Stage 1 lobular breast cancer, anyone no treatment after surgery?

@alegrianna I agree 2/ you in being tired before my diagnosis of ILC 2b ( b usually means it has spread to a lymph gland(s) OR in my case a large swath of tissue being ILC ) in late May 2025 after a breast reduction (38 DD to 38 BB) in early April 2025. I was referred to the Cancer Clinic in Ottawa in June and met w: a surgeon who basically gave me all the options —from doing nothing to double mastectomy. I chose a double mastectomy w/o any reconstruction and had that on June 7. I was only offered AI (aromatose inhibitors) but declined any of them because of BOTH potential side effects and the low possibility of ILC returning after total removal of breast tissue. I just turned 78 and am in otherwise good health. Please keep in mind that it is YOUR decision as to what you do regardless of what friends, etc. may say. Good luck!

@alegrianna I’m 79 and had DCIS 24 years ago: 2 lumpectomies, 30 fractions of radiation. Now ILC and surgeon recommended a mastectomy AND reconstruction. I said no thanks! That was last January.
I finally learned this week that it’s stage 1. Thank God I listened to the radiologist who performed the biopsy who said ‘just wait and be retested.’ He saved me a lot of stress, grief, and surgery!
Of course that was a personal decision and not one to be made lightly w/o rigorous research. Each diagnosis is unique. Blessings to ALL.

I, too, am not accepting any treatment after the removal of my lobular cancer. I am getting advice from my nutritionist and have drastically changed my diet. Quality of life is important to me and I don't want all the side effects.

Where did you get your information regarding the statistics?

I was diagnosed with stage 1a ER+ HR- lobular cancer 11 months ago, and chose to forego AIs for several reasons. I did 5 "zaps" of radiation and at that pount AIs would reduce my overall risk of recurrence by 1 in the next 10 years. My oncologist made the comment that there is a strong movement in oncology that we may be over treating esrly stage breast cancers. Also with the large amount of positive data coming in from human trials using SERDS for early stage breast cancers, I believe they will be approved for early stage use in the next few years. Their side effect profile is apparently far less severe and they are currently being used in late stage cancers. I realize its an individual choice and after carefully considering my options I am completely comfortable with my decision. All of our personal risk tolerance's are different and there is no guarantee either way. However I am an optimist and believe great changes are coming!!! Good luck♥️

@wyowyld I wasn't aware there was such a thing as being "completely comfortable" with any decision in this difficult situation we all find ourselves in, but you've managed to do it, so, good for you! I am also stage 1a & 72 years old & did the 5-day radiation. I'm going to start a half-dose (10 mg) of Tamoxifen this week & see how it goes. I feel I need to at least try, even if it's a reduced dosage. But I understand your point & as you say, I wish for all of us the best possible outcomes!

@jmab I applaud you for starting half-dose of Tamoxifen. I just started half-dose of Anastrazole after stage 2b ILC following surgery, chemo and radiation. The oncologist doesn't want to hear about my side effects (from Letrozole and Exemestane), so I'm simply reducing the dose and taking matters into my own hands. I do believe I am being overtreated as I am very petite and only need a tiny dose. I feel I need to try rather than take the risk of recurrence. Good for you!

I was diagnosed with invasive lobular cancer in January 2025 and underwent bilateral mastectomy after learning that ILC likes to come back. From a surgical point of view I had a 2% chance of return if I chose bilateral mastectomy and a 15% chance if I chose lumpectomy and radiation. I had the surgery and my tumor was HR positive HERS negative and grade 2 stage 1A because it was not in my lymph nodes. The oncotype score was 22 meaning I was not a candidate for any chemo. When I discussed it with the oncologist she highly recommended I take an AI drug for five years although she made it clear that with my markers. I still had a 8% chance it will return even after taking AI medication. I am 70 and very fit and active and decided to give it a try. Not every woman has all the potential side effects.

I have been on letrozole since April and have so far limited side effects from it. Initially I felt some joint pain and had a little hair shedding but that seems to have disapated for now. I still get periodic hot flash but they are manageable.

I do agree that less is better and if there is anyway I could stop the AI if new advanced treatments surface, I would hope my oncologist would recommend it. Meanwhile I am closely monitored by my cardiologist and my family doctor for issues.

I like all of you pray I found my cancer early enough and no stray cells found their way elsewhere in my body. Since invasive lobular cancer is called the sneaky cancer and likes to return to your bones, brain, liver or or elsewhere, it is important to stay vigilant about your blood work and any unusual problems you may develop.

It is a personal decision for sure and for now I am trying to stay positive and make the best of things. I do think diet and exercise make a big difference. I eat mostly plant based and organic and try to also eat for bone health since AIs can postentially decrease bone strength. I also stretch, lift weights, walk, do yoga for balance.

Sending positive thoughts out to all of you.

@brightlight66 thanks for the kind words! And, oh how I understand about oncologists "not wanting to hear" about side effects! I don't think younger people can grasp how precious these remaining years are to those of us who've made it this far. Being told at 72 to take a preventive medicine with side effects for 10 years (that may or may not work. Or even be necessary!) is brutal. Good for you, too, for advocating for yourself! I am definitely going to seek out another oncologist at some point, just for another opinion. But meanwhile, best of luck to us both as we trudge along on this unfamiliar path! I have really come to appreciate the resilience & grit of older women like us! Hope we both have a really wonderful new year, 2026!

WHAT what type of blood work is needed. YOU MEAN TO CHECK HORNONES LEVELS?. I can’t take the meds for medical reason but I read they are not so sure how much those hormones really help ILC.
For me it’s a risk either way😬. Did have a low score of 11 . And had lumpectomy and radiation. I’m 76 with osteroperosis and PMR and neuropathy on prednisone for over 3 years since the Covid shots. Just praying for the best.🙏for all of us