Hi
it’s great to see a Sarcoma chat forum. I have had a very interesting relationship with my cancer but now I’m needing some help on dealing with the latest problems.
In 2012 I was diagnosed with a myoepithelial carcinoma sarcoma. The first person in the UK to be diagnosed with this sub-type of Sarcoma and at the time only the 7th in the world. It was a large tumour in my groin but was removed successfully by super surgeon Mr Strauss at the Royal Marsden.
In Jan 2013 the cancer had spread to both lungs with 4 tumours on my left lung and 10 shadows on the right lung which were likely to turn into modules. due to the rareness of the sub-type, I left the Marsden with the devastating news that there was nothing they could do and suggested I wouldn’t make Christmas. I was 41 at the time with two teenage children and a loving wife.
So I lived like a pop star for 3 months and honestly had the time of my life, I continued with my job as I loved my job and also needed the money to fund the holidays and weekend trips we had.
I went back for a CT scan 3 months later to see how long I had left to find the shadows had gone from the right lung and two tumours on the left had gone with the other two halving in size.
It was the best news anyone could hope for. And yes I’ve been asked many times what did you try. I did lots of Jack Daniels, I’m sure that’s not the cure! Whole foods, kept fit, frozen lemons, lemongrass tea, had 3 religions praying for me and kept positive. It’s great to say to people I was given months to live and forgot to die!
The story continued however, the remaining two tumours continued to grow but as they had stabilised to the two I had surgery to remove them at the Brompton. Since then tumours have continued to appear every one to three years and I have had them removed so 5 operations to remove 8 tumours. And even though I’ve had big lumps of me removed, lower left lung lobe, quad, 3” of my buttock, I’ve lived a normal healthy life and managed to snow board, surf, walk and even cycle 100klm regularly until last September.
Just as you think you can live with cancer the scan in July showed 7 tumours in both lungs, a follow up MRI scan in November showed a 5cm tumour in my groin.
I have to say that what a difference 10 years makes. I had options! The Marsden had sent out a questionnaire to all the specialist sarcoma hospitals across the world to ask if they had treated a myoepithelial carcinoma sarcoma. They had found 23 people had been diagnosed and 9 had been treated with a variety of chemotherapy. None had cured the disease but doxorubicin had partial success with 1. I finished Doxorubicin in April, it had partial success with the lung tumours and had stopped the groin tumour from growing until now. The hospital also has a range of other things they can do to keep me kicking that cancer can down the road.
All the tumours are growing again. I’m starting round two of chemo in the next 10 days which is a combination of Gemcitabine and Dacarbatine.
So I wanted to know a couple of things. Has anyone got any experiences of these treatments and side effects. Doxorubicin was very tough at times but I coped with it. Is this as bad?
Also it’s the first time I’ve experienced tumour pain. I’ve been referred to the palliative care pain team for help but also wanted to know if anyone else’s Sarcoma is painful? My is like toothache pain or bone pain. If anyone has had this any suggestions for pain relief I’d be grateful and I can ask the team when I go. As a bench mark, Morphine doesn’t touch it at its worst so that’s the level of pain it can cause. Luckily this is only a couple of days a month.
I have lots of experience of dealing with Sarcomas, hospital visits, scan anxiety, parking issues at Marsden, surgery, so if I can help anyone I will. I’ve been on 3 month scans for the last 10 years and I am so grateful for the years I’ve had considering I had months to live 9 years ago.
