Topic: To Be or Not To Be - Challenging the Standard of Care

Forum: Advocacy — Join here to discuss issues where we can have a voice!

Posted on: Jun 15, 2022 12:17PM - edited Jun 15, 2022 01:03PM by wondering44

Posted on: Jun 15, 2022 12:17PM - edited Jun 15, 2022 01:03PM by wondering44

wondering44 wrote:

I started my "journey" a little less than a year ago. Through my "ordeal'" as another woman graciously posted on the boards, I have found that breast cancer patients tend to get dismissed in their so-called "journeys" for scanning or a diagnosis. I, too, am not a fan of the word "journey" in my cancer dx. I'd say my "journey" was more like PTSD or a lot of FEAR for some time afterward. I didn't know advocating for my care was necessary or required for cancer. What I found out was I had to learn to advocate for myself. I had to learn to keep searching for that "second or third opinion" until I was informed and accepting of the treatment path. I understand that my luck may run out at any time, and I could get another cancer dx. However, I move forward daily with the peace of mind that I have the right doctors to address it if needed. Once I found the right doctors, my PTSD and FEAR washed away.

So, as I looked back at my "ordeal," I pondered what I would do with it other than embrace my newfound peace of mind. So, I decided to CHALLENGE the standard of care. While it takes a lot of time, education, documenting, and patience, I decided to challenge it in hopes of changing it for another woman who walks that so-called "journey" after me. Today I am waiting for the Medical Panel's decisions which can take a LONG time. After the findings, I move forward with the next step of the process. May my new FIGHT change just one woman's standard of care moving forward. YOU ARE WORTH IT.

I believe every woman is worth the fight, and we all deserve the best care. XOXO to all the women who fight daily and to all those who fought and passed.

Surgery 8/18/2021 Lymph node removal (Right): Sentinel; Mastectomy (Right): Nipple Sparing Dx DCIS, Right, 1cm, Stage 0, Grade 2, ER+/PR+, HER2- Dx DCIS, Right, 6cm+, Stage 0, Grade 3, ER+/PR+, HER2- Dx IDC, Right, 2cm, Grade 2, ER+/PR+, HER2- Dx IDC, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 8/31/2022 Mastectomy (Left): Skin Sparing; Mastectomy (Right): Skin Sparing
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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.

Surgery 8/18/2021 Lymph node removal (Right): Sentinel; Mastectomy (Right): Nipple Sparing Dx DCIS, Right, 1cm, Stage 0, Grade 2, ER+/PR+, HER2- Dx DCIS, Right, 6cm+, Stage 0, Grade 3, ER+/PR+, HER2- Dx IDC, Right, 2cm, Grade 2, ER+/PR+, HER2- Dx IDC, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 8/31/2022 Mastectomy (Left): Skin Sparing; Mastectomy (Right): Skin Sparing
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Jun 19, 2022 02:30PM sarahmaude wrote:

wondering44, I agree with you. This is a thought provoking topic. I know that even if 90/100 people get good enough treatment without ever speaking up, it’s always important for us and our family members to be active participants in our care. Just feeling empowered to clarify something or asking about alternate choices is helpful to doctors and patients. Without being mind readers, doctors need to know what is important to us. We also need to be sure that we know what to do when we leave the doctor.

And, making sure we choose doctors that encourage that communication is important to our outcomes. It’s okay to choose to go out of network if we accept increases in out of pocket costs. It’s okay to travel, or obtain a second opinion, or investigate options. Decisions regarding cancer treatment need to be made fairly quickly, but that doesn’t mean they need to be hasty

Hormonal Therapy 2/17/2022 Arimidex (anastrozole) Surgery 3/31/2022 Lumpectomy (Left) Chemotherapy 5/4/2022 Taxotere (docetaxel), Cytoxan (cyclophosphamide) Dx IDC, Left, 4cm, Stage IIA, Grade 3, ER+/PR-, HER2- Radiation Therapy Left breast
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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 )

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Jun 20, 2022 04:40PM mpetago wrote:

I can relate, I've been challenging the standard of care I've had since I was a teenager. First, ovarian cysts that were assumed to be 'low pain tolerance' until one ruptured at age 13, then endometriosis I was 'too young' to have at age 17 (confirmed with laparoscopy at age 18), small breast lump and other weird symptoms at age 27 that was written off as a mental health issue (sent away with Prozac prescription I didn't fill), fighting for over a month for a mammogram at age 35 to check for the breast cancer I was 'too young' to have but did have, and then multiple issues with treatment and reconstruction, on and on and on...

It's exhausting and immensely frustrating and now that I'm finally going in to menopause and having extreme issues from that, it begins again. Like you, I've realized that I have to educate myself to the fullest extent possible and advocate constantly, because no one else is going to do it and it will be at my expense. I'm completely at peace with the decisions I've made and pushed hard for regarding treatment over the years, glad I trusted my instincts in many situations and just wish it wasn't necessary to do so.

Dx 2/18/2004, IDC, 6cm+, Stage IIIA, Grade 3, 1/11 nodes, ER+/PR-, HER2- Surgery 2/21/2004 Lumpectomy; Lumpectomy (Left); Lymph node removal; Lymph node removal (Left): Sentinel, Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): DIEP flap Chemotherapy 3/31/2004 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/14/2004 Breast Hormonal Therapy 12/31/2004
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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".

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Jun 25, 2022 09:35AM 5kmc wrote:

Hi wondering44. I too am in the New Orleans area and would love to communicate with you if you'd like. Not sure how that works on this site. I'm post surgery, radiation and trying to take an AI that I stopped after 5 weeks because I was a total wreck. Crying all the time, mad all the time and did'nt want to do anything. I know 5 wks is nothing, but if I hadn't stopped I don't know what I would have done. Have an appt with NP in survivor program 7/12, and feel like she will chide me for not "waiting out the side effects." She initially told me "I'd always find an excuse not to start the med" when on my first appt when her I hadn't started it yet. And I'm not saying I won't ever take it, I just don't want to feel like that!!

Anyway doing my best to advocate and read and learn as much as I can.


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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. 😊

Surgery 8/18/2021 Lymph node removal (Right): Sentinel; Mastectomy (Right): Nipple Sparing Dx DCIS, Right, 1cm, Stage 0, Grade 2, ER+/PR+, HER2- Dx DCIS, Right, 6cm+, Stage 0, Grade 3, ER+/PR+, HER2- Dx IDC, Right, 2cm, Grade 2, ER+/PR+, HER2- Dx IDC, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 8/31/2022 Mastectomy (Left): Skin Sparing; Mastectomy (Right): Skin Sparing
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Jun 25, 2022 08:57PM lilygizmocat123 wrote:

Thank god I just read your post WE are 2 peas in a pod! I just started this misery and I am already butting heads! I have a LARGE 4 inch lump that literally developed in a month! Many doctors think I'm lieing or delusional! One mam 2 sonogram later all I got told was "abnormal" thats it! No specifics, no pictures, no explanation...and I'm a mom so I know when someone is lieing! I knew it was bad and I wanted the truth but we had to keep playing "pass the buck" ...one doc, next doc to 3rd doc who did another mamm and 2 biopsies ( one breast one lymph) They gave me the "painless" biopsy crap ...I said don't LIE! I said give me ALL the lidocaine at once ...do not do a little...see if it hurts ...then more! Just dont!! Anyway directly after biopsy(hasn't been to lab) she said its 100% cancer no doubt! She throwing metastatic around...and telling me I can get this cut off, that cut out ....poison ( chemo) poison ( radiation) I said lady QUALITY is more important to me than quantity! Metastatic?? 8 years of operations and poison vs 2 years of a fairly normal life??? I'm not gonna lie its been a tough few days stopping myself from driving off a bridge! This system is disgusting! Why are we still getting breast cancer and why do they keep doing the same damn treatments? Where is all the research $$$ going??? CEO'S thats where!! Believe me I know YOU and WE are our ONLY and best advocate!! YOU must have your own back! These doctors see thousands of patients we ARE nothing but #'s!!! Its sad but TRUE!!

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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.

Dx 2/18/2004, IDC, 6cm+, Stage IIIA, Grade 3, 1/11 nodes, ER+/PR-, HER2- Surgery 2/21/2004 Lumpectomy; Lumpectomy (Left); Lymph node removal; Lymph node removal (Left): Sentinel, Underarm/Axillary; Mastectomy; Mastectomy (Left); Reconstruction (Left): DIEP flap Chemotherapy 3/31/2004 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/14/2004 Breast Hormonal Therapy 12/31/2004
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Jun 29, 2022 07:49PM wondering44 wrote:

sarahmaude - "Just feeling empowered to clarify something or asking about alternate choices is helpful to doctors and patients. Without being mind readers, doctors need to know what is important to us. We also need to be sure that we know what to do when we leave the doctor."I agree wholeheartedly. I did get educated on this until later. I am happy to read you got great care. :-)

gladis - "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?" I think it would get a bazillion :-)

mpetago - "It is exhausting and extremely frustrating. I am glad to read you pushed and trusted your instincts early on." Cheers to you for getting it done right. :-)

salliesmom - "Great to read your post, "you took the bull by the horns." I am glad you are not questioning "what if" had you stayed your original course. Kudos to you! I am happy to read your rocking NED! That is always a beautiful read. :-)

Surgery 8/18/2021 Lymph node removal (Right): Sentinel; Mastectomy (Right): Nipple Sparing Dx DCIS, Right, 1cm, Stage 0, Grade 2, ER+/PR+, HER2- Dx DCIS, Right, 6cm+, Stage 0, Grade 3, ER+/PR+, HER2- Dx IDC, Right, 2cm, Grade 2, ER+/PR+, HER2- Dx IDC, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 8/31/2022 Mastectomy (Left): Skin Sparing; Mastectomy (Right): Skin Sparing

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