While doing research for a friend with very severe mucositis as a result of the chemo she is receiving for anal cancer, I found this article about a new treatment for these debilitating mouth sores : http://www.dailymail.co.uk/health/article-1246082/New-mouthwash-eases-discomfort-chemotherapy-preventing-treating-mouth-throat-ulcers.html

My friend had already been given some physician’s samples of this drug, which helped her immensely after none of the other “usual” remedies had any effect at all– but the drug itself is not what caught my attention in this article. Rather, it was this line:

Cancer doctors do not regard mucositis as a big problem, despite what their patients think.Oncologists treating colon cancer reported that only 15% of their patients suffered from mucositis,” says Dr. Stephen Sonis, professor of oral medicine at Harvard School of Dental Medicine. “But when asked about it, 70% of patients reported significant mouth or throat soreness.”... On a scale of one to ten, the pain it causes was rated on average at more than seven.

This is an alarming discrepancy! Worse yet, the lack of correlation between the patient’s side effects and their oncologist’s understanding of those side effects apparently extends way beyond the issue of mucositis, judging from John’s  experience with his oncologist and my friend’s with her oncologist.

During the course of John’s chemo treatments, I observed, over and over again, that when John described his side effects to his oncologist, the doctor seemed to listen carefully, yet he never appeared to make any notes in John’s chart. He seemed to have a list of side effects in which he was interested, or perhaps I should say more accurately that he asked about the same side effects over and over, with each visit. Bowel movements, appetite, activity level (none of which were ever issues for John)– these were his focus.

But when John described his increasing peripheral neuropathy, his persistent vertigo, or the pain in his gut that he described as “a war in my intestines”, this very experienced oncologist’s eyebrows would rise in surprise, as though he had never heard these particular complaints before. For the neuropathy, after hearing the same complaint for at 3 visits, he offered Gabapentin, a drug with marginal effectiveness whose most common side effect is vertigo (!!!) Regarding the vertigo and gut pain, he just shrugged, leaving us with the impression that these problems were unique to John and therefore not worthy of his attention.

We figured out through my research that vertigo is a known side effect of platinum-based chemotherapy, and I’ve discovered since John’s death that the gut pain is common among many colon cancer patients. That symptom, the gut pain, was particularly distressing to John, as his conclusion that it might signal rapid growth of tumors caused him much angst. Eventually, he was able to discuss this with his liver surgeon, and received a much more reassuring reaction. His surgeon listened very sympathetically, validated John’s concern, carefully palpated his entire abdomen, looked over all his labs, and concluded that the pain was most likely due to scar tissue from his multiple surgeries. He stated emphatically that he saw NO evidence whatsoever that John’s cancer was progressing.

That 10-minute conversation with his surgeon had such a profound effect upon John’s peace of mind– why could his oncologist not offer the same?? I concluded at the time that this was a peculiarity of this particular doctor. He had not seemed unkind, just very removed. Perhaps he was one of those doctors– and this must be far more common among oncologists– whose coping mechanism in the face of suffering is to insulate themselves from the pain of their patients. The unfortunate result is that although the doctor may feel protected from suffering himself, his patients’ suffering is actually increased because it is not addressed.

Interested in reading more about “oncologist-think”?  All that my husband and I learned on this cancer journey is now available in a much more accessible and easily searchable E-book format that can be read from a PC, Mac, Ipad, Ipod Touch, Blackberry or Android– available on Amazon: http://www.amazon.com/dp/B004T3331M

The book is titled Shedding Light on the Cancer Journey: Navigating the Colon Cancer Maze. 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.
This entry was posted in doctor patient communication, side effects of cancer treatments, Uncategorized and tagged , , , , . Bookmark the permalink.


  1. Charlotte Flavin says:

    I have finally taken the time to read this addition to your blog. Very enlightening; with good suggestions about to whom the patient or family can refer their questions if they feel that the oncologist, or other physician is not responding appropriately to their need for accurate information or effective treatment of their symptoms. I hope those who are presently in need will not have to endure the frustrations you experienced during John’s progressive illness.

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