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Better Communication Needed about Chemo Side Effects

Posted 8/4/2016

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  Truer words were never spoken than: communication needs to be better about chemo side effects. Certainly, patients are told about the biggies, especially hair loss and nausea/vomiting. It is all the little, irritating, soul-crushing, depression-making side effects that don't get mentioned. I do appreciate that sometimes our doctors and nurses are trying to protect us and not have us completely dive under the covers for the duration. Do we really want to know about every little thing that probably won't happen, rarely happens, but might happen? I, at least, didn't want to know all those things, but there most certainly is a a better compromise position.

  For more than thirty years, I have been facilitating support groups for cancer patients I suspect that every single person who has ever come would agree that one of the biggest benefits is learning more about treatment side effects and realizing that you actually are not the only person in the universe who has (pick one or more): had nightmares, had your finger nails turn ugly yellow brown and then fall off, awaken in the middle of most nights with terrible muscle cramps in your legs, felt that your vision suddenly deteriorated, had sudden hearing loss, had nausea from breast cancer radiation, watched your hair thin from a drug that wasn't supposed to cause hair loss, had crazy food cravings or aversions, developed a taste (not the frequent metallic one) in your mouth that just made everything taste awful, etc. etc. etc.

  I appreciate that it is impossible to list every possible thing, and probably every possible thing could not be listed because every person is different and you may have a reaction that no one has ever had before. But there should be, must be a way to inform and then support patients so we don't think that we are crazy in addition to miserable. It is definitely not helpful to have your doctor or nurse say "I never heard of that before" and then find out, in your support group, that several others right there in the very same room have have the very same side effect.

  From  Clinical Oncology News comes this article:

Communication Needed About Chemo Side Effects

Atlanta—Cancer patients’ attitudes and emotions about treatment-related side effects differ from those
of oncologists, according to a Harris Poll of patients with metastatic breast cancer (MBC) and treating
“Both oncologists and patients said they thought that managing and discussing side effects were
‘important’ or ‘very important,’ but only 58% of patients said they discussed managing side effects at
their initial diagnosis,” said Robyn Bell Dickson, research director for the Harris Poll, presenting the
Undings at the 2016 annual meeting of the Hematology/Oncology Pharmacy Association (poster 24).
“In certain situations, oncologists say they are not discussing with patients that their disease is
incurable. That is the stat that is very surprising.”
The surveys administered to 252 oncologists and 359 patients were not identical but included parallel
questions modiUed for the respective populations. The Harris Poll conducted the survey on behalf of
Novartis during the summer of 2014. Oncologist data were weighted by sex, years in practice and
geography to match actual populations of licensed oncologists in the United States.

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