Has anyone been diagnosed with stage one a lobular breast cancer, had

I had stage 1a ILC. I am 66 years old and quite active. I had a lumpectomy and whole breast radiation.
I now am on Letrozole. I expected the worst for side effects from radiation , and they were minimal. 3 weeks on Letrozole and so far so good. I had opinions from MGH, and two from DANA FABER.
They all felt given my age, activity level that this was the best option. I am a nurse and feel I should trust the science. Best of luck with your decision.

I too was diagnosed with lobular cancer in Sept. Stage 1 B. I chose lumpectomy with radiation and opted for 3 wks instead of one because I want to minimize my chance of recurrence. Radiation went fine. I depended on this loop and got all the creams they suggested. My dermatologist and RO were amazed at how great my skin is. (soft and smooth) Any itchiness was quickly resolved. I used Fruit of the Earth Aloe Vera, Miaderm-L, Aquaphor and candula cream every 30 minutes continually. And to my knowledge I have no other side effects. May you do well with whatever treatment you decide on for yourself.

I had stage 1 lobular/neg nodes 12 yrs ago with radiation - tolerable. Took letrozole for years- biggest side effect was vaginal dryness. Did a lumpectomy. It came back last fall. Wish I had a mastectomy first go around. Just had both removed so I don’t have to deal with it again. Second time around stage 1 neg nodes again. I would be a little nervous not doing follow up care after surgery. It is pretty well documented that it helps.

I understand your concern. My situation is similar to @kakc19 Stage 1A in 2023 at 60 years old, and I’m active as well. I opted for the lumpectomy. My tumor ended up being a bit larger than expected, once they got in there for the lumpectomy. Because my risk of recurrence was low, and I had an aggressive travel schedule that summer, I was offered the option of a targeted radiation schedule — 5 treatments in a 2 week period. No side effects from the radiation other than some manageable fatigue afterwards (while touring the UK). I started Anastrozole after my trip, but developed a rash and was switched to Letrozole. 18 months in, and I’m fine, other than some joint aches and pains which can happen with these meds. As my side effects are few, I’m opting to stick with it for my peace of mind. It’s a sneaky cancer and can show up in unexpected places so trying to avoid that. There are several threads specifically on our type of BC which I’ve found helpful and informative. You can find them if you enter ILC in the search bar. Another good resource is the Lobular Breast Cancer Alliance. For me, I’m putting my faith in the science and the many doctors I saw who deal with BC daily, but we all have to make the choices that sit best with us. Good luck to you with your decision and your journey!

I just met with my oncologist and I am going with radiation and then I will be in a trial for 5 years with oral medicine. If I get into the trial I want it will be Tamoxifen every other day. I was open to that because of side effects.

I also had stage 1 ILC 2 years ago & went through the exact same thing. I am 72 years old. I ended up getting 5 rounds of radiation directed only to the spot. I fortunately never had any problems at all. I chose not to take any AI medications since the % of recurrence are so low & I am very active and did not want any side effects. I still do my mamo & oncologist visits every 6 months. I figure at my age if the cancer comes back I will deal with it at that point in my life & hope the research continues to evolve. I wish you luck in making your decision, everyone of us is different and read everything you can to make the best decision for you.

Has anyone had a negative experience with an oncologist? I don't know how to handle what happened to me nor where to get help as the doctor is extremely defensive and punitive due to making a mistake in the diagnosis, refusing to discuss the error, and ultimately screaming at me & escorting me from her office. She also refused to give me my entire medical records with any mention of the mistake, as well as wrote up a scathing report about me - and it was all lies. I'm frightened of her and don't know what to do or where to go or who to talk to. Any suggestions, anyone?

Thank you! I appreciate your taking the time to reply. I meet with the radiation oncologist tomorrow and will ask her to help me clearly assess the data. I am leaning in the direction you took, and will continue to research and "trust" my gut. Good luck to you as well!

You are correct in looking at all your options. Risk versus reward. I'm 68 and would rather have a productive 5-10 years than one with loads of Dr. visits and treatments. Every person is different. Still on the path of discovery. Remember you can always change your mind if you decide to take treatment and stop and not take treatment and then decide that would be your path.
I believe there are so many decisions up front it is overwhelming. The decisions have left me in tears.
You are not alone.

You have a right to feel comfortable with your oncologist. I felt my original oncologist didn't communicate well about the risks of various treatments, so I changed to another oncologist. I'm so glad I did. She's a really good listener and was opened to any questionas or concerns. She wound up switching me from Anastrozole to Lestrozole, (which was a great switch, BTW). I'd feel comfortable reaching out to her about anything at all.