Diagnosed with sarcoma? Let's share

Thank you!
I try to get to the Y 3-5 days a week.
It is a tough day like today when I feel fatigue and queasy.
Great to connect!

I have stage 4 Leiomyosarcoma. Football-size tumor mostly removed. Nodules on right lung and liver. Starting chemo soon. Live north of Mpls-St Paul Mn.
~ Mary

Hello @bicycle3 and thanks for your note. All of us here on Connect have such extraordinarily unique journeys. And yet we all have this one common thread in our diagnosis of sarcoma cancer.

Your journey is so very different than my own. I think I have dealt with a lot but I can't imagine a 20 year journey with such a mysterious and powerful cancer. I sure admire your amazing level of activity. I try to do a little aerobic activity and lift a few times a week which is a big change for a guy who used to be a genuine "gym rat"!!

Hello Teresa (@hopeful33250) and thank you for your kind note. Yes the biopsy coming back benign was a big relief!

My back problem has been part of my journey for many years. When my primary and I discussed the possibility of surgery to relieve the pain he immediately sent me over to Mayo Rochester. Dr. Khanderia had been chairman of the Cardiology department for 25 years so he knows the great skill level at Mayo intimately and I feel very fortunate to have him now as my primary care provider at Advocate Aurora Global and executive health department.

Mayo has been very helpful in managing the progress and pain over the last 4 years. I am thrilled to have Mayo as part of my health delivery system -- absolutely extraordinary!!

William

I take pain pill every 4 hours. Also one that is slowly released. Also tylenol every 8 hours.
I am able to attend my weight training classes and dance classes and yoga all at the Y as I modify. Cycling and swimming are other loves. I have cycled on the flat Erie Canal trail and will try swimming this week. The ileostomy is my concern in the water.
The chemo made my hands and feet a bit crusty. My hair falls out a bit at a time so
I hardly notice it. It is not growing or thick as it used to be.
We will measure the largest tumor on the 31st to see how it is growing or?!?!?

I’m a 69 year old male in otherwise generally good health. In September I was diagnosed with Liposarcoma of the Retroperitoneal area with a 6.1cm x 6.7cm tumor abutting top of my left kidney. Telltale symptoms (fatigue, night sweats, dry cough) began in April. The diagnosis was made at Fox Chase Cancer Center of Temple University Health Systems in Phila. The pathology report after biopsy of tumor indicates a subtype of well-differentiated cells, though the Surgeon Oncologist said there is potentially some de-differentiated cells showing up in surrounding fat. His recommendation is five weeks (25 days) of radiation on the tumor area, followed by 5 weeks of recovery, then open surgery to remove the tumor mass, left kidney and possibly the spleen. The left kidney is currently healthy and is only abutted by the tumor making it close in proximity. Per the surgeon, the reason the kidney would be removed is due to the damage caused by the radiation treatments. In my meeting with the Radiation Oncologist, I asked if the radiation treatment can be made precise enough to treat the tumor and prevent/minimize damage to the left kidney. She said that she would adjust the target area based on what the surgeon’s plan was regarding the margin he plans to remove (full kidney or partial kidney). My hope is that both radiologist and surgeon can agree to work to spare a portion of the left kidney, but I don’t think the surgeon is inclined to change his plan. I am going for a second opinion at Penn Medicine Sarcoma program this coming week, but Fox Chase doctors bizarrely told me in advance that they expect I will be told by the Penn doctor that he recommends surgery up front, without radiation treatment. If so, that demonstrates how rare this cancer is, where two leading cancer treatment centers in the same city do not agree on the same treatment protocol. If the second opinion recommendation by Penn Medicine is for surgery up front as predicated by Fox Chase doctors, I may be facing the need for a possible third opinion.

Welcome @bicycle3. I look forward to learning more about you. How are you feeling after radiation and chemo? How is your mobility?

Hello @william2022 and welcome to Mayo Connect. I so appreciate you sharing your journey with liposarcoma. It is very encouraging to hear about your successful treatment. I'm sure you are relieved to know that the suspicious mass, removed last month was benign.

Is the lower back pain a result of the liposarcoma surgery?

I was diagnosed in Florida (not Jacksonville Mayo). What they had planned for treatment likely would have killed me. My primary said they wouldn’t touch what I had but referred me to Rochester. You are right, they are the best!

I have inoperable lipo sarcoma attached to my hip. Other bits have been removed with resectioning of bowel.
Have had 15 radiations and 5 chemo's.
Will get a scan at end of month to see what is next.
This is all after a resection of bowel in 2001 from a mass tightening around the outside of the bowel.
No scans until 2021 because of a cloudiness on dexascan.
A patient at Wilmot Center of Strong Hospital in Rochester, NY