Dont settle.....Go to where they are changing the standard of care, not where you are confined by it
Below is a letter my wife wrote to West Cancer Clinic in Memphis TN. For the past 8 months we have both spiraled in what felt like a hopeless system. We had our first visit to Vandy on the 14th of August and it was an eye opener:
- Are you considering having children again? We were told by West that this would never be an option.
- Have you considered having the mets in your liver removed and approaching the breast in a curative manner? Again we were told this wasnt an option.
- Our case is going to the tumor board this week. We are hopeful that our treatment options change.
Lesson Learned: For-profit clinics are locked into the established standard of care regardless of age. My wife's youth was never factored into the treatment protocols. I hope this empowers someone, somewhere to not settle for a hopeless regime of drugs to control your cancer. if they arent trying to cure you, go elsewhere.
Subject: Transitioning My Care – as a patient you failed
To Whom It May Concern,
I am writing to inform you that I have chosen to transition my cancer care to Vanderbilt-Ingram Cancer Center. I will be requesting a full transfer of my records.
I want to be clear: this decision is not about individual providers. I am deeplygrateful for the care I received from Dr. Hahn, Dr. Benn, and Dr. Jackson. Theyhave treated me with compassion, clarity, and skill—exactly what I hoped forwhen I put my trust in West. But the system around them is broken.
I was diagnosed with metastatic breast cancer at 39—just four months postpartum, newly married, and one month shy of my 40th birthday. I work full-time. I am raising two young children. I am a whole person.
And I cannot imagine spending the rest of my life fighting this hard just to get basic support from the very place meant to care for me.
The lack of care coordination, mental health access, and meaningful patient engagement has worn me down. It has left me resentful, isolated, and disheartened. I shouldn’t have to chase referrals. I shouldn’t have to beg for help. And I shouldn’t have to feel like I’m complaining just to get what any comprehensive cancer center should provide.
There is no patient advisory board. No structured feedback loop. No clear way to advocate for change beyond individual pleading. You’ve built a system that treats patients like data points, not people—especially people like me with terminal illness, who deserve more dignity and agency, not less.
This is not sustainable. I refuse to spend what remains of my life inside a system that makes me feel like I don’t matter.
Again, I thank the providers who truly saw me. But West, as a system, failed me.
Nadia
Comments
-
A very well written letter, expressing exactly how she felt.
I’m so sorry that this was her experience. I’m glad she (and you) chose to look elsewhere and found a better system to be part of. None of us wants to be seen or treated as a diagnosis. We are people- we have feelings, emotions, hopes & dreams, concerns, lives to life, families to enjoy being with.
Nadia, hopefully by making your experience and feelings known, it will improve things for others being treated there..1 -
Thank you Ann5631, y'all are mothers, daughters, aunts, wives, friends, sisters, and so much more before a cancer diagnosis came along. It is easy to get lost in the system of pharmaceuticals and treatment protocols when cancer rears its head.
0 -
Heard from Vanderbilt yesterday. They are considering histotripsy or an ablation procedure to address Nadia's liver mets. This is super exciting as West refused to be this aggressive. Dr. Hester is meeting with the liver doctor and interventional radiologist soon to determine what is next.
3 -
My situation is not as life-challenging but I too am working on a letter regarding the “ standard of care” routine I got instead of “ patient-centered “ care. In my case it was ageism. I am 75 and had invasive pleomorphic lobular cancer with LCIS and calcifications. I had a lumpectomy and got the no-statistics-on-women-over-65 routine and they didn’t check my lymph nodes, even tho the LCIS was plentiful. After more thoroughly understanding my pathology report, I pushed them for a biopsy. A suspicious node was found but not malignant. I was also denied Oncotyping because of my age. It’s not given to women over 70! Again I had to fight for it. In this case, I was made to have an appt with a medical oncologist who proceeded to tell me everything bad that can happen with chemo and I was asked point blank that if the Oncotyping came back with high recurrence and responsive to chemo, would I do it, as in at 75 you should be at end of life anyway, why do that. I said hell, yes. I have 20 more years! I am a healthy vigorous enthusiastic 75 yr old. I should not have had this test refused and then without the scare tactics and groveling. The test came back in my favor and now I can proceed knowing that I don’t have to lay awake wondering. Patient-centered care would not make this discriminatory rule.
My best to you Nadia. My surgeon told me that she was proud that I advocated for myself I will say the same to you! 🩷
1 -
Geez, since when is Oncotype not done for women over 70? "No statistics on women over 65?" Odd, as I was nearly 65 when diagnosed and plenty of stats were cited to me. And 75 being "end of life?" Tell that to most of us on the "Older women" thread (at least one of whom is in her 90s). Your MO is ageist and sexist—it's definitely not the norm in the cancer care community. You got dealt the joker in the deck of docs.
0
