Anyone ER+ PR+ opting out of hormone therapy?

Hi butterfly3, We've been on the Jan surgery site together. I'm also hoping to decline/ avoid hormone blocking meds, about 15lbs overweight, 95% both ER/PR + and totally agree with you on overly aggressive tx for pre cancerous cells. I have not had much luck in past moving my tenacious belly but am attending a Unite for Her wellness day, part of which includes a talk from a registered dietitian and the option of scheduling a consult for a treatment plan. https://uniteforher.org/programs/wellness-days-the...

Given the side effects of the meds, I am becoming highly motivated to do whatever it takes to reduce that estrogen producing fat. One good thing is I love exercise. Hiking, biking, kayaking, zumba, yoga, tai chi, if it's movement I love it, sadly exercise alone seems not to deflate my spare tire at all. You can see if your doctor/ hospital is part of that program or if they may have their own version. Wishing your clear margins this time around.

Hi Butterfk3, I was 56 when first diagnosed with a small lump (size of pencil eraser), and was started on Arimidex. I was on it for a couple months and it felt like menopause on steroids. I could not stay asleep at night, so I decided to stop taking it. I also didn't like the idea of reducing the small amount of estrogen I was already producing.

My first surgery also had unclear margins, second surgery also had unclear margins, so I switched surgeons and practice, had third surgery finally had clear margins, but no cancer detected. I was left with half a breast and no one could answer why the supposedly unclear margin was not found in the third surgery. This last surgeon actually said that sometimes cancer just goes away by itself. wtf

I was given conflicting opinions on radiation, so I opted out of that as well. 18 months later I went in for reconstructive surgery and ended up having a bilateral mastectomy. There was no way to fix one side without having surgery on the other, so he asked if I ever consider prophylactic BMX. I had not, no one ever mentioned it. But after thinking about it and talking to some family and friends, I figured I might as well just get rid of my breasts and be done will all this constant worrying, surgeries, mammograms, mri's, etc.

It was the best decision I made, wish I did it sooner, I can't believe no one recommended it the time of the third surgery since the last one really was aggressive and destroyed my breast anyway. For me the surgery was not that bad. I was out of work for one week, only had pain the first day, then what I would call discomfort for the next couple weeks. Nothing that ibuprofen couldn't fix.

I am 11 weeks out since BMX, had implants put in 5 weeks ago (prepectoral with dermal flap) and I feel great. New boobs look ok, a little smaller and stiff, but they need time to settle. Apparently it takes 3-6 months. I am going back under in a couple weeks to swap them out for a larger size which is a quick 45 minute procedure. My plastic surgeon also recreates nipples (which I had removed to further reduce my breast cancer re-occurrence) and has a tattoo person on staff for the arealoa. I'll probably have this done in the fall.

Hope this helps, good luck on your journey!

I'm really happy to find this community and this discussion. I have just completed 3 weeks of radiation post lumpectomy for DCIS, clear margins, grade 2, E/P+. I'm 53 years old and not yet in menopause - still have periods which are growing in intensity each month. Labwork doesn't show any sign of menopause yet. They are recommending estrogen suppression and then femara. As I read all the side effects and consider next steps, I'm really struck by the "caught early, a good form of cancer to have, lucky" and then a monthly injection/infusion for 2 -3 years, along with daily medication. This feels discordant and I get the desired goal to not have a recurrence, but it is so unclear about the risk. I agreed and wilingly did the radiation.

Tamoxofin is off the table because I have uterine fibroids/polyps. What I read is Femara is better for side effects but the Zoladax is not symptom free. The issue that I'm struggling with is the monthly return to get the injection/infusion, and a "double whamy" of menopausal symptoms. I asked, how would you tell if my body was in menopause at some point and thus I wouldn't need the supression. I haven't been given an answer to that. I know this is all individualized, but I'm concerned with putting chemicals into my body beyond what is needed. I also wonder, why not get my ovaries removed. and avoid all this. I like the idea of focused weight loss and exercise. It is so hard to try and weigh the risks, consider what is right for me, my body. I suppose i can start and then reassess. This decision feels much more complicated then radiation.

Thank you Salamandra,

Your words provide such comfort. I have completed radiation and had no doubts about that. I will look at the other lists that you recommended. There is a disconnect between the front end and the back end that you validated for me. There is the worry of recurrence and I suppose that is why I'm seriously considering the medication but also wondering about having my ovaries removed to just attend to process since I'm almost 54.

I apprecaite it and this community!

I refused AI's but honestly, I'm still scared. I'm 65, had what my surgeon called tiny, 1cm IDC, grade 1, in 2003. Whole fat pad under my arm removed due to a failed sentinel node biopsy. 0/24. I had a lumpectomy followed by a re-excision for clean margins, chemo and radiation but refused Tamoxifen.

15 1/2 years later, I was diagnosed with what was again called “tiny" 1.3 ILC, grade 2 treated with mastectomy. I wanted both breasts removed and was told they wouldn't remove a healthy breast! This was at a major cancer hospital! I had DIEP reconstruction.

I refused AI because:

I already have totally replaced shoulders, if I get muscle or joint pain I don't want my orthopedic surgeon simply dismissing it because of the AI!

I have family history of Alzheimer's Disease and there is a link between low estrogen levels in the brain and earlier/ more severe Alzheimer's.

I have to work another 1-3 years before retiring and my job requires me to be on my feet all the time. I can't risk dealing with added bone/joint pain.

I for one am angry that this is the best researchers can come up with! I feel my doctors speak way too casually about the side effects of AI's and I believe there are not enough studies that show how they rob women of quality of life.

When it comes down to it, cancer never hurt me because it was caught early both times, but I am living with multiple health issues that are a direct result of the breast cancer treatments including lymphedema, mutilated body and wounds that won't heal.

I’m more afraid of treatments than I am of cancer. I had 15 1/2 years cancer free the first time, I am taking my chance that I will die of something else. Still scared, but less scared than I would be taking an AI

Hi Butterfly3, I am right there with you, I too hate taking drugs, but I do take two for blood pressure because I have high blood pressure and Vitamin D because I am Vitamin D deficient. I too prefer healthy foods and exercise over drugs. The AI is taken for a hypothetical reason, but that said, if I had positive nodes, and/or a much larger tumor or a grade 3 tumor I would have taken the AI. It's about applying information to one's self

Nothing in breast cancer treatment is a one size fits all. I really hated how cavalier my doctors were about the AI. My breast surgeon said “I don't think you will need chemo, but you may have to take a little pill daily." My OncotypeDX score showed chemo would not be helpful, but I spent hours researching Letrozole and decided it wouldn’t be good for me.

By the way, I never heard that IDC was not considered cancer, but I have heard that about ILC. I wish you well in your journey! Radiation was not good for me in 2003, I was severely burned. I’m paying the price for that now because I have wounds on my reconstructed breast that aren’t healing because of the damage done by radiation in 2003!

I'm so glad you started this conversation because we all need to remember that we are in charge of our bodies and it is up to us to “own" whatever treatment choices we make.

"Scientists do not yet know which will develop into cancer, but it is a small %."

Actually we don't know that. We don't know what % of DCIS will evolve to become invasive cancer. Yes, studies have looked at this, but the results are all over the map. For high grade DCIS, I've seen estimates as high as 80%-90%, whereas for low grade DCIS, the risk may be as low as 10%-25%.

Over the years I have more and more come to believe that low grade DCIS probably should be considered closer to being a pre-cancer than a cancer - more like ADH. High grade DCIS, on the other hand, can be very close to invasive cancer. In fact the risk that invasive cancer might be found in an area of DCIS is quite high when the DCIS is high grade, or when comedonecrosis is present, or when the area of DCIS is large. Overall, about 20% of DCIS cases (as diagnosed by a core needle biopsy) are upgraded to invasive cancer once the final pathology is in. The percent is much lower for low grade DCIS - probably more like 5% - which means the percent is obviously much higher for high grade DCIS. So in looking at DCIS treatment and risk, it's important that we specify what type of DCIS we are talking about. A single focus of 3mm of grade 1 DCIS is a completely different diagnosis than a 7cm multi-focal grade 3 DCIS with comedonecrosis (what I had; and my large area of DCIS did include a microinvasion of invasive cancer, so my diagnosis was upgraded).

Two other considerations. First, when DCIS recurs locally, as happened with Nicole, in 50% of cases, the recurrence is not found until the cells have evolved to become invasive cancer. Usually the diagnosis remains an early stage invasive cancer, but sometimes it can be more advanced or even Stage IV. That's very rare, but it can happen, as Nicole unfortunately found out.

Second, even if someone is diagnosed with a small, low risk DCIS, by virtue of having had this diagnosis, the risk in the future to develop a new primary breast cancer, in either breast, is now higher. In fact in many cases the risk of a new primary is greater than the risk of recurrence from the first diagnosis. This is something to consider when thinking about treatment. Rads won't reduce this risk, but endocrine therapy will, whether taken immediately at the time of the DCIS diagnosis, or sometime later (breast cancer risk is highest for women in their 60s and 70s).

Some cases of DCIS can be adequately treated with surgery alone. Other cases present a very high risk of invasive cancer without rads (after a lumpectomy) or a MX and endocrine therapy.

Edited to add: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5532880/ See pages 5-7 for some information about the risk of DCIS developing to become invasive cancer.

Nicole, thank you!

((((Hugs!))) to you too. I've been following your progress. It sounds like you are in good hands and have a lot going on.

Side effects vs. Stage 4 ....hrmmm.... you may not even have side effects that are bad. Last but not least...even if you don't take the therapy...do not underestimate the monster inside you...yes BC is a monster and when it decides to rear it's ugly head again...just remember it tends to go to bone and organ on recurrence. Those are facts.