Different Cancers, Different Journeys: One Problem With Lack of Public's Education

A cancer survivor discusses a problem, even with good intentions, of the public's lack of cancer education.
PUBLISHED June 22, 2015
Barbara Tako is a breast cancer survivor (2010), melanoma survivor (2014) and author of Cancer Survivorship Coping Tools–We'll Get You Through This. She is a cancer coping advocate, speaker and published writer for television, radio and other venues across the country. She lives, survives, and thrives in Minnesota with her husband, children and dog. See more at www.cancersurvivorshipcopingtools.com,or www.clutterclearingchoices.com.
After I had cancer (breast cancer and melanoma), I wrote a book to help other cancer survivors. As a motivational speaker and a published writer, it was my way to turn bad events into something good to help fellow cancer patients. My book was based on my personal journaling and my research. I was not a doctor or a psychotherapist. I was and I currently am a cancer survivor who wants to help fellow cancer survivors and their loved ones.

It seemed that the doctors were there to treat the physical issues of cancer but that there was a shortage of resources to address the mental and emotional aspects of cancer — the uncertainty, worry and lingering side effects from treatment. I wrote the book I wished someone could have handed to me when I was first diagnosed with breast cancer. Now I am worried.

My breast cancer and my melanoma were stage 1. This means they were caught early with pretty good prognoses for long-term survival. I had surgeries, chemotherapy, radiation and hormone treatment. Of course, my fear is that one of the cancers could come back with a vengeance or a third cancer could appear. I also struggle with side effects from treatment. That said, even though the odds are pretty good, I could still find myself on the other side, the wrong side, of the probability equations with cancer, and having two cancers probably doesn’t help my overall cancer prognosis odds.

Learn and listen to help a cancer survivor in your life

Not all cancers have a good prognosis, and some patients with a poor prognosis have a good outcome and vice versa. Every day, people find themselves on the wrong side of the probability equation and are facing a higher likelihood of a poor outcome. This is a different set of circumstances that I have not yet experienced and I find myself poorly equipped to offer help. I wrote my book based on my own unique cancer experiences. I offered the mental and emotional tools that I had researched and learned and applied on my own cancer journeys.

As I start to speak publicly about my cancer journey at churches, hospitals, and for medical and other organizations, I am startled by the number of people coming up and wanting to buy my book for someone who is at the point of end-stage cancer. I try to talk them out of getting my book or I strongly urge them to read the book themselves first to be sure it would fit the person they intend to help.

An important suggestion to help a cancer survivor

Read the book, any book you buy, yourself before you hand it to your cancer survivor. I struggle with how I make my book available and known as a resource to people with cancer and yet not have it in the hands of people who are facing different issues and might not find the book helpful.

End-of-life cancer issues and struggles are very different from my own cancer experiences so far — the trials and studies, the long long-term active treatments and side effects, the issues — all are different. My book is geared for someone newly diagnosed, in active treatment or within a few years after active treatment — any of those scenarios that have a somewhat hopeful prognosis — a recognized likelihood of a possible good outcome.

I think part of the problem may be the lack of awareness of the general public about all the different kinds and degrees and grades and stages of cancer that exist. Do they know? Who is supposed to educate them?

I remember when I got my second cancer, melanoma, I knew right away to ask abou the specific type, stage, and grade of disease. Basal cell carcinoma and melanoma are not the same type of skin cancer, and also the stage of the cancer is a critical piece of the puzzle. These things all factor into treatment and prognosis.

How can we educate the public? People mean well in wanting to help people around them who face a cancer diagnosis, but unless we, as cancer patients and survivors, are willing to clarify what we have and what kind of prognosis and issues we are facing, I think it is hard for people around us to help. Ignorance can create a situation where someone could unintentionally do more harm than good.

I would like to hear your thoughts.
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