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Askin's Tumor

What is Askin's Tumor?

Askin's Tumor is a rare type of cancer characterized by the development of tumors in bone or soft tissue.

 

Askin's Tumor is a rare type of cancer characterized by the development of tumors in bone or soft tissue.
Acknowledgement of Askin's Tumor has not been added yet.
Synonyms for Askin's Tumor has not been added yet.
Unknown
Pain Swelling
Diagnosis of Askin's Tumor has not been added yet.
Diagnostic tests of Askin's Tumor has not been added yet
Surgery, Chemotherapy, Radiation, Autologous stem cell transplant
Prognosis of Askin's Tumor has not been added yet.
Tips or Suggestions of Askin's Tumor has not been added yet.
References of Askin's Tumor has not been added yet.
Follow-up regimens? Created by klarr77
Last updated 13 May 2012, 11:50 AM

Posted by brown505
13 May 2012, 11:50 AM

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!

Posted by obsessedwithlife
13 May 2012, 07:48 AM

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

Posted by klarr77
13 May 2012, 05:17 AM

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!

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Askin Tumor Created by CoaxingMonkey
Last updated 2 Mar 2009, 02:57 AM

Posted by obsessedwithlife
2 Mar 2009, 02:57 AM

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

Posted by CoaxingMonkey
2 Mar 2009, 02:44 AM

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

Posted by obsessedwithlife
28 Feb 2009, 04:33 PM

Interesting. Where was it and what kind of treatments did you have? Are you in the US?

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Clinical Trials


Cords registry

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.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

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.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

obsessedwithlife

3-time young adult Askin's Tumor survivor. Was diagnosed at 15 with an egg-sized tumor around my spinal cord-had emergency surgery, chemotherapy for a year and radiation. Relapsed a year later with the cancer in my bone marrow-had 6 rough months of chemotherapy followed by an autologous stem cell transplant which came with many life-threatening side effects. A year and a half after that, I relapsed again with a tumor between my heart, lung and spine (a new Askin's Tumor). I did not have any treatment options and was given weeks to live. Through a medical miracle, the tumor grew some-but not as aggressively as normal-and did not invade my organs. It stayed stable until May of 2004, when it was safely removed. I have had no evidence of the disease since but still deal with many long-term side effects such as fatigue, chronic pain, etc.

 

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Follow-up regimens?

Created by klarr77 | Last updated 13 May 2012, 11:50 AM

Askin Tumor

Created by CoaxingMonkey | Last updated 2 Mar 2009, 02:57 AM


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