s rotten luck that you have found us but you are now in good company - a lot of us have diseases so rare that we can’t spell them. 

When The Macmillan folks are back at work tomorrow (they are off over the bank holiday) I am sure that they will be able to help - call them or email them using the contact information on this site and I am certain that they will help you. They do a great job and are a huge help to all of us. 

I wish I could do more. 

Good luck!

Hi Laura.

I'm also 26 and was diagnosed with desmoid fibromatosis tumour in July. This is attached to my abdominal rectus muscle.

I'm still pretty new to this and I'm awaiting an appointment to see specialist as only seen general surgeon so far. So I'm afraid I don't have any advice etc for you. I am on the Facebook group having only posted once I did find this quite helpful (but I don't know anyone in group so it is essentially annoymous for me).

Hope you are keeping well.

R x

Hi Laura

Im hoping you are still visiting this site. I am 48 and I have been diagnosed with a Desmond tumour in my neck. Like you it has grown very aggressively and very quickly. I too have felt very isolated since October. They don't want to operate on mine either. The Hulk is aggressive and painful but actually feeling like I'm the only one has been the worst. I have started chemo of two drugs. Knocked me for six!

Hope this finds you with a shrinking tumour. 

Best wishes 

Denée

Hi Laura,

Can you believe that I have only just joined the McMillan forum??

I too was diagnosed just the January before you. I have my mutated Desmoid Fibromatosis T141A in my neck (brachial Plexus). I also vent on Desmoid UK and other forums from around the globe in order to compare treatments/ tumours ect.

I am just coming to the end of my 24 chemotherapy treatments. The tumour has responded really well to the surprise of my oncologist.

I seem to be the only one with DF in the whole region as no one else has come forward? I would love to chat and see how you've got on in the past year?

Hugs

Ange (Warwickshire) 

Hi Dene

Mine too is in my brachial plexus with a visible tumour in my neck. I have nearly come to the end of my 24 treatments of Methotrexate and Vinorebline. My tumour is responding well. The next step is to watch and wait to see if the tumour starts up again? It will be a nervy few months but the most part of me is looking forward to being treatment free and not feeling so yacky and exhausted.

I would love to chat and compare??

Take care

Ange x (Warwickshire)

Hi guys. Hope you're all doing as well as you can be. I was diagnosed with my abdominal Desmoid back in 2014. No one should feel alone and isolated in a diagnosis like this. 

Hello!

I’m so glad I found this thread!

On Wednesday I have surgery for a breast fibromatosis. I have had no information about this from my surgeon and there is limited information online! All he’s told me is that it needs to be removed. 

Has anyone else had this? I understand it’s very rare and now the date is looming I’m panicking!

Hi Fraggle,

I don't have fibromatosis (desmoid tumour) in my breast, but I do have a desmoid tumour attached to my abdominal rectus muscle.

I haven't had surgery myself (yet?!) but as far as I'm aware surgery isn't always the answer. I am currently on a watch and wait plan in the hope that my tumour might shrink on its own. It definitely would be worthwhile finding out if your surgeon has removed a desmoid fibromatosis before as if not removed with good margins there is a high risk of recurrence.

Hope your surgery goes well!

RSK x