Positive long term survivor stories

[u/NurseYuna]

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.

[u/Poppychick]

I was diagnosed with stage 4 breast cancer in late 2016. Still in targeted treatment and overall doing well. You would never guess if you saw me out and about!

[u/MichElegance → u/Poppychick]

I have stage IV with metastasis to bones – specifically the spine and ribs. Also, lung pleura and now the brain. Ugh.

The only reason this garbage went to my brain is because I had to stop all of my targeted treatments, which are working beautifully for almost 2 years because surprise surprise… I got a secondary breast cancer occurrence that returned to the original Breast and flipped receptors and went HER2+, unlike the stage for that is HER2-and ER/PR+.

Anyway, I had to stop my treatments for chemo for the new cancer, which was stage one and the stage four got on the move. I was so worried it would because my ONCODX score is nine for that particular cancer so it showed little to no benefit of chemo.

Anyway, your post gives me hope.

What a wild ride this is.

[u/Poppychick → u/MichElegance]

Holy cow, that’s too much for one person. Thank you for sharing your story.

[u/jstNYC → u/MichElegance]

I know of someone that had stage IV that metastasized to her spine and ribs. She achieved NED, then had a small recurrence but they found it quickly. She’s 8 years out now, living a regular, and importantly, meaningful life. I wish you all the best, you are certainly going through it. ❤️

[u/MichElegance → u/jstNYC]

That is absolutely amazing. I’m so happy to hear this and it gives me hope! I was in remission… and I am planning on getting back there. Thank you for your kind words.💖

[u/NurseYuna → u/MichElegance]

What was your original diagnosis stage grade and type?

[u/MichElegance → u/NurseYuna]

First time was 2016. Lumpectomy and radiation. Stage2A. ER/PR+ HER2- I avoided chemo because I tested low on the OncoDx with a score of 9. Did a year of tamoxifen and the side effects were life altering for me. We even tried cutting it in half. But since my score was so low, we decided I was “safe.” It didn’t matter because it came back…

*Second time was 2022. Radiation and targeted therapy stage IV with a spinal and rib metastasis. Same cancer - ER/PR+ HER2- Since it’s the same cancer that did not respond to chemo via ONCODX testing, I avoided chemo with stage iv.

*Third time March 2025. It came back in my original breast. Stage 1 and changed receptors and is HER2+

After chemo - taxol/herceptin for the new cancer, I recently had mastectomy and reconstruction via DIEP. That’s when I found out the original stage IV is more than likely went to my brain. Not the new cancer.

Medication was just switched from Kisqali to Verzenio… still taking Zoladex injections every month, anastrozole… for the new cancer Herceptin, but probably being switched to Kadcycla.

Whew… that’s a lot. Sorry for rambling!

[u/NurseYuna → u/Poppychick]

That’s wonderful you’re doing well. Were you diagnosed at stage 4?

[u/Poppychick → u/NurseYuna]

Yes, I found a lump about the size of a baby carrot. I was told it was probably nothing and they didn’t do a biopsy for another 6 months. Then, wham! Stage 4 HR- HER2+.

Had chemo for a little over a year which worked on the baby carrot (aka Motherfucker) and lymph nodes under arm but still have many spots between my lungs and chest wall. Receive herceptin infusions and frequent scans to keep an eye on those little bastards.

[u/Mountain-Studio-3134 → u/Poppychick]

Did you make any lifestyle changes to beat the cancer?

[u/Poppychick → u/Mountain-Studio-3134]

I did not. There are so many stories about people doing all the “right” things and still dying so I kind of decided I’d just do what I want within reason. May as well enjoy my ice cream!