Rare Pediatric Cancer Support
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Rare Cancer Differences

In many ways rare cancers are the same as their counterparts.  An example would be breast cancer.  For many years all breast cancers were reported and tracked as one common disease.  General statistics are still quoted in that manner.  Medical and pathology knowledge has improved considerably, since medical professionals started reporting statistical data.  That has allowed pathologists to microscopically see all the variations of breast cancer and start reporting them as separate entities.  Some of these variations are rare statistically.  Hence the term Rare Cancer.  Some of these rare breast cancers include cystosarcoma phylloides (CSP), mucinous carcinoma of the breast, adenoid cystic carcinoma of the breast, Paget's disease, etc..  At one time, practitioners believed in the one size fits all philosophy of cancer treatments.  Hopefully that practice has ended for most professionals.  Many of these cancers need to be treated more aggressively or less aggressively, depending on the variant.

Rare cancers are different in another, less obvious, way.  They are not necessarily financially lucrative for researchers and pharmaceutical companies.  All cancer researchers must have some type of financial support for their specialized research.  For common cancers this support is readily available.  But for rare cancers, there is no universal fund to finance research.  Larger organizations that collect donations for cancer research, do not funnel any of those funds to researched focused toward a particular rare cancer.  As one of my doctors honestly told me one time, we have to spend our time and our money where we can do the most amount of good, therefore we spend neither on rare cancers.  Some independent organizations and researchers have been able to find financial support and donations to fund research projects for specific rare cancers.  And some institutions are known for their knowledge and treatment of rare cancers.  Sadly, this is the exception, not the rule.  This means that many treatments that are being used for rare cancers were actually developed for general cancers.  They may not work as well for the rare cancer variant, but practitioners have no other choice but to try them since they may not be aware of any other alternative.

And lastly in the arena of support.  Many face-to-face support groups are for more generalized cancers.  They may not be able to answer your specific rare cancer questions or concerns.  Of course, it is always a comfort to have a person with cancer to help support you emotionally, but you may not feel totally understood by others with common cancers.

So, to answer that question, is my cancer different; the answer is absolutely.  It means that you may have to spend time doing individualized research.  You may have to assertively educate your doctor with that research.  You may elect to spend extra time finding support  if you would like to talk to someone with your specific cancer.  You may even choose to put a great deal of effort into fundraising for focused research for your cancer.  Generally it means that just when your body and emotions are in disarray, you and your loved ones will have to muster up the energy and courage to do a number of things that you never envisioned doing.