For those who are new to this blog, my second oldest son had a rare liver cancer -- Fibrolamellar Hepatocellular Carcinoma. It typically strikes young adolescents and adults between the ages of 15 and 35. It is so rare that there are approximately 35 cases diagnosed in the U.S. annually with about 200 cases worldwide. If you are interested in learning more about this type of cancer, I've provided a link from the FCF (Fribrolamellar Cancer Foundation).
http://www.fibrofoundation.org/understanding-fibrolamellar/what-is-fibrolamellar/
Adolescent and young adult (AYA's) cancers are rare. I've seen statistics that indicate as a population, they account for about 10% of the cancer population or about 70,000 a year. As a patient group, they typically fall between the cracks of our health care system. If a cancer patient is under the age of 18, they can be treated at many of the specialized cancer departments for childhood cancers. As an adolescent and young adult, you're grouped in with the older crowd: folks that are in their 50's and older.
AYA cancers are often detected later because physicians are less likely to look for cancer. Additionally, lack of health insurance plays a role in getting a diagnosis and in treatment.
Fibrolamellar is so rare that Cancer Centers don't know how to treat this type of cancer. When it comes to treatment, you have to go to a large Cancer on one of the coasts. Locally, there is nothing in a small community. It is likely that a Cancer Center would never have heard of this type of cancer.
When Matt received his diagnosis, I remember the Cancer Center in La Crosse, WI, director saying, "I'm sorry your son has Fibrolamellar cancer. And, we can't treat it here. You will have to go somewhere else." Okay. Now what? No direction. No compassion.
This unfortunately happens to a great many young adults not to mention Fibrolamellars. They are faced with a life threatening disease in a health care system set up for treating the majors: breast, prostate, colon, lung and brain cancers.
The disease occurs in young adults who are looking ahead..... to careers, to family, to more independence. Instead many must leave their independence behind and move back in my mom and dad, leave behind college and/or careers. Some lose friends or boy/girl friends who can't deal with this kind of illness. They face an uncertain future and lose many of their dreams.
As parents and caregivers, we walk a fine line with our young adults. Many have led independent
lives as adults. Now our son/daughter comes home and we have to carve out new relationships with them as we deal with their life threatening illness.
Unfortunately, Fibrolamellar is always fatal. No known living survivors. His dad and I knew it when he was diagnosed. Matt refused to accept that he could not beat this type of cancer. He fought this cancer till the end.
In my opinion, it was the chemo that killed him. But, this subject is for another blog..... when I'm
ready.
No comments:
Post a Comment