When Donna Berich tells people that she has skin cancer, they sometimes say, “Skin cancer? Oh, everyone gets that.”
Well, not quite. Few people have skin cancer like Donna and others who have Basal Cell Carcinoma Nevus Syndrome (BCCNS).
It’s common to think of skin cancers as falling into one of two categories: Melanomas which are serious and potentially life-threatening, and the “other” skins cancers (basal cell and squamous cell) which generally are thought of as no big deal. The dermatologist takes them off and you don’t think about them again.
But Basal Cell Carcinoma Nevus Syndrome is a rare genetic disorder that predisposes a person to lots of basal cell cancers. In 2014, Donna had 16 skin cancers removed, some requiring extensive facial surgery.
She’s now receiving chemotherapy on a regular basis. It’s a new chemotherapy drug that specifically interrupts the biological process that causes her specific type of cancer. It’s working remarkably well. She sees her dermatologist every three months and still has frequent biopsies. But, for the first time in 20 years, those biopsies are coming back negative for cancer.
Chemotherapy isn’t usually given for basal cell skin cancer because the side effects of the chemo are generally worse than the threat of the skin cancer itself. But for Donna and others with BCCNS, the risk-benefit calculation is different. The basal cell cancers can be so extensive that they threaten one’s sight, hearing, appearance, and, well, life.
The chemo isn’t easy. Donna is losing her hair. She feels tired much of the time, has lots of spasms, and she’s losing her sense of taste.
Even the doctors aren’t sure how long she’ll need to be on the chemo. Possibly for the rest of her life. It’s such a new drug that long-term protocols aren’t yet established.
But what you immediately notice about Donna is her upbeat attitude. She radiates positive energy. She tells me, “You need a purpose every day. Chemo can’t take over your life.”
She knows people fighting for their lives. “The rest of us have life. We should live it.”
Donna’s experience also reminds us that we shouldn’t assume that we understand another person’s cancer. Basal cell skin cancer? It’s often not very serious. But sometimes it is. The same is true for other cancers such as thyroid cancer. Every person’s cancer situation is unique. We should never assume that we know what someone else is experiencing.
Reprinted with permission of the Ithaca Journal.
Original publication date: August 1, 2015
Bob Riter is the Executive Director of the Cancer Resource Center of the Finger Lakes. He can be reached at [email protected]
2 thoughts on “Don’t Assume You Understand”
Thank you for this wonderful insight into the lives of persons with Basal Cell Carcinoma Nevus Syndrome, aka Gorlin~Goltz Syndrome. We are unique because we are, and live with a condition which may impact every organ and system of the body. It may be a rare condition, but those who are brave survivors are courageous and can definitely benefit by more public awareness, and articles written by people insightful and compassionate. Thank you Bob Riter! High Fives!!
I agree with your sentiments that one should not make assumprious comparisons between cancers ,it can be detrrimental. Newton @KU School of medicine