Hi first post, I was diagnosed with a suspected Sarcoma on 4 April at my local hospital and was immediately referred to UCLH. I'd been advised that the treatment plan would be surgery.
I have a retroperitoneal sarcoma and following biopsy saw the Surgeon on Monday who told me the cancer was aggressive and inoperable. This came out of the blue and was totally unexpected.
I saw the Oncologist next and start 3 x3 week cycles of dox chemo on Monday.
I'm in shock, I was told odds of chemo being successful are quite low.
I'm just 50 and a single parent to a 25 yr old daughter and two boys age 13 & 11. My 13 year old has Tourettes Syndrome and ADHD.
I'm on a lot of morphine because the tumour is sitting on nerves and my right kidney is very swollen
I'm not feeling well and am incredibly tired and I'm worried I'm dying.
I'm trying to be brave for my family but feel very panicky inside.
Also unsure what to expect from chemo.
Is there anyone in a position like mine where surgery isn't possible.
Any experience, advice, anything gratefully received
Thanks Daniela xxx
Hi Daniela, sorry to hear about your diagnosis my wifes LMS was not found in-situ as she had an emergency hysterectomy for pyometra and only some time afterwards when her recovery did not go as expected did they eventually find the cancer spread to her lungs.
We were also told this was innoperable and that chemo was often not effective but when they tried doxy it did shrink the tumours but at that point some of the cancer was the wall of a lung - good news they could fix that, bad news no more doxy; next treatment plan was gemcatabine and again shrunk the tumours and so far they do not seem to be growing again, we have been living with cancer for 6 years and the oncologist is amazed.
Hope your children are getting support in school, our son has high functioning autism and is 15 now just about to do work experience - where did that time go.
<<hugs>>
Steve
Hi ,
At times things have been more interesting, we had a number of times ending up doing homework at the hospital but he is rather stoical. We took the decision to tell him as much as we felt he could cope with as we aware all children are very good at picking up signals and with an active imagination can make things even worse that they really are. We were really fortunate that school was very supportive and two friends went above and beyond - still makes we well up to think of what they did for us.
When we asked him once if he had any worries he asked what if anything happened to me (has a few hospital stays myself), fortunatly we had arranged that Janice's brother and his wife would be guardians - they already have an adopted son and he is very comfortable with them. One heartbreaking moment was when we were driving to the hospital to introduce him to the Maggie's centre and as we drove in he said "are we coming to leave mummy here" - oops.
On your daughter front - bless her for being a staff nurse, we often find nurses joining the forum as they struggle when cancer strikes nearer home.
<<hugs>>
Steve
