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 01:17PM - edited Jun 15, 2022 02:03PM by wondering44

Posted on: Jun 15, 2022 01:17PM - edited Jun 15, 2022 02:03PM 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.

I didn't get a choice in getting cancer. I do get to choose how I live each day after. Surgery 8/18/2021 Lymph node removal (Right): Sentinel; Mastectomy (Right): Nipple Sparing Surgery 8/31/2022 Mastectomy (Left): Skin Sparing; Mastectomy (Right): Skin 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-
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Jun 29, 2022 11:13PM k-gobby wrote:

I wanted to share after reading all your posts. I always say I found my lump then contacted my friends PC doctor. Within a week, I got the PA in the hospital. She got me in for a mammogram and us in the week. A biopsy was added as the Dr was available. With in a week, stage 2, 5 cm. The PA suggested a local surgeon, or said choose COH.

My first visit there was with a BS. She wrote out my choices of treatment. I kept her paper. She got my MO. She also ordered the MRI. Bone scan and CT scan. Covid was still a problem in 2021. But opened way more since 2020. I feel blessed I got to COH when I did.

Until last Friday, I only met with my MO and her PA for one year. Also add in my BS and the Gyno Dr. The COH is big on scheduling. Visits take some c time to get to, but I have asked every question I had. This last Friday, my team was on vacation. I had someone new. She identified my arm pain as lymphodema. She scheduled out my next CT, bone scan and US.

My insurance has covered. But the cancer centers of America have now been bought by COH. That many more people may just get better, target Care. Yet, how will the COH doctor team handle all those people?

We must advocate for ourselves. Ask questions. Bring someone with us for support.

Here we can meet people like us. Fearful. Hopeful. Joyful. Sad. Supporting each other.

Chemotherapy 8/14/2021 Other Surgery 2/1/2022 Lymph node removal (Left): Sentinel; Mastectomy (Left): Skin Sparing; Reconstruction (Left): Tissue Expander Targeted Therapy 2/1/2022 Talzenna (talazoparib) Targeted Therapy 2/1/2022 Perjeta (pertuzumab)

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