Myxoid Liposarcoma - again

I've now received the verdict. Myxoid Liposarcoma has been confirmed by both biopsy and the PET scan shows a hot spot for the area concerned. However the real bad news is that the Ortho Oncologist thinks it is a seperate instance of liposarcoma rather than a spread of the original. He told me it could even have started in the groin/buttock region and spread to the lower thigh. I was told that the prognosis for this type of liposarcoma is poor and that it keeps on re-occuring in different parts of the body until it is no longer able to be treated and then one dies. He told me that I won't die in the short term but will be very lucky to last ten years and most likely about five years. They are going to treat this type of sarcoma as a primary sarcoma with radio therapy followed surgical removal. Going on observations of my own symptoms in the affected regions, over a number of years, I tend to agree it is a seperate occurence. Other hotspots of disease over the years include my spine and my left leg. I still tend to think some sort of infection has set me up for or caused sarcoma.

Myxiod liposarcoma is a vile disease. The doctor described it as a malignant slime the suddenly develops and grows in various parts of the body.

I did ask about Yondelis/Trabectedin and initially the doctor was somewhat confused. However a couple of oncologists were close at hand one of whom new about it. In Australia it is only being given on compassionate grounds and Newcastle Hospital is the only center in Australia trialing it. He said it might be do-able if sarcoma re-occurs after this treatment, but we'll see and cross that bridge if and when we come to it.

The radio-oncologist then saw me. He told me treatment would be similar to last time. This time I'll have 15 treatments over 3 weeks and then a MRI scan to see it has shrunk small enough to allow surgical removal without having to have plastic surgery. So more ordeals are ahead. I was informed that there is currently a waiting list of 4 to 5 weeks before radiotherapy can commence. It is unfortunate that there was a 3 to 4 week delay in organising a biopsy as treatment would then be commencing next two weeks if it had occured on time.

The doctors also apologised for the delay in organising the biospy. It was something that should not have happened and I was told they will investigate to see what went wrong with the system and why the resident's request was not actioned and followed up. The doctor I tried to contact was on holiday and my calls were not passed on to another doctor. Anyway we're moving forward again.... a pity about the above delay in biopsy though. :(

Pain is a bit of an issue at present. I see my GP early next week. Let's hope he can assist. In the meantime Panadol and nurofen taken together seem to assist. However they do wear off after a couple of hours. The bus trips to and from hospital today were absolute agony.

Anyway it's time to reflect. There are lots of things to think about. I guess the main issues are quality of life in the long term and the best way to really enjoy life in the short term. I can think of many things LOL. :)

cheers

Rob