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

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

@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!

@wews Thanks so much for your kind and inspiring words. I'm 66 and same as you...stretch, walk, lift weights, do yoga and stay very active. Also I eat clean foods.
It helps me to know others are out there fighting the good fight and making the best of things. I am being monitored very closely for blood markers too. When I want to quit the AI's, I remind myself that Lobular is very sneaky indeed. So the half dose works for me so far and praying for better, easier treatments soon.
Thanks for the positive thoughts and wishes. Right back at you!

@brightlight66 thanks so much for your kind words! So happy we are in this together and staying positive. Could you clarify about the half dose? Do you only take Letrozole every other day or only 1/2 a pill every day and is this ok with your oncologist?

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

@wews I take 1/2 pill of Anastrozole daily. Apparently I've read that 1/2 pill every day has fewer side effects than 1 pill every other day. So, I just started 2 weeks ago and haven't told my oncologist yet.
When I first tried Letrozole every day and got Carpal Tunnel Syndrome and Trigger Fingers after a month, I asked my oncologist if I could cut down to every other day and he said to go ahead and try it. Because SO much Letrozole was already in my system, the reduced dosage didn't do much to lessen side effects, so I quit.
Now that I learned how sensitive I am to AI side effects, when I began Anastrozole, I began with 1/2 dose. So, it's a gentler approach to trying these AI's at half-dose instead of jumping right in. If all goes well with me with few side effects, perhaps I'll do full dose every other day. It's an experiment and even at half dose, the drug must be keeping my hormone levels low as I'm very petite.