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I have Er/pgr+, her2-breast cancer and decided to do the double mastectomy last June. Had 2 lymph nodes with break through and 1 contained. I did the oncotype testing, which I highly recommend, and my score was 13 so I did not need chemo but did 15 rounds of radiation. I’ve decided not to do AI treatment despite my doctor push pushing hard for it. I feel better making this decision than taking the medicine but would appreciate hearing from others
The first time I had breast cancer I was 50 years old, it was stage 1, no lymph nodes involved, HR positive, HER2 negative, with a low onco score and low risk of recurrence. I had a double mastectomy, but did not need to have chemo or radiation. I was pre-menopausal and my onologist wanted me to take Tamoxifen. I have been high risk for blood clots since my 20s so I declined taking Tamoxifen because one of the likely side effects is blood clots.
2.5 years later I was diagnosed with endometrial cancer which was also HR positive and HER2 negative. I had a hystectomy along with ovary and fallopian tube removal. I had radiation, but chemo wasn't necessary. Despite the cancer being hormone positive, my OBG oncologist did not suggest or prescribe an AI for me. The endometrial cancer returned on 3 separate occasions. I had chemo and radiation the first time and just radiation the other two times. These cancers were also hormone positive, buy still no suggestion or prescription for an AI. I underwent gene testing when the endometrial cancer returned the first time and learned I have a CHEK2 defect. When CHEK2 genes work properly they help to avoid cancer. When they are defective you are more likely to get cancer.
7.5 years after my original breast cancer diagnosis I was diagnosed with breast cancer again. The new cancer was HR positive, HER2 negative, stage 3C, and very aggressive. I required lumpectomies and had 2 positive lymph nodes in my chest and 14 of the 16 lymph nodes removed from my armpit were cancerous. I had chemo for a second time and underwent radiation for the 5th time. My PET scan had been clear in May 2024, but 3 months later in August 2024 the breast cancer showed up. I am now taking the AI Letrozole and will need to remain on an AI for the rest of my life so prevent my body from producing estrogen. I am also on the CDK inhibitor called Ibrance for 3 years.
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@A MyBCTeam Member
“Aromatase Inhibitor-Associated Musculoskeletal Syndrome (AIMSS)
commonly causes joint pain (arthralgia), muscle pain (myalgia), joint stiffness, and sometimes carpal tunnel syndrome, affecting 20%–74% of patients on AI therapy. Symptoms are usually symmetrical and often start within 6–8 weeks of beginning AI treatment, frequently peaking around 6 months.
University of Michigan Health
University of Michigan Health
Key Symptoms of AIMSS
Arthralgia (Joint Pain): Often affects the hands, wrists, knees, lower back, hips, and shoulders.
Joint Stiffness: Prominent in the morning or after periods of rest.
Myalgia (Muscle Pain/Soreness): General soreness, often affecting the back and limbs.
Reduced Grip Strength: Difficulty with hand function.
Carpal Tunnel Syndrome: Nerve compression in the wrist.
Tendon Issues: Tendonitis or trigger finger.
University of Michigan Health
Key Features and Risk Factors
Onset: Symptoms frequently appear within the first 6–8 weeks, though they can develop later.
Duration: Often lasts throughout therapy but may resolve within 2–4 weeks of stopping AIs.
Risk Factors: Preexisting joint issues (arthritis), higher BMI, and previous chemotherapy.
University of Michigan Health
Management Strategies
Exercise: Regular cardiovascular exercise is strongly recommended.
Medication: Nonsteroidal anti-inflammatory drugs (NSAIDs) or duloxetine are often used.
Other: Acupuncture, acupuncture, and in some cases, switching the specific AI medication.
Palliative Care Network of Wisconsin
These symptoms are a major reason for patients stopping breast cancer treatment prematurely, so managing them is crucial for long-term survival.”
ScienceDirect.com
There were many errors made by my original breast cancer oncologist and OBG oncologist beyond the AI issues which is why they are no longer my doctors. I should have been put on AIs when I was diagnosed with hormone positive endometrial cancer the first time around. Had I been prescribed an AI then I may not have been diagnosed with cancer 4 more times. If I knew then what I know now I would have insisted on being prescribed an AI. It sucks being a 6 time cancer patient that has had 15 cancer related surgeries. As it now stands my 5 year recurrence risk for this aggressive stage 3C cancer is 50% without an AI and CDK inhibitor and 30% with an AI and CDK inhibitor.
If you don't already know your 5 year recurrence and survival odds both with and without taking an AI ask your oncologist what your risks are before you make your final decision on the matter. Since you had a double mastectomy and your cancer was in a few lymph nodes it was advanced enough to require radiation. In addition, since you are hormone positive on top of it all is why your oncologist is seriously urging you to take an AI. If one AI gives you side effects there are still other AIs you can switch to that may agree with you better or you can stop taking AIs altogether. I am on the lowest doses of Letrozole and Ibrance. The only side effects I experience from the Letrozole are hot flashes and my lifelong insomnia has gotten a little worse. The side effects I have are worth it if I can avoid getting diagnosed with a hormone positive cancer for the 7th time. Good luck and best wishes with whatever direction you go with the AIs ❤️
@A MyBCTeam Member
You are only 57 and have ILC.
I also have ILC and am much older than you.
I was only able to take Letrozole
for 2 1/4 years and had to stop because of side effects.
Be aware that there are some trials that showed people talking lower doses of the AI’s and Tamoxifen also.
Some women have AIMSS and have side effects which range from mild to severe.
Some do not carry these 2 genes which cause the above and have no symptoms.
That said, the doctors are aware of these genes but do not test for them or have a test.
If they did, women with symptoms or who would have symptoms could throw the whole kitchen sink of remedies at AI’s in the beginning….
I would have stayed on letrozole if I could have..
Oncology wants me to try tamoxifen....
What is AIMMS Sue...?
I really hate that the treatment to help stop Cancer recurring is problematic for some..
I had lumpectomy jan 2025 for estrogen positive ....3 lymph nodes clear...
Hi Stacey Just wondering what reaction you get from your Oncology team, about not taking AI 's
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