What is my cancer recurrence risk without aromatase inhibitors?

I know aromatase do have side effects that's hard.

It depends on your tumor size and characteristics. No exact answer but some on line tools can give you some information. Predict test https://breast.v3.predict.cam/

Cynthia P. — LONG POST —mathematically speaking, your chance of remote cancer doubles if you DON’T take the AI… zero times zero is zero… Um… my Oncotype DX was a 2, so I did the math — doubled is 4%, and add to that that AI stops working (after a few years) in 50% of people who take it… I was a few years post-menopause, and living in Ireland but getting treated in San Francisco (back and forth, a few months there and then here, depending upon my husband’s work), and this may have influenced how I felt on the AIs. The ONCO tried 1st one AI and then another (anastrozole and exemestane) — I was on an emotional roller coaster, When the ONCO suggested I try anti-depressants, I questioned the whole set up — in part because I wouldn’t be around SF long enough to properly set up the right drug and dosage. I then did the math and opted to forego AI and enjoy quality of life (I was 61). Fast forward 8 years and suddenly I have 2 bone mets and a few (cancerous) lymph nodes — that I only discovered by accident when I was getting introduced to a new Dr in Ireland. That was 2 1/2 years ago… took the better part of a year to determine I had bone mets, and 1.5 years ago I started on Kisqali (ribociclib) and the AI letrozole (Femara). Interestingly I am tolerating this AI better than I ever did the other 2 — maybe because I am that much further from menopause — I’m now 70. The best advice I can give you is to know that NOT doing AI will increase your chance of remote cancer a % or two. That someone has to make up that percentage — even me at 2% doubled or 4% — unlucky me. And that zero is not a certitude. Don’t let that discourage you. But do what I didn’t do, or what wasn’t offered to me. After 3-5 years ask and insist on a full body scan / CAT scan / local MRI (breast and underarm) — and find a way to repeat this at a logical interval. This is uncharted territory — there doesn’t seem to be a protocol for followup to those with double mastectomies… cancer can still develop regionally (locally) as well as remotely. It is a great shock to go from Stage 1 to Stage 4. Better monitoring is needed. I do not regret my decision to forego AI. I am extremely grateful they found it when they did, and that I am responding to the Kisqali. If I do nothing else, I’d like others to learn from my experience.

I think that 1 in 8 women will have a recurrence and many will be mBC (not curable). Like me. So far 9 + years of chemo ... I agree with Jenny, I had a lumpectomy and had mammograms every year for 14 years. It can't detect MBC. They found it with a CT scan when I had pancreatitis. Too many bone lesions to count. It's not below my elbows or knees. Only 1 still lights up, but now I have 8 lesions in my liver. I choose to be happy and glad I can still be active with my grandchildren and kids.

Virginia M — thanks for the stat: 1:8 or 12% — I believe that’s for women in the US. Hard to find stats but it’s possible that then 30% of those women will go on to have MBC. TAKE THIS WITH A GRAIN OF SALT as I’ve only just stumbled across this info, but if anywheres accurate is truly sobering. Means monitoring (CT/bone scans) and MRIs are even more important. It’s easier in the beginning stages to focus on getting through — I did that in 1996 with a lumpectomy and radiation. Made it as far as 2008, same breast though the cancer was a different type. A failed DIEP flap, but that is another story. All good till 2015 when a third cancer, right breast and still yet another cancer type, was discovered. I honestly thought I’d gotten through it and had left it all behind, when we found the bone mets in 2023. What might have made the difference would have been discussions about likelihood of recurrence (even with a super-low ONCOtype DX score) and the appropriate scan — one that could find bone mets. As I’m now coming to learn (so take this with a grain of salt) even blood tests don’t work for finding bone mets. I’m clearly not over being angry, but hoping some of that energy will give others a heads up. Sorry to hear you ended up with so many mets AND pancreatitis — but very happy that you seem to be taking it all in stride and are grateful for what you DO have in your life. xoxox

I had DCIS in the right breast at age 49. Lumpectomy and radiation. At 52, I had stage 1 er/pr+ her2~ in left breast. DMX, immediate DIEP. I was already post menopause. Started letrozole. First month not too bad. Then the hot flashes really kicked in. About 3 an hour, around the clock. The crazy thing is I never had hot flashes while going through menopause. I started Veozah which reduced the flashes by about 80% initially but wasn’t consistent. Then I learned about the possibility of liver damage so I stopped taking it. I’ve been off the letrozole for 3 months and the hot flashes still haven’t stopped. I guess I need to try another AI just so I won’t beat myself up if something pops up later.

Sorry Cynthia that you’ve had to go through this twice. I was wondering about your DIEP experience?

Cynthia P … it wouldn’t hurt to try the other AIs on the off-chance another might work… I did. It didn’t. Didn’t try the 3rd, which is what I am on now.

Hi Wendy. My experience with the DIEP surgery was pretty great. One minor complication with cellulitis in the breast that was radiated three years prior, but I didn’t have any tissue death or anything. My boobs look awesome and I have a flat stomach again instead of an apron belly I hated. My belly button is super cute. Only thing is it’s been about 8 months I guess, and my stomach is still super tight. I don’t know if that ever goes away. Anyway, I had no pain after surgery, except the first day I came home I had major muscle spasms in my back when I stood up.

Talk to your oncologist about chances of recurrence. Mine said I have a 3% chance of recurrence with the AI and a 10% chance without it. After trying two different ones, I’ve decided to live my life with all the gusto I can, and if it comes back, I’ll deal with it. I just can not tolerate the AIs. Get is luck to you

Hi Cynthia. Thanks for sharing. Glad overall happy with it. Hope you can find a treatment/AI which is better tolerated.

I have had sleep, hot flashes with letrozole but changed my timing to right before I fall asleep. (was about 1-2 hrs before sleep). Much better. My oncologist suggested playing around with the time. Happy it is working.

Jenny S. I agree with EVERYTHING you said in your “LONG POST” to Cynthia P.!!!!! 💯% agree! In 2007 I was diagnosed with stage 1 IDC with no lymph nodes involved. I had four chemo treatments. (my tumor was a little less than 2 cm), 37 radiation treatments, and a five-year plan on Tamoxifen. I was only able to be on the tamoxifen for a year due to swelling in my feet and excruciating pain. I don’t know if toughing it out and staying on the Tamoxifen for the other 4 yrs would have made a difference, but I can’t help to think that it would have. I was trying to be the kind of mom I needed to be to an 11 and 6 yr old, and it was extremely difficult and exhausting. My husband was a HUGE help, but he’s an international pilot, so he was away a good bit. Another thing Jenny mentioned, and I’ve told many, MANY friends (and strangers) going through early stage BC is you HAVE to be an advocate for your own health! You DEMAND to have a PET Scan (my recommendation) or a CT scan at least 5 yrs (preferably earlier) from finishing your initial treatments!!! I wish someone had told me all of this with my first diagnosis! Who knows, but say I had had a scan 5 yrs afterwards, maybe there would have only been 2 or 3 lesions in my bones, and definitely smaller in volume, than the 7 lesions that took two broken bones before a PET Scan was even recommended to find out it was back. It would have still been stage 4, but I have no doubt there would have been less cancer, and much easier to treat. THANK YOU, Jenny, for having the exact same thoughts on this as I do! I’ve told my husband, and cried more times than I can count, how I wish I had demanded a PET scan 5 yrs after my first diagnosis. I absolutely love, and trust, my oncologist, but because insurance companies don’t want to pay for “checkup” PET scans, doctors don’t mention having them. But I DO know that doctors can write it up using other words, or other ways, recommending a “patient’s” need for a pet scan where insurance companies will pay. Sorry for MY long comment. 😆 I just want everyone to be proactive when it comes to your body and a cancer diagnosis!! Speak up and DEMAND actions that you feel are necessary to prevent your cancer from coming back or progressing! I pray for every person on here. We are all desperate for a cure. We all want our good health back. We all want to start our days NOT thinking about cancer. an amount of faith that my God is going to heal me! Yes, I know beyond a shadow of doubt that when I get to my Heavenly home I’ll be completely healed, but my faith is so strong right now that I BELIEVE He will heal me while here on earth. I don’t know when, but in my heart I know it.💝

My Oncotype was 16. (6% reoccurance with tamoxifen and 4% w AI) I’m still premenopausal so have to do Tam. I’ve been in cancer research for over 20 years and read all the papers to try and talk myself out of the 5 year recommended time on the meds (bc it’s a freaking LONG TIME) BUT the statistics on the many many trials, of all the drugs, all come down to AT LEAST 5 years, otherwise the chance of reoccurance significantly goes up. So jealous of an Oncotype of 0 The choice is absolutely yours but my constant worry is that one tiny cell that could have got away. It’s all it takes. I alternate mammo and MRI every 6 months and will continue to do so as long as possible. I’m so sick when I hear some women say their Dr won’t do scans or listen to their worries. You have a right to a second opinion and if the oncologist won’t do something ask your PCP! A good Dr will never get upset if you go to another Dr, if they do then good riddance to them and their ego!

Never heard of a zero on score what type of breast cancer did you have? Was it invasive? What size was your tumor? Very interesting

I had two oncologists that could not give me an answer that made sense for me to take it. I’ve decided no on the drug.

Ask your oncologist! I asked and mine gave me percentages for with AI and Not AI

@maureen it was er+ pr + her2 IDC. I can’t recall the tumor size but it was stage 1, no node involvement

I do not know who to address my concern because I lot of women responded to your question, but this site doesn’t let you ask questions to the other people responding 🥲. Anyway, I do not know how the oncotype has been analyzed in here! Why if you get an oncotype number of 2 you are doubling the recurrence? My information is that the number you get if it is lower than 24, chemo and/or radiation is not recommended. You also get a percentage of recurrence with treatment and there is where you can look it you have a 3% probability of recurrence, I guess it doubles without treatment. It is not the same, if you get an oncotype of 10 doubling to 20% of recurrence without treatment than getting a 3.2% of possible recurrence and doubling to 6.4%. The difference is huge!!! My question to people that have answer your question of a oncotype of zero, how do you come with your explanation? Where is the data to support your analysis? Because this is the first time I hear this! Thanks

Yes. The number of your Oncotype doesn’t compute into your reoccurance percentage. It has to do with the mutated genes. Some are worse than others. I used to do this type of testing and when I received my score I jumped through hoops to get my raw data and see how they come up with it. Mine was 16 and my reoccurrence is 4 (with AI) and 6% w tamoxifen

My onco type was a 6. Still came back 5 years later. I stopped tamoxifen just after 4 years. It was probably helping me. I wish I stayed on longer but nothing I can do now. Kisqali worked for a year. I was NED on 3 pet scans. Then this last one showed active disease back in my chest wall. Started second line but already changing it since we got a biopsy info and can target the cells better on something else.

Sorry to hear Natasha. This is scary. Mind if I ask if it was just local the first time around I’m assuming you weren’t on chemo with a 6. Do you know if it’s considered the same cancer? Just feel like staying on tamoxifen forever.

I would like to know that myself. Was on Letrozole and side effects hard. Went off.

Recurrence is so scary. I am praying for each of you. My doctor didn't do oncotype ,because it was so small. I'm lucky that I was imaging every 6 months. I'm just not confident with what aromatase inhibitors might be doing for me. It was small bur grade 2 and grew in 6 months between imaging. My aunts died from their breast cancer. My genetic test was negative in 2020. I'm looking into a study and another oncologist consultant. I like my oncologist but I think they are down playing my situation because my tumor size. They not looking at the whole picture of family history and that the tumor grew in 6 months. If I had been doing yearly imaging it would have been worse

Jennifer, G that sounds about right my onco score was 14 with 1 positive lymph node and my reoccurrence rate was 3 % in 5 years  not sure what happens after the five years