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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I am going to comment one more time regarding the cancer coming back somewhere else. I have now discussed this with 3 doctors at MD Anderson breast cancer center. DCIS is called that because it is in the ducts. DCIS does not come back in another area. Could you get another cancer somewhere else? Yes but it will not be from DCIS. I have questioned that to each doctor and they said if someone is saying that they are wrong.

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@kathyomaha55

Did they explain to you if it comes back - it may not be in the breast? It more likely comes back in the bones, brain, lung and liver. And that's why I decided to take the meds, But I'm only 64 and since switching to Exemestane, have only a few side effects. The joint pain is pretty much gone. I just wanted to make sure they told you that about re-occurrences.

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The pill doesn’t cross the blood brain barrier so the pill does not prevent brain cancer anyway. So the pill is useless for preventing

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@shelleyc

I am going to comment one more time regarding the cancer coming back somewhere else. I have now discussed this with 3 doctors at MD Anderson breast cancer center. DCIS is called that because it is in the ducts. DCIS does not come back in another area. Could you get another cancer somewhere else? Yes but it will not be from DCIS. I have questioned that to each doctor and they said if someone is saying that they are wrong.

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DCIS - means 'in situ' or within the duct. The cancer has not spread outside the duct......but DCIS can evolve into an invasive cancer that spreads outside the duct and further. It may or may not do this. If it does become invasive it can leave the breast via the lymph nodes most commonly and spread to other areas of the body. I think that may be what was being referenced?

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@cindylb

DCIS - means 'in situ' or within the duct. The cancer has not spread outside the duct......but DCIS can evolve into an invasive cancer that spreads outside the duct and further. It may or may not do this. If it does become invasive it can leave the breast via the lymph nodes most commonly and spread to other areas of the body. I think that may be what was being referenced?

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Yes - I had 2 tumors one was DCIS and one was IDC Invasive ductal carcinoma. And my lymph nodes were all negative. I'm just saying that is what both my surgeon and my oncologist told me.

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@crazydaisy

The pill doesn’t cross the blood brain barrier so the pill does not prevent brain cancer anyway. So the pill is useless for preventing

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I just googled this - study from 2016. Multiple studies have indicated that aromatase inhibitors (AIs) and tamoxifen can cross the blood–brain barrier and enter the brain. All AIs inhibit both ERα and ERβ activity.Jan 5, 2016 It suppresses all hormones - which make any remaining cancer cells grow. But I respect your decision. It's such a hard choice. I have friends who chose no radiation or AI.

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@colleenyoung

Hi @yahomich, welcome to Mayo Clinic Connect. What a lovely introduction to get to know a bit about you. After having had chemo, mastectomy, radiation, and now tamoxifen, I see you are considering and researching aromatase inhibitors. For that reason, I moved your message to this existing discussion called, "Aromatase Inhihibitors: Did you decide to go on them or not?" If you click VIEW & REPLY, you can scroll through all the fabulously informative posts by fellow members.

Good for you for taking control and walking and eating well.

Yahomich, I'd be curious to know, what have you been told by your oncologist so far about the different AI options? Is one being suggested over the others? Or is the choice completely yours?

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Hi, I have been pursuing different options with my oncologist. I think its different for everyone's diagnosis.. but i am ER+ and HER2-.. Right now I am on tamoxifen for 5 months and I can't really even tell I am on it. Maybe a little joint tightness in the morning but that could be because I am working out. This is what I was told by my Mayo DR. 50% odds of reoccurrence with tamoxifen alone. 42% my ovaries are shut down (induced menopause or menopause) and 40-39% if take an AI versus tamoxifen. What other said line up with what my doctor said. He said that cancer has many make ups in the cells, they treat whatever is dominate (example ER+) but some cells may survive that don't respond to the medicine we are taking and that is how a reoccurrence starts. I am going for 10 years of tamoxifen if I am able to tolerate it.. I was also told he would rather have me take 10 years of tamoxifen versus 5 years of AI because of my age of 46. I have another question though.. does anyone have strong opinions on DIEP surgery versus Implant after radiation? If you did implants did you do both and why? I am really pondering those options now and any advise would be welcomed Sending you all blessings!

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I just had diep reconstruction a month ago. I had cancer in both breasts 11 years apart and had Lumpectomy and radiation for both. Because I found out I had a genetic mutation I decided to have bilateral mastectomy with reconstruction. I wanted nipple sparing mastectomy but my plastic surgeons did not go for that as there was significant damage because of the radiation. They did not want the diep flap to fail because of this. I had skin sparing mastectomies and the diep in one long surgery. I wanted the diep because I did not want to deal with implants which can also have issues. I have found the worst reaction to the surgery was being extremely tired but I think I have worked through that. Being under anesthesia for 10 hours has to take a toll. I have no regrets about doing the diep. My skin on my chest has sensation but my nipples have been removed and the tissue from the diep flap has been moved to my chest...that means you have to have some pudge going on...lol. I will soon get some final tweaking and construction of my nipples and then have tattoos.

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@kathyomaha55

Did they explain to you if it comes back - it may not be in the breast? It more likely comes back in the bones, brain, lung and liver. And that's why I decided to take the meds, But I'm only 64 and since switching to Exemestane, have only a few side effects. The joint pain is pretty much gone. I just wanted to make sure they told you that about re-occurrences.

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@kathyomaha55 is correct! It more likely comes back in the bones, brain, lung & liver.
In late 2008 I was diagnosed with intermediate grade ductal carcinoma. (Only 1 small tumor-lymph nodes negative)
Lumpectomy & brachytherapy radiation.
Tamoxifen until 2016 - I tolerated it well for 8 years.
All my annual mammograms were clear. THOUGHT I WAS A SURVIVOR! (10/2019 was my latest clear mammogram)
11/2019 I started experiencing severe lower back pain-MRI showed extensive lesions throughout lumbar spine. 12/4/2019 bone biopsy revealed metastatic invasive ductal carcinoma breast cancer. PET Scan revealed extensive lesions throughout spine, sacrum, rib cage, skull.
YES IT CAN COME BACK!
There are side effects with Aromotase Inhibitors BUT I believe their side effects are better than metastatic breast cancer!
I am now on IBrance & Letrozole-there are side effects but I'm learning to tolerate. These 2 drugs have slowed down progression.
Yes there are re-occurences! Talk to your Dr about Metastic Breast Cancer (MBC) & maybe get a second opinion!

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@djwc

@kathyomaha55 is correct! It more likely comes back in the bones, brain, lung & liver.
In late 2008 I was diagnosed with intermediate grade ductal carcinoma. (Only 1 small tumor-lymph nodes negative)
Lumpectomy & brachytherapy radiation.
Tamoxifen until 2016 - I tolerated it well for 8 years.
All my annual mammograms were clear. THOUGHT I WAS A SURVIVOR! (10/2019 was my latest clear mammogram)
11/2019 I started experiencing severe lower back pain-MRI showed extensive lesions throughout lumbar spine. 12/4/2019 bone biopsy revealed metastatic invasive ductal carcinoma breast cancer. PET Scan revealed extensive lesions throughout spine, sacrum, rib cage, skull.
YES IT CAN COME BACK!
There are side effects with Aromotase Inhibitors BUT I believe their side effects are better than metastatic breast cancer!
I am now on IBrance & Letrozole-there are side effects but I'm learning to tolerate. These 2 drugs have slowed down progression.
Yes there are re-occurences! Talk to your Dr about Metastic Breast Cancer (MBC) & maybe get a second opinion!

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I’m so sorry! Did you do any diet, take supplements or make any lifestyle changes, or did you take just the drugs to cure?

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@djwc

@kathyomaha55 is correct! It more likely comes back in the bones, brain, lung & liver.
In late 2008 I was diagnosed with intermediate grade ductal carcinoma. (Only 1 small tumor-lymph nodes negative)
Lumpectomy & brachytherapy radiation.
Tamoxifen until 2016 - I tolerated it well for 8 years.
All my annual mammograms were clear. THOUGHT I WAS A SURVIVOR! (10/2019 was my latest clear mammogram)
11/2019 I started experiencing severe lower back pain-MRI showed extensive lesions throughout lumbar spine. 12/4/2019 bone biopsy revealed metastatic invasive ductal carcinoma breast cancer. PET Scan revealed extensive lesions throughout spine, sacrum, rib cage, skull.
YES IT CAN COME BACK!
There are side effects with Aromotase Inhibitors BUT I believe their side effects are better than metastatic breast cancer!
I am now on IBrance & Letrozole-there are side effects but I'm learning to tolerate. These 2 drugs have slowed down progression.
Yes there are re-occurences! Talk to your Dr about Metastic Breast Cancer (MBC) & maybe get a second opinion!

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I'm so sorry to hear of this. After hearing all the information - I too decided any side effects were worth it to lower the risk of MBC. I hope the drugs help you for a long long time. I also have a friend with MBC and it's in her bones - she's hanging in there for 5 years. My thoughts will be with you.

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