Soft tissue sarcomas

A place for anyone affected by any type of soft tissue sarcoma to support one another, ask questions, and share experiences.

Abdominal lump

KJK
Posted by

Hi.
I am currently undergoing investigations on a lump in my abdomen. It feels like it's in the tissue just under the skin.
I had Hodgekins Lymphoma in 1990 with 6 months chemo and 4 weeks mantle radiation. STS is a high risk for me.
I saw my GP 7 weeks ago. I had an abdominal ultrasound which showed a 5mm cutaneous lesion in the lower left quadrant with vascularity noted on Doppler. An MRI was suggested.

My oncologist referred me for MRI but it was refused. I still don't know why. So a ct scan was done 3 weeks after the US.
Got the results last Tuesday. A 7mm by 4mm SUBcutaneous lesion. All internal organs looked fine. Nothing untoward in the lungs.
My oncologist is meeting the MDT with my scans to discuss.
From what I've read, I should be referred to a sarcoma team?
In the 3 weeks between the US and CT, the lump grew by nearly 50%.
Its been 5 weeks since my CT and by feeling it I can tell its grown again since then.

I go back to see my onc on May 21st. This will be 9 weeks exactly since I first saw my GP.
I'm terrified .
Terrified at the speed it seems to be growing and at how long it seems to be taking to get a diagnosis.

Will things move quicker once I'm referred to a sarcoma team??

I was misdiagnosed with the HL which resulted in the delay of diagnosis and treatment and the spread of the disease. I feel like history is repeating itself.

I'm terrified of dying . I have a loving husband, a 21 year old daughter who I dote on and amazing parents. The thought of not being around for them devastates me .

src60
Posted by

So sorry to read this, it sounds like you have been through such a lot and delayed diagnosis does not help. On the plus side lumps are very common and sarcoma is one of the rarer cancers and also that all the internal organs look fine sounds a great plus. 

Do you know when the MDT is meeting and when you might find out the next step? Sarcoma is a particular focus at the moment and assuming that is your next step if might be helpful to look at some of the information from sarcoma uk one thing they list is the specialist sarcoma centres in the UK.

We are rather lucky (if you can call this luck) to live really close to Oxford and my wife is routinely seen by one of the leading sarcoma specialists in the UK - we have been living with Leiomyosarcoma now for six years and it is so remarably stable my wife only has a check up every nine months.

<<hugs>>

Steve

KJK
Posted by

Hi 

I've asked my friend who works at the hospital and they're normally on a Monday afternoon. So there'll be one tomorrow and one the week after. Then I go back to see my onc the following day - 21st. I guess I'll find out the next step then. 

I live in Derby and there's a sarcoma centre in Nottingham about 20-25 miles away, so that's not too bad. 

So sorry about your wifes diagnosis

I've been reading up on the different types of sarcoma and scared myself stupid. 

Does you wife need any treatment, ie, chemo in between her check ups? How do you both cope? 

src60
Posted by

Hi,

took ages for Janice to get a diagnosis and even then went watch and wait for a while. She had two los of chemo but last of these was some years ago, her cancer appears to be stable and given that it did respond to the last lot of treatment there is a good chance it would respond again if it started to grow.

Janice is just basically pratically getting on with it, I got help doing a living with less stress coruse that helped me to appreciate what we have now. Oddly lost a number of friends/colleagues out of the blue and that helped us to be grafeful for what we have got. Having a 15 year old with high functioning autism also means we need to get on with it. In many ways it has helped bring Janice and I closer together because we know that their can be hard days but they will soon be history.

<<hugs>>

Steve