Diagnosed with sarcoma? Let's share

Luckily 30 days of radiation but still open would and looking at flap surgeru

My undifferentiated sarcoma was removed from my knee and on my five year anniversary of being cancer free several spots were seen in my lungs. I’ve had surgery to remove the two largest nodules a few months ago. Now just waiting anxiously until the next CT scan to see if other nodules have grown and can be surgically removed. I’ve joined a sarcoma cancer support group (virtually) hosted by Memorial Sloan Kettering and would be happy to share the link to application if you’re interested.

Hi Ellen,

I’m sorry to hear about your recent medical condition. I hope you’re getting the medical care you need and your outlook is good.

Here is the link to the Memorial Sloan Kettering sarcoma support group application. It meets virtually once a month and is hosted by an MSK social worker. It may take a few weeks to be approved. I find it to be a helpful outlet and haven’t found another like it at mayo or in the Twin Cities. . Having metastatic sarcoma is very scary and I have found it hard to talk to my loved ones about it openly and honestly. That’s why a support group is helpful.

Let me know if you need anything else. I’m always willing to listen, talk and share. Sending you much love and support.

Mona

Thank you, Mona. I have just registered.
I agree with you that sharing with family is difficult. I’m the first in the family with cancer. It’s hard to get a conversation going. They don’t know how to respond and I’m not sure if my sharing is helpful…so typically I don’t.

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.