Jun 17, 2022 07:19PM wondering44 wrote:

sarahmaude - I didn't read your post as criticizing your care in any way. I was glad you shared the information about Signatera. I had not heard about this and learned something new today to research. Thank you for sharing.

My thought process in my post was not to generalize that "all" women receive a less than a subpar standard of care. I am happy to hear and read about women who get excellent care. My mother-in-law received excellent care for her first BC treatment years ago. She chose a different facility in another area when she received her recent diagnosis and treatment plan at a facility. I was ecstatic to listen to her new team's different treatment plan, which was very different from the facility that diagnosed her new cancer. I have another friend who had treatment at a different facility here and had outstanding care. My insurance was out-of-network for to use the same facility she did. I checked before I made a decision on what facilities to use for my care.

I, alone, decided to use those facilities and medical professionals for my health care. That choice cost me more than I wanted to pay. That choice affected not only me but my partner too. I do not live in a rural area. I have excellent health insurance, and I have a phenomenal support team. For one short time, my prior care brought me to a lonely place in my life, even with my outstanding support team. I realized I couldn't be the only patient getting the same treatment, and there are some women with less health insurance or support than I had. My post was to support other women who have had less than an adequate standard of care. I can work to make a difference for another woman who will one day walk in those same doors I did or another woman who will walk through doors like the ones I did here.

Sharing negative experiences could educate others that they are not alone in their negative experience for treatment. Sharing positive experiences in health care could inform a woman that there is much more to choose from to get it right, like others who found the right medical teams and facilities.

Jun 19, 2022 02:50PM - edited Jun 19, 2022 02:50PM by gladis

I don't think you are critical of your care sarahmaude, it isn't wrong to notice and take note!

Changing this medical standard of care or "titanic' will take way more than us compiling anecdotal incidents to change how the medical field sees us and only if the awareness, resources and a serious "setting aside" of the time necessary for that change to take place.

I wonder IF, a survey with your statement:

"I find myself apologizing for bringing up studies and hard questions. I don't feel that way with any other professional relationship"

----would get a bazillion or fewer "likes" ?

Grateful this Father's Day that we are not all experiencing cancer treatment at the same base level, and that there are amazing teams of medical professionals who do treat women as equally knowledgeable individuals worthy of respectful inclusion in their own futures.

( I mistakenly first spelled 'won' futures instead of own, maybe I should have left it )

Jun 20, 2022 06:09PM salliesmom wrote:

I do not post often, but I thank the OP for giving me the opportunity to thank this site, and all of these threads, which gave me the clear thinking during an overwhelming diagnosis, that if I did not advocate for myself, no one would.

I was diagnosed in April, 2021, after a diagnostic mammogram for a pea sized lump I had had for a while and chose to ignore.

The news was not good. A mastectomy was cancelled by the surgeon, in between surgeries, who left me a vm to tell me my pre-op MRI was "disappointing". I saw a few more doctors at this nearby "cancer center", where getting info and answers was like pulling teeth, and the modality of the messaging was downright insulting. And cold.

They treated me like there was no hope, and I didn't like the oncologist's attitude. (I have other patients, too. You need to be nicer to my staff.....)

I had a "difficult" case, I know, and was getting branded as a "difficult" patient, I'm sure (because I got a letter telling me that, albeit AFTER I "quit". In actuality, it was just a CYA letter from a hospital where a cancer patient actually walked away from treatment! I'm not stupid. And they didn't invent gaslighting).

Anyway, frustrated by what could best be described as "communication issues", and tired of not getting answers or at least being directed to where I might find answers, on a day in June, 2021, I excused myself from my oncologist's office to "use the ladies room", and walked out of the building, vowing to myself never to return.

I live rurally, but I'm not far from several major cities. I went to work finding who I thought would be the best surgeons, oncologist's, etc., for me based on my specifics which was limited to the scant information I had.)

And yes, it is one of the top cancer and teaching institutes. But while I was initially staged at 3b by people I felt didn't care whether I lived or died (maybe it was the Medicare - they weren't making a lot of money off of me), one year later (and a mastectomy, neoadjuvant targeted therapy), I have been diagnosed as having "No evidence" of cancer in my body!

. Yes, I am incredibly blessed. No question. And I'm not out of the woods yet and will have to be vigilant the rest of my life - as we all do.

But where would I be now if I didn't take the bull by the horns? I don't know and I don't care. Possibly in the same place. (Remission). But I am not going to waste one second of my prescious time worrying about what ifs, (like what if I hadn't missed mammograms!) whose feelings I may have hurt, what they think of me, or the like. The stress, alone, from the people I had to deal with probably would have killed me.

You do what you feel you need to do for yourself. As a very wise psychiatrist ( who knew me pretty well) once told me: "You should trust your instincts. They're always right".

I wish all my sisters here love and light and good health.

And, this is not a "journey". That's what "they" want you to think. (There's more money in it).

Think of it more as an "episode".

Jun 25, 2022 10:01AM - edited Jun 25, 2022 10:04AM by wondering44

5kmc,

Please send me a private message. I'm happy to talk privately. I will send you a PM too in case you haven't used messages yet

The AI made me a wreck too after I thought I got my mind right after tx. You are not alone. 😊

Jun 26, 2022 07:02PM mpetago wrote:

The money dedicated to research is a tiny fraction of what's raised, the vast majority goes to 'awareness' and 'education,' and yes, big salaries to the heads of the fundraising organizations. Everyone knows breast cancer is a thing and you should get a lump or change checked out now. How about the bulk of the money goes to research into better early detection methods for all instead of teaching women to find their own probably-advanced cancer, and also figuring out how to stop metastasis? It's outrageous. I like the 'Think Before You Pink' campaign for this very reason - if it doesn't fund research, pass it up or demand to know why and push for better.