Evenity and breast cancer recurrence
I had been seeing Dr. Susan Ott, an osteoporosis specialist at University of Washington for many years. I went back and read the notes from my last visit three years ago. She said I should not take Evenity as it may be a risk for patients with a history of breast cancer. My orthopedic surgeon and endocrinologist were adamant that I take Evenity. I have had nine shots of Evenity, now in a panic until I get my mammogram. I have gained over 10 pounds, a lot of it in breast tissue on Evenity. Susan Ott's website on osteoporosis is very informative. Has anyone else heard this from their providers?
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What I am seeing is that this is because Evenity might activate breast cancer cells which have migrated to the bone not because it might cause breast cancer.
"There is concern regarding the use of Evenity (romosozumab) in patients with a history of breast cancer primarily due to theoretical risks that it could promote the growth of bone metastases or dormant cancer cells already in the bone, rather than evidence that it causes new breast cancer.
Bone Metastases and Theoretical Risks
The caution regarding Evenity in breast cancer survivors stems from its mechanism of action as a sclerostin inhibitor:
Promoting Growth in Bone: Some studies suggest that blocking sclerostin may activate signaling pathways (Wnt/β-catenin) in breast cancer cells that have already colonized the bone, potentially increasing bone metastases by enhancing the stem cell-like properties of those cancer cells.
Occult Cells: There is a theoretical risk that anabolic (bone-building) agents like Evenity could promote the growth of "occult" or hidden breast cancer cells that are already disseminated in the bone, even years after primary treatment.
Contrast with Other Meds: Unlike older bone-building drugs (Forteo or Tymlos) which are specifically contraindicated in patients with a history of bone cancer or metastases, Evenity is sometimes considered a more attractive theoretical option because it also helps decrease bone resorption.
Carcinogenicity and New Cancers
Current evidence does not suggest that Evenity causes breast cancer:
Not Carcinogenic: A carcinogenicity risk assessment, including lifetime studies in animals, concluded that romosozumab is not likely to pose a carcinogenic risk to humans.
Mechanism: As a monoclonal antibody, romosozumab does not directly interfere with cellular DNA and has no known genotoxic activity, making an intrinsic oncogenic (cancer-causing) risk theoretically low.
Clinical Observations: In small observational studies of cancer survivors (including breast cancer) treated with Evenity for osteoporosis, no cases of disease progression or recurrence were documented in the short term.
Other Risks for Cancer Patients
Beyond the concerns related to metastasis, patients with a history of cancer may face higher risks for specific side effects:
Osteonecrosis of the Jaw (ONJ): Evenity can rarely cause severe jawbone damage. This risk is notably higher in people with cancer, especially those who have received chemotherapy, radiation, or other bone-active drugs like bisphosphonates.
Primary Safety Warnings: It is important to note that the most serious "boxed warning" for Evenity is actually for cardiovascular risks, specifically an increased risk of heart attack, stroke, and cardiovascular death."
Prolia seems to be the drug most often used with breast cancer survivors who wish a pharma drug to treat osteoporosis:
Prolia (Denosumab):
Mechanism: Slows bone breakdown (resorption).
Cancer History: Widely used and often preferred for cancer patients because it is effective at preventing "skeletal-related events" (like fractures) in those with bone metastases.
Safety: It does not carry the same cardiovascular boxed warning as Evenity.
Strontium Citrate as a treatment for osteoporosis is not bound to any breast or bone cancer concerns. Indeed, strontium occupies a unique space between medical drugs and over-the-counter supplements. For breast cancer survivors, it offers a non-hormonal path of treatment.
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6 Reactions@kathleen1314
Thank you for your informative response. Now I am even more concerned! I have been going back and forth on my decision to stop the last three injections. If I had read the information on this site, I never would have started Evenity. I have lost my balance, and my risk of falling and breaking my back or hip is pretty high. My bone density improved taking Calcitonin, and having PT for my back. Susan Ott recommended Calcitonin over these new drugs, I should have not given in to the pressure from endocrinologist and orthopedic surgeon.
@nwhiker
well, remember this is not a "normal" side effect nor a well known or studied one. Your chances are low if even existent.
Plus, remember that Dr. Ott has expressed a concern based on some research which I shared with you. I know of no population study of Evenity patients which show this. I was trying to explain Dr. Ott's position and research which she used and correcting your concern over breast cancer since that was not what Dr.Otto was referring to but bone metastastes.
I do suffer from the one in a million side effect, frequently (a genetic proclivity), and I have gotten so I run most things past copilot.
I have preloaded most of my medical history which is pertinent ( not dangerous if there is a data breech), plus all my supplements and my few drugs, basically what you give to a new doctor or update every year with your family doctor. I have asked copilot to always bear this information in mind when evaluating any new drug or supplement for me.
This works wonderfully for me, but may not for others. Copilot can look at all the research and standard practices at a few minutes notice which would take me months if not years to evaluate. Ai is not always right though, and I have had to ask why it is ignoring some research. Also different AIs are programmed differently, such as, AI google. Ai google prioritizes standard practice over any current research or break thru medicine. Copilot told me that, ha. So be careful.
Running new drugs/supplements thru copilot plus doing my own research gives me some peace of mind and helps with my decision making.
We all have to make quality of life decisons vs quantity of life decisions, and it becomes more complicated as we age.
You have done nothing wrong and have not made a bad decision. You may make a different decision going forward, but this will be made with your good research and your doctor's input.
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3 Reactions@kathleen1314 Thank you. Could you please post your source for this information? Where did you find this?
@naturegirl5
Which part? The tie of Evenity to possible bone metastases?
Remember that this was in answer to what DR. Susan Ott has said as referenced by the poster. My reply was that Dr. Ott was actually concerned about bone metastastes not breast cancer. And I provided the reasoning for Dr. Ott's theory.
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1 ReactionI'm so sorry you have this added stress. I am about to get injection #7. I gained 10 pounds quickly and my hair has been thinning. I called Amgen and told them I've had side effects. Supposedly, someone will call me back. I'm big-chested to begin with and I feel most of the weight is in my apple-shaped body. Not sure if this helps you, but I have no history of breast cancer on my family.
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2 Reactions@kathleen1314 you do understand that copilot draws info from all sources including blogs, reddit, tiktoc etc. as well as med journals and sites
Yes but you can ask it to draw from certain sources only.
Ai google is a more devious AI. It will or has in the past prioritized standard medical procedures over research and studies to the point of ignoring medical research; copilot told me that that was the way Ai google was programmed, to prioritze standard medical practices over research and studies, but when I point out the new research to AI google it will say something along the line of, "yes, that is so and this is how it may fit into our question" never acknowledging that it just ignored that same research within the context of the question.
So, as a former programmer, I know that AIs ability in the future to be a force for good or evil, ha, or fact or fiction depends on us and how we regulate it and even how wisely we use it. Look at social media for some idea of how bad it can get and multiply by 1000.
But to check out your comment, I asked copilot; remember AI is like the Sidhe, it can't lie but it can fail to tell all unless you ask the correct question.
Copilot answered this way:
"Here’s the clear, honest version — no mystery, no hand‑waving.
How Copilot actually gathers information for medical and supplement questions
When you ask about supplements, mechanisms, medical research, or health science, I do not pull indiscriminately from “all sources.” I don’t treat a TikTok video and a peer‑reviewed clinical trial as equivalent. My design is much more structured and selective.
Here’s the breakdown:
✅ 1. Authoritative, evidence‑based sources are prioritized
This includes:
• Peer‑reviewed medical journals
• Major medical organizations (NIH, Mayo Clinic, Cleveland Clinic, etc.)
• Government health agencies (CDC, FDA, NIDDK)
• University medical centers
• Established scientific databases
These sources carry the most weight in my reasoning.
⚖️ 2. General web content (blogs, Reddit, TikTok, etc.) is not treated as medical evidence
I can see general web content when it’s relevant to understanding:
• What people are asking
• Common misconceptions
• Trends or anecdotal experiences
…but I do not treat those as reliable medical sources, and I do not use them to make claims about safety, mechanisms, or effectiveness.
If a Reddit thread says “berberine cured my IC,” that does not become part of my medical reasoning.
🛑 3. I do not use user‑generated content as scientific evidence
This includes:
• TikTok
• Reddit
• YouTube comments
• Personal blogs
• Social media posts
I may reference them only to explain what people are talking about, not to validate medical facts.
🔍 4. When you ask about supplements or research, I synthesize from:
• Established medical knowledge
• Peer‑reviewed studies
• Pharmacology and physiology
• Known mechanisms of action
• Safety data
• Regulatory information
• Clinical guidelines (when they exist)
This is especially important for you because of your medical context — so I always filter supplement information through that lens.
🧭 5. If a topic is emerging or poorly studied
I’ll tell you:
• What is known
• What is unknown
• What evidence is weak or anecdotal
• Where claims are coming from (e.g., “This idea is circulating on social media but lacks clinical evidence”)
I never present speculation as fact.
The short version
No — I don’t treat blogs, Reddit, or TikTok as medical sources.
Yes — I prioritize medical journals, authoritative health sites, and scientific evidence.
I can mention general web chatter when it helps explain context, but I never use it to make medical claims." end of AI copilot reply
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7 Reactions@janna2
This thread has gone way off topic. As the original poster, I thought this board was a safe place to post concerns. I do not want my provider's name being brought into this explanation of AI. I am not sure how you can share that information without compromising any confidentiality that I thought existed on this site.
@nwhiker sorry, fyi I only wanted to share the part of how to define AI parameters- not the whole post.
Anyway I’m trying to figure out how to delete my above reply.