Hello folks - 53 year old male, here.
Well, went to my GP about 5 weeks ago, and here I am, after xrays, MRIs, CT scan and Biopsy, with a large soft tissue sarcoma (unidentified as yet) in the top of my arm. My life has flipped upside down.
The surgeon has discussed my imminent operation and is talking about removing most of my tricep, using muscle from either my back or my thigh as filler/replacement. After that, a course of localised radiotherapy to improve the chances of it not returning or spreading. I have to say that the thought of what's coming is terrifying me, even though I know I need this sarcoma gone. My only relief in all of this was that the CT scan showed it was localised - but I'm now having to come to terms with what this might mean for my future.
Anyone else here been through similar or can offer advice on how to begin to process this, and deal with it? Anyone had a similar issue, and recovery, who can talk me through what to expect?
Thanks!
Hi Lydia,
I actually went up to see the specialists at the Royal Marsden and they told me mine isn't a soft tissue sarcoma, but a sarcomatoid carcinoma, and I was referred back to my local hospital for treatment. I had an axillary lymph node dissection and mastectomy 2 weeks ago...it's all been quite fast and a bit of a whirlwind if I'm honest. I had a PET scan quite soon after I received my initial diagnosis on Nov 7th, Royal Marsden on the 15th, scan was 19th Nov, surgery on 27th. Luckily mine had only spread to a couple of lymph nodes. I have my next appointment next Wednesday to discuss full histology as I really don't know too much, it was all just a bit rushed to do the surgery and get the bulk of it out before discussing additional treatments but I've been told likely chemo and radiotherapy.
Even though my cancer isn't a sarcoma, apparently a sarcomatoid carcinoma does behave similarly in terms of rapid cancer cell division. I am very small chested and the lump grew quickly and ended up being 11cm across, maybe bigger by surgery day! So it might be a bit of a whirlwind for you too. With both our cancer types, the rarity means there isn't a wealth of evidence about the best course of action, with me they felt get the bulk out first rather than try to shrink it in case the chemo wasn't effective. I would honestly try not to scare or worry yourself, trust what they tell you to do for now, take it a day at a time and try to be as calm as you can.
It's a strange reality to be in but the quicker you adapt to it and get into 'ready to fight' mode the better. I focused on eating well and drinking loads of disgusting good stuff like green tea and tumeric tea 
just to keep focused on something positive that I could control...get your body in a strong position to deal with it all is all you can really do x
