Askin's Tumor is a rare type of cancer characterized by the development of tumors in bone or soft tissue.
Hi! I see an oncologist once a year to determine any necessary tests. I only had chemo for 6 months and no radiation so he has not required too much out of the ordinary. I am really strict about following all of the standard guidelines though (physicals, skin checks, etc.). My regular doctors all (obviously) know my history and react to any concerns immediately. I made it a point to find doctors like that, even my dentist! Hope things continue to go well for you!
I have some bone checks but not recently. I have to be careful about additional radiation exposure. These may be useful for you too: http://www.livestrong.org/Get-Help/Learn-About-Cancer/Cancer-Support-Topics/Practical-Effects-of-Cancer/Cancer-Survivorship-After-Treatment http://www.survivorshipguidelines.org/ I'm glad to 'meet' you and wish you continued health! Rachel
Yes, it would depend on that. Mine was at 16, in the pleural membrane/lung, so have had some heart and pulmonary function followup due to chemo and radiation damage. Have you had bone checks? I remember being told that future bone cancer could be a risk of the chemo, but haven't yet had any scans. I was fortunate and had no recurrences. Emergency surgery, followed by two years of chemo, radiation and more surgery. Any 'major' side-effects are still to come, but as I've crossed to the far side of 40, I'm on the lookout more than I've been before. Take good care of you!
Congrats on being 'clear' right now! As I'm sure it has been with you, it's definitely been a long, hard road for me. I'll keep you in my prayers. Feel free to check out my blog too: www.obsessedwithlife.com Rachel
First time, 5 years back, a large tumor in left thorax. Chemo, surgery and again chemo. 3 years ago, right long, multiple tumors, surgery and heavy radiation of both the longs. A couple months ago, both longs and 2 tumors in the left hip. Very intensive chemo and radiation in the hip. Last check up, no tumors found, hoping it will stay like this in the future. I live in Belgium, Europe. Treated in UZ Leuven
Interesting. Where was it and what kind of treatments did you have? Are you in the US?
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
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Askins diagnosis spring 1987. Two years: surgery, chemo, radiation, more surgery. Now a 34-year survivor.
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Created by klarr77 | Last updated 13 May 2012, 11:50 AM
Created by CoaxingMonkey | Last updated 2 Mar 2009, 02:57 AM
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