IVC LEIOMYOSARCOMA

Hi SSJ

i too have Leimyosarcoma but mine is in my womb. I have been trying to find someone with the same cancer as it is so rare. I’m 49 and was diagnosed in October this year. My oncologist has only ever come across this type of cancer once before he said. Are you having any chemo once you have got over your operation? 
would be nice to keep in touch 

Hi,

I didn't have any chemo or Radiation before or after my surgey,as my Cancer was in my main Blood Vessel ( IVC). In my case the treatment was to remove the malignant tumour as soon as possible.

I not sure about yours, it could be different but one thing is for sure that it should be removed as soon as possible. But of course depend o  your stage and prognosis of your cancer.

I have been seen in UCLH Hospital. Hiw about you? And my Surgery took place in Royal Free hospital. 

From May till October I had several CT scan, 

CT angiogram, PET Scan, blood test and two Biopsy to make sure it was IVC Leiomyosarcoma. 

What is your Doctor's treatment plan?

Hi 

im currently having chemotherapy to reduce the mass in my womb. With a potential hope to have an operation after the chemotherapy. Unfortunately my cancer is stage 4 and I also have it in my lungs so I am having palliative care but I’m hoping the chemo might make things stable or shrink the tumours. 

My wife has Leiomyosarcoma, hers they think started in her womb but due to a major infection it was sent around her blood system - down the IVC and now took hold in her lungs.

Like all sarcomas LMS is rare - always a bit of fun when Janice says about having it to a locum doctor and they reach for wikipedia to look it up.

They first tried doxrubicin to treat but the side effects were - unhelpful. When she was better they then tried Gemcatabine and - fingers crossed - her cancer became stable and now we are at living with cancer.

<<hugs>>

Steve

Hi SSJ

I have Leiomyosarcoma, 2 surgeries in my vulva and my details are in my profile. Here if you want to chat. Take care Chrissy xx

Hi SSJ, I am 77 and had a LMS sub group Spindle Cell, in 2020. It took 10 months to diagnose. It was a retroperitoneal on my kidney. So I went into the Royal Free on Dec 22nd to have my kidney removed. Right in the middle of Covid lockdown and stayed in over .Christmas. Worst Christmas of my life! No visits allowed even from my hubby. Anyway I was followed up at UCLH , Mr. Shankar, who did a CT scan every three months. Then last September they found it had spread to my liver, also two lumps outside the liver in the abdomen. I am due to start chemo on Jan 11th. Now three months since the scan so they have now grown almost double in size. There were 12 x 1 cm , now 1.9 cms. Not happy about the delay. Che o will be Doxrubicin Plus  Gemcitibine. I’ve been told if I don’t have chemo I have 6-8 months to live. If I do, 1-2 years at most. And on,y if I can tolerates the chemo. The odd thing is I feel quite well and have no symptoms. It is hard to believe but no doubt as soon as I start the chemo I will feel bad.! Anyway at my age I can’t complain. I’ve had a good life . My husband also has stage 4 cancer but his is melanoma and he’s on immunotherapy. It’s a race to the finish line.

I was told in July last year by Mr Shankar my Leiomyosarcoma was inoperable,and given 3 to 4 months.During 2 years in lock down i felt terrible at times and was diagnosed over the phone with several illnesses of course none were right.So in UCH for 5 months. Radiotherapy and chemo still fighting,and my heart goes out to us all fighting Cancer.

Hi boo how are you doing now my sister was diagnosed the same just looking for some experience 

Hi boo how did treatment go , are your lungs stable now ? 

Hi Ruthmary,

I know you are having a very hard time. Seems like we are in the same boat....

In October2022 Dr.Shakar and Dr.Collin Forman did my Leiomyosarcoma surgery which was in my IVC (inferior Vena cava) along with my right kidney. 

I had my first scan on 30th of December 2022 and am due for my second scan on 31st of March. So far Mr. Shankar says everything looks good.

After how many scans they found out it has spread to your liver ? Did you have any symptoms?  

Sometime I pushed around by the fears but I believe that life is worth living.I truly believe that keeping positive makes us hopeful.... that's all we can do.

Be strong 

Take care

SSJ