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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.

ctflyr | @ctflyr | Feb 6 9:56am
In reply to @janiemae "My name is Janie. I am 71 years old, mother of 5, and 5 bonus children,..." + (show)
@janiemae

My name is Janie. I am 71 years old, mother of 5, and 5 bonus children, grandma to 7 girls and 5 boys, great grandma to 2 boys and 1 girl. I live in northern Minnesota with my husband, who was just diagnosed with undifferentiated pleomorphic sarcoma (UPS) last week. We had our first visit to Mayo in Rochester, MN on January 27th, for consult, CT of chest, and biopsies. Friday we have three more appointments with radiation oncology for consult, stimulation therapy, and MR of right humerus. There are so many unknowns in our life right now and it’s hard to process. I saw the words American Cancer Society and burst into tears. It seems like everything is so uncertain right now. How do you convert from wife to 24/7 caregiver to someone with cancer?

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Hi Janie....to answer your question, it's one day at a time. Processing your situation is too hard all at once, though that's how it hit you and your husband. Draw strength from loved ones...hopefully close by.. ..and the fact that your husband will receive great care from experienced medical professionals at Mayo. It will be a rollercoaster of emotions and stress. Please get help from your loved ones, rest when you can, and realize you can only take it one step, one day at a time. Wishing you and your husband well in your journey...❤️

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muenchen1945 | @muenchen1945 | Feb 6 3:44pm

I am reading all of your comments and I was diagnosed September 2023 with Angio Sarcoma and secondary liver cancer. At that time I was 78 years old and my world just collapsed. Went through 2 different kinds of chemo, the first one didn't work and the cancer was growing, the second almost killed me because of the side effects and I was ready to die. Now I am on Immunotherapy since late summer of 2024 and it does work. However, I also have Adrenal Glands Insufficiency and need meds to give me energy. As all of you know - Sarcomas can't be cured so we all live with the knowledge that we could die anytime - in September of this year it will be 2 years after the diagnosis and I am hoping I'll live a little longer. Once a month I go for infusion and hope for the best.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 4 days ago
In reply to @cassielee "In June 2024, my mom who is now 66yo was diagnosed with Dedifferentiated Liposarcoma (DDLPS). Within..." + (show)
@cassielee

In June 2024, my mom who is now 66yo was diagnosed with Dedifferentiated Liposarcoma (DDLPS). Within a month she underwent a very invasive surgery to remove the large tumour along with her right kidney, large chunk of her liver and part of her diaphragm.
Fast forward 6 months, feeling a bit winded and weak still she just had her first post op routine CT scan and it has metastasized to her lungs and is stage 3/3.
Shocked is an understatement as how quickly it grew back to a new area of her body. Awaiting to hear from medical oncologist for treatment options for this aggressive very very rare cancer.
Looking into second opinion mayo clinic if there’s a chance.

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@cassielee, I can only begin to imagine the shock. If you would like to inquire about a second opinion with Mayo experts, start here: http://mayocl.in/1mtmR63

What treatment options did her medical oncologist recommend?

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Moderator
Colleen Young, Connect Director | @colleenyoung | 2 days ago
In reply to @kevo02 "Hi, I'm about 10 months out of going through radiation treatment for Kaposi Sarcoma not related..." + (show)
@kevo02

Hi, I'm about 10 months out of going through radiation treatment for Kaposi Sarcoma not related to HIV or organ transplant. As I'm sure everyone here can agree the care, compassion and knowledge provided by Mayo Clinic is the best in the world! I was able to connect with Dr. Steven Robinson who is one of the few people who specializes in Kaposi Sarcoma. I'm aware that there is no cure and after treatment it could return in 2 months, 2 years or 20 years. I'm 43 years old and would like to connect with anyone who might be experiencing a situation with this cancer. Long shot I know because it's a rare one. Personally, I don't want to be this interesting haha. In conclusion I'm returning every 3 months to dermatology and oncology for monitoring. God bless everyone who is experiencing a similar situation and family and friends.

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Hey @kevo02, welcome. You might also wish to join this discussion:
- Kaposi’s Sarcoma: Just want to talk https://connect.mayoclinic.org/discussion/kaposis-sarcoma/

It's great that you are getting care with the very special specialists at Mayo Clinic, especially for a rare cancer. Do you have to travel far for your 3 month follow-up appointments? How did you do with radiation? Any lingering side effects?

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Moderator
Colleen Young, Connect Director | @colleenyoung | 2 days ago
In reply to @janiemae "My name is Janie. I am 71 years old, mother of 5, and 5 bonus children,..." + (show)
@janiemae

My name is Janie. I am 71 years old, mother of 5, and 5 bonus children, grandma to 7 girls and 5 boys, great grandma to 2 boys and 1 girl. I live in northern Minnesota with my husband, who was just diagnosed with undifferentiated pleomorphic sarcoma (UPS) last week. We had our first visit to Mayo in Rochester, MN on January 27th, for consult, CT of chest, and biopsies. Friday we have three more appointments with radiation oncology for consult, stimulation therapy, and MR of right humerus. There are so many unknowns in our life right now and it’s hard to process. I saw the words American Cancer Society and burst into tears. It seems like everything is so uncertain right now. How do you convert from wife to 24/7 caregiver to someone with cancer?

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@janiemae, such a good question "How do you convert from wife to 24/7 caregiver to someone with cancer?"

You might wish to repeat that question as a new topic in the Caregivers group here: https://connect.mayoclinic.org/group/caregivers/

While not the same cancer type, this older discussion gives some helpful tips:
- How can I be a supportive caregiver? HPV Squamous Cell Carcinoma https://connect.mayoclinic.org/discussion/diagnosis-and-discussions/

How are the appointments going? How are you holding up?

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