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.

capricorne1 | @capricorne1 | Oct 18, 2018

You are very stron Leslie
Enjoyed your friends they’re very precious.
Share with them.
Take Care.
Carpe Diem
God Bless.

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1 reply
ld57feast | @ld57feast | Oct 18, 2018
In reply to @capricorne1 "You are very stron Leslie Enjoyed your friends they’re very precious. Share with them. Take Care...." + (show)
@capricorne1

You are very stron Leslie
Enjoyed your friends they’re very precious.
Share with them.
Take Care.
Carpe Diem
God Bless.

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Thank you so much!!❤️👼 Yes, keeping them all close. Appreciate the positive feedback!!!!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 18, 2018
In reply to @ld57feast "Hi my name is Leslie. I was diagnosed with stage 4 chrondo Sarcoma. Chemo and radiation..." + (show)
@ld57feast

Hi my name is Leslie. I was diagnosed with stage 4 chrondo Sarcoma. Chemo and radiation have no effect. First I had my RT femur removed and was stage 3 than in 4 months it metatsised into my lungs. I had tumor removal on my left lung, at which I was stage four and they said no more surgeries and I had 6-8 months. I traveled and now I am chair bound. I am on liquid oxygen and concentrated. Running between 16-24 lbs. My spirits are high and I have made it to14 months. Still eating and having visitors. God Bless each day.

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Welcome to Connect, @ld57feast. Like @capricorne1 said, you are very strong. And fortunate to be surrounded by people who come to visit. I thought you might also be interested in this discussion in the Cancer group where people living with stage 4 cancer talk about all sorts of things openly and honestly - humor included. Everyone has a different cancer. Metastatic is the commonality.

- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

@ld57feast, do you live on your own or with family?

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1 reply
boston2006 | @boston2006 | Oct 19, 2018
In reply to @truk182 "Hello, I was diagnosed with low-grade myofibroblastic sarcoma on my tongue in July 2015. Other than..." + (show)
@truk182

Hello,
I was diagnosed with low-grade myofibroblastic sarcoma on my tongue in July 2015. Other than trying an occasional cigarette or chew in my younger days, I wouldn't be considered a smoker of any degree. A considerable portion ( I don't know the exact percentage but to me, it was/is considerable amount) of my tongue was removed on July 30, 2015. My wife, a dental hygienist, tells me quite often that I am a lucky guy. It was removed by surgery, no chemo, no radiation. She has made me aware of the "could have" scenarios. Spots were also found on my lungs and I had lung surgery in August, 2015. The spots were non-cancerous. In the meantime, I had started my new job of high school principal on August 1, 2015 after teaching Spanish for almost 20 years. I spent two years as principal and this fall I'm going back to teaching Spanish.

My followup visits with my surgeon and MRI's have all been good. My physical state is fine. I still struggle with my speech. People tell me they can't notice it but I can. They are too nice to say anything, in my opinion.

It's been a rough two years. I struggle daily with my speech and how I sound versus what people tell me they hear. Not sure if this what this group is for but there it is. Thanks for giving me an opportunity to share my story.

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@truk182- my daughter had myofibroblastic sarcoma-high grade. I’ve never heard of another person with this type of sarcoma. Her tumor was located in her leg, so she had an above knee amputation at Mayo about 12 years ago. She’s been thriving ever since. Hope you’re doing well & still teaching!

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ld57feast | @ld57feast | Oct 19, 2018
In reply to @colleenyoung "Welcome to Connect, @ld57feast. Like @capricorne1 said, you are very strong. And fortunate to be surrounded..." + (show)
@colleenyoung

Welcome to Connect, @ld57feast. Like @capricorne1 said, you are very strong. And fortunate to be surrounded by people who come to visit. I thought you might also be interested in this discussion in the Cancer group where people living with stage 4 cancer talk about all sorts of things openly and honestly - humor included. Everyone has a different cancer. Metastatic is the commonality.

- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

@ld57feast, do you live on your own or with family?

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I live with my husband, 2 cats and 2 dogs. Had 2 walking horses. But had to sell one last year and donated other one to medicine horse for handicap, autism kids and adults.
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1 reply
ld57feast | @ld57feast | Oct 19, 2018
In reply to @ld57feast "I live with my husband, 2 cats and 2 dogs. Had 2 walking horses. But had..." + (show)
@ld57feast

I live with my husband, 2 cats and 2 dogs. Had 2 walking horses. But had to sell one last year and donated other one to medicine horse for handicap, autism kids and adults.

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This is Tessa after her morning visit and massage. She loves her morning and evening visits on my lap. I love them too.

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ld57feast | @ld57feast | Oct 20, 2018

Today is a great. Breathing well, feeling the good feeling of living today to the fullest, joyful, faithful , hopeful day. I have found one day at a time only. Yesterday was trying. Hard to breathe and my heart rate kept hitting 160-200.
Which can make getting to a porta potty a huge challenge. Still am hungry so French Toast, scramble eggs and bacon. When you feel defeated is when you have the most strength to fight. I hope this will uplift a few of you. Because yesterday a few of you made it possible to be positive today. Thanks

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erikahamilton | @erikahamilton | Dec 30, 2018
In reply to @suzanneb "I hope it's ok for me to post- my husband had a sarcoma and I was..." + (show)
@suzanneb

I hope it's ok for me to post- my husband had a sarcoma and I was his caregiver. He was diagnosed at age 39 in 2009 with a stage 3 "Ewings-like" sarcoma on his left leg near his knee & luckily with no bony involvement.
It took longer than usual for diagnosis since it wasn't exactly Ewings. I think they explained that it had slightly different DNA.
Finally they decided to say Ewings 'like' and treat it as such.
We lived in Dallas at the time and saw 3 Dr's. We decided to go to Mayo (Rochester) for another opinion. We were most comfortable with the doctors and approaches there. The most important part was surgery to get clear margins. Several doctor friends gave advice that since this is such a rare cancer, he needs to find a top surgeon who has had many, many experiences with treating sarcomas.
His team made the plan for him to do several rounds of chemo (he was considered young in cancer years so he had a rigorous pediatric regimen), 5 weeks of radiation, surgery to remove the tumor, followed with several more rounds of chemo which was 10 months total treatment.
His oncologist was fantastic. He worked closely with our oncologist in Dallas so we could stay at home for treatment. We lived in Rochester for 5 weeks with our 2 daughters during radiation, followed by the surgery.
He finished with 6 rounds of chemo at home and finished in May 2010. We have always come back for check ups so his doctors could use their equipment, radiologists, and have their eyes on him. Not super practical to go back and forth, but cancer isn't very practical! 😉 I hope that helps!

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Thank you so much for sharing! I was diagnosed in Dec 2018 (at age 38) with Ewings type sarcoma in my right upper leg. Did chemo, surgery (with clear margins), more chemo, and 6 weeks of radiation (in Rochester). I'm just 3 months our from my last chemo, and it's really encouraging to hear about someone who has struggled with the same things as me, and is doing ok! Thank you!

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viviand | @viviand | Feb 28, 2019

I discovered a small lump on my back around my shoulder blade last spring. I was diagnosed with small cell sarcoma and had surgeries to get clean margins and reconstruction from April-July 2018. I also had chemotherapy from Aug-Dec 2018, because scans revealed nodules in my lungs. Chemo reduced most of them, but one has enlarged since my last infusion. I am scheduled for radiation in a few weeks. My sarcoma is very rare, although may be similar to Ewing’s. Love to hear if anyone wants to share.

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1 reply
kristennursepatient | @kristennursepatient | Feb 28, 2019
In reply to @kristennursepatient "Hi, I'm Kristen, 36, I was diagnosed with Ewing's sarcoma November 2017. My tumor had pressed..." + (show)
@kristennursepatient

Hi, I'm Kristen, 36, I was diagnosed with Ewing's sarcoma November 2017. My tumor had pressed against one of my ureters blocking the drainage from my kidney (causing pain similar to a kidney stone) and was very small when it was found. I've been through 7 rounds of chemo and have had surgery to remove the portion of the ureter that had the tumor. The tumor was unable to be seen on CT after just the 3rd round of chemo,, so things are going well. I'm being treated by the sarcoma group at Mayo in Rochester, MN. Each of my chemos requires a hospital stay of 3-6days which is hard on this mom of 4 (ages 11-20).

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I made it through and am now getting back to work. Last week was my first full week of work, it was exhausting but good to be back.

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