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Gary Spangler's avatar

Julia, what an important and valuable post! Beth’s journey illustrates the importance of self advocacy. 11 ya my wife exhibited signs of breast cancer in a follow up diagnostic mammogram. Her mother had died that same spring of bladder cancer, so she struggled to make sense of what to do. I was her advocate and immediately requested the results from the mammogram: lobular carcinoma in situ with atypical ductal hyperplasia. She was immediately referred to a thoracic surgeon! Without having seen a cancer specialist. When we met with the surgeon I immediately stated we’d not seen a cancer specialist so why were we here? As she stammered over her words I stated we were leaving.

Next, the cancer Dx specialist. We were seated in her office and when she entered a bit later she screamed at Beth, “You have cancer. You should have addressed this already. You’re gonna die!” Of course Beth was in tears. I asked if she could explain the difference between cancer markers and actual tumors? Blank stare. At that point I indicated we would be leaving, but asked, “Do you read the NYT?” “Yes, why?” was her reply. I asked if she had read the front page article summarizing the findings of the bi-annual meeting of cancer specialists from all over the US. Their conclusion was simply stated, “We over diagnose and over treat ‘cancer’ at an alarming rate.” Her arrogant reply was, “If it had been there I would have seen it!” I replied, “Look again.” Looking at Beth I said, “We’re leaving now.”

We found the doctor we were looking for nearly 200 miles away. At the first appointment we were greeted with a kind smile, he hugged Beth, then proceeded to say, “This is very early stage cancer so we’re in no hurry to take immediate action. We will work as a team and together determine the course of action that is best for you. I classify these biopsy results as an ‘indolent lesion’.” Beth opted for a bi-lateral mastectomy with harvesting of the sentinel node plus one upstream from it. I became her home health care support in every capacity, including seeing signs of infection after the reconstruction/implants. I took several photos and sent same to the reconstructive surgeon then immediately drove to see the doctor the same day. The implant was removed & replaced two days after the initial debreeding and restitching steps.

This instance of two Beths having the same message shows the importance of self advocacy. If that’s difficult for some instances, please find a strong willed advocate to enlist as an advocate by proxy. Question the “specialists” and seek at least one other doctor’s opinion. Find and develop a support network. Crying is a great release of tension and worry. Don’t feel reluctant!

Julia, sorry to have gone on so long. Knowledge is power. Thanks for your championing tough causes and leading by example.

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Lily Pond's avatar

I love Beth's medical self advocacy and believe we should all be like her. Ten years ago I fired 9 gynecologists who all suggested a hysterectomy for my gigantic fibroids. I listened to myself and insisted on keeping my uterus. Finally, after 5 years I found a stellar surgeon who did a wonderful job removing my fibroids and keeping my uterus. During those five years, I trained like a professional ballet dancer and ate the best diet for my body type. My recovery was swift and I came back strong. This was a lesson in trusting my own body's ability to heal while doing the work to facilitate the healing.

I appreciate your reminder for your readers to take responsibility for our own health!

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