Diagnosed with sarcoma? Let's share

When I was trying to do research for my mom, it was VERY hard to find research on sarcomas. I think because they are so rare? There is only one sarcoma specialist in Indiana, and we didn't know anyone with her type of sarcoma (leiomyosarcoma). I'll be praying for you! I know this is such hard news. It was for my mom, and it was for me - her only child.

Thanks for replying. I will see my oncologist tomorrow. After much research I am better prepared for not such good news. I think it helps to not be surprised so that one can more easily absorb important information and try to behave appropriately especially in the presence of a loved one.

I was diagnosed in 2017 with Pleomorphic Liposarcoma. As with your case, it is very rare and it took 5 weeks to even get the diagnosis. There are not a lot of studies, because of its rarity, so protocols for treatment seemed to be a bit of a shot in the dark. Surgery removed the sarcoma from my back and after 10 weeks of wound healing, radiation and chemo followed. I started followups with Blood work, MRI’s and CT scans every three months. I am now to the point of doing my followups yearly. This is an adjustment for me as I have found security in those followups. So far I have been very fortunate as there has been no reoccurrence to date. It sounds as if your direction is similar.
Trust the process and your Mayo team. They ARE the best.
Best wishes going forward, one day at a time.

Thank you. I will be asking if the scalp’s bone density acts as a barrier for the brain. Need to know how the limited depth of the soft tissue on the scalp impacts the treatment plan, compared to locations on limbs or torso.

Good Luck and good you have it diagnosed correctly - my Dad had a skin tag removed from his back which has turned out to be pleomorphic sarcoma. Make sure you request chest x Ray/CT to ensure no spread. We were told these were very rare too and not a lot of research on treatment options (I’m sure yours will be surgically removed if on scalp but Dads is now in lungs).

I am diagnosed with pleomorphic sarcoma on my scalp, which I understand to be very rare. I have my initial meeting with my oncologist today and don’t yet know the stage or grade. She is a board certified surgical oncologist. Because of the location, should I seek a specialized treatment facility.

I am not a medical professional. I do know that sarcomas are nasty, aggressive cancers, so please listen to your sarcoma specialist. My mom had leiomyosarcoma.

You are so fortunate to have found this cancer and got rid of it! Praise the Lord.

I have just been diagnosed with pleomorphic sarcoma located on top of my left knee cap. I'm wondering what the odds are that the section can be removed and a metal knee put in it's place or if an amputation is the only answer.

I was diagnosed with Leiomyosarcoma in 2014. I am now 73 years old.
It was in my left breast therefore had a mastectomy and reconstruction. I have had 18 contrast dye CT scans. I am due to have my last in
October 2024 (ten year watch).
Has anyone had experience with getting to the 10 year mark and if so did you stop the CT scans?
It’s so important to find Sarcomas early I’m not clear if I should continue the scans after my 10 year mark.
If you have any knowledge and can comment I’d appreciate it.