Diagnosis: pleomorphic sarcoma

Posted by 1rcook @1rcook, Apr 20, 2023

The past 3 months my husband has been seeing different doctors for what was once a small bump on his back. It's now about 10cm. We've been told everything from "it's a torn muscle, to its a hematoma, to melanoma and just yesterday we received pathology reports back in his patient portal, with a diagnosis of pleomorphic sarcoma. We've not heard anything from his doctor and she got the results 2 days ago. We don't have many options for good oncologists in our area and her follow up has been very slow. We are hoping to get a 2nd opinion to find out about treatment options.

Interested in more discussions like this? Go to the Sarcoma Support Group.

1rcook | @1rcook | Apr 20, 2023

I am interested in a virtual 2md opinion if possible..has anyone tried this option with Mayo clinic?

Colleen Young, Connect Director | @colleenyoung | Apr 30, 2023

@1rcook, Mayo Clinic welcomes both new and existing patients for virtual and in-person care, including elective surgeries, in adherence with federal and state executive orders and guidance. Video and phone visits can be great options for appointments before, after or in place of face-to-face care. Appointment coordinators will recommend a virtual visit if it best fits your individual needs. Here is more information and how to get started with submitting an appointment request: http://mayocl.in/1mtmR63

I'd also like to bring fellow members like @beverlybooth @fasthealer @gemmalt @wandrew @kmm8 @sonnyfigueroa @me67 @zazu into this discussion. They, too, have experience with pleomorphic sarcoma.

Have you had further discussions with an oncologist about a treatment plan? How are you and your husband doing?

rggj | @rggj | Jun 17, 2023

In 2017 I was diagnosed with Pleomorphic Liposarcoma. It took 5 weeks after the biopsy procedure to get the diagnosis. Who knows why it took so long!? In that time the sarcoma grew to the point that it was visible under my shirt. The surgeon said it was a low grade sarcoma and they could remove it and I would be playing golf in a week. He lied!! Fortunately, my wife asked for copy of the diagnosis. When we got to car and read it, it said “high grade, aggressive.” No longer trusting the surgeon, I called my primary doctor in Minnesota and he got me scheduled for an appointment at the Mayo Clinic in Rochester 3 days later. I am convinced that this saved my life. From being presented with the diagnosis, in Florida, on Monday I was on the surgical table, in Minnesota, Friday morning. 10 weeks later the surgical wound had healed to the point that I could start Radiation and Chemo. Many adventures and potential setbacks occurred over the next several years, but I have complete faith in the protocols and procedures used at Mayo. I know that I am in the hands of the BEST team of medical professionals available anywhere. They saved my life!

rggj | @rggj | Jun 17, 2023

In reply to @1rcook "I am interested in a virtual 2md opinion if possible..has anyone tried this option with Mayo..." + (show)

I have posted my experience with Pleomorphic Liposarcoma treatment at the Mayo Clinic in Rochester. Don’t think twice, just do it! They, in my experience, are the best.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 30, 2023

In reply to @rggj "In 2017 I was diagnosed with Pleomorphic Liposarcoma. It took 5 weeks after the biopsy procedure..." + (show)

Hello @rggj,

As I read your post and saw that your wife asked for a copy of the report and saw that it gave a different picture of what was actually going on. I realized that your story points out the importance of each of us knowing our medical history, reading reports and then getting another opinion if that is necessary.

It is important that each of us advocate for ourselves, and this can only be done by having a good understanding of what is happening. I'm pleased for you that you found the help you needed at Mayo Clinic.