Anyone had cancer return while taking hormone therapy meds?

I'm 64 and was diagnosed with left breast invasive ductal carcinoma (ER+ HER2-) in Sept. 2020. It was caught early. Decided on bilateral mastectomy (personal choice and not something my breast specialist suggested). 23 lymph nodes removed with 3 showing cancer. I had 6 weeks of radiation but no chemo since Mammaprint showed no benefit from it. Started taking Letrozole (aromatase inhibitor) and took it for 3 years with regular 6 month exams from breast surgeon and oncologist. Labs were monitored and my markers never changed. In July 2023 I started experiencing some lower back pain. PCP prescribed steroids and muscle relaxers, along with stretching, thinking that I had probably pulled something in my lower back. Just happened to have one of my regular visits scheduled in August to see my breast specialist and she suggested having some scans run just to be safe. Scans came back kind of questionable so she scheduled a PET scan. Turns out my breast cancer had metastasized to my bones and was especially present in my spine. The PET scan showed a kind of shotgun effect with most bones in my body being affected to some degree. Started new treatment plan in October after conferring with my oncologist and getting a 2nd opinion at MD Anderson. That treatment plan consisted of Verzenio 150 mg with 2 injections of Fulvestrant (estrogen receptor antagonist) and one injection of Xgeva (bone builder) once a month following the initial 3 bi-weekly injections during the load-up period. Had a few side effects with the worst being diarrhea. It became chronic and eventually caused ulcerative colitis. Even though the treatment plan was working well and had stopped the cancer from advancing I had to stop the Verzenio after almost 8 months and start taking anti-inflammatory/steroid meds for my UC. During that time I had labs and injections every month, PET scans every 3 months and opted in for 2 kyphoplasty procedures to help reduce the pain in my spine, both lumbar and thoracic regions. Had issues with insurance authorizing new medication (Ibrance) so I just started taking Kisqali last week after being off Verzenio for 5weeks. Verzenio, Ibrance & Kisqali are all CDK4/6 inhibitors so the Kisqali should continue to work, but the side effects are a little different as is the dosage requirement. All that being said, I feel better than I did 7-8 months ago and the pain I have is tolerable on the days that it bothers me. I pray the Kisqali will continue to do the job that the Verzenio did (and without diarrhea), but only time will tell - next PET scan will be in October. With all that being said, YES, breast cancer can metastasize even while on aromatase inhibitors. Make sure your care team uses scans in addition to lab work and physical exams as often as they will allow. My care team told me that wasn't necessary and that the cancer markers in my blood would be the tell-tale sign of advancement. Didn't happen that way and I ended up with stage IV breast cancer. I moved all my care and treatments to MD Anderson and I travel 4 hours to get there. Yes, it's inconvenient, but I feel I'm in much better hands than I was initially. Educate yourself and don't ignore what your body or your mind tells you. Despite all the negatives, there are many treatment plans that can work. Everyone's situation is unique. I hope your cancer journey is the best it can be and you find the care you need! Prayers to all!

@lautwell
Was the 2nd cancer in the same spot as the first time or just same breast?
I’m feeling something similar to what I felt when I found the cancer the first time, but it’s about an inch or so above my Lumpectomy incision.
I am hoping it is just scar tissue but have an ultrasound scheduled for next week.

Hope it turns out to be nothing. Hugs.

@lautwell
Was the 2nd cancer in the same spot as the first time or just same breast?
I’m feeling something similar to what I felt when I found the cancer the first time, but it’s about an inch or so above my Lumpectomy incision.
I am hoping it is just scar tissue but have an ultrasound scheduled for next week.

It was different. My first was a small lump near my armpit, where doctors tell you not to forget to check. The second time I felt deep itching, kinda localized, not far from my first lump location. The itching was enough to wake me at night, but I ignored it…until it showed up on my annual mammogram as little ‘salt specks’.

Yes.

@lautwell
Sorry for a million questions…..
I have noticed some itching but it’s kind of been in different areas of my breast, not in the spot that I feel this new “lump.” Did yours only itch in that area?

Did they biopsy it first or did you just have the Mastectomy surgery?

And Since it was in the same breast as before, what treatment did you do? Did you have radiation the first time? I have heard you can only have radiation to an area once.

@lautwell
Was the 2nd cancer in the same spot as the first time or just same breast?
I’m feeling something similar to what I felt when I found the cancer the first time, but it’s about an inch or so above my Lumpectomy incision.
I am hoping it is just scar tissue but have an ultrasound scheduled for next week.

I’m happy to answer any questions if it helps you. The deep itching was the same breast but further center than the lump under my arm. My nipple was also itchy. At the time, I didn’t connect it with breast cancer, but in hindsight I believe those were my cues. So many other things went ‘upside down’ in my life at that point, it’s kind of a blur, but yes…I’m quite certain we did some kind of biopsy because I clearly remember the surgeon telling me we caught it at stage 0 (which I didn’t even know existed). Later I had a sentinel node biopsy done…and then the bilateral mastectomies. Correct…no radiation (or chemo) this time…they said my skin/tissue was already ‘toast’. Mentally, intentionally fight against fear…but I do think your itching alone is something you need to get checked out. Sending you ((hugs)) of encouragement! 🩷

I had a double mastectomy so there hasn't been a cancer in the same spot. My 2nd diagnosis was breast cancer metastasized to the bones. Breast cancer can spread to other parts of the body and be the same cancer as the original diagnosis - it's not always a secondary cancer. For example, the cancer that is in my bones is the original breast cancer that I had, not a bone cancer, just cancer spread to the bones. That same cancer has the possibility of spreading to there parts of my body, such as the lungs, liver, etc but wouldn't be labeled as lung cancer or liver cancer; it would still be breast cancer that had spread. That's not to say different kinds of cancer can't develop in other areas. I hope this helps.