Breast Cancer/Osteoporosis/Heart issues? How to decide on which meds??

Posted by rene1636 @rene1636, Oct 15, 2022

I’m 62, And the hits keep on coming…..My Oncologist ordered a DEXA scan prior to giving me hormone suppression treatment for my ER/PR+ DCIS to check my bone density since hormone suppression can cause additional bone loss. The results were Osteoporosis. Now she wants me to take a bisphosphonate along with the hormone suppressor. To add on this I had a Heart Calcium CT test since the hormone suppression & osteo meds can add/cause heart problems. I also have borderline high cholesterol, a horrible family history of heart disease & a benign Adenoma on my kidney adrenal gland which adds to my concern before I start taking any treatments. The CT scan showed some problems with blockage so I also have an appointment with a cardiologist (11/1) to help advise which meds for Osteoporosis, blockage/cholesterol & DCIS would be better for me to take to avoid any other heart complications. From researching the involved medications it seems that what I take for one condition could lead to complications with another condition. Also as icing on the cake, radiation for the DCIS was recommended which is another potential heart & bone killer. I really don’t know what direction to go in at this point & I’m hoping someone else in the group may have found the same situation. I feel like it’s down to a choice of suppressing the hormones to avoid future cancer since my cancer type feeds on them & your bones need estrogen, meds to build bone for the Osteoporosis OR avoid them to help keep my heart healthy & hope for the best. I don’t want BC again but I also obviously need my bones & heart to be ok, without them I’ve got nothing.
Do I need an Endocrinologist now too? The Oncologist said there was no need to check my hormone levels before taking a med? What if they’re low now & a hormone suppressor isn’t needed? My Parathyroid hasn’t been checked for contribution to bone loss? They’re throwing meds at me like a pharmacy, VitaminD3 (blood level was 13), hormone blockers, cholesterol meds & now osteoporosis meds, all before I even get to the Cardiologist! Shouldn’t there be tests for these conditions before throwing a medication down our throats? Are there any natural remedies that work for any of this?
My heads spinning. I think I need a doctor “organizer”, lol. One moment after another, one foot in front of the other…………..

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@colleenyoung

@rene1636, you’ve received great replies regarding osteoporosis and radiation. I’d like to address the heart issues.

Mayo Clinic offers a program to address heart problems associated with cancer treatment called cardio-oncology. The Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment. Other cancer centers may have a similar program.

You might also want to ask about Integrative Medicine too. There is an incredibly long list of natural substances that have been tested for their estrogen inhibiting qualities. Just scrolling through this journal article made my head spin:
– Natural Products as Aromatase Inhibitors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074486/

Anyone who is considering a non-synthetic aromatase inhibitor should talk to someone qualified in an Integrative Cancer Care specifically. Here's more information about integrative medicine and cancer care at Mayo for example:
– Integrative medicine https://www.mayoclinic.org/tests-procedures/complementary-alternative-medicine/about/pac-20393581

Cancer care is a team effort and it’s hard to be the coach, referee as well as the quarterback when you’re also the patient.

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I am grateful for the link to the article about natural products as aromatase inhibitors, but I hope more research and publications have appeared on this important topic since 2008. If anyone has links to more recent pubs, thanks in advance!

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@dick61

Find a proton radiation center close to you. It is an amazing form
of radiation that releases all of its radiation at the targeted site. Had it for prostate and after mastectomy and 6 node removal. No damage to any organs, etc. Google proton radiation. It's amazing and safe. Good hunting!

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Proton radiation is stronger than other radiation. Correct?

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@polianad22

Proton radiation is stronger than other radiation. Correct?

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No, it's not. But all of the energy is released at the target and no healthy cells or tissue are in any way damaged. Had proton radiation to treat both prostate and breast cancer. I experienced no injury to any nearby organs. Google it and read how it works. Amazing. Do well!!

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@rene1636

Thank you for this information! There was never a truer statement than what you said about being the coach, referee and the quarterback!!! Very well said! That’s exactly what it feels like while trying to figure out all the variables, doctors & treatments available to help me advocate for my healthcare. It’s exhausting, both mentally & physically. I really wish I was closer to a Mayo Clinic but unfortunately I’m in the Midwest. We do have Siteman Cancer Center locally & they have Cardio Oncologist’s on staff. My husband passed from cancer in 2015 & he received very good care at Siteman. At the time of my DCIS diagnosis I wasn’t thinking clearly or I would have gone there to begin with. Once I get the Oconotype for DCIS results & see the Cardiologist, I’m planning on going there if needed to see what’s suggested & probably continue my care. Part of my issue is that I don’t feel like I have a “team”. Currently, my Oncologist is deciding what she thinks I need. Each doctor feels like just a piece of the puzzle when not having the entire picture to work with so the pieces aren’t fitting. Thank you also for the information on Integrative Cancer Care! I’ve seen some posts about proven natural alternatives for estrogen suppression & I will definitely check into the information! I truly believe that the more educated we are, the better we can advocate for our healthcare.

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Great thoughts! I, too have a team at Mayo, however I see them individually and tell them each my concerns. The team members give me their own knowledgeable input and I must decide on treatment. They each speak in favor of their particular department and don’t present as a cohesive team. I feel as if I am left alone to decide on life or death decisions.

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It is a challenge when one develops multiple health issues. It is important to see the patient's total picture.
I have osteopenia/ osteoporosis and have been on medications for some 20+ years. I have been on Prolia for 7 years.
I was diagnosed with lung cancer two years ago and had 2 VAT surgeries, and recently a radiation treatment. Radiation impacts bone density. I had a bone density recently and the local provider suggested I lock in my results and go to Fosamax from Prolia. I asked my Primary Care Provider if he thought that was a good idea and he said he did not have the knowledge and recommended I see an Endocrinologist. I therefore consulted one at Mayo. I learned something very important. He recommended I continue on Prolia for another 5 years and then I could consider changing to a different drug. Prolia has bone specific antitumor effects. That is very significant for someone with cancer who fears spread to bones!
I am also now on Prednisone which impacts bone density significantly, so it is important to consider all the related effects of treatments.

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@vic83

It is a challenge when one develops multiple health issues. It is important to see the patient's total picture.
I have osteopenia/ osteoporosis and have been on medications for some 20+ years. I have been on Prolia for 7 years.
I was diagnosed with lung cancer two years ago and had 2 VAT surgeries, and recently a radiation treatment. Radiation impacts bone density. I had a bone density recently and the local provider suggested I lock in my results and go to Fosamax from Prolia. I asked my Primary Care Provider if he thought that was a good idea and he said he did not have the knowledge and recommended I see an Endocrinologist. I therefore consulted one at Mayo. I learned something very important. He recommended I continue on Prolia for another 5 years and then I could consider changing to a different drug. Prolia has bone specific antitumor effects. That is very significant for someone with cancer who fears spread to bones!
I am also now on Prednisone which impacts bone density significantly, so it is important to consider all the related effects of treatments.

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Thanks for bringing up multiple problem issue. My doctor thought the osteopenia was less concerning than my massive depression on letrezole.

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@vic83

It is a challenge when one develops multiple health issues. It is important to see the patient's total picture.
I have osteopenia/ osteoporosis and have been on medications for some 20+ years. I have been on Prolia for 7 years.
I was diagnosed with lung cancer two years ago and had 2 VAT surgeries, and recently a radiation treatment. Radiation impacts bone density. I had a bone density recently and the local provider suggested I lock in my results and go to Fosamax from Prolia. I asked my Primary Care Provider if he thought that was a good idea and he said he did not have the knowledge and recommended I see an Endocrinologist. I therefore consulted one at Mayo. I learned something very important. He recommended I continue on Prolia for another 5 years and then I could consider changing to a different drug. Prolia has bone specific antitumor effects. That is very significant for someone with cancer who fears spread to bones!
I am also now on Prednisone which impacts bone density significantly, so it is important to consider all the related effects of treatments.

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@vic83 bisphosphonates like Reclast (Fosamax is a less potent one) also have some anti-bone cancer properties.

The real issue for you is what happens when you stop Prolia. My docs won't use it because of the high risk of fracture and abrupt loss of bone density after stopping Prolia.

If you switch to Reclast in the future, make sure the timing is right and individualized. Keith McCormick, in his book "Great Bones," covers this in detail and suggests using blood tests to determine when to start the Reclast.

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I know. Something my previous doctor did not mention when she wanted me to go to Prolia - I saw an Endocrinologist at that time and he said nothing either. Then one discovers the issue of when one wants to discontinue.
Fortunately, I now have an Endocrinologist at Mayo who understands my total clinical picture. People with cancer have additional challenges because cancer treatments also weaken bones. They have people on Prolia for 12 years now. I will be 87 when I would go off Prolia (with 12 years of use) so the issue of after will likely not be a long-term concern.

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I’ve asked for a hormone level test as well. I have other health issues that I’m working through as well. I was told it wasn’t needed. That’s their answer. What they mean is knowing the levels of estrogen doesn’t help their treatment recommendations because there hasn’t been research that checked patients hormone levels during their studies. I asked what is the minimum amount of estrogen needed for the other organs and systems ( bone, brain, heart) to work efficiently in the average woman’s body. They don’t know. That’s what I was told. My question why can’t they find out. I’m 73 years old. I’m taking Letrozole 12.5. But maybe my estrogen levels are low enough already as compared to someone larger, younger, etc. I’m not like others in a lot of ways. I didn’t have a period until 19 years old on my wedding night. If I’d not married, it may have been longer. So, I don’t think we’re getting enough individualized care. We need more answers to make the best choices for ourselves. So what’s wrong with me getting the hormone level testing through my doctor? Why do I have to feel like I’m imposing a ridiculous concern. I’m sure I’m not the only woman wanting this information!!!

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@glendafl

I’ve asked for a hormone level test as well. I have other health issues that I’m working through as well. I was told it wasn’t needed. That’s their answer. What they mean is knowing the levels of estrogen doesn’t help their treatment recommendations because there hasn’t been research that checked patients hormone levels during their studies. I asked what is the minimum amount of estrogen needed for the other organs and systems ( bone, brain, heart) to work efficiently in the average woman’s body. They don’t know. That’s what I was told. My question why can’t they find out. I’m 73 years old. I’m taking Letrozole 12.5. But maybe my estrogen levels are low enough already as compared to someone larger, younger, etc. I’m not like others in a lot of ways. I didn’t have a period until 19 years old on my wedding night. If I’d not married, it may have been longer. So, I don’t think we’re getting enough individualized care. We need more answers to make the best choices for ourselves. So what’s wrong with me getting the hormone level testing through my doctor? Why do I have to feel like I’m imposing a ridiculous concern. I’m sure I’m not the only woman wanting this information!!!

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The aromatase inhibitors deal with estrogen from the adrenals. I believe the only other source of estrogen after menopause is over (according to my doctors anyway) is fat.

I assumed that if my estrogen level was high enough to feed my cancer, that my levels were not low enough without the medication. It is true, though, that the insert for letrozole said that a 20% dose reduced estradiol below detectable levels.

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