Diagnosed with sarcoma? Let's share

Helen, I have reached out to some friends in the area, and been told their treatment options included, Mt Sinai Sarcoma Unit, another suggested Dr Jay Wunder. Also been told the Woman's College has 2 MOHs surgeons.

For anyone looking for inspiration heading into or post surgery, watch the Ohio edition of American Ninja 2017. Participant Annika Nieshalla is a dfsp survivor who lost a large portion of the muscles in her upper arm to dfsp surgery, A gifted performer who also has her own web presence. Search Annika Nieshalla's dfsp sarcoma page to see some of her work around the gym and in Parkour centres.

Hello skyrage, and good to hear the unicorn reference! From one unicorn to another, hope your doing well and remain free of dfsp forever more. What region are you from?

Good that scans have been done, but be aware that scans pick up the central tumor but often don't show the fine infiltration lesions that extend out from the central mass. They do give your surgeon a good grasp of the size of excision and what reconstruction is required. The reason I have asked about the variant, is that there is one more aggressive variant that generally requires a more aggressive approach to surgery. Typical Margins in WLE are 2-3cms, but for fs-dfsp the recommendation is closer to 5 cms. I would certainly ask for a copy of the path report once completed. I also suggest a direct discussion about the follow up required post surgery. The type of variant will influence follow up reviews process as well.

I know of at least two or three others with dfsp treated in Toronto as well as a few more across the lakes to the south. Happy to pursue contact if you wish. Can facilitate details by private message if you want someone local to discuss with. I also know a number of dfsp'ers treated at Mayo. Dr Randall Roenigk has a short video on dfsp. An experienced surgeon with plenty of experience in dfsp from your children to adults.

@suzanneb I'm so glad that you entered into this conversation! Sharing your husband's story adds to a sense of optimism and hope that is available to us all dealing with rare types of cancer, but especially sarcoma. Finding the right hospital system and doing that which was not practical was very good for your family, congratulations on the good results! Teresa

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!

@kathythornjohnson, Good Monday Morning. Thank-you for sharing your words of encouragement and wisdom. I am visiting you from the Transplant discussion group, to say that your beautiful statement is a testimony of hope for all of us.
Blessings to you as you continue your health journey'
Rosemary

@kathythornjohnson What a wonderful reply to my asking you for some words of encouragement/advice to others dealing with sarcoma. You have covered many of the situations that we all encounter when we deal with a chronic illness, but especially those with sarcoma. Thanks so much! Teresa

What I've learned during the last 6 years:*The actuality of my situation is rarely as awful as my imagination.*There is always reason for hope. What you hope for may change but there is always hope.*Dont believe everything you read on the Internet about your prognosis. Often, what you read on the Internet is best case or worst-case. We are rarely best case or worst-case. *When your situation is hardest remember that you can get through the next 60 seconds. Break it down as much as you need to. *If you are working with Mayo Clinic, you have world renowned doctors who see Sarcoma daily in your corner. Make certain you are at a sarcoma center. A regular oncologist may only see one or two sarcomas in their career. *Don't ignore your mental health. Ask for help getting through treatment and the fear following treatment. There are options. 

Hi Carolyn @cvandyke, welcome to Connect. I'd like to introduce you to @diane060 who also has metastatic endometrial (uterine) carcinosarcoma. While it would appear that your diagnoses differ, I thought you'd like to meet each other.

@kathythornjohnson I'm so pleased that you have such a good support network, that does mean everything. As we all learn from each other on Mayo Connect, what sort of encouragement or advice would you offer others with this type of diagnosis? Teresa