Anyone had cancer return while taking hormone therapy meds?

@triciaot
I am having an ultrasound next week. But if there is any question, maybe I will ask for an MRI.

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
I’m so glad it was caught early both times!
Was it the same type of cancer both times?

Yes. I was on Letrazole them Anastrozole for 5 years. My cancer returned last July. Mets to liver. Had an ablation. Now on Faslodex and Ribociclib.
Ricociclib has caused neutropenia. My schedule changed to 3 weeks on 2 weeks off.

Recurrence found ( by me feeling a cherry pit size nodule near original tumor site) after mastectomy 2.5 years ago. No rad nor chemo ( onco informed ). Regret I opted out of rad! 2.5 years anastrazole.

Now Verzenio or Kisquali being recommended post excision as well as radiation.

I’m sorry to hear of your side effects … seems like a long list of concerns. Of course I’m stunned and worried about what is happening.

Has neutropenia been helped by the new regimen? Hoping it has.

Best to you and all of us on the unwanted journey.

Gosh you have been thru the ever present challenges of BC… and I’m sorry you have had such issues to combat.

It seems I have a local recurrence and a PET will happen this week. I’m an anxious wreck. Even if the PET is clear it appears that AI did not stop a local recurrence (I had a mastectomy but no radiation which I now regret) . Doc is talking about Verzenio or Kisquali . Reading the side effects is alarming and I’m sorry you had a severe ulcerative effect.

Did you have other challenging side effects ? Any on Kisquali ?

Recurrence found ( by me feeling a cherry pit size nodule near original tumor site) after mastectomy 2.5 years ago. No rad nor chemo ( onco informed ). Regret I opted out of rad! 2.5 years anastrazole.

Now Verzenio or Kisquali being recommended post excision as well as radiation.

I’m sorry to hear of your side effects … seems like a long list of concerns. Of course I’m stunned and worried about what is happening.

Has neutropenia been helped by the new regimen? Hoping it has.

Best to you and all of us on the unwanted journey.

@anjalima
Like you, I had a local recurrence 2.5 yrs after IDC and lumpectomy. Note that I did have rad but despite the rad, which my radiologist said was what would be more effective in preventing return compared to AI, which I declined at the time, it returned near same site. So there are no guarantees even with rad. In my case I have to wonder whether the AI would have prevented the recurrence, and my having to undergo mastectomy, but will never know. Now I take the AI. Is interesting to compare our 2 cases, since you opted out of rad, and I out of AI, and we both had recurrence! Best of luck to you!

Did you have reconstruction? Just wondering how you felt the second lump. I've been fearing since I had mastectomy and reconstruction I won't feel any lumps and it would spread to other areas before I'll realize it came back.