Confirmation letter has arrived

2 minute read time.

22 Feb 2012

I knew when the Prof rang my husband something was wrong - he never ever rings patients preferring the face to face approach. Hubby's hand was shaking when he put the phone down.

The sarcoma which was removed around 5 weeks ago and came back from the original biopsy as being of the same group sarcoma, had been revisited as it had not responded to the chemotherapy as the other deeper in-site abdo tumours, (discovered last March) which are shrinking.

The news was not good. It has now been reclassified as synovial sarcoma - a even rarer cancer, which usually attacks younger people (mostly men) and in the joints, whereas hubby's is in his abdomen and the last one on the abdominal wall. And it is very aggressive.

This Friday hubby is due to start his final chemotherapy session - and the drugs are the ones recommended for the new SS diagnosis, but he has been having pain in his stomach again near the site of the original tumour back last March - so the Prof has called for an urgent CT scan tomorrow and then to see him on Friday for the results and then decisions to be taken as to how to proceed.

We both feel we have been knocked sidewards as things were looking so good - hubby is looking good albeit tired, he is still working and nobody would guess he was ill, except for his hair loss, which is now growing back much to our amusement!!

We have looked up SS, and the information is patchy to say the least and most of it does not seem applicable to my husband - so much information out there in the internet.

Guts churning, heart stopping despair at the moment....... then this morning the confirmation of the phone call came in a letter... black and white. Fear is now overtaking me - but in view of hubby's shock at the news I have to stay positive - I have said that we should await the results of the scan and the discussion with the Prof - but to have a re-diagnosis so far along the line - and to an aggressive sarcoma is dreadful. I do not know what questions to ask - do I ask if there are secondary, metastesising????????????? God help me - I feel lost, somehow and from somewhere I have to find the strength to give my husband support, he has been inspirational in his fight against this disease - this is just not fair!

diamondsgirl over 13 years ago

The results of the scan were not good. After the large primary was removed last March the secondaries which came up in September were responding well to the chemo. Then another tumour came up on the abdomen wall which was removed with good margins 6 weeks ago. This one for some reason was not responding to the chemo drugs. The scan then revealed another tumour which has grown and some nodules on the abdomen wall, which are expected to grow again.

The puzzle is why these latest secondaries are not responding to the chemo. So the Professor has decided to go ahead with the last of the present chemo sessions (no.6) give hubby two months off, then rescan in middle of April, and decide what to do depending on those results.

Hubby is very very down at the moment and convinced he is now terminal although that has never been mentioned. But he is increasingly frustrated by the apparent sudden halt in progress, also he would like to carry straight on with further treatment even though the Prof has advised against it.

So we now have to try to put all this at the back of our minds and be patient for another two months, but it is so so difficult. AND IT IS NOT FAIR!!!!!
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FormerMember over 13 years ago

Hello Diamondsgirl,

I feel for you both so much reading your posts. The awful roller coaster of hope and progress and then bad news is heartbreaking for you. You are right that is is not fair and I think that is a very understable feeling. We are all here for you on this site and willing things to go your way.

Thinking of you,

Panda.
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FormerMember over 13 years ago

Hi Diamondgirl,

No it certainly isn't bloody fair, cancer is a shitty, shitty disease and causes us to be in a shitty , shitty place, sorry for the shit.

If the professionals haven't mentioned palliative or supportive, then they are hanging on in there for beating this thing. They will do absolutely everything for your hubby and you can trust them to do exactly that. And if it means waiting for a few agonising months then that must be for the best. Good luck and I hope the results will mean a favourable treatment plan to zap the cancer to oblivion.

Take care and onwards and upwards to you both

Jan x
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