Why You and I Need Advocates for Our Health- We're Too Old To Think All Doctors are God
Too Old for This Sh*t: How to Take Your Life Back from an Ageist Society
A reader shares a harrowing story about what it takes to advocate for someone you love
reads my material regularly. Every so often he also drops a comment that makes me think hard. This was one of them. He was responding to an article which highlighted ’s breast cancer journey. I have permission to re-post this. Lightly edited for clarity.Gary writes:
Eleven years ago 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 promptly 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, we saw the cancer Dx specialist. We were seated in her office. 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 New York Times?”
“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 them to the reconstructive surgeon. Then I immediately drove to see the doctor the same day. The implant was removed and replaced two days after the initial debriding and restitching steps.
This instance of two Beths having the same message (of dangerous doctors and bad medicine) 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! (author bolded)
***
Heartfelt thanks to Gary for this story. Those of us who are aging alone, this is a stark reminder that we’re responsible for our health care advocacy. When it comes time, and it will, we need a power of attorney and someone who will fight for what we say we want, most particularly when it comes to the issue of the right to die on our terms.
I was privy to the very difficult journey of a friend’s mother whose will was VERY clear. The friend had to fight the care facility tooth and nail. They were getting eight grand a month to keep her alive. Those bloodsuckers were willing to go to court to bankrupt my friend’s family and take every single last penny just to keep the mother on life support.
It was a horrible story and an indication of what our medical community has come to: profit, at all costs.
I have a PofA. I have a will establishing what I want done if I am beyond help. Even then there is no guarantee. Increasingly we have to be our own best doctors- and as Gary shows above, you don’t have to have a medical degree to gain a crisp understanding of the issues and be able to advocate.
Don’t get caught flat-footed. Your health and life may depend on it.
Let’s take care of our futures so that we can play.
These are tough issues but we must face them. Having the courage to plan now for the inevitable is challenging, but not as challenging as full denial. I wouldn’t have any of us land in our eighties and in terrible need without any kind of a plan. Be brave. Do the work now.
If this was helpful please consider supporting my work.
If you know someone who can benefit from this article please consider
That’s a harrowing story. The entire thing is based on selfish and self-centered doctors who don’t even see other people as human beings.
I went with my mother to see a knee specialist almost a decade ago. I went because the guy kept putting off her surgery, and I wanted to know why.
I almost had to carry mom in. She couldn’t push her walker the pain was so bad.
We get in there and the condescending jerk basically told her there was no point doing the surgery because she was old and didn’t need it for very long.
I don’t remember what exactly I said, but I spoke for about 5 minutes straight in a calm but angry voice until the guy was almost in tears and felt like the guilty little shit that he was.
She got her surgery the next month. Without that knee, mom would have stopped walking and that would have been it for her. She’s now 87 and really slowing down again. This time a knee won’t fix problems but at least she had a few more years to hang out with us.
Kids. Go advocate for your parents. Don’t let asshole doctors push them around.
Hi Julia,
Thank you for the mention. I remember Gary's response, and it's poignant, and it's clear he is an excellent advocate for his wife.
It was through self-advocacy, that I saved my life twice. The first was when I pointed out to a doctor that I found something on my regular monthly breast self-exam that a mammogram and another doctor missed. It was cancer. The second time I saved my life was getting a preventive double mastectomy with reconstruction because I had a habit of slipping through the medical cracks. I fired doctors who were not on board, and I hired a great medical team, one by one. Finally, my surgery took place, and biopsy results showed many precancerous cells in my supposedly non-cancer breast. I saved my life twice; no one else did that.