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Pros and cons of endocrine therapy

Posted by kbradtke @kbradtke, 6 days ago

My stage 1 breast tumor’s ER positivity was retested and this time it came up 60% positive vs 1-10% positive during the CNB. My oncologist ordered the onco dx test so there is some possibility that I might be eligible for endocrine therapy vs chemo. That said, as a post menopausal older patient I’m almost as fearful of the side effects of AIs as I am of chemo. I have read some posts here of patients who have had fairly significant side effects from anastrazol and others AI meds. I was wondering how many typically suffer from AI side effects and if anyone here might have opted for chemo in lieu of endocrine therapy?

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

trinhttt | @trinhttt | 5 days ago
In reply to @windyshores "@kbradtke back in 2015 I was told I had a legal right to symmetry. My oncologist..." + (show)
@windyshores

@kbradtke back in 2015 I was told I had a legal right to symmetry. My oncologist wanted me to have one mastectomy first to see how I handled it due to lupus and heart etc. I had the second one a couple of months later. They found atypical hyperplasia (precancer) so I was glad I did it. That breast was full of cysts! I like being flat to be honest. I would not have liked having on breast. I don't wear prostheses and clothes actually fit me better than before.

My endocrinologist at the time did not want me on Reclast but my oncologist wanted me on bone meds. The endo won out. There was concern about aggravating my afib. After cancer treatment I have done two years Tymlos which made my bones better than before letrozole. Then 4 months Evenity (most do a year, I kind of created my own protocol).

Now I am on Reclast but at a low dose due to kidneys and afib. I did 1 mg in June and 1 mg in Sept. I was due for another 1mg in Dec. but asked my endo to do a bone marker test called a CTX which showed my bone turnover rate was low. I asked my endo if I could skip the Reclast for Dec. and he agreed. I was told by the infusion nurse that a 2mg dose is not uncommon (usual is 5mg). So if the 5mg does not work for you, in terms of side effects, there are things you can do. I feel I am a little protected from bone metastasis but a full dose would be better in that regard.

If you do a Reclast infusion, hydrate day before, day of, day after (you can even ask for IV hydration). Ask for an hour long infusion, not 15 minutes. Use tylenol. I have read that 40% of women have a flu-like reaction the first time but not with second or later doses. I had a fever for 5 days, then fine, no big deal.

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My cancer is triple positive but may I ask you for advice. I was recently dx with osteoporosis most like due to anastrazole. I am also on kadcycla and zoladex because didn’t have complete response. Yes, I’m afraid of recurrence. There’s not much to do. I did fly to MD Anderson for second option when I found out my tumor didn’t respond to chemo. They agreed with my current treatment.

My onc would like to start me on zometa for osteoporosis. Would you recommend me seeing an endocrinologist to ensure it’s the best treatment for me.

Thank you,
UN

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1 reply
kbradtke | @kbradtke | 5 days ago

I wish I could respond but sm hardly an expert!! I hope you get some answers and ideas, either from others on this site or from docs you see. If you do find solutions, please share!! Wishing you the best!!

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celestebradham | @celestebradham | 5 days ago

I’m 61- (left breast cancer (2023)99%hormone positive HER-, couldn’t do an onco score because cancer was too small. Lumpectomy and reconstructive on both. I did 15 days radiation w/boaster. Then AI drug. I had a very easy menopause, but I couldn’t tolerate Anastrozole- went off for a month and felt back to normal. I am on exastamine. Took a while but I am tolerating it pretty well. I walk, yoga,pranayama and acupuncture, and am on a few supplements-I will say pranayama and acupuncture has made my fatigue go away along with everything else I do. My bone density did come back with slight osteopenia.
I was never offered tamoxifen. I’m at MDANDERSON in Houston. But I do want to ask about tamoxifen. Curious
I was told only 50% of people can finish AI therapy.

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windyshores | @windyshores | 5 days ago
In reply to @trinhttt "My cancer is triple positive but may I ask you for advice. I was recently dx..." + (show)
@trinhttt

My cancer is triple positive but may I ask you for advice. I was recently dx with osteoporosis most like due to anastrazole. I am also on kadcycla and zoladex because didn’t have complete response. Yes, I’m afraid of recurrence. There’s not much to do. I did fly to MD Anderson for second option when I found out my tumor didn’t respond to chemo. They agreed with my current treatment.

My onc would like to start me on zometa for osteoporosis. Would you recommend me seeing an endocrinologist to ensure it’s the best treatment for me.

Thank you,
UN

Jump to this post

@trinhttt most people on aromatase inhibitors like anastrazole seem to go on zoledronic acid, either Reclast or Zometa. They help with osteoporosis and also are said to have some protective effect in terms of bone cancer, or help with treatment. I personally consulted an endocrinologist. If you can, that is always helpful. But if there is a long wait maybe you could follow the oncologist's suggestions while you wait for endo.

The advice we all get is to hydrate really well day before, day of, day after- or even get IV hydration. And request a longer duration for the infusion, like an hour. The first time can bring a fluish reaction but after that it tends not to happen. Good luck!

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1 reply
trinhttt | @trinhttt | 5 days ago
In reply to @windyshores "@trinhttt most people on aromatase inhibitors like anastrazole seem to go on zoledronic acid, either Reclast..." + (show)
@windyshores

@trinhttt most people on aromatase inhibitors like anastrazole seem to go on zoledronic acid, either Reclast or Zometa. They help with osteoporosis and also are said to have some protective effect in terms of bone cancer, or help with treatment. I personally consulted an endocrinologist. If you can, that is always helpful. But if there is a long wait maybe you could follow the oncologist's suggestions while you wait for endo.

The advice we all get is to hydrate really well day before, day of, day after- or even get IV hydration. And request a longer duration for the infusion, like an hour. The first time can bring a fluish reaction but after that it tends not to happen. Good luck!

Jump to this post

Thank you very much.
UN

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kimogi57 | @kimogi57 | 5 days ago
In reply to @kbradtke "Wow, thank you for all that information!!! I will definitely try to get an appointment with..." + (show)
@kbradtke

Wow, thank you for all that information!!! I will definitely try to get an appointment with Otto Metzget!! I’have loved my med onc at MGH/Newton Wellesley but I saw her when I was well. Now I’m wondering if she is the right person to see?? I had a regular CAT scan but seems like I should have had an FDG PET or FES PET. I will have to have a mastectomy as this is my second go but asked if I should be getting rid of my L breast as well. (Was told by current team not necessary). There were small calcifications in L breast which were thought to be due to reduction surgery but am now wondering!! Again thank you so so much!! I’m glad to hear you are doing well!!! Btw I was scheduled for reclast just before this dx but cancelled given the plethora of doc visits this last 2 months. Truthfully was a wee bit concerned about reclast given the potential for jaw/dental issues that can result. A friend of mine had one infusion of reclast but already has had a slew of dental stuff. Maybe not correlated but who knows?? Did you do reclast?

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I was diagnosed with ILC in my left breast only after the radiologist saw something in my right breast. He ordered an ultra sound of the R breast. The tech couldn't find anything so the radiologist recommended a MRI. The right breast ended up being calcifications, but ILC was found in my left breast. Luckily it was small and no nodes were involved. I had a lumpectomy because I wanted this C out of me asap. After studying about radiation and having suspicious areas on both breasts that needed watching I wanted them both gone. Initially I wanted them gone, but feel I was encouraged to do the lumpectomy. 6 months later another surgeon did the DMX. The pathology in the left breast found ILC insitu and both breasts had numerous precancerous areas. I took Anestrozol and Exemestane for a year and found the side effects to be more than I was willing to handle. Brain fog, pain in my feet, knees, hips and back to a lesser degree. I wish so badly I could have taken the meds. My ILC was found early and was fed 100% by estrogen and progesterone. My oncotype was 12 which is good. Because I am 67 I was signed up for a study on no radiation in my age group for those who had a low oncotype score and early ILC. I don't remember the size. This was Aug 2023. In 2021 I was diagnosed with ocular malignant melanoma. It was caught early and I'm watched b-yearly for metastasis. This cancer disqualified me for the study. I hope you have good results with the AI'S. The side effects that put me over the edge on continuing them were horrible mood swings. I was so mean to those I loved. They knew it was not the real me and put up with me, but eventually I would have been alone it was so bad. My oncologist agreed with me discontinuing the AIs. She said they were recommended, but due to my stage of cancer and their side effects I should stop them. I'll continue having yearly MRIs for my breast cancer and a stomach MRI and lung xray/CTSCAN for the ocular melanoma. It's been about 2 months w/o the AI's. I still have a little brain fog but feel much better!!

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