1. < Sarcoma
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Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

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?

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

spadafarm | @spadafarm | Mar 16, 2022
In reply to @colleenyoung "Welcome @spadafarm. I can only imagine that the new diagnosis of Chondrosarcoma is frightening for both..." + (show)
@colleenyoung

Welcome @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?

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We have and are setting that up.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 17, 2022
In reply to @vivianfromaz "I was diagnosed in 2018 in Michigan with a mass on my back near my right..." + (show)
@vivianfromaz

I 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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Oh 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.

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Dlady | @damlady2 | Mar 17, 2022
In reply to @colleenyoung "Oh gosh, @vivianfromaz, I sincerely hope you don't have Valley Fever or that it is easily..." + (show)
@colleenyoung

Oh 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.

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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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caragiver1 | @caragiver1 | Apr 19, 2022
In reply to @colleenyoung "From the National Cancer Institute: sarcomatoid carcinoma https://www.cancer.gov/publications/dictionaries/cancer-terms/def/sarcomatoid-carcinoma "is a type of cancer that looks like..." + (show)
@colleenyoung

From the National Cancer Institute:
sarcomatoid carcinoma https://www.cancer.gov/publications/dictionaries/cancer-terms/def/sarcomatoid-carcinoma
"is a type of cancer that looks like a mixture of carcinoma (cancer that begins in the skin or in tissues that line or cover internal organs in the body) and sarcoma (cancer of the bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue). The sarcoma-like cells are often spindle cells. Under a microscope, spindle cells look long and slender."

Biceto, sarcomatoid carcinoma may appear in different parts of the body. Do you know what type of sarcomatoid carcinoma your friend has? Lung, larynx?

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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

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marymaurer | @marymaurer | Apr 23, 2022

Husband has just been diagnosed with soft tissue sarcoma

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 23, 2022
In reply to @marymaurer "Husband has just been diagnosed with soft tissue sarcoma" + (show)
@marymaurer

Husband has just been diagnosed with soft tissue sarcoma

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Hi Mary, oh, I’m sorry to hear about this new diagnosis. How was your husband’s cancer discovered? What treatment plan has been suggested?

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marymaurer | @marymaurer | Apr 23, 2022
In reply to @colleenyoung "Hi Mary, oh, I’m sorry to hear about this new diagnosis. How was your husband’s cancer..." + (show)
@colleenyoung

Hi Mary, oh, I’m sorry to hear about this new diagnosis. How was your husband’s cancer discovered? What treatment plan has been suggested?

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Biopsy results just came back. Scheduled to meet with surgeon on Tuesday. Will update. Thanks

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Dlady | @damlady2 | Jun 5, 2022
In reply to @damlady2 "I have Lipo sarcomas in chest/ shoulder area. I have had 8 surgeries, 3 cryoblations and..." + (show)
@damlady2

I 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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Update. I will be scheduled soon for a Four Quarter amputation of my right shoulder/arm. This will be at Mayo Rochester. I am most concerned about after surgery adapting to my new reality. Rehab Dr said I can do everything I did before. I do not understand this as I assume I will be on pain killers and not be able to drive, walk up stairs without assistance or many other tasks. I live alone in a remote area am not near a PT climic or hospital. Are my worries not founded? I am will to go into a transitional rehab facility.

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vivianfromaz | @vivianfromaz | Jun 6, 2022

I can only offer you my prayers for light and love. One day, one minute at a time. Breathe. It ain't going to be easy but it beats the alternative! I'm telling you what I tell myself. -- stage 4 cancer warrior 4 years in. No, I've never faced an amputation. But three surgeries seven different chemo drugs and four radiations. Hang in there!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 21, 2022
In reply to @damlady2 "Update. I will be scheduled soon for a Four Quarter amputation of my right shoulder/arm. This..." + (show)
@damlady2

Update. I will be scheduled soon for a Four Quarter amputation of my right shoulder/arm. This will be at Mayo Rochester. I am most concerned about after surgery adapting to my new reality. Rehab Dr said I can do everything I did before. I do not understand this as I assume I will be on pain killers and not be able to drive, walk up stairs without assistance or many other tasks. I live alone in a remote area am not near a PT climic or hospital. Are my worries not founded? I am will to go into a transitional rehab facility.

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Hi Dlady, I can imagine that you're thinking about adapting to your "new normal" after the forequarter amputation of your right shoulder.

It seems to me that you and your rehab doctor may be talking about different stages of recovery. I agree that the days and possibly weeks after surgery, you will be limited in your activities and may require varying amounts of pain management. Since you live alone, I think it is wise of you to inquire about transitional rehab at a facility.

Would you be able to remain in Rochester to stay at rehab there?

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