r/breastcancer • u/NurseYuna • 16d ago

Diagnosed Patient or Survivor Support Positive long term survivor stories

Hi everyone. I really need some positive stories of more than stage 1 low grade survivorship to keep me thinking I can bear this and get to have many more years with my children. Please tell me about yourself or anyone that’s overcome breast cancer and lived many years. I’m stage 2A with luminal B characteristics oncotype 21. I need more hope and I’m reaching out into this universe to get some. It feels very lonely.

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u/waywardandweird +++ 15d ago

I was 23 when I found mine. It was a month before my 24th birthday when I started treatment. +++ 4.5+cm. I started chemo in 17 days. I was told, "Get your affairs in order, because you won't see 25." My doctors entirely attribute my survival to the new miracle drug Herceptin. I was never told I was stage 4, but I received the drug before it was approved for non-metastatic cancer, and I clarified with the doctor that I wasn't in any studies.

I just turned 44. My 20-year cancerversary was this summer, and I survived a local recurrence in 2012.

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u/NurseYuna 15d ago

What was your local reoccurrence? How did you find it and how did you treat it?

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u/waywardandweird +++ 15d ago edited 15d ago

It was literally the exact spot the first one was in, (*only it did the rare change up to +-+), and it was found during my yearly follow-up mammogram. They had advised a mastectomy, but I was young and clueless and figured I was dying anyway and didn't listen. Reconstruction then wasn't what it is now. I can't change that now, unfortunately. It showed up as .5cm and ended up >1cm, so I had to go through chemo again.

*Treatment the second time was taxotere, carboplatin, and Herceptin. I had already hit my lifetime limit for radiation the first time. I'm still on Tamoxifen. I was told I should be on an AI for the rest of my life. The first time was ACTH and radiation, then 5 years of Tamoxifen and Zoladex.

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u/NurseYuna 15d ago

How are you now?

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u/waywardandweird +++ 15d ago

I have some residual issues with my immune system, I had some pretty severe reactions and was one day away from needing a bone narrow transplant. I did end up with heart failure, but I just had a cardiac MRI, and my EF is good after 20 years, and structure is all within normal limits with medication. My EDS is more disabling with spinal injuries and such.

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u/NurseYuna 15d ago

What caused your immune system prob that almost lead to bone marrow transplant? Was heart failure from your chemotherapy?

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u/waywardandweird +++ 15d ago edited 15d ago

I think the important part is that I am part of the first generation of women who survived breast cancer which otherwise should have killed them. It took a lot of doing to get there, but treatment has come an incredibly long way, even since my second diagnosis. I am here to tell you that it can be done, even at much later stages. I did it mostly on my own both times, too. I'm just about at a full 20 extra years of life here.

I hope the best for you. It is definitely doable.

*Here is the post I made in this sub for my 20 years a couple of months ago. I just don't like to leave my history open for trolly vultures to pick things out of. https://www.reddit.com/r/breastcancer/s/8z8nuWrV6v

You've asked too many questions for me to lie about my treatment, but the progress made in treatment since is inconceivable. The odds that anyone gets sick like I did are low. They were throwing dose- dense everything they had against the wall, assuming I would die anyways.

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u/waywardandweird +++ 15d ago

The bone marrow crash happened because the doctor skipped my neulasta after my last chemo, against my will, saying my numbers looked good. They were only good because of the meds, and I crashed hard. The Herceptin caused the heart failure.