• Waldenström Macroglobulinemia
  • Melanoma
  • Bladder Cancer
  • Brain Cancer
  • Breast Cancer
  • Childhood Cancers
  • Gastric Cancer
  • Gynecologic Cancer
  • Head & Neck Cancer
  • Immunotherapy
  • Kidney Cancer
  • Leukemia
  • Liver Cancer
  • Lung Cancer
  • Lymphoma Cancer
  • Mesothelioma
  • MPN
  • MDS
  • Myeloma
  • Prostate Cancer
  • Rare Cancers
  • Sarcoma
  • Skin Cancer
  • Testicular Cancer
  • Thyroid Cancer

Adopting an Orphan Disease


Surviving cancer is hard enough, but what about the rare and unusual versions?

I had no choice, of course, in choosing my particular form of cancer. Other than basic survival rates, having one type of cancer over another presents us with similar experiences and common challenges. Our primary mission is to endure and live an indeterminate number of years into the future. But having said that, it becomes imperative that we find the best resources and procedures to aid us in our quest.

Being diagnosed with a more prevalent category of cancer might be a plus in terms of the amount of research available, along with the number of oncologists familiar with the disease. When William Shakespeare wrote the words, “Sweets grown common lose their dear delight,” he was likely speaking of our familiarity with another human being in life and love. But in the world of cancer treatments, it is that close acquaintance with the disease that brings it out into the daylight; creating multiple possibilities to knock it down. The sheer numbers involved adds a wallop of possibilities when it comes down to understanding and treating our own version of cancer.

Breast cancer is a good example of the “exposure creates action” phenomenon. Women with breast cancer have a well-deserved pool of possibilities to face the disease head-on. There is even a month in each year fully dedicated to assisting women to survive, thrive and ultimately, to eradicating breast cancer once and for all.

Guys with breast cancer run a distant second. Our group is unified in spreading information, alerting men to check their breasts, urging physicians to openly talk to male patients about breast cancer and tirelessly supporting each other as the news that “men have breasts too” is ever-so-slowly shared globally.

But demographics don’t change overnight. You can’t rearrange the numbers to fit the imbalance. Far fewer men than women are diagnosed with breast cancer these days; men account for less than 1% of all breast cancer cases, and that ratio is unlikely to change any time soon. So, the dilemma here is that while we obviously want to see fewer men (and women, too) diagnosed with breast cancer, it’s the very smallness of our male group that creates the invisibility of our disease. It’s an interesting paradox to say the least.

It seems that there is still no agreement on how to treat men, although we now know that male bodies respond differently than those of women when the standard forms of treatment are prescribed.

There are numerous other forms of cancer that are classified as “orphan diseases,” but we all have one thing in common. We are hopeful that new discoveries with those cancers that receive the most exposure will trickle down for all of us who wait in line, hoping that these promising new treatments can be adopted to benefit one and all.


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