Diagnosed with sarcoma? Let's share

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!

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.

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?

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.

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.

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

@sarcomasurvivor

I am glad that you shared your story with Connect! How wonderful that you went to Mayo and received a refined diagnosis. I'm also glad to hear that you are following up on a regular basis. I find it difficult to believe when a doctor doesn't want to follow up with a cancer survivor.

Teresa