Decide against aromatase inhibitors?

Hi @ruffianfan55
12 years ago, at 54, I had stage 1 BC 7 mm. ER/PR+ HER2- BRCA2+ CHEK2+. Double mastectomy, 6 lymph nodes removed all clear. No other treatment recommended. The oncologist told me only 3% chance of recurrence for me. He said Tamoxifen would make little difference for me so not worth the side effects. Sounded good to me. I never expected to see BC again.

7 years later, at 61, I had a very aggressive (Ki-67 50%) 1.3 cm recurrence in my chest wall and pectoral muscle. Had that tumor removed. Positive margin. Had 39 radiation treatments and I’ve been on Kisqali and Letrozole (AI) for 4.5 years and so far so good. These are now forever meds for me as long as they keep working.

If I had it to do over again, I would have taken tamoxifen in the first place. No way of knowing if that would have kept me cancer free, but I’ll always wonder.

Best of luck with your decision and future health.

I had very similar, DCIS ER+PR+, grade 2, treated with lumpectomy, one focal point 1 mm margin which I did not have them do another surgery, and radiation, I’ll be 71 in a couple of weeks.
I was given a choice of tamoxifen or AI. I did not want an AI because I already have had plantar fasciitis twice and de Quervain’s tenosynovitis twice, and osteoporosis.
My risk level according to Memorial Sloan Kettering cancer center nomogram, link below:
DCIS recurrence risk: 5yr/10yr with Tamoxifen, negative margins, 2%,3%, without TAM 4%,6%, or with “close or positive margins” with TAM 3%,5%, without TAM 6%,10%.

My thought on taking the hormone therapy, even with a pretty low risk level, I have a fair amount of body fat although my BMI is 22. I carry more fat on my chest, abdomen, upper arm area. ER+ positive DCIS feeds off the estrogen in the chest/breast and stomach. If I have a recurrence, or new DCIS, it may be invasive. I decided to start Tamoxifen and see how it went. To tell you the truth, it didn’t go super great at the beginning when I was on 20 mg. But at 5 mg I’m not really having problems, mild thermoregulation issues, and I fight tears at emotional moments in movies, sad stories.

It’s always a balance of benefits vs side effects. I hope you can find the choice that fits you best.
https://nomograms.mskcc.org/breast/ductalcarcinomainsiturecurrencepage.aspx

Thank you, I would have made the same decision, perhaps the tamoxifen wouldn’t have changed anything. I pray that now you never see BC again!

Thank you, my chance of recurrence is 4% without endocrine therapy 2% with it. My margins were all 5 mm.
I already have osteopenia, though I am very active and exercise and lift weights. I already feel like I have no estrogen, even though I do, I can’t imagine having less!
I also have borderline LDL (103) and my blood pressure, which was always great, is creeping up. I feel like these would both get worse. 2% difference doesn’t seem worth it to me, it’s funny how we all see things differently! The radiologist even told me that I could skip radiation and have about a 15-20% chance of recurrence in 10 years. He said that they wouldn’t recommend radiation for everyone, but that I was healthy and active, so it would be worth it. I don’t see an oncologist until Sept 4, so I have plenty of time to get input and hear other people’s experiences. I still work part time and have to use the hospital where I’m employed for treatment (cheaper). It has a very good reputation, but is suffering from shortage of physicians! Everything has taken forever. I was diagnosed March 21, surgery 5-30, radiation 7-15! The best to you, glad that you can tolerate the treatment.

I hear you on your situation.
Yes, we don't know if the cancer will ever return. My feeling is IF an AI is recommended after a post mastectomy/lumpectomy, I would give them a trial despite all possible awful side effects.
I am betting for one story of success with AI's, there is story of a failure, re-occurrence happens. We are all between a rock and a hard place. Our oncologist's can not predict the future, they simply give their best evidence best recommendations and we roll the dice.
Don't obsess about the past. You made your best decision, at that time, in the moment. What's done is done. Now move forward as best you can. The very best of health to you. Live in the present moment. That is all anyone of us have anyway.

Believe me, I don’t obsess about it, but I do hope my experience can help others. I’m doing well and enjoying life. All the medical stuff I deal with including medication side effects is just the new normal. Thanks for your reply. Best of luck to you and all.

I had a chest wall recurrence following a mastectomy as well. Initially diagnosed stage 2 with 1 lymph node positive. Apparently if there is no lymph node invasion there is a 95% chance the cancer has been contained and there is no spread. My recurrence happened 2 weeks after surgery. With the spread into the chest wall my radiation oncologist said I was now stage 3B. I had max chemo and multiple surgeries to try to get it out with clear margins. My MO said that without the meds there was a 70% chance of stage 4. The AI reduces it to 35%, the CDK4 inhibitor takes off another 7% and the zoldronic acid 3%. These drugs are amazing - now 25% recurrence instead of 70% - but only if they are combined with a successful surgery. And radiation also helps.

2003 I had rt breast IDC with + lymphnodes. I did all the protocol and took Aromasin for 5years. I was clean until last March when cancer came back in left breast as DCIS, LCIS, D Hyperplasia--3 different locations, same quadrant. Now, at age 76, I am back on Aromasin. I feel taking the hormone pills back in 2004-2009 gave me the 20+ years of having clean mammograms. My current oncologist, at Mayo-Rochester, never told me the 2% percentage rate of keeping the cancer at bay by using Aromasin. She did say Tamoxifen had about a 40% rate. I have the same variety of breast cancer you have. Good luck and hugs it is scary business at the very least.

How disheartening to have a recurrence just two weeks after your mastectomy! I feel for you! Sounds like you’re on a comprehensive treatment plan which is great!

My cousin had stage IV BC at initial diagnosis 15 years ago, single mastectomy, chemo, radiation, long term oral meds and is still cancer free and doing great! Prayers that you’ll do just as well. ❤️

Thank you so much! That is great news about your cousin!