Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

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@windyshores

You only have osteopenia. I had osteoporosis for 14 years w/out fracture.

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Regarding my comment "You only have osteopenia. I had osteoporosis for 14 years w/out fracture." Just want to clarify that I am not suggesting others wait 14 years to treat! I had med sensitivities and other health conditions that caused my endocrinologist to have trouble treating me. My comment was meant to reassure those with osteopenia or early osteoporosis, but not to encourage avoiding treatment when needed.

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@windyshores

Regarding my comment "You only have osteopenia. I had osteoporosis for 14 years w/out fracture." Just want to clarify that I am not suggesting others wait 14 years to treat! I had med sensitivities and other health conditions that caused my endocrinologist to have trouble treating me. My comment was meant to reassure those with osteopenia or early osteoporosis, but not to encourage avoiding treatment when needed.

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Point well taken. I'm still reading about osteopenia but, having compared a 2015 DEXA with the done in September, 2021, and seeing negligible change my PCP dropped his suggestion of Fosamax. I hope more doctors are comparing DEXAs over time and see if the rate of change is changing as that could be an important indicator. Also.if any result looks odd it could merit a sooner retest. There is variability among equipment, generations of equipment, etc., so differing results are possible for reasons other than a change in one's actual bone density. I look forward to tests that measure more than just density as it seems an inadequate diagnostic tool. A few studies are looking at whether patients should refrain from taking calcium for a period of time before having the test to yield a more accurate diagnosis in case newly ingested calcium shows up as bone but isn't (yet).

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@callalloo

Point well taken. I'm still reading about osteopenia but, having compared a 2015 DEXA with the done in September, 2021, and seeing negligible change my PCP dropped his suggestion of Fosamax. I hope more doctors are comparing DEXAs over time and see if the rate of change is changing as that could be an important indicator. Also.if any result looks odd it could merit a sooner retest. There is variability among equipment, generations of equipment, etc., so differing results are possible for reasons other than a change in one's actual bone density. I look forward to tests that measure more than just density as it seems an inadequate diagnostic tool. A few studies are looking at whether patients should refrain from taking calcium for a period of time before having the test to yield a more accurate diagnosis in case newly ingested calcium shows up as bone but isn't (yet).

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There is a lot of variation. I have tests that go up, then down, then up. You have to look at trends. I actually made a chart of all my tests, every two years, since 2002!

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@jaynep

This sounds very similar to my case. My surgeon, however, thinks she can revise the original lumpectomy. Surgery is scheduled for 4/29. I have an appt set for a medical oncologist and the rads doctor’s office is supposed to call me this week. May. I ask what caused you to skip the radiation? And do you have any side effects from AI?

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First of all, I want to send a hug out to you and let you know you are not alone and surrounded by so many women who are and have gone through this. I will be praying for healing for you on 4/29. I've just marked it on my calendar. You'd be surprised how prayer works. Well, it was a very personal experience for me with the Radiation, my numbers were low, but of course my surgeon encouraged me to go see the Radiologist, which I did. But what really changed my mind was I was not going against science or what may indeed be a good and recommended treatment, I really studied about it and with what I've seen in other women after the treatments, something said not to actively pursue it. Again, my numbers were low, less that 9% so I opted not too. Please listen to your doctor and look at your own situation, and you will make the best decision for you. I have been on Anastrozole for almost 3 years and I am a active 63 yr old woman, and I have had a bit of tiredness at the beginning, but no other side effects. My oncologist says I should be a poster child for Anastrozole. But because I am still working so much I really don't have time to think about any aches or pain, I'm of the mindset, mind over matter, but stay active, exercise and eat right, and get good sleep if you can. Please let me know how your appointment goes and I will be thinking and praying for wonderful things to happen. Love and Life

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@windyshores

There is a lot of variation. I have tests that go up, then down, then up. You have to look at trends. I actually made a chart of all my tests, every two years, since 2002!

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That's a great idea. I've created some simple spreadsheet for lipid panel data and charted the numbers. Every new doctor wants to put me on statins for chronically elevated cholesterol. Then I show my Agosten calcium scores, Endopat and echocardiograms charted over time (all really great results) so they drop the subject. I cannot tolerate even microdoses of statins without crippling leg cramps so I can only hope my body can function just fine with the mildly higher cholesterol.

I've found that doctors grasp the data faster if they can see the chart. That eliminates some errors from Inattention or too-quick scanning reports on a computer monitor. Also the computer data could is vulnerable to keystroke errors and corrupted files. I trust hard copies of original test results.

It's a lot of work taking a strong proactive team approach to our own healthcare, lol. The good doctors actually value patients who do though.

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@jaynep

This sounds very similar to my case. My surgeon, however, thinks she can revise the original lumpectomy. Surgery is scheduled for 4/29. I have an appt set for a medical oncologist and the rads doctor’s office is supposed to call me this week. May. I ask what caused you to skip the radiation? And do you have any side effects from AI?

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If there are cancer cells found, there may be enough for submission to a genetic testing firm that can give you its recurrence risk analysis. The result might help you and your oncologist look at a treatment path that seems appropriate for you, rather than relying more on the standard industry-wide protocol. Just a thought.nof course, I'm hoping none are found because none escaped the surgery the first time.

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@joanie760

Dear Sister Warriors, I'm just so encouraged by all of your words and experiences, and the connection we all share with this darned old breast cancer. I'm 64 years young and own my own business, so I'm so grateful to have the energy to rise and shine everyday at 6:00 am and work until 6:00 pm. Three years ago I got the same horrible news that each of you received- I'TS BREAST CANCER! After discussing with my doctor the next steps, and making a decision of how to proceed, I went to my car and just cried. I called my partner at work, and told him and there was silence, then he said WE WILL GET THROUGH THIS. I cried even more. My cancer was not an aggressive cancer, I had a lumpectomy, and after that, they found some cancer cells around the lumpectomy, so they suggested that I remove the breast. I asked about the other one and they said I would have to have a mammogram every 6 months, so I said take them both. I opted not to have radiation as treatment, but have been on Anastrole for 3 years now. I've changed my eating habits, I'm exercising more, and paying attention to my body instead of taking it for granted. I now am making time for me, and not just going through the rat race chasing the cheese. It is so important to make the journey mind over matter. If you think positively, you will beget positive reinforcement back. Believe in your healing, take care of yourself, be mindful of all your experiences, and know that each of us have each other to talk with, to cry with and especially celebrate those moments in life with. Make your journey count and the pains and anguish you face daily, will become less important than the accomplishments you make each day.

Love to all of you sweet sisters, blessings for calm, peach and happiness in each of your lives. God Bless.

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Did your cancer metastasize.? If not what is the reasoning for continuing with an aromatase inhibitor?

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@joanie760

First of all, I want to send a hug out to you and let you know you are not alone and surrounded by so many women who are and have gone through this. I will be praying for healing for you on 4/29. I've just marked it on my calendar. You'd be surprised how prayer works. Well, it was a very personal experience for me with the Radiation, my numbers were low, but of course my surgeon encouraged me to go see the Radiologist, which I did. But what really changed my mind was I was not going against science or what may indeed be a good and recommended treatment, I really studied about it and with what I've seen in other women after the treatments, something said not to actively pursue it. Again, my numbers were low, less that 9% so I opted not too. Please listen to your doctor and look at your own situation, and you will make the best decision for you. I have been on Anastrozole for almost 3 years and I am a active 63 yr old woman, and I have had a bit of tiredness at the beginning, but no other side effects. My oncologist says I should be a poster child for Anastrozole. But because I am still working so much I really don't have time to think about any aches or pain, I'm of the mindset, mind over matter, but stay active, exercise and eat right, and get good sleep if you can. Please let me know how your appointment goes and I will be thinking and praying for wonderful things to happen. Love and Life

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Thank you so much for your prayers and encouragement. They are greatly appreciated as is your sharing of your experiences. I will be praying for you as well.

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@callalloo

If there are cancer cells found, there may be enough for submission to a genetic testing firm that can give you its recurrence risk analysis. The result might help you and your oncologist look at a treatment path that seems appropriate for you, rather than relying more on the standard industry-wide protocol. Just a thought.nof course, I'm hoping none are found because none escaped the surgery the first time.

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Do you mean the oncotype dx test? Yes, that has been submitted. I see the radiation oncologist on May 9th and the medical onco on May 12. However, the hospital system here posts test results before you see the doctor and my score is 13 and there’s a notation that nine year recurrence with AI and Tam only is 4%. Not sure what all this means but I guess I’ll find out.

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@jaynep

Do you mean the oncotype dx test? Yes, that has been submitted. I see the radiation oncologist on May 9th and the medical onco on May 12. However, the hospital system here posts test results before you see the doctor and my score is 13 and there’s a notation that nine year recurrence with AI and Tam only is 4%. Not sure what all this means but I guess I’ll find out.

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I also want to thank you for your reply. It really helps.

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