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…………..

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

Your D3 is way too low. This can contribute to bone loss and other health issues. I would take the mega dose prescribed usually for a low D3 then 3,000 units a day. I take a 1,000 unit D3 gummy plus a D3 + K2 gummy every day to maintain my level in the 50's.

Parathyroid is usually part of my routine testing. You can request it. Is your calcium high? That would be a sign of parathyroid issues.

There is no need to test your hormonal level before cancer meds. The labs don't even seem to have a value under 15. The meds address estradiol produced by the adrenals, which presumably did feed your cancer.

What was your DCIS Oncotype score and risk of recurrence?

I had pretty severe osteoporosis before taking Femara, and due to another health issue (afib) my doc did not give me Reclast (link has since been disproven). Many do Reclast during this treatment. I walked and did Tai Chi. My bone loss accelerated the first year on meds then returned to the gentler rate of loss before the meds. Similar to the abrupt loss at menopause that also eased somewhat.

If you do decide on an AI, you can take meds like Reclast and maybe ask about Tymlos, before or after the AI. I did 5 years of AI and then went on Tymlos, starting at a low dose and ramping up. It has worked out well. (BTW my Tymlos is free through a patient assistance program at Radius.)

My cholesterol did not worsen on an AI. Are you addressing that issue already?

Again. to sum up, I would look at your Oncotype risk and if an AI is going to reduce that risk significantly (get a copy of the report, which explains this). Treat the cholesterol or meet with a dietician if diet is a possible avenue. Treat the osteoporosis during or after AI with Reclast or a bone builder like Tymlos.

To me, radiation is your biggest dilemma. I had a mastectomy to avoid it. I don't know how it affects your heart in relation to blockages and issues you already have. Maybe none. An oncologist should be able to talk with your cardiologist.

I would get more than one opinion on the radiation question. I got 4 opinions on this! I was told one in 5 would recommend it for me. But again, I had had a mastectomy (but had invasive ductal and lobular and LVI).

Many of us with breast cancer are dealing with these conflicting issues. You are not alone! I would try to see this as short term- 5 years- and not forever.

One more note: I do have fractures, but they happened well after Femara. I had never taken meds despite years of trying. If your DEXA is severe, you need to do osteoporosis meds anyway! Believe me, you do not want fractures!

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I too am facing a similar situation. I'm post surgery now awaiting ONCO test. I'm considering radiation only, no AI (my 2 choices) Radiologist recommends short course, Oncologist recommends AI meds, although I know the meds will cause a slew of side effects including Osteoporsid ( I currently have Osteopenia), arthritis, revisiting menopause (I'm 73), muscle aches and so much more, vision issues (had torn retinas), threat of blood clots. Yikes! If someone could advise me on the side effects they had from radiation, that may be my choice.
Sending hugs and prayers your way. Let me know how you do in treatment. Your advice is wonderful!

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@elliej

I too am facing a similar situation. I'm post surgery now awaiting ONCO test. I'm considering radiation only, no AI (my 2 choices) Radiologist recommends short course, Oncologist recommends AI meds, although I know the meds will cause a slew of side effects including Osteoporsid ( I currently have Osteopenia), arthritis, revisiting menopause (I'm 73), muscle aches and so much more, vision issues (had torn retinas), threat of blood clots. Yikes! If someone could advise me on the side effects they had from radiation, that may be my choice.
Sending hugs and prayers your way. Let me know how you do in treatment. Your advice is wonderful!

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Radiation has come a long way since I had it, but I did radiation (long course). It wasn’t the worst thing, it did leave me feeling quite burned, like a bad sunburn for which I used aloe Vera gel. I bought a large pump jar and refilled a smaller container to keep with me. At home I kept some in the fridge. I still remember how good that felt. Lol
The other main side effect was that by the end, I was utterly exhausted. This didn’t last terribly long, I was back to my energizer bunny self in no time.
The endocrine therapy did not give me a lot of bad juju either. I did have a few more muscle aches, these were cured by walking. The worst I had (still have) is hot flashes. I am not sure to this day if that is because they gave me a chemical oopherectomy in my chemo, gave me a physical oopherectomy after chemo, or from the endocrine therapy that threw me into hard menopause at 38. But as I sit here 18 years later fanning myself. If I had to do it over again, I would.
Yes, I now have osteoporosis, but prior to the pandemic I was getting bone strengtheners. My doctor discontinued those due to chemo patients needing every available seat in the infusion room, I AGREE! There is such a shortage of available seats, nurses, supplies, etc etc.
It sounds like you are already having plenty of issues,
does any of this help you make decisions? Are your doctors giving you a choice between the two?

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@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.

REPLY
@auntieoakley

Radiation has come a long way since I had it, but I did radiation (long course). It wasn’t the worst thing, it did leave me feeling quite burned, like a bad sunburn for which I used aloe Vera gel. I bought a large pump jar and refilled a smaller container to keep with me. At home I kept some in the fridge. I still remember how good that felt. Lol
The other main side effect was that by the end, I was utterly exhausted. This didn’t last terribly long, I was back to my energizer bunny self in no time.
The endocrine therapy did not give me a lot of bad juju either. I did have a few more muscle aches, these were cured by walking. The worst I had (still have) is hot flashes. I am not sure to this day if that is because they gave me a chemical oopherectomy in my chemo, gave me a physical oopherectomy after chemo, or from the endocrine therapy that threw me into hard menopause at 38. But as I sit here 18 years later fanning myself. If I had to do it over again, I would.
Yes, I now have osteoporosis, but prior to the pandemic I was getting bone strengtheners. My doctor discontinued those due to chemo patients needing every available seat in the infusion room, I AGREE! There is such a shortage of available seats, nurses, supplies, etc etc.
It sounds like you are already having plenty of issues,
does any of this help you make decisions? Are your doctors giving you a choice between the two?

Jump to this post

Thank you for your reply! Happy to know radiation wasnt too awful. I'm leaning toward that treatment, but see the oncologist this week. I'm going to try to listen and evaluate all of her input. I have to wait for a month before I can have radiation, so I'll be praying. ❤

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But @colleen young, if any natural approaches reduce estrogen to a level effective to address cancer, wouldn't the side effects be similar? Aren't the AI side effects from estrogen deprivation?

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@windyshores

Your D3 is way too low. This can contribute to bone loss and other health issues. I would take the mega dose prescribed usually for a low D3 then 3,000 units a day. I take a 1,000 unit D3 gummy plus a D3 + K2 gummy every day to maintain my level in the 50's.

Parathyroid is usually part of my routine testing. You can request it. Is your calcium high? That would be a sign of parathyroid issues.

There is no need to test your hormonal level before cancer meds. The labs don't even seem to have a value under 15. The meds address estradiol produced by the adrenals, which presumably did feed your cancer.

What was your DCIS Oncotype score and risk of recurrence?

I had pretty severe osteoporosis before taking Femara, and due to another health issue (afib) my doc did not give me Reclast (link has since been disproven). Many do Reclast during this treatment. I walked and did Tai Chi. My bone loss accelerated the first year on meds then returned to the gentler rate of loss before the meds. Similar to the abrupt loss at menopause that also eased somewhat.

If you do decide on an AI, you can take meds like Reclast and maybe ask about Tymlos, before or after the AI. I did 5 years of AI and then went on Tymlos, starting at a low dose and ramping up. It has worked out well. (BTW my Tymlos is free through a patient assistance program at Radius.)

My cholesterol did not worsen on an AI. Are you addressing that issue already?

Again. to sum up, I would look at your Oncotype risk and if an AI is going to reduce that risk significantly (get a copy of the report, which explains this). Treat the cholesterol or meet with a dietician if diet is a possible avenue. Treat the osteoporosis during or after AI with Reclast or a bone builder like Tymlos.

To me, radiation is your biggest dilemma. I had a mastectomy to avoid it. I don't know how it affects your heart in relation to blockages and issues you already have. Maybe none. An oncologist should be able to talk with your cardiologist.

I would get more than one opinion on the radiation question. I got 4 opinions on this! I was told one in 5 would recommend it for me. But again, I had had a mastectomy (but had invasive ductal and lobular and LVI).

Many of us with breast cancer are dealing with these conflicting issues. You are not alone! I would try to see this as short term- 5 years- and not forever.

One more note: I do have fractures, but they happened well after Femara. I had never taken meds despite years of trying. If your DEXA is severe, you need to do osteoporosis meds anyway! Believe me, you do not want fractures!

Jump to this post

Thank you for the information! You’re right that radiation is my biggest concern since it can add or contribute to other issues with bones & heart. Radiation is the “gift” that keeps on giving your entire life. I also keep in mind that everyone responds differently to the available treatments so what one experiences may not be the average response for everyone. I want to avoid a future cancer since there’s a bigger chance now for reoccurrence. I also realize the treatments are short term but every treatment has the potential to cause other medical issues many years later. I’m thinking long term damage, not a few years of side effects that can be tolerated or managed. I am taking Vitamin D3, 50,000 IU, 1x a week for 12 weeks & then we’ll retest to check the levels. My calcium tested within normal range. I’m not currently on meds for the high cholesterol since my GP was keeping watch on the levels which are just into the high range. I did request an Oconotype DX DCIS test. That was another fiasco to get it ordered. I initially wasn’t sure which of my doctors ordered it so I started asking just before my lumpectomy. The surgeon told me the Oncologist ordered it, I saw her &asked but was told the Radiology Oncologist ordered the test. I saw her 2 days later & when I asked she was surprised the Oncologist told me that. I felt this test was extremely important, I was adamant that I get one & I’m 100% positive I didn’t “misunderstand” what my Oncologist told me. I sent a message to my Nurse Coordinator stating it didn’t matter to me which dr ordered the test, just please get it ordered. The Oncologist quickly messaged back stating she had to wait until the pathology report came through to order it but she did order it. Not what she initially told me so now I have trust issues & will probably switch, especially if the Cardiologist says I need treatment of some type. This is the last piece of information I need to help figure out which type of doctor would be the most beneficial for my healthcare. I’ll look for a Cardio Oncologist to manage all the meds if my Cardiologist visit in a few weeks indicates heart treatment is necessary. It’s been 2 weeks & I haven’t received a result yet. Does anyone know approximately how long it should take for results? I’m not even confident the test was even ordered. In dealing with all of this I feel like there’s enough stress we’re under & not having confidence in your team just adds to the stress.
This site is a blessing! I wouldn’t wish cancer on anyone but sadly, it’s somewhat reassuring to know there are 100’s of women out in the world that are on a similar journey & can share experiences with each other so we all know we’re not alone! Meanwhile, I’m enjoying this life & taking it one day at a time. 🌻

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@rene1636

Thank you for the information! You’re right that radiation is my biggest concern since it can add or contribute to other issues with bones & heart. Radiation is the “gift” that keeps on giving your entire life. I also keep in mind that everyone responds differently to the available treatments so what one experiences may not be the average response for everyone. I want to avoid a future cancer since there’s a bigger chance now for reoccurrence. I also realize the treatments are short term but every treatment has the potential to cause other medical issues many years later. I’m thinking long term damage, not a few years of side effects that can be tolerated or managed. I am taking Vitamin D3, 50,000 IU, 1x a week for 12 weeks & then we’ll retest to check the levels. My calcium tested within normal range. I’m not currently on meds for the high cholesterol since my GP was keeping watch on the levels which are just into the high range. I did request an Oconotype DX DCIS test. That was another fiasco to get it ordered. I initially wasn’t sure which of my doctors ordered it so I started asking just before my lumpectomy. The surgeon told me the Oncologist ordered it, I saw her &asked but was told the Radiology Oncologist ordered the test. I saw her 2 days later & when I asked she was surprised the Oncologist told me that. I felt this test was extremely important, I was adamant that I get one & I’m 100% positive I didn’t “misunderstand” what my Oncologist told me. I sent a message to my Nurse Coordinator stating it didn’t matter to me which dr ordered the test, just please get it ordered. The Oncologist quickly messaged back stating she had to wait until the pathology report came through to order it but she did order it. Not what she initially told me so now I have trust issues & will probably switch, especially if the Cardiologist says I need treatment of some type. This is the last piece of information I need to help figure out which type of doctor would be the most beneficial for my healthcare. I’ll look for a Cardio Oncologist to manage all the meds if my Cardiologist visit in a few weeks indicates heart treatment is necessary. It’s been 2 weeks & I haven’t received a result yet. Does anyone know approximately how long it should take for results? I’m not even confident the test was even ordered. In dealing with all of this I feel like there’s enough stress we’re under & not having confidence in your team just adds to the stress.
This site is a blessing! I wouldn’t wish cancer on anyone but sadly, it’s somewhat reassuring to know there are 100’s of women out in the world that are on a similar journey & can share experiences with each other so we all know we’re not alone! Meanwhile, I’m enjoying this life & taking it one day at a time. 🌻

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You can call Exact Sciences (used to be Genomic Health) to see if it was ordered and when results will be in. It does take more than 2 weeks in my experience.

Contact info is at the bottom of the page:
https://precisiononcology.exactsciences.com/patients-and-caregivers/understanding-your-diagnosis/breast-cancer/breast-dcis-score

Ask if your doc has to release the results, and which doc?!!!

It seems to me that in your situation, the Oncotype is a pretty important piece of info.

Agree about long term damage, but in my experience, bone loss is addressable (at least to some extent). Who knows what other effects estrogen deprivation might have, but after 5 years of Ai's, I seem not to have acquired new issues other than thin skin on my forearms.

Hope you get the results soon!

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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.

Jump to this post

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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@rene1636

Thank you for the information! You’re right that radiation is my biggest concern since it can add or contribute to other issues with bones & heart. Radiation is the “gift” that keeps on giving your entire life. I also keep in mind that everyone responds differently to the available treatments so what one experiences may not be the average response for everyone. I want to avoid a future cancer since there’s a bigger chance now for reoccurrence. I also realize the treatments are short term but every treatment has the potential to cause other medical issues many years later. I’m thinking long term damage, not a few years of side effects that can be tolerated or managed. I am taking Vitamin D3, 50,000 IU, 1x a week for 12 weeks & then we’ll retest to check the levels. My calcium tested within normal range. I’m not currently on meds for the high cholesterol since my GP was keeping watch on the levels which are just into the high range. I did request an Oconotype DX DCIS test. That was another fiasco to get it ordered. I initially wasn’t sure which of my doctors ordered it so I started asking just before my lumpectomy. The surgeon told me the Oncologist ordered it, I saw her &asked but was told the Radiology Oncologist ordered the test. I saw her 2 days later & when I asked she was surprised the Oncologist told me that. I felt this test was extremely important, I was adamant that I get one & I’m 100% positive I didn’t “misunderstand” what my Oncologist told me. I sent a message to my Nurse Coordinator stating it didn’t matter to me which dr ordered the test, just please get it ordered. The Oncologist quickly messaged back stating she had to wait until the pathology report came through to order it but she did order it. Not what she initially told me so now I have trust issues & will probably switch, especially if the Cardiologist says I need treatment of some type. This is the last piece of information I need to help figure out which type of doctor would be the most beneficial for my healthcare. I’ll look for a Cardio Oncologist to manage all the meds if my Cardiologist visit in a few weeks indicates heart treatment is necessary. It’s been 2 weeks & I haven’t received a result yet. Does anyone know approximately how long it should take for results? I’m not even confident the test was even ordered. In dealing with all of this I feel like there’s enough stress we’re under & not having confidence in your team just adds to the stress.
This site is a blessing! I wouldn’t wish cancer on anyone but sadly, it’s somewhat reassuring to know there are 100’s of women out in the world that are on a similar journey & can share experiences with each other so we all know we’re not alone! Meanwhile, I’m enjoying this life & taking it one day at a time. 🌻

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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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