Invasive breast cancer: What's next?

You stated that have Invasive ductal cancer stage 1 ,but then the path report said DCIS, which is a pre-cancer. Do you mean that there was an invasive tumour, also surrounded by DCIS?
Whatever it is, it is small with very good features...and the treatment would not be the heavy duty chemo for higher stages.

What kind of hormone blocker was being suggested? because of your age and you are menopausal, was it an aromotase inhibitor or maybe just Tamoxifen which is an estrogen blocker and fairly mild, but usually for younger women..

One thing I noticed was that both your sisters had higher stage breast cancer. Have you ever
had genetic testing for BRCA 1 &2? I hope your doctors are taking this into consideration when recommending treatment options for you.

I don't mean to confuse you, but treatment decisions are really difficult.
It sounds as if you have some conflicting opinions. If possible could you get an opinion from an academic medical center? Since you have a lot of information it might be possible to just submit your data and not have to travel.

....I had a small invasive Stage 1 tumour 34 years ago and a small area of dcis calcifications 24 years ago. I didn't have genetic testing as it wasn't that developed at the time. I haven't had any recurrences. Because my father and his brothr died of prostate cancer and that is a possible link to the Braca genes, I would probably be tested if that were now.

I wish you the best of luck ; unfortunate to have breast cancer, but fortunate that the features of your disease very very good.

It is so interesting how we perceive our medical treatments. In Nov 2022, at 57 yrs, ILC 1.8cm, Estrogen+, Her2-, I felt very fortunate to be able to skip chemo and proceeded with 19 radiation treatments. ILC is a bit tricky and I felt lucky to have it picked up on a mammo and have no nodes positive. I am very anxious about recurrence and feel the Letrozole is a bit of a safety blanket. I do not feel docs prescribe too much as if anything it seems to be me they are stingy with scans and overall surveillance as much research says mets are not helped by finding it too early - which is totally counterintuitive to me and I'm a Dana Farber. Please keep us updated on your second opinion today. We are all rooting for you. xoxo

I agree with what you say. I have been in a similar position, being diagnosed with DCIS, and being recommended radiation and hormone therapy. Did you have the Prelude DX test taken to determine if you would benefit from radiation treatment? My DCISionRT score determined that my 10 year invasive risk, with surgery only, was 4%. My 10 year invasive risk with surgery and radiation was also 4%. There was no benefit from having radiation done.

Often the testing that they do will say, you can cut your risk of recurrence in half with endocrine therapy. The fact that they were talking in terms of 10% or 20% leads me to believe this is what they were leaning on.
The choice is always yours but I believe that all endocrine therapies are not equal in all women. Just because your family struggled with side effects from the ones they took, doesn’t mean you would struggle with the one you might take.
The treatments are a numbers task, the trick is to reduce the risk of getting a recurrence without doing more harm than good. Only you can decide what is right for you in this cost vs. benefit equation. Age, working status, family, even hobbies have to be figured in.
I will say, that I would not refuse a treatment based solely on someone else’s side effects. If I felt I might benefit, I would try it and if it was awful, I revisit that decision.
I am hoping that you can find a consensus among these doctors for a stage of cancer and treatment recommendation so that at least you can feel confidence in the decisions you make. It is hard when the “experts” don’t agree.
I am rooting for you. Will you come back and talk about what you find out?

I've gone back and forth about whether to have both radiation and hormone therapy following my DCIS lumpectomy; lymph nodes were not involved at all. My pathology report was very good with clear margins after surgery and I was deemed cancer free. Its been recommended that I do both radiation and hormone therapy. I am 65 and I am leaning towards hormone therapy only. I am not afraid of the 3 weeks radiation treatment. I just don't want to expose my body to treatment that may not be necessary for a woman my age with the less than stage 1 DCIS I had. Was wondering why some people chose radiation over hormone therapy. Has anyone here just decided to do the hormone therapy alone. Any thoughts will help. Thank you and my best to you all.

Both my sisters and sadly several of my friends have had breast cancer. The hormone therapy seems to be (in their cases) the worst of all. Memory loss. Hair loss. Vaginal dryness to the extreme. Affects to joints and pain. Weight gain on and on. Not to scare you but this is my hesitation because my cancer is “removed” and very minor.
Today I’m meeting with a Dr out of my network to see her recommendation and I will report back
Good luck
🎀💝

Yes, like you, mine was removed and thus, I am really weighing the pros and cons of the different treatment types. You're doing the smart thing by seeing another doctor. That should really help. Thanks so much for responding.

I had a wonderful appointment with the doctor today. She explained in great detail the type of cancer I have and the size and severity and her recommendations of my treatment
I will have partial radiation due to the small nature and low grade cancer I will not have the hormone therapy as it is more of an over treatment and I am uncomfortable with the side effects (that both my sister’s experienced)
I feel a weight has been lifted and I feel so much better about my health
All her notes and our discussion has been forwarded to my new radiologist I meet on Wednesday
If you have low grade or DCIS I would get a second opinion if you can.
Also if you get a second opinion make sure the Dr has been researched in their field. I was fortunate enough to have one of the top doctors in her field that my dear friend arranged for me to meet
Good luck 💗💗💗💗

You are so right about perceptions. I went with everything they could throw at it and never looked back. ILC is a different animal for sure. It can hide (and DID) in my case. The skill of my surgeon at the time was key (clear margins) and knowing to take the 16 nodes (of which 10 were positive). Going in, we thought my cancer was 1a. Ended up being 3c. Fortunately, AI is agreeing with me. Dana Farber had a very nuanced approach to my care, and I'm looking at 8 years of the AI total (after 2 years Tamoxifen). Also had Zometa for 3 years. Didn't go to Dana Farber until I wanted a second opinion on aftercare, and am glad I did. Diagnosed 2/19. Such a personal decision (especially what we decide to do as part of the survivorship phase).

I take Anastrozole daily … 18 mos now. I chose hormone treatment only and have mild side effects of joint stiffness and discomfort mitigated by yoga stretching and walking( joint movement). My cholesterol has not changed and my bone density ( mild osteopenia ) was completely stable at 12 months.

I thought I had some hair thinning from Anastrozole but it stopped and reversed after 3-4 mos. I now understand that it was a reaction from the stress of surgery and anesthesia.

It’s a daily dose. Many women have no or mild and manageable side effects. It cuts risk of recurrence for certain hormone based cancers. If your oncologist feels that it would benefit you why not try it? With a 50 hour half life it’s an easy fix if you find it to be intolerable.

I opted out of radiation. Research the TAILOR RT trial which is looking into the value of radiation for certain Breast Cancer profiles. I qualified for the trial as per my B Cancer profile. One arm of trial is hormone therapy alone. Ultimately I couldn’t participate for an unrelated reason but I chose to decline radiation based on this trial information.

Best to you and all of us on this unwanted path.