As new chemotherapy drugs that work in novel ways come into increasingly common clinical use, it is beginning to appear as though some onerous and potentially life-threatening side effects may be occurring more frequently than original trials data might have predicted. Based solely on patient experiences reported on the Colon Club forum (, it seems to me that several cases of gastric perforation in patients taking Avastin in as many months disqualifies perforation as a “rare” side effect (which is how it is currently characterized on the label).  Likewise with the cutaneous vasculitis reported by two patients on Avastin in just the last 2 weeks– as far as I can tell, that is not even a listed side effect at all. Would these patients have reconsidered including Avastin in their regimen if they knew that these potential side effects were less rare than they had been led to believe? Did their oncologists even mention such side effects at all?

Some patients don’t concern themselves at all with side effects– they want everything available to fight “the beast”. “Damn the torpedoes– full speed ahead” kind of thinking. Others might prefer to weigh their choices, to compare risk versus reward and quality of  life versus quantity of life. Each person will decide differently, based on the unique circumstances of their own personal situation.

But shouldn’t we have the choice? John was twice victimized by two different oncologists with two completely different views on chemotherapy, who shared in common a paternalistic “doctor knows best” attitude towards their patients. Our first oncologist basically told John, on the occasion of his first appointment, “The only drug we have to offer you is called 5FU. It is so old that it has been in use for more than 30 years. It doesn’t really work very well. There are a couple of newer drugs (names not even mentioned) that have been approved in the last  couple of years, but they’re so toxic that you don’t even want to consider them. If it were me, I wouldn’t do any chemo at all– there’s no real gain, and it just ruins your quality of life.” At the time, we thought that this kind of talk was refreshingly honest. It certainly wasn’t what we expected to hear, but hey, it sure sounded like what John wanted to hear. Or what he thought he wanted to hear…

This chapter in Shedding Light on the Cancer Journey
looks at the following crucial considerations in a cancer patient’s decision-making process:

1. Risk versus reward analysis: what do I stand to gain and what price will I pay?

2. What constitutes “unacceptable toxicity”?

3. What do those obscure terms your oncologist uses so easily (i.e., “progression-free survival”) really mean in plain language? Sounds good on the surface, but a deeper understanding could have a profound effect on your treatment decisions.

4. Why taking an active role in your treatment is mandatory for the best possible outcome.

All this and much more on the endless decisions and confusions of a cancer patient’s life– what your doctor doesn’t tell you, what could  not (until the publication of this book)  be learned  without going through the experience yourself– is now available in E-book format at Amazon:

The E-book can be read on any computer,  Ipad, Ipod Touch, Blackberry or Android– the reader is completely free and quickly downloadable from Amazon.

All proceeds from the sale of this book will go towards the support of the 400 monks, nuns and yogis in the seven Tibetan monasteries of Tulku Orgyen Zangpo Rinpoche, who have devoted their lives towards building the foundation for peace and freedom from suffering for all beings in this world.


About surfingon

I live in Hawaii. I surf in the winter and swim in the summer. I have been a hospice volunteer with a contemplative-care oriented hospice for 25 years have been part of their team that trains new volunteers for the last 9 years. I have walked the colon cancer path with my beloved husband these past 5 years. He died very peacefully in April 2009. I now seek to share what we learned, to shed light on the many dark corners of this often mystifying, heartbreaking and heart-opening journey.
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  1. This entry blows me away because my mother has a friend, a lovely woman in her 80’s who has advanced terminal cancer and she is undergoing chemotherapy now. The chemotherapy is resulting in immense complications that are destroying what quality of life the woman had left. Plus she has a heart condition. It is the “Damn the torpedoes–full speed ahead” that you speak of that has overcome her and her family members. It is so, so unfortunate. Her final days could have been spent surrounded by the love and support of those dear to her. Instead, she is going through torture to get to the grave.

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