Diagnosed with sarcoma? Let's share

Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.

As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi’s sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.

Let’s get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?

Liked by Dee

@deborahe

Congratulations, Jeff! That is indeed wonderful news! All is well with me; I return to Mayo in November for scans. In April I elected to have a scar revision to the trach site, and am very pleased with the results. I don't know if you are on Facebook, but I follow a page called "The Voice Forum" (run by a Speech-Lang Pathologist with a specialty in voice disorders). Your story was shared on that page on April 20! Enjoy your summer and keep in touch! -Deb

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Deb, it has been sometime and I was thinking of you and curious as to the progress you have been making. I continue to be blessed and am enjoying my grandkids! Look forward to hearing from you. Jeff

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Hello. I have fibrosarcomatous dermatofibroma protuberans (fs-dfsp). I'm currently scheduled for surgery next week, but just tonight we are contemplating calling Mayo Clinic Minnesota for a second opinion.

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@raeangel319

Hello. I have fibrosarcomatous dermatofibroma protuberans (fs-dfsp). I'm currently scheduled for surgery next week, but just tonight we are contemplating calling Mayo Clinic Minnesota for a second opinion.

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Hi, Sorry to hear of your condition. If you are not putting yourself at risk by delaying surgery to do so, a second opinion can give you another perspective that may reinforce your current course of action or offer other options, and I think it's especially important with rare cancers. It's worth a phone call to Mayo. All the best to you on this journey.

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@raeangel319

Hello. I have fibrosarcomatous dermatofibroma protuberans (fs-dfsp). I'm currently scheduled for surgery next week, but just tonight we are contemplating calling Mayo Clinic Minnesota for a second opinion.

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hi @raeangel319, welcome to Connect. I'd like to introduce you to @juzme88 and @biceto, both of whom have dermatofibrosarcoma protuberans (DFSP).

Should you decide to call Mayo Clinic for a second opinion here are the contact numbers http://mayocl.in/1mtmR63. If you have any questions about Mayo expertise and care, feel free to ask questions to @christine19 @jeffk and @deborahe. While they don't have the same type of sarcoma, they were all treated by sarcoma specialists at Mayo in MN.

Raeangel, when were you diagnosed? May I ask where the tumor or lesion is located?

Liked by Dee, Biceto

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@amd123

Hello. My son was diagnosed with synovial sarcoma in 2017 just two weeks before his 21st birthday. He had proton therapy and major thoracic surgery 6 weeks later. Surgeons removed two ribs, part of his lower lobe, and the mass that was growing near near it all. He had to take a sabbatical for a semester from college, but he returned to school and graduated on schedule. He had just started working two weeks before at a job in his field, when we received the news that his cancer had metastasized. He is only 23. Mayo immediately began the process of getting his chemo started. We have now completed two cycles. He has no appetite and is very nauseous. We are devastated by this all. He is trying so hard to be strong. 5 days after his first cycle, he went back to work. I know he is hoping he will be able to do the same this time, but I’m not sure.

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Hi Heartbroken @amd123, That is surely a blow to your family and your son to find out that the cancer has returned after only 2 years. How is he doing after this cycle of chemo? How often does he get chemo?

Liked by Dee

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@colleenyoung

hi @raeangel319, welcome to Connect. I'd like to introduce you to @juzme88 and @biceto, both of whom have dermatofibrosarcoma protuberans (DFSP).

Should you decide to call Mayo Clinic for a second opinion here are the contact numbers http://mayocl.in/1mtmR63. If you have any questions about Mayo expertise and care, feel free to ask questions to @christine19 @jeffk and @deborahe. While they don't have the same type of sarcoma, they were all treated by sarcoma specialists at Mayo in MN.

Raeangel, when were you diagnosed? May I ask where the tumor or lesion is located?

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I had it biopsied April 30. (Is that what they go by for official diagnosis date?)
It's on the side of my breast, but I was assured it's not breast cancer. That it was not in the breast tissue.

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Hello @raeangel319. FS variant here to. If it is Mayo Minnesota you are looking at, Dr Randall Roenigk is a bit of a legend among dfsp’ers. Not sure how many fs subtype he has treated, but he has performed successful Mohs on patients others have refused. For FS variant, the follow up is equally as important as the surgery itself. The FS variant has a very real increase in the risk of mets. Lifelong follow up and regular scans should comprise part of the approach to post operative care. Wish you well and keep posting about your progress.

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@raeangel319

Hello. I have fibrosarcomatous dermatofibroma protuberans (fs-dfsp). I'm currently scheduled for surgery next week, but just tonight we are contemplating calling Mayo Clinic Minnesota for a second opinion.

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When my laryngeal chondrosarcoma (less than 200 cases ever) was diagnosed the first opinion I received from one of the top 10 surgeons in this area was that I may end up with a permanent trach and maybe a feeding tube. I ended up visiting 5 other surgeons and Mayo was the only place that provided me with hope that they could remove all the cancer and maintain the majority of functionality. I strongly advise you to seek additional opinions and Mayo should be at the top of that list.

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@jeffk

Deb, it has been sometime and I was thinking of you and curious as to the progress you have been making. I continue to be blessed and am enjoying my grandkids! Look forward to hearing from you. Jeff

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Hi Jeff, I sent you a message through the portal here. : )

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About four years ago they found a soft tissue sarcoma next to my tummy. I underwent radiation treatment and surgery. The tumor was dead when it was removed. Then a short time after I went to Mayo,Jacksonville and Dr Attia. He found stage 4 cancer in my lungs and upper right leg. After six hellish bouts of chemo and surgery I have been cancer free. But I am on a maintenance chemo every 6-8 weeks. FYI……….. I have never asked the medical term for my sarcoma

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@saemlerpe

About four years ago they found a soft tissue sarcoma next to my tummy. I underwent radiation treatment and surgery. The tumor was dead when it was removed. Then a short time after I went to Mayo,Jacksonville and Dr Attia. He found stage 4 cancer in my lungs and upper right leg. After six hellish bouts of chemo and surgery I have been cancer free. But I am on a maintenance chemo every 6-8 weeks. FYI……….. I have never asked the medical term for my sarcoma

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If you want to get more details, in between appointments, you can sign into the online Patient Portal. and find out.

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Good point and you can message your medical team with any questions/concerns you may have. The Portal is the best for all info

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synovial sarcoma – right jaw

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@rgotto41

synovial sarcoma – right jaw

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Welcome to Connect, @rgotto41. I'd like to bring @superdave, @amd123 and @disneyrn who have experience with synovial sarcoma.

Rgotto41, we look forward to getting to know more about you. When were you diagnosed and what treatments will you have or have you had? Got any questions for us?

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@colleenyoung

Welcome to Connect, @rgotto41. I'd like to bring @superdave, @amd123 and @disneyrn who have experience with synovial sarcoma.

Rgotto41, we look forward to getting to know more about you. When were you diagnosed and what treatments will you have or have you had? Got any questions for us?

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I had pharyngeal cancer in 2012. Surgery,chemo, and radiation. Now this new tumor in the same area and extending into my jaw. My surgery to remove the tumor seems to have gone really well. Now they suggest a 6 week followup course of radiation (proton) to boost the probability of no recurrence. I’m 78, widowed, already somewhat limited by aftereffects of the earlier treatments. I’m trying to balance the additional insurance against recurrence against the reduced quality of remaining life associated with another radiation series. It’s a guessing game I know but I’m leaning toward foregoing the radiation in favor of making the best I can of time remaining.

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