Hello all, wow this has been a difficult two months, after 19 months of abdominal, back, shoulder and arm pain I finally have been diagnosed with leiomyosarcoma, I thought the cancer was just in my arm socket shoulder and arm but turns out it started in my uterus and has spread to my pelvis, liver, spine, rt shoulder rt arm and rt arm socket...... 33 recently separated from husband and a Mumma to a beautiful 11yr old son. I'm super scared! Waiting on a call from a Dr at the QE Birmingham about starting chemotherapy and radiotherapy xxxxxx
Hi Janine, it is so so scary! I totally understand what you are going through.
I have been facing something similar over the last year. Originally diagnosed with a big leiomyosarcoma tumor in my stomach back in August 2020 and had a total gastrectomy (stomach was completely removed). This is on its own a big challenge in my day to day life having to live without a stomach.
Unfortunately, cancerous cells were in my blood stream and now it has spread to my abdominal area. Multiple tumors in the area including liver, pancreas, heart and lungs.
My condition is terminal and I was given initially a few months prognosis. Just finished 6 cycles of aggressive chemo over the last 4 months and still standing. Thankfully I managed to withstand the treatment without any organ failures. Probably the toughest thing I had to do in my life!
The good news is that although toxic and aggressive the therapy looks like it helped contain and control my situation and I hope it stays like that for as long as possible.
I will now have a much needed break from treatment to let my body rest and recover as much as possible from the chemo.
Trying to stay positive and focus on the simple joys in life. I have been receiving counseling and it helped me a lot.
Our type of cancer is unfortunately not that common and this makes it scary.
You are not alone here facing this kind of situation.
Please do not hesitate to reach out if you feel like it.
Hi Janine. I was told 2 months ago that I have secondary tumours in the lungs and liver and finally yesterday that I have a leiomyosarcoma for which there is no surgery possible. Also awaiting oncology referral at QE...maybe we'll see each other! I'm frustrated at the wait because I feel the disease has already got out of hand but I am determined to be positive. Best of luck a d let's hope QE know what they're doing
Hi! Thank you so much for the reply! My appointment is this Thursday at the QE with Dr sherrif, pls let me know when you're there would be nice to speak to you.
