Best Of

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

natron0802

3

Re: I’m on hospice - anyone else?

Kris and Caryn were such great people and always quick with a kind word. I can’t believe they are both gone. Much love to their familiea

jensgotthis

1

Re: BCO In Memoriam thread, Part 2

I am very sad to hear KBL is no longer with us. So, so sad! May she rest in peace. I am heartbroken. Exbrnxgrl and now KBL. I can't express how sad I am.

lillyishere

2

Elevated CA 15-3, Stage 3, without metastases

Hello everyone,

July 2024 – Diagnosis: breast cancer ER+ / HER2 negative, with lymph node involvement, no metastases, stage IIIA. I had a CT, MRI, and PET-CT before starting chemotherapy.

August 2024 – I started chemotherapy, but before that I measured CA 15-3, which was elevated at 74 U/ml. It increased up to 92 halfway through the treatment, but returned to normal limits after I finished chemotherapy (24 U/ml).

After chemo, I had surgery, and before starting radiotherapy I checked it again – it was 21 U/ml. The next measurement was done 6 weeks after radiotherapy, before starting the first cycle of Ribociclib, and CA 15-3 had risen slightly to 24 U/ml.

I started Ribociclib preventively, because I have a high risk of recurrence. I tested the marker again after the first cycle of Ribociclib, when it had increased to 29, and again after the second cycle of Ribociclib, when it rose to 34.6 U/ml.

These increases make me quite anxious.

Are there other people in stage III who have experienced a rise in tumor marker after starting Ribociclib (Kisquali) or Abemaciclib (Verzenio), without this being associated with the appearance of metastases?

Wishing you all good health!

ghf2025

1

Re: Brain Mets Sisters

@illimae thank you for the additional information! The photo looks like it hurt. I’m glad it wasn’t too bad. I wish I was a naturally optimistic person. I think it would help me through things better.

Strange turn of events from the meeting today. It was a meeting to discuss options, which was never told to me. I got a call on Friday to go over my recent scan results and they said they weren’t sure of next steps, so they would discuss at rounds on Monday and call me back. Monday morning rolls around and I was just given an appointment with the neurosurgeon. I assumed a decision had been made and no one told me otherwise.

Anyways, it turns out I can either re-gamma knife it or have surgery. Neither was presented as the better way to go or the recommended option. He said they’re both somewhat equal. The spot that was treated a year ago is in the middle of two round shapes. The MRI isn’t clear enough to show if it’s all one long tumor or if it’s actually 2 smaller ones joined along the very edge. One of the complicating factors is that it butts up against a large vein and, again, they can’t tell if it’s attached to the vein or if it’s just pushing on it. If I had surgery, and it’s attached, he said he would likely have to leave some cells behind to be treated with radiation ~1 month later. I would also have to come off H&P for about 6 weeks. Which I’m not sure how comfortable I am with either of those risks. However, if I choose to do gamma knife again, they will likely fit me in next week and if it doesn’t behave, then surgery is on the table in a few months. I think I am leaning to trying gamma knife again as it has worked really well for me on the previous ones, knowing that I can do surgery if needed, but I would be interested in your thoughts.

Thank you for listening.

harrow

1

Re: My Husband, My Life, My Love, My Family, My Cancer

Looks like my post from earlier did not post.

Was not earth shattering. Slept pretty well, Laundry with couple of outfits washed in a mesh bag, spun and hung up to dry in my heating rack with a tent to contain the heat, helps with not damaging clothing by tossing in the dryer. Leaving the heating rack out tonight, cats are chill with it now, scared when setting it up.

Making some decisions with food, not enjoying crunchy or regular tortillas. Thinking I may toss all, just not a sandwich person. I see no issue with throwing some food in the quesadilla maker for two to three minutes. Still liking beans, rice, peppers and eggs. I still enjoy queso as well. Need to do a meat and pepper kind of vibe, can even add beans and mushrooms to it. Cheese and rice with beans would be good as well. Got chipotle mayo which can turn down spiciness of that with sour cream. Just need an overhaul, is not about carbs but more about enjoying what I eat. Make my own rice bowls or other stuff.

I did eat my queso bowl from Walmart, yummy and this evening had some leftover pizza, just cold, should be done by tomorrow.

I do hope all had a good day, even absent I was in everyone's pocket.

mara51506

4

TNBC MBC Stage 4

Hello -

I actually joined this group awhile ago and never posted anything. I’m hoping to connect with like minded women living with MBC. I was first diagnosed in 2019, stage iiib; had the standard protocol, chemo, surgery, radiation.Cancer free for 18 months, recurrence in 2021, living with it. On several treatments through the years, did well for a while, now things changing, have lung involvement, pleural effusion, possible spread to liver. I am starting new chemo Eribulin tomorrow. I’m scared, will lose my hair again, I’m assuming won’t have good quality of life?

Anyone being treated with Eribulin? What are your experiences? I appreciate your support.

Thank you -

nonni2015

5

Re: Brachial Plexopathy

Hi @tabbytink, Brachial plexopathy symptoms can vary a great deal from minor discomfort to loss of use of your arm. I have some weakness and loss of grip strength. There are posts from some amazing women who have learned to use their non dominant arm when the other no longer functions. Posts are scattered among many threads since the cause can be surgery, radiation or mets. You can type the words brachial plexopathy into the search box at the top of the active topics page to find the many posts. I hope your symptoms do not get worse.