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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?
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Husband has just been diagnosed with soft tissue sarcoma
Trying to learn about this SRCC type of Cancer
Posted by caragiver1 @caragiver1, 12 hours ago
RCC with 60-70 % sarcomatoid features
My husband on Dec 2 went to ER for lot of blood in urine !,we thought caused was from a kidney stone ! Because 1 year before same thing happened only it wasn’t as bad as this time /husband was sent to urologist back then who but nothing was done // fast forward to dec 2nd 2021 at ER we found out from CT there was a 7.8×5.6 tumor in left kidney which was removed and biopsied and it was then we were told Husband has stage 3 -grade 4 Renal cell carcinoma with 60-70% sarcomatoid features // my husband started Keytruda !! .. I’m hearing good reports about keytruda but everything I’ve researched on Sarcomatoid feature is poor !, I’m reading the higher the percentage the poorer the prognosis;.( I am hoping to learn more about this awful cancer !.. thank you in advance for any insight .
I posted this earlier in the cancer section
3 years ago my oncology surgeon told me this was only thing that would stop this cancer. I refused and he had not pushed me to make the decision recently.
I am taking the chance that it will not spread and affect my arm more than it is now. Currently I have some arm/shoulder pain but am getting a cortzone shot in my shoulder next month.
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1 ReactionOh gosh, @vivianfromaz, I sincerely hope you don't have Valley Fever or that it is easily manageable.
@damlady2, amputation would be life-altering. I can understand your hesitancy. Are you having to make a decision about surgery or not at this point or not yet?
@spadafarm, as you can see there are several sarcoma survivors here who are Mayo Clinic patients. If you have questions about Mayo or as you prepare, please ask.
We have and are setting that up.
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1 ReactionI was diagnosed in 2018 in Michigan with a mass on my back near my right shoulder blade. My GP expected it to be a lipoma so I went to a general surgeon. Whoops. When the biopsy was positive for cancer, I went to University of Michigan Rogel Cancer Center for two additional surgeries-- radical removal to get clean margins and flap reconstruction. The biopsy and research found small blue cell sarcoma, most like Ewings. I also had tiny nodules in my lungs, so I had 7 rounds of chemo: doxorubicin, cyclophosphamide, and vincristine. Then we moved to Phoenix, and I came to Mayo Clinic Phoenix to continue my care 2019-current. I've had four rounds of radiation to nodules as they appear, and most recently just finished 7 rounds of chemo: topotecan and cyclophosphamide. Then my CT last week shows I may have Valley Fever, awaiting blood test results, or more masses in my lungs I've been very positive throughout and during Covid isolation. But this new challenge is a shock. I rarely go out, always wear a mask, and take care of myself. Cancer sucks!
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1 ReactionI have Lipo sarcomas in chest/ shoulder area. I have had 8 surgeries, 3 cryoblations and radiation. The first surgery was in 1988. Since the mid 1990’s I have been a Mayo Rochester patient. Presently I have a large mass on my brachial plexus. My oncology surgeon says the only way to stop this slow growing tumor is a quarter amputation of my arm/ shoulder. This would drastically change my life style. I am 77 years of age very independent and an active bike rider. My prayer is for continued slow growth. I am currently on a trial with Ibrance and have been taking it for 2 years. The masses have not shrunk and recently showed some growth. Positive attitude and trust in my team at Mayo has allowed me to remain positive and live life to the fullest.
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2 ReactionsThis is a very different type of chrondrosarcoma than what I was diagnosed with, and while I can offer support, I don’t feel I can offer any relatable experiences. Having said that, I do believe in getting a second opinion if time allows.
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1 ReactionWelcome @spadafarm. I can only imagine that the new diagnosis of Chondrosarcoma is frightening for both you and your husband. Luckily, there are several members who can share their journeys with you, like @deborahe @jeffk @julie010 and others.
You can read more about their journeys and connect with them in this discussion:
- Cricoid Chondrosarcoma https://connect.mayoclinic.org/discussion/cricoid-chondrosarcoma/
Have you already requested a second opinion at Mayo Clinic?
My husband has just been diagnosed with Chondrosarcoma. We have had two dr appointments, the second at UW Medicine was pretty frightening. We are planning to go to Mayo for another opinion. It is in the pelvis and hip socket so large removal of bone. The desicion of whether to go with replacement bone or none is a hard one to make. Any stories from others journeys would be much appreciated.