How do you, as a parent, deal with the anger? Son has sarcoma

Posted by bkayk @bkayk, Feb 19, 2024

My son was diagnosed with Ewing Sarcoma February of 2022 when he was 17. Had chemotherapy and surgery. Was doing great working out playing on college basketball team. Then December of 2022 he had a recurrence. Now doing proton radiation and oral chemotherapy.
I am just do angry! It’s not fair!

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

I just wanted to express my sincere feelings of support for anyone who is dealing with Sarcoma !!!

It's the worst cancer out there and is increasingly prevalent amongst young adults. Soft tissue Sarcoma can grow right back after it has been surgically removed, and can baffle Sarcoma Specialists !!!

I know, because my daughter who was 29 went to the ER on December 26th, 2024 and passed away from Sarcoma and its complications on March 6th, 2025 - 71 days and 2 invasive neurological surgeries between her shoulder blades to remove the Sarcoma tumors from the under side of her T2 vertebrae !!!

Sarcoma SUCKS !!!

God be with you all that are dealing with Sarcoma !!!

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Profile picture for elmarie @elmarie

My daughter, now 24, had a complete synovectomy in her left knee in Dec 2023. In March 2024, they had to do a knee replacement as the chondrosarcoma infiltrated her knee. She had 3 seedings around the knee in Sept and Nov 2024. She also had a Staph infection, which took months to beat. In January 2025, a CT scan showed it had metastasized to her lung. It was removed, and she also received a new prosthesis. She is having her next CT scan in early June. Her cancer is very aggressive; we do not get time to adjust! Chondrosarcoma doesn't respond to chemotherapy or radiation, it is "detect and destroy."
She manages her diagnosis as well as you can imagine. She took a sabbatical leave this year and will return to the University next year. As a family, we stand together, but it is VERY difficult. We haven't got an idea what is lying ahead. There is not much literature on the destruction path of Chondrosarcomas especially now that it has metastasized.

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@elmarie, being a young adult diagnosed with cancer can be lonely. There is a virtual support group for young people with cancer led by social workers at Mayo Clinic, Arizona. Your daughter is welcome to join. She doesn't have to be a Mayo patient.

They meet the first Thursday of every month. The next meeting is on June 5. See details here:
- Young Adult Cancer Support Group Meeting: Y.A. Me Too https://connect.mayoclinic.org/event/aya-adolescents-and-young-adults-support-group-meeting-y-a-me-too-1-5d5a2cb5/

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How are you coping @bkayk? And your son? My heart goes out to your family! Not knowing is another kind of death sentence. The fact that my daughter can't be a carefree young woman with unlimited dreams of her future is so unfair! Her father is a Neurosurgeon, and I am a pharmacist, and we can do NOTHING to cure her. My whole outlook on life changed. If people complain about nonsense, I want to hit them! Everything seems insignificant against my daughter's cancer. My priorities have drastically changed as well. Why couldn't it rather have happened to me? I had a normal knee replacement in 2022, and everything went smoothly. My knee is fantastic. Why!!!!

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Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @bkayk, I added your message to the Caregivers as well as the Cancer support groups so you can easily connect with other parents whose young adult children were diagnoses with sarcoma like @interruptedivc @amd123 @erasahai @jennifer0726 @madstrong @janezum @phuds01 and others.

I get the anger. It's just not right that life in adolescence and young adulthood gets brutally interrupted by cancer. Just. Not. Right. But you have a right to your emotions. Feel free to vent.

Has your son had to delay his semester in order to go back on treatment? Did he return home to be with you? Is the proton therapy facility close to home?

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My daughter, now 24, had a complete synovectomy in her left knee in Dec 2023. In March 2024, they had to do a knee replacement as the chondrosarcoma infiltrated her knee. She had 3 seedings around the knee in Sept and Nov 2024. She also had a Staph infection, which took months to beat. In January 2025, a CT scan showed it had metastasized to her lung. It was removed, and she also received a new prosthesis. She is having her next CT scan in early June. Her cancer is very aggressive; we do not get time to adjust! Chondrosarcoma doesn't respond to chemotherapy or radiation, it is "detect and destroy."
She manages her diagnosis as well as you can imagine. She took a sabbatical leave this year and will return to the University next year. As a family, we stand together, but it is VERY difficult. We haven't got an idea what is lying ahead. There is not much literature on the destruction path of Chondrosarcomas especially now that it has metastasized.

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I think that is a normal reaction to a scary diagnosis. Last year one on my older grandkids (a 20 something) was diagnosed with a malignant brain tumor. She was so angry and I couldn’t blame her.
It’s just that it makes it hard for us to know what to do or say. 😥

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Profile picture for nmd78 @nmd78

I found out about my adult child who was diagnosed Dec. 2024. Also played college basketball. It's a heart-wrenching gut punch. Not sure what to expect. I don't know what to say or do right now as I've been also caring for a parent right before I found out about the cancer and chemo treatments. Praying for you and your son. Stay informed as much as possible.

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Thanks for the hug. My wife, like you, had been helping to care for her parent (mother) before our son's diagnosis. So it's been very hard on her. I hope he was diagnosed at an earlier stage than our son.

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Also, same child at age 14 had non-malignant melanoma on back and upper arm that appeared as a black/purplish blister on arm and a raised mole on back with the dark eye in the center. The DR. scraped the arm in the office and removed it non-surgically, but the one on back was surgically removed. I have read now to that Sarcoma can appear on skin as brown, red or purplish lesions. Idk if they are in this case connected to this diagnosis, but I am very concerned about it possibly appearing on the skin that long ago and now as a tumor in the leg. Something has to be done to cure cancer. Prayers for you and your loved one.

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I found out about my adult child who was diagnosed Dec. 2024. Also played college basketball. It's a heart-wrenching gut punch. Not sure what to expect. I don't know what to say or do right now as I've been also caring for a parent right before I found out about the cancer and chemo treatments. Praying for you and your son. Stay informed as much as possible.

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I am so sorry and understand the unfairness. I am in my 70’s and one of my grandchildren was diagnosed with an uncommon (I was told) malignant brain tumor less than a year ago. Called an ependymoma. Highest grade malignant.
They had a surgery last spring to remove it. It’s a tumor that will stay in brain or spinal cord but can commonly recur..and it already did in less than a year. So second surgery. They have had radiation and that will be done again.

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Profile picture for oncejimmymac @oncejimmymac

The Dana Farber Cancer Institute. The Sarcoma Doctor there told our son and his wife that there was only a small chance of a cure, due to the tumors being inoperable, but they agreed to try. Either I took my wife up to watch our granddaughter for a week while he and his wife went for 5 days of treatment, or I took him for his onc day treatments. His doctors and nurses were very kind and at least gave him hope. Now we wait to see if the cancer is still stable 3 months after chemo ended. The most important thing for your family is that it appears to have been caught early, unlike our son, who was already stage 4 when he was diagnosed.

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That sure sounds very stressful for all of you, I'm sorry. That is good that they are giving you all hope that is so important. Many prayers for your son and your family

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