Monday, January 27, 2020

Finding an old letter—metastatic breast cancer

This is probably a re-run—at least I found it on Facebook and I often double post.  I looked for it because I’ve been cleaning out my desk and found a local’ friend’s letter written from Tennessee after her daughter’s death.  Her daughter was 61 and she was 90.  She didn’t expect to bury her daughter or have to move out of state to settle her estate.  The friend died a few months ago, and although I’m not a hoarder, I did tuck her letter back in the drawer. She was so lonely when she wrote it—had read everything in the house, and couldn’t get a library card because she wasn’t a resident.  She did start the first paragraph with advice I need today. . . “If onlys can ruin your sanity.”
So here’s what I wrote September 27, 2017 in part to warn women about metastatic cancer.
Monday night we had a 90 year old friend, a widow, here for dinner. We had such a nice evening, tinged with sadness. I've told this before, and I'm telling it again because it's so important for women. Metastatic breast cancer.
She's a member of my church, had been living out of state while she settled the estate of her deceased daughter--61--nothing a woman her age would expect to be doing. I remember about 5 years ago her daughter came to Columbus to help her mom recover from a stroke. My friend's daughter had had annual mammograms for years, and nothing was found--probably due to very dense breast tissue and the location of the cancer under her arm. But she did have a lot of pain the last 5 years and was being treated for arthritis. By the time she was properly diagnosed the cancer had metastasized to both hips, her spine, liver and lymph system. This cancer is not curable, and no one dies from cancer that stays in the breast, but if she'd been properly diagnosed 5 years ago, she could possibly be alive. That's not a given, however.  
All women have been educated about detecting breast cancer and screening--in fact, the lion's share of that money you donate and raise in walks, runs, and selling pink stuff, goes for education and not research that could actually save your life. I've looked at several websites about this and personal stories, and this one is pretty clear.
Read the comments https://participatorymedicine.org/journal/perspective/narratives/2013/04/10/metastatic-breast-cancer-lessons-learned-from-my-missed-diagnosis.
The author of this article provided a checklist:
Lessons Learned Checklist:
  1. Expect mistakes from your health provider;
  2. Ask critical questions at every visit. Take a written list of questions in order of priority. If you get home and realize something is not clear, contact your doctor again;
  3. Get a friend or family member to serve as your advocate;
  4. Communication between doctors is absolutely critical. If a Radiology report indicates possible metastatic disease or something equally alarming make sure you get a definitive diagnosis. Rule out the worst-case scenarios. Make sure the doctors involved have talked;
  5. If you aren’t confident about the doctor’s diagnosis, ask your doctor to review your records with colleagues to see what might have been missed;
  6. Get a second opinion;
  7. Choose doctors who take time and listen. Ask for a copy of the doctor’s notes to ensure your issues are documented properly. This also ensures the doctor heard what you said;
  8. Ask specialists to take a “fresh look” at your case;
  9. Make use of hospital patient advocate resources without delay.

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