Sarcoma Survivor: Rebecca Greenway
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- Опубликовано: 23 авг 2024
- Rebecca Greenway, who was diagnosed with sarcoma at age 17, found an extended family in the doctors and nurses at Seattle Cancer Care Alliance.
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Me: September 9,1981 - went in for a tonsillectomy, came out with metastatic rhabdomyosarcoma of the nasopharynx. 3 months of intense chemo, concurrent with 6 - 8 weeks of radiation, then 2 years of maintenance chemo. Lots of treatment-related health issues, but so grateful to still be here.
Your grey hairs are lucky to have you. Good luck on your journey.
These infomercials for cancer centers appear to want to hide the details. When my wife was diagnosed with synovial sarcoma in her foot and ankle, the Seattle Cancer Care Alliance was difficult to get information from. I finally was told they see a couple new cases a month of synovial sarcoma.
I found 2 doctors in San Francisco (UCSF) and 1 in Berkeley who see far more cases of synovial and osteo sarcoma than Seattle. My wife had her tumor removed by Dr Rakesh Donthineni in Berkeley and has been clear for 21 months with no chemo or radiation.
Radiation was recommended but was a risk to the reconstructed skin flap for 3 months so it was never done. The surgery was at UC Davis because they have a better reconstructive surgery department than Berkeley.
I know it's been years,but it's hard to find info on these sarcoma cancers. I have leiomyosarcoma in my left ankle. Chose limb sparing surgery instead of amputation. I know this type of cancer is very resistant to radiation and chemo. Tho I have just finished radiation an it was horrible. I am in bed now with third degree radiation burns. Wishing they would just remove it anyway. My ankle looks like its been in a fire. Got to get over this,and see surgeon next month. How bad was your wife's pain,and did the cancer stay away? I really need encouragement cause I have watched two people's videos of their journey an it was a terrible journey to go thru,sick from all the treatments an in hospital or Dr office the whole time. Cancer just keeps spreading to organs. Non anywhere else in my body from the pet scan I had,but theirs were clean to. Then after 3 or 6 months when another scan was due,there the tumors were,usually in lungs spreading everywhere. So the big battle to live begins. Only to live those one or two years very sick from treatments. I can't see going thru it. Would prefer to live each day until I need hospice, then ask that it don't be dragged out.
@@PatriciaAShelton-no6cq My wife's tumor regrew and became symptomatic at 23 months post surgery, but her local ortho-oncologist misdiagnosed it until she was 30 months post op and 6 months after complaining of discomfort in her foot. Dr Mensner at St Luke's in Boise Idaho is a malpracticing jerk. Her option was another tumor resection or amputation. Amputation was a suggested option 2 year prior. She did not want to hear the A word. I knew what amputation entailed so I had a talk with her. We attended an amputee support group picnic a few days later and she chose amputation. I researched amputation surgeons and we found an amazing surgeon in Dr Christopher Hirose at St Als. Amputation went well and she was walking in her prosthetic leg in about 3 1/2 months. She is almost 6 years post amputation and knows she made the right decision. She drives with her left foot and has minimal limitations. Her routine scan found a 9 mm tumor in her right lung in October 2022. PET showed her body to be clear except for this tumor that appeared to be slow growing. It had slow sugar uptake. She had a partial right lung lobe resection with the Davinci Robot. Pathology showed it was synovial sarcoma. She was out of the hospital in 46 hours. Both of her prior tumors had grown to 4.5 cm long. Metastasis rates jump at 5 cm or larger. She had been clear ever since. She is approaching 10 years since the tumor first appeared.
She has never had chemo or radiation. The Robot lung resection was uncomfortable but not a serious challenge. UC Davis, UC San Francisco, Huntsman in Salt Lake, MD Anderson in Dallas, Johns-Hopkins, and a few other have clinics that treat a lot of sarcomas. I would not trust a doctor that does not see multiple cases a month.
Diagnosed on 4/24/18 liposarcoma. Low grade mixoid sarcoma. Surgery on 5/10.
Are you well now? Same thing I was diagnosed days ago
Please someone could help ""Sebastian needs help"" he's in in Argentina in the burocratic help sistem is way to slow and he needs desperate help could someone doctor help him???
I want to take A treatment of cancer in stage 4 . Please give me any suggestions
I wish I knew how to help.
I love my gray hair too
Hii
I've meet people who have Sarcoma who are in wheelchairs...Why ain't she in one?
Was my option. I chose limb sparing surgery. Just finished radiation and have third degree radiation burns to my ankle and foot. The pain is excruciating. In bed now,pain not as bad after a week. But a week ago I wouldn't cared if they would take it off,it was just that bad. If surgery to remove the tumor and the reconstruction of my ankle and heel is worse than the third degree burn,I want to be in a drug induced coma for a while.