Thanks to everyone, sorry I haven't come back until now, it's taken me quite some time to process everything.

The good news is, it isn't cancer - well, not technically speaking anyway.  I have a Desmoid tumour and a condition called fibromatosis, extremely rare and as such have found very little info or support.  Despite Desmoid tumours being benign meaning they don't metastise, they do grow fast and aggressively, are locally invasive, put pressure on nerves and are a huge threat to the organs they grow close to and are considered a type of soft tissue sarcoma.  So although initially my reaction was "yay I'm not dying" - the doctor's more serious response now makes sense after I've learned more about the condition and how difficult it is to live with because there aren't as many treatment options due to its high recurrent nature (30% of tumours removed grow back more aggressively) and lack of funding - chemo and radiation treatments are hit and miss and not much research is being done.

One of the reasons I didn't come back here is because I feel like a fraud on a cancer forum when I've been told it's not cancer.  It baffles me, because I'm in pain daily to the point I hardly leave the house unless I'm hopped up on super-strength cocodamol, my organs are being invaded and I'm facing an awful decision about surgery for the tumour, knowing the recurrence risks and how much disfigurement it will cause to my body (they'll need to take half a rib with it at least), looking at chemo as an alternative treatment... but it isn't cancer and I wish there were support forums for it.

Oddly, considering how rare this is (2-4 people in a million), a friend from childhood has the same condition and has nearly died twice from the tumours growing into her essential organs.  I went from being so happy I wasn't at death's door to realising how serious this condition can become - and how quickly - in a matter of days, and it feels like there's nowhere to turn. Even friends and family are just full of "yay it isn't cancer!" and I don't know how to express to them that it doesn't mean my pain and the risk of damage to my body are any less.

Thank you to all who have supported me through this journey, it's meant so much to me.  I hope you all live long and happy lives xxx

Special thanks to [@Amy321]‍, [@Linda2022.]‍, [@Meglit21]‍, [@laraj]‍, [@RoseStarBlue]‍, [@story78]‍, [@Gemmaclare]‍, [@hassledmum]‍, [@cph]‍, [@davek]‍, [@Pinkcandoone]‍, [@CRUK Nurse Julia]‍ and [@Jamie90]‍ for all your help, support and encouraging words during this journey.

Hi my lovely 

yes I was worried about you , but I was hoping you had skipped off and had the result you wanted and was so happy that you may have not needed to come back here . 
you are always welcome to chat to us guys I'm sure everyone will be happy to chat to you still , please don't think you are not welcome here . I wish you the very best vitual hugs Lara xxx 

Hi Laura, don't ever feel a fraud for coming on this forum, you have been diagnosed with an aggressive tumour, My basal cell carcinoma although a "minor" cancer in the world of cancer because they don't tend to metastesise, it was in the lower eyelid and when they infiltrate can go into eyeball and brain. I have an optic pathway glioma which was stabilised with radiotherapy but recent scan from the summer shows that it is changing, again they don't usually metastesise. about to have a scan for a suspected neuro endocrine tumour in the small bowel, So if you are having a down day because you are in pain from your tumour or you are coming on to support others going through a similar journey then please stay and share your progress, it will also help others

xxx

Please don't leave us!

Technically these very rare tumours aren't cancers but the treatments used are common to both conditions, as is the support needed.

All the best

Dave
 

Hi Laura

i was just here looking for some advice for a friend who is waiting for appointment for lump In breast and saw your post. 
 

I have a desmoid, diagnosed July, there are a lot of things to think about but there are loads of resources online and on Facebook there are groups - desmodian and Desmoid united uk - on those you will find helpful info, will be able to chat to others on there and you will prob be able to find someone with a tumour in similar location and see what they say about treatment etc.  I think about 50% just regress by themselves following diagnosis so try not to stress too much you may be lucky . You didn't say where you were going in london but presumably UCLH or RMH, either way they will have experts experienced in it and will find the right treatment for you. Take care. Xx