New member: stopping AI is a greater risk of reoccurrence?

Posted by suze25 @suze25, Aug 30 5:13pm

I am 76 and was diagnosed with breast cancer on March 31st. My cancer was found in a backwards way. I had a clear mammogram in December 2024 and breast reduction surgery in February 2025. A 3 cm tumour was found in the 1kg of tissue that was removed from my right breast. I am so thankful I had the reduction surgery.
In May I had sentinel node surgery and 6 nodes were removed and they were clear. Tumour is Estrogen+ progesterone +, HER2-; grade 2; onco score 9; no DCIS. I just finished 5 days of radiation.
Radiation oncologist said the radiation would reduce my risk of reoccurrence from 8% to 2.4%. (I’m pretty sure that is local reoccurrence.) Medical oncologist said taking AI would reduce my 10 year risk of dying from this BC from 8% to 5%.
I have an appointment with my oncologist next week to tell her if I agree to take Anastrozole. I am still undecided considering my age. It’s a personal decision but I do appreciate what members have written about their experience.
I have read anecdotally that starting hormone blockers and then stopping can increase your risk of reoccurrence. Does anyone know if there has been any research done in this area?
Thank you for sharing your stories. I am so pleased that I found this group a few days ago.

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

Profile picture for jlgc @jlgc

I am 76 also with DCIS grade 1-2. Started Anastrozole hated the side effects I had including the potential for osteoporosis…I stopped taking it 2 yrs ago. Yes it increases my risk but the 5 days of radiation decreases it. So that’s my decision and I am sticking to it. I would like to live out the rest of my days without side effects, feeling sick and too weak to walk or hike. I’m happy keeping my hair in place and my muscles and joints, for what they are without
aches and pain. Now if I was 50 I imagine I would have a different view. But here I am.;)

Jump to this post

I am 75. Not taking AIs would increase the 9 year recurrence rate from 3% to 6%. The oncologist said look at it this way. Do you want a 97% on your test or would you be happy with a 94%. I had IDC Stage 1 Grade 1. Oncotype score was a 1. I have no genetic mutations. My sentinel node biopsy was clear. I did opt for 15 days of radiation because I am hesitant to take AIs. I already have fibromyalgia, chronic fatigue syndrome, muscle and joint pains from neck and back surgery, and have had migraines since I was 12. I had another bone density scan and I have osteopenia (same diagnosis in 2009). I would prefer 9 more decent years of life and not 9 years of misery. I’m still working! One more visit with the oncologist for my final decision in two weeks.

REPLY
Profile picture for eleanorrigby @eleanorrigby

I can imagine how much relief you must feel, just to have made that decision. Have you already had surgery? Or were you only doing the AI?
That's one thing that bugs me, that if I have surgery, I am told I would still need to take the AI.

Jump to this post

My surgery was breast reduction in February. The tumour was found in the pathology after a clear mammogram in December. I had an MRI, sentinel node biopsy and 5 days of radiation. I’m done now and feel good about my decision.

REPLY
Profile picture for eleanorrigby @eleanorrigby

Ovarian cancer - had surgery, over and done but could come back. I'm not worried about that.
Lung - had surgery, had radiation, had immunotherapy twice. It's quiet right now and fingers crossed it stays that way.
No other cancer I have or have had is connected to one another.
Breast is the big problem. And that's because of the three locations in the one breast, so some types of treatment (like freezing the cancers) are not acceptable for me. And since they can't see the cancer right now, how could they possibly do a lumpectomy? I'm definitely not the expert, but I was told by one surgeon that they just make sure they do a mastectomy and get every bit of tissue to ensure they get the cancer. Not excited about that.
I am meeting with quite the expert in a week and hope I will feel more comfortable making one decision or another. I know there are some patients at MD Anderson who are taking a chance like I am right now. I have one friend whose breast cancer had metastacized before it was even discovered about 12 years ago. She was put on tamoxifen for TEN YEARS, and it recently stopped working, so she is now on Letrazole...about two years.

Jump to this post

Hi! eleanorrigby:

My heart aches and my prayer goes out for you upon reading your post... Life truly threw curve balls at us from time to time, and sometimes it seemed to be even cruel, isn't it?

I admire your perseverance of dealing with various cancers bravely over the years; indeed, I sympathize with you for trying to avoid surgery. However, I am no medical expert and I had already gone through my surgery to get rid of my IDC tumor on 12/26/2023, for as far as I understand surgery is the most effective way to get rid of cancerous cells from our body. I pray that when you finally meet the expert in a week, you'll get the best advice to make your informed decision with a peace of mind. In the meantime, if you haven't done genetic testing for cancer risk yet, please consider discussing it with your physician. I feel this is beneficial for our blood relatives, because early detection is the key to successfully treat any kinds of cancers. I am also encouraged by your taking Anastrozole for 2 years, and it apparently shrinks your cancerous cells significantly that the breast cancer went into hiding:) Wow! If I understand you correctly, your last MRI, US, Mammo done in June showed no sign of any cancerous cells, right? What great news to share with us! Thank you!

Best wishes for all on the journey ahead!

REPLY
Profile picture for lifetraveler @lifetraveler

Hi! eleanorrigby:

My heart aches and my prayer goes out for you upon reading your post... Life truly threw curve balls at us from time to time, and sometimes it seemed to be even cruel, isn't it?

I admire your perseverance of dealing with various cancers bravely over the years; indeed, I sympathize with you for trying to avoid surgery. However, I am no medical expert and I had already gone through my surgery to get rid of my IDC tumor on 12/26/2023, for as far as I understand surgery is the most effective way to get rid of cancerous cells from our body. I pray that when you finally meet the expert in a week, you'll get the best advice to make your informed decision with a peace of mind. In the meantime, if you haven't done genetic testing for cancer risk yet, please consider discussing it with your physician. I feel this is beneficial for our blood relatives, because early detection is the key to successfully treat any kinds of cancers. I am also encouraged by your taking Anastrozole for 2 years, and it apparently shrinks your cancerous cells significantly that the breast cancer went into hiding:) Wow! If I understand you correctly, your last MRI, US, Mammo done in June showed no sign of any cancerous cells, right? What great news to share with us! Thank you!

Best wishes for all on the journey ahead!

Jump to this post

That's very sweet of you! Yes, it appears that the Anastrozole shrunk the cancers into oblivion but I have several doctors that say "it's unlikely to get rid of the cancer." And I have several doctors who have said, "Well! Great news! It is possible that they won't come back!" So that's why I'm confused all the time since I am always getting different answers...surgeons, oncologists, etc. So I am really laying my hopes on the wonderful doc I am going to see in about 10 days. I just want her to clarify and I want percentages, etc.
I did do the genetic thing already. MD Anderson does them for people like me, if not every breast cancer patient. Can't speak to whether or not everyone gets the genetic testing. Mine was negative on all counts...there is no genetic link, nothing for my relatives to be concerned about in that regard. You are correct that my latest tests in June showed no sign...we simply see no cancer...but some doctors have stated that AI won't kill the cancer all together, but some say it can. So who knows?
Thanks so much for your kind comments! I'm glad you had your surgery and it turned out well! Thanks for your support.

REPLY
Profile picture for timely @timely

@spanz

Are you on MyBCTeam?

A friend on there posted about lowered doses and I posted about trying different manufacturers of the same AI.

Jump to this post

I don’t think I am. I believe I read the trying different manufactures on Facebook. And I heard the lower dose thing on a cancer podcast talking about a study / i did check it out myself but that was a couple months ago.

REPLY
Profile picture for janland @janland

I am 75. Not taking AIs would increase the 9 year recurrence rate from 3% to 6%. The oncologist said look at it this way. Do you want a 97% on your test or would you be happy with a 94%. I had IDC Stage 1 Grade 1. Oncotype score was a 1. I have no genetic mutations. My sentinel node biopsy was clear. I did opt for 15 days of radiation because I am hesitant to take AIs. I already have fibromyalgia, chronic fatigue syndrome, muscle and joint pains from neck and back surgery, and have had migraines since I was 12. I had another bone density scan and I have osteopenia (same diagnosis in 2009). I would prefer 9 more decent years of life and not 9 years of misery. I’m still working! One more visit with the oncologist for my final decision in two weeks.

Jump to this post

I understand exactly! One has to decide what will give them decent years of life...whatever we have left! That's what I am trying to decide. I think I have most of the AI side effects, which of course I weigh as opposed to surgery. No clue what I will end up doing, but I sure would like to hear a 94% or 97% change of perhaps another 5 years of life with just the AI and no surgery, and I would be fine with that!

REPLY
Profile picture for eleanorrigby @eleanorrigby

Ovarian cancer - had surgery, over and done but could come back. I'm not worried about that.
Lung - had surgery, had radiation, had immunotherapy twice. It's quiet right now and fingers crossed it stays that way.
No other cancer I have or have had is connected to one another.
Breast is the big problem. And that's because of the three locations in the one breast, so some types of treatment (like freezing the cancers) are not acceptable for me. And since they can't see the cancer right now, how could they possibly do a lumpectomy? I'm definitely not the expert, but I was told by one surgeon that they just make sure they do a mastectomy and get every bit of tissue to ensure they get the cancer. Not excited about that.
I am meeting with quite the expert in a week and hope I will feel more comfortable making one decision or another. I know there are some patients at MD Anderson who are taking a chance like I am right now. I have one friend whose breast cancer had metastacized before it was even discovered about 12 years ago. She was put on tamoxifen for TEN YEARS, and it recently stopped working, so she is now on Letrazole...about two years.

Jump to this post

May I ask how you knew it had stopped working?

REPLY
Profile picture for phonso @phonso

May I ask how you knew it had stopped working?

Jump to this post

It waqsn't mine...it was my friend's who stopped working and I'm not sure if it was her lab tests or what. But I'll ask her and let you know.

REPLY
Profile picture for phonso @phonso

May I ask how you knew it had stopped working?

Jump to this post

@phonso So I talked to my friend, and she said when she went for a checkup (MDAnderson), some key enzymes they watch in her blood started spiking which "indicated the cancer was active again." They changed her from Tamoxifen to Letrozole and her numbers went back down.

REPLY
Please sign in or register to post a reply.