I follow many, many blogs and cancer-related online chat forums. One I saw today really stung. A woman asked if anyone taking Tamoxifen had ever experienced debilitating bilateral posterior leg pain and the inability to walk or sit without intense pain. She mentioned that she had done all the tests, MRIs, x-rays, etc. with no resulting explanation for her pain. She added that her doctor took her off the Tam and her symptoms subsided significantly. Another woman mentioned that issue plus a host of others, including a persistent and unexplained cough.
Well, I have been on Tam for four years, and three years ago I started experiencing intense pain while sitting, then found it very painful to walk. I saw one doc, told me pelvic misalignment was the issue, and after a few of his treatments, I got worse, I could only walk if I dragged one leg. So much for him. Saw another Doc, said it was two torn hamstring muscles, the left side being severe. I explained that this was unlikely as surely I would have known when this happened (something like a sudden sharp pain would be memorable). However, I was desperate to walk so I agreed to try his “treatment”, a painful and useless platelet procedure. No change. Saw another Doc, he viewed the same MRI results and said that it wasn’t a hamstring issue, it was a disc issue. He offered another painful procedure. This time I was not gullible and refused. He then suggested physical therapy. No change. Next I consulted an integrative chiropractor; he suggested misalignment and stress being the culprit. I will never know if he was right, but after a year of his treatments and the massage therapy he suggested, I am fine. Was it the Tam? Who knows, but I am starting to think so.
And then there’s the cough…..
In December 2010, I started coughing. Still coughing a few months later, I went to my Internist and since I felt otherwise fine, he suspected lung cancer. Thankfully the tests were negative, and he suggested it could be asthma and allergies. Okay, so that makes sense. I started to believe maybe he was right, and that perhaps my mother’s chronic cough could have been that too, undiagnosed. Now, I am not so sure…..was it, is it the Tam? I will have to take this up with my oncologists, but so far, NONE of my doctors suggested this could be the culprit. It’s well known that bone and joint pain can be common, but not the type of pain at issue here. I’d like to think that they are simply not aware of the connection as I happen to have much respect for my doctors…..at the moment.
Perhaps it is all coincidence. Perhaps not. However, one thing I do know is that before an oncologist so quickly orders Tam, AI’s or Chemo for that matter, more needs to be learned and side effects/symptoms taken seriously. I would hate to think that I spent thousands and thousands of dollars and endured years in pain dealing with problems that could have been eliminated by stopping the Tam. Are my symptoms a small price to pay for avoiding recurrence? Maybe, but again….quality of life doesn’t seem to concern most doctors….maybe it’s time they started teaching this in med school. One last note….did I mention that inflammation increases the risk for recurrence….humm….wonder how much of it I’m hosting in my chest, legs, and derriere. Prevention should not be part of the problem.
To read more the possible side effects of Tamoxifen, please view:
Elyn Jacobs is President of Elyn Jacobs Consulting, Inc. and a breast cancer survivor. She empowers women diagnosed with cancer to navigate the process of treatment and care, and she educates about how to prevent recurrence and new cancers. She is passionate about helping others get past their cancer and into a cancer-free life.
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