Any long-term success stories from those NOT taking hormone therapy?

Posted by lj22 @lj22, Mar 30 11:08am

Hello all, I'm fairly new to this forum. Have previously described my case, early 60's, Stage 1, HR +, Her2-, lumpectomy and now radiation. Soon, I'll need to make a decision about whether to take hormone therapy. I've ruled out Tamoxifen, and if AI (Anastrozole), I would need Zometa due to osteopenia. I am otherwise healthy and take no other daily meds. I am also looking into natural AI's in foods and supplements. (Have reviewed Predict model, showing relatively high survival rates, but unclear on recurrence rates from his model.)

Anyone in a similar situation who has decided not to take AIs, and is doing well long term? Would like to hear your experiences. Many thanks. LJ

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Only been two years but the doctors say it effects more long term 5 to 15 years increase recurrance if I don’t take anti-estrogen. Scary - but I know I can’t take them. Some have no issues but my choice.

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Let me know what natural AI’s?

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@salamander

Let me know what natural AI’s?

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Hello, I'm not able to attach a link here, but below is a summary from online info regarding natural AI foods.

For women with breast cancer, certain foods and supplements like grape seed extract, flaxseed meal, green tea, and white button mushrooms have shown potential as natural aromatase inhibitors, helping to reduce estrogen levels, but more research is needed to confirm their efficacy and safety. [1, 2, 3, 4, 5]
Here's a more detailed look at some of these natural compounds and their potential benefits:
Foods and Supplements with Aromatase Inhibiting Properties: [3, 4, 6]

• Grape Seed Extract: Studies suggest that grape seed extract can inhibit aromatase activity and reduce tumor growth in breast cancer cell models. [4, 4, 6, 6]
• Flaxseed Meal: Flaxseed contains compounds that can inhibit aromatase activity. [3, 3]
• Green Tea: Green tea contains compounds like catechins that may help reduce estrogen levels. [1, 1]
• White Button Mushrooms: Phytochemicals in white button mushrooms have been shown to inhibit aromatase activity and breast cancer cell proliferation. [3, 3, 5, 5, 7]
• Resveratrol: Found in red wine and grapes, resveratrol is a natural compound that may inhibit aromatase activity and lower estrogen levels. [1, 1, 8, 8]
• Curcumin: A compound found in turmeric, curcumin has shown potential as an aromatase inhibitor. [1, 1]
• Flavonoids: Various flavonoids, including those found in citrus fruits and certain vegetables, have been investigated for their potential to inhibit aromatase activity. [1, 1, 9, 9, 10, 10]

Important Considerations: [1, 1]

• Limited Clinical Evidence: While research suggests that these natural compounds may have aromatase-inhibiting properties, more clinical trials are needed to confirm their efficacy and safety in breast cancer treatment. [1, 1]
• Consult with Healthcare Professionals: Before using any natural remedies or supplements, it's crucial to consult with your doctor or oncologist to ensure they are safe and won't interfere with your breast cancer treatment plan. [1, 1, 11, 12]
• Not a Replacement for Conventional Treatment: Natural remedies should not be used as a replacement for conventional breast cancer treatments, such as surgery, chemotherapy, or radiation therapy. [13, 14, 15, 16, 17, 18, 19, 20]
• Focus on a Healthy Lifestyle: In addition to considering natural aromatase inhibitors, a healthy lifestyle, including a balanced diet, regular exercise, and stress management, can play an important role in breast cancer prevention and management. [21, 21, 22, 23]

Generative AI is experimental.

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I was diagnosed with Invasive Ductal Carcinoma in Jan 2024. I did 5 months of chemo, then lumpectomy and lymph nodes removed. Then Mastectomy as there was residual cancer in my breast area and lymph nodes. I did 33 radiation sessions. My latest visit with my oncologist netted me the option of taking AI's or not. I did the research and then made my decision. I opted to NOT do any AI drugs due to the side effects. I am 75, 3 years since recovering from Polymyalgia Rheumatica. I also have osteoporosis. The side effects of joint pain and bone loss are not acceptable. Lowering my estrogen production naturally seemed like a good idea.
So I have been on a mission to try to stop any cancer recurrence by eating healthy. I have discovered all of the above foods that help fight cancer. Broccoli and button mushrooms are my daily friends! I have discovered mushroom coffee which to me adds just another way to get the mushroom fighting affect into my body.
I also discovered 'intermittent fasting' as a great way to fight cancer's return. I learned this from folks in my local cancer support group. In a nutshell, once you stop eating and have digested your food, the good cells in your body go to sleep as they have nothing to eat. The bad (cancer) cells die because they have nothing to eat. This is the layman's definition but it's easy for me to understand!
I found that if I stop eating after dinner and wait to eat until about noon the next day, I have fasted for 12-14 hours. (Definitely drink water during your fasting time). That should help to kill cancer cells that may be lingering somewhere in my body.
I will always be on the lookout for foods that will kill cancer and appreciate the information above!

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I was diagnosed and had right breast lumpectomy with sentinel node biopsy in Jan 2024. Full breast radiation for four weeks with a bonus double dose last week. The radiation had severe impacts on both my skin and lungs. (Ended up with pneumonia, collapsed lung and intubated for 8 days....due to radiation damage to my right lung.)

Then letrozole for approx 6-7 months will debilitating joint pain, neuropathy in my hands and trigger finger in two fingers. I could barely function and chose to quit any AI. It has been four months and finally some relief in joint pain but still have fairly severe neuropathy in my right hand. Wakes me up at night....sadly.

Btw...going for a bone scan this week. Feeling hopeful.

I am taking a regime of vitamins and turkey tail mushrooms. Hoping for the best.

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A note about natural products as a substitute for manufactured aromatase inhibitors. See the commentary
- Review on Natural Agents as Aromatase Inhibitors: Management of Breast Cancer https://pubmed.ncbi.nlm.nih.gov/37861041/

"A variety of natural compounds have been investigated for their capacity to inhibit aromatase activity and lower estrogen levels. ... It has been demonstrated that by decreasing estrogen synthesis, they can slow the growth of breast cancer cells that are dependent on estrogen. However, the clinical evidence supporting their efficacy and safety in breast cancer treatment is inadequate. More research is required to investigate the therapeutic potential of natural medicines, such as aromatase inhibitors, in treating breast cancer. The clinical trials are required to assess their efficacy, appropriate doses, and potential interactions with other therapies. In conclusion, natural aromatase inhibitory drugs are promising adjuncts in the treatment of hormone receptor-positive breast cancer. Their clinical value and safety profile, however, require additional investigation."

More and more cancer centers and oncology specialists are open to discussing and integrating complementary medicine in programs called Integrative Medicine or Integrative Oncology. Integrative medicince is offered at many cancer centers of excellence, including Mayo Clinic.

Here's a link to more information about Mayo Clinic's Integrative Medicine programs
– Integrative Medicine and Health https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567

As always, when considering integrative, alternative or complementary therapies, talk to your oncologist. Never disregard professional medical advice or delay in seeking it because of something you have read on the community.

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To jnorki: My experience with AIs--both letrozole and exemestane didn't agree with me--but I'm fine on anastrozole. In your place, I'd try anastrozole or exemestane or tamoxifen. Only if none are bearable would I give up on AIs.
IMHO Your doctor should have offered a different AI once s/he knew you and letrozole didn't get along.
One other suggestion: have you consulted a hand surgeon regarding your neuropathy. I'm wondering if swelling caused by letrozole is putting pressure on the nerve(s) that might be relieved by surgery (I'm thinking of carpal tunnel syndrome and how it's treated.)

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@jnorki

I was diagnosed and had right breast lumpectomy with sentinel node biopsy in Jan 2024. Full breast radiation for four weeks with a bonus double dose last week. The radiation had severe impacts on both my skin and lungs. (Ended up with pneumonia, collapsed lung and intubated for 8 days....due to radiation damage to my right lung.)

Then letrozole for approx 6-7 months will debilitating joint pain, neuropathy in my hands and trigger finger in two fingers. I could barely function and chose to quit any AI. It has been four months and finally some relief in joint pain but still have fairly severe neuropathy in my right hand. Wakes me up at night....sadly.

Btw...going for a bone scan this week. Feeling hopeful.

I am taking a regime of vitamins and turkey tail mushrooms. Hoping for the best.

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@jnorki it had taken me about 6 months, after stopping Anastrozole, to get over the joint pain in my hip. I also had a trigger finger. Please let us know how your bone density test goes. Blessings & keep on keeping on 💪🏼.

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Thank you. I am closing in on 6 months off Letrozole - still having joint pain but decreased considerably. My trigger finger is better but the neuropathy in my right hand is still substantial.

My one year mammo was clear and my bone density scan was normal - praise God.

Thanks again.

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I'm 75 now, but had DCIS about 32 years ago. No real staging at that time, tumor was about the size of a quarter, no lymph node involvement. But I had a mastectomy & underwent 6 months of chemo. I was sick of the whole thing, even a little depressed, and said NO to tamoxifen; I wanted to feel normal again My periods came back until age 50 & that was fine with me. I was cancer free until just two years ago, with a new tumor. If you're at stage 1, that's pretty lucky!

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