Calling all 20 year plus survivors
Good day! First diagnosed with 2.5 cm invasive ductal, ER PR positive in 2004 at the age of 53. Lumpectomy and brachytherapy. In 2006, I had very small recurrence which was excised followed by chemo, radiation. I took tamoxifen for 5 years and was "dismissed" by my oncologist in 2011. Late 2013, I had redness of nipple in same breast, and after ultrasound and mammograms, was told it was a "cyst."
Unfortunately, it wasn't, and by June of 2014, my skin was puckering, redness was worse, and there was oozing around the lumpectomy incision site. Punch biopsy showed grade 3 invasive ductal carcinoma. Underwent right total mastectomy in July 2014. Pathology was multifocal cancer, and the largest focus was 2.5 cm and extended over 10 cm area with skin involvement. It was BAD. CT showed small pulmonary nodules, lymphadenopathy, and metastatic adenocarcinoma in a distant axillary lymph node. After some really powerful chemo, I started Letrozole in January 2015. I moved my treatment to a local cancer center because my oncologist left the center that treated me for 10 years. The misdiagnosis was from a breast surgeon reading the results of the ultrasound and accepting the opinion of the radiologist. I didn't visit the oncologist at that time and believe he would have wanted a biopsy. Lesson learned - always get another opinion.
So, the metastasis began in 2014, over 10 years ago. In August of 2020, the cancer recurred in the liver with small lesion in my spine. Letrozole was discontinued and I started Faslodex, Ibrance, and Xgeva. Switched to Verzenio because of high liver enzymes and discontinued Xgeva because of ONJ side effect.
It's now 2025 and I'm still good, after 55 Faslodex injections and continuation of Verzenio. There's been some bumps along the way - first was the misdiagnosis (always wonder if they had biopsied things would be different), osteonecrosis of the jaw from Xgeva (recovered with excellent oral surgeon care), and lymphedema (after 18 years since lymph node removal). Lymphedema is chronic and requires continual therapy. I was very athletic (competitive swimmer, bicyclist, runner-including marathon) and now I get winded going up a slight incline from radiation and lung involvement.
It hasn't been a picnic, but I kept working until I was 65 and fully retired at 70. I'm now 74. To complicate matters, my beautiful, talented son, fell (severe traumatic brain injury) and now resides in a section of my home that I designed just for us to live out our lives at home and not in a facility. So, yes, work and even built a new home!
As I've witnessed others like Olivia Newton John, Cokie Roberts, Elizabeth Edwards, Shannon Doherty, Suzanne Somers fight similar battles in different ways, I think about my future and when my life will end. I've recounted my story because I look for details from other's stories and can't find them. I'm searching for an answer to the rest of my journey. Hopefully, these details will help others, and I'd like to hear from you.
Twenty-one years on this journey seems like a long time to me, and I wonder if I'm one of the lucky ones, or is this becoming more common? That's another reason I started this post.
In any case, if those who have not reached this milestone are encouraged by my story, I'm happy.
We are all sisters and need to continue fighting for continued research and new treatments and just maybe, I'll be able to live to 92, like my parents, cured of cancer, and dead from old age. I want to RIP knowing I had a purposeful and full life.
Thank you.
Comments
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@lucysgirl - Welcome to Breastcancer.org, and thank you so much for sharing your powerful story. Twenty-one years is remarkable, and we know your experience will offer hope and insight to so many others here. We’re grateful to have you as part of this community and hope others will join in to share their stories too. Let us know if we can be of any help—we’re here for you.
Sincerely,
The Mods
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Hi there
I have also been around for 20+ years, first diagnosis in 2004, went through surgery, chemo and radiation. Took Tamoxifen for 14 years and was asked to stop by the Surgeon. 3 years later i had mets all over. Now I just had my 45th cycle of Faslodex and Ibrance. So far so good.
Lesson learnt, I should have consulted an oncologist before stopping tamoxifen based on the surgeons recommendation, But as we know hindsight is always perfect….
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Lucysgirl and MaleBreastC - Thank you both for sharing your stories. You are both inspirations and give others like myself hope. I've been metastatic for two years now and am very moved to see some who've been doing this as long as you have. Keep it up, and I hope you both have many, many, many more years ahead.
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@lucysgirl Thanks for sharing your story. I'd like to join you in living into my nineties, cured of cancer and living a full, purposeful life. Let's do it!
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Thanks for responding! Looks like the Faslodex and IBRANCE is keeping you away from recurrence (“malebreadtc”). What an amazing discovery. I’ll be interested to see if others have had this good experience.
One has to keep on top of this-I get CT every three months and visit with oncologist. Blood draw and labs every month before injection. I hate the IV part of the CT with contrast. Last year, the tech let me get on the table and have the contrast injected even though she didn’t get a blood return. I experienced an infiltration. OMG! This was painful. I’m strong, but I was in tears. I had thoughts of quitting treatment, but know my son needs me, so I got over it. Now I’ll have contrast every other time.
What concerns me now is whether it will come back again. Seems like every five years treatment stops working, so I’m nervous at 55 months. Do you feel this way?
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