Metastatic high grade leiomyosarcoma - left calf

Hi Lilly,

my wife Janice has Leiomyosarcoma though hers the believe started out in her womb - long story.

She has extensive mets throughout both lungs. When she was finally diagnosed they tried watch and wait for a while - then they tried some chemotherapy - so effective it managed to cause a lung to collapse!. After fixing the lung they tried a different form of chemotherapy and managed to render her cancer stable. We have been living with cancer now for over 6 years.

The pandemic has made life more interesting with telephone appointments but her oncologist is really amazed at Janice's resilience she seems just to say I will not let this get me down,

Janice never wanted a prognosis and from what I have seen of Leiomyosarcoma there is an element of pick a number out of the air (prognosis for rare cancers is little more than guesswork).

Sort of bizarrely something that really helped me was a major accident locally where 6 workers were killed - it helped to show me that nobody really knows what tomorrow will bring and when I did a living with less stress course the bit about living in the here and now and enjoying what we have really struck home.

<<hugs>>

Steve  

Thank you for your response. I only asked for a prognosis recently as one oncologist a few months back seemed to think I was not grasping how ill I was and so I assumed I wouldn’t make Xmas !

Your wife is fighting a good fight though but it’s not same as other cancers is it? They talked about chemo for me soon but am not sure if side effects make it worthwhile, it’s only palliative. 

Your right about nobody knowing what’s round corner especially with COVID too. Just have to live in the now and every day is a bonus xx

Hi Lilly, what rotten luck to find yourself here. Not having face to face contact with your team is really tough and I have a lot of sympathy for you. I’m not sure I could have coped with that. My sarcoma was originally diagnosed as leiomyosarcoma in my left thigh three years ago. Five bouts of surgery later the histopathology seems to change every time somebody sticks a scalpel in me and analyses what they have cut out! Unfortunately the radiotherapy I had at the beginning of last year didn’t clobber all the rogue cells and I had a further recurrence back in September. But, and it’s a big BUT, I’m still very much here. Over the past three years I’ve learnt a a couple of things: don’t pay much attention to prognoses (everyone is different) and find the right support mechanism. It is a given that you’re going to go through Hell following a sarcoma diagnosis, please try to get the right people around you. It’s a horribly lonely disease and you really do need people who can understand what you’re going through, which is where this site comes into its own. If you’ve got the right support life becomes so much easier. I had a great email this evening from a friend who has just made it to three years disease free from her initial leiomyosarcoma surgery: “Don’t know what the future will hold as none of us do, but for now it’s amazing to have come this far”. She went through some really tough times, as so many of us have. So, hang in there and reach out when any of us can help. 

Stay well and please keep in touch,

Thank you for taking time to reply. I know I won’t be having surgery and got a 2nd opinion re that. I think your right about prognosis, it all seems a guessing game with sarcoma. I don’t know if there’s any research ongoing. 

I think we all need extra support with COVID around but I have been to 6 different hospitals in 2020 for biopsy, tests and then radiotherapy, fortunately stayed virus free. The normal life is what I miss the social side. No hugs either 

Stay safe good luck and thanks xx

Hi Lilly

My wife's oncologist is an very active researcher to quote "is currently developing novel therapeutic proteins and clinical trials with Cancer Research Technology and European Bone Sarcoma Centres, respectively."

<<virtual hugs>>

Steve