Looking back over my cancer experiences these 4 issues were the most important issues to me. Granted, being diagnosed at 34 is the top end of the Adolescent and Young Adult Cancer age range but I did begin my cancer journey as an AYA cancer patient.
How did I decide that fertility, the financial costs of cancer, physical/mental health and long-term/late stage side effects are the most important issue for AYA patients?
In short, these four issues incorporate the challenges that I faced and in the case of health and collateral damage, challenges that I continue to struggle with. By learning about these four challenges faced by all AYA cancer patients, you, the patient, will be in a position to address or hopefully prevent each challenge.
Two examples of what I mean by preventing a challenge of AYA cancer are:
Please don’t misunderstand me. There are other issues that AYA cancer patients face. There are mind/body challenges that all cancer patients must deal with that are especially difficult for AYA patients. Closely related to fertility issues are are the challenges that toxic therapy may present to young people. My self-image took a serious hit at the age of 35. Think how much your self-image may be damaged at the age of say, 18?
I would like to hear what issues you have found to be most important. Please join our Facebook closed group for AYA Cancer patients and survivors to ask questions and get feedback from other people going through the same things.
“I was originally diagnosed with multiple myeloma at 34 in 1994. My induction chemotherapy and autologous stem cell transplant failed so I was prescribed “palliative radiation” meaning local radiation that would eliminate the bone pain in my iliac crest.
I didn’t know it at the time but the radiation to my pelvic region would leave me sterile. I was single and had spent most of my adult life trying NOT to father a child. It never occurred to me, at 34 years of age, to even ask about my future ability to have children.
My radiation oncologist, Dr. Shina, recommended that I freeze some sperm just in case. Three years later, in early 98, my wife was inseminated and voila, Alex was born nine months later (9/25/98). Thank you Dr. Shina…
“Patients don’t know what they don’t know. Read all the articles you want but it is difficult to know what all the costs of AYA cancer will be until you receive the many “explanation of benefits” (E.O.B’s) in you mailbox. I didn’t understand the costs of my cancer care until after I had dug myself in a huge hole.
And you know what the scariest part of a cancer diagnosis is? Beside possibly dying. In my experience the greatest problem was the idea that I had what I thought was a solid health insurance plan. Not cadillac, my any means, but solid. I was wrong…”
“It shouldn’t be surprising that AYA cancer patients who undergo aggressive toxic chemotherapy and radiation develop health problems 10, 20 even 30 years down the road. I was diagnosed with multiple myeloma in early ’94, underwent chemotherapy and radiation and eventually an autologous stem cell transplant in 12/95 and I live with a series of long-term and late stage side effects today.
The real question is what can be done to prevent or manage these future health challenges. While I certainly don’t have all the answers I do have experience and insight into long-term and late stage side effects of Adolescent and Young Adult Cancer Survivors. I was diagnosed with an incurable blood cancer at the age of 34. Okay, I wasn’t as young as most AYA cancer patients but I’ve learned a lot since my diagnosis in 1994…”