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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.

kenroy | @kenroy | 6 days ago

Give you call doctors warts, you won't regret it.He's the best Doctor I've ever had.He saved my life

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jkrause3 | @jkrause3 | 5 days ago
In reply to @xanthyhogg "@celia16 Thank you so much. Things have needed to move so quickly that we haven't had..." + (show)
@xanthyhogg

@celia16 Thank you so much. Things have needed to move so quickly that we haven't had a 2nd opinion. I was looking into the Mayo Clinic. Have you had any experience with the targeted Proton beam. I imagine, we don't have that technology here in Boise but I'll be asking. It's hard to watch your child suffer. It still feels like it should be us as his parents. This is my first experience with a support group. I'd welcome any suggestions on support or finding sarcoma experts. I do trust our doctors so far. That has been a surgery and meeting one pediatric oncologist. They have a whole team of pediatric oncologist.

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I just completed 25 Proton radiation treatments at Mayo Phoenix - very little adverse affects mine tumor is in my calf the size of a Soft Ball - the treatment themselves is painless and takes any minutes - the side effects for me were some fatigue usually about 1 day a week I felt like It just wanted to nap - during the treatments no adverse effects to my skin - but I am on week 2 after treatment and I have a mild sunburn which is am treating with Aloe Vera - I used a radiation burn cream all during treatments - the saying is you might be done with Radiation but it is not done with you so expect some issue after completion - The calf feels like an internal sunburn which I find ice helps - We have a pool and the temp is currently 70 degrees and standing in the cold water really helps
The care at MAYO is best of the best - you should check in with them there are places available to stay that are very low cost right at the hospital - the difference with MAYO is that I have a full cancer Board - A surgeon, radiologist, oncologist, plastic surgeon and a Physical therapist they consult constantly on my case to determine best treatment plan for my type of cancer no chemo was recommended as studies show it is not effective where Banner Health immediately told me to start Chemo
Hope this helps and best to you and your son

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kenroy | @kenroy | 5 days ago

I was diagnosed with dermatofibrosarcoma protuberans that was the final pathology report from Jennifer b gordetsky at the anatomic pathology laboratories

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xanthyhogg | @xanthyhogg | 5 days ago

Thank you! I will take this information and utilize it if needed. I appreciate your openness.

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kenroy | @kenroy | 5 days ago

Just to clear up my post several. Doctors at skyline said I'd bleed out because I'm on blood thinners.And the tumor was attached to my artery with blood vessels

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jeshaw6801 | @jeshaw6801 | 4 days ago

Anyone out there being treated with doxorubicin and Tribectedin for chemo for their LMS. I start next Thursday. I am wondering what food will work and what food to stay away from.
I am also looking for some success stories.

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xanthyhogg | @xanthyhogg | 3 days ago
In reply to @kenroy "I don't know if it helps or not. But Doctor Herbert Schwartz at the Vanderbilt clinic..." + (show)
@kenroy

I don't know if it helps or not. But Doctor Herbert Schwartz at the Vanderbilt clinic was the only Doctor out of about 20 at skyline hospital that sent me to Vanderbilt I had a 13.5 cm sarcoma. Tumor on my femoral artery. Several doctors at skyline said Id die on the table. He didn't hesitate.My wounds not completely healed and I'm still struggling I worked in the garden yesterday and paid for last night, but I'm doing a MRI in a cat scan next month every 3 months.the best doctor I have ever had .Im cancer free after 10 years

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We have just been told 24 straight weeks of chemo. We are waiting to hear back about the fox01 gene. If he is positive the chemotherapy regimen will be more aggressive, include hospital stays more frequently. My mom has had osteosarcoma for years and I had no idea about this particular gene. Let's hope it doesn't come back positive.

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chuckeg | @chuckeg | 2 days ago
In reply to @celia16 "I just saw your post. How are you doing? Good to see your care is excellent...." + (show)
@celia16

I just saw your post. How are you doing? Good to see your care is excellent. That means a lot. Sending you warm, well wishes!

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Thank you. Just finished radiation last week. Awaiting another CT scan next week. Had a creatine level checked today. Surgeon says I have an aneurism near the mass that might have to be dealt with before removing the LMS. Have had a meeting with our palliative care specialists, with some added pain relievers prescribed. With tylenol the Oxy and gabapentin give enough relief to be comfortable. Meeting with the surgeon on May 1.

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olgatsiagra1974 | @olgatsiagra1974 | 2 days ago
In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)
@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I'd like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

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Osteosarkoma

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