How important is taking hormone blockers after surgery for IDC?

Almost same scenario. Started with Anastrozole. After 4 months, I was in such joint pain I had to stop. Took a month off, then started Letrozole. Two months in, my joints, though less sore, were barely noticeable because my hormones were so whacked out. I’ll be 69 in December and I felt like I had traveled back in time to peri-menopause. Sleep deprived, moody (mostly sad), crying for no reason - you get the drift. So I stopped after 2 months and told my oncologist that my quality of life was too important to me. These drugs are all about recurrence for cancers that are cured, and the percentages are low. I’ve been given a 3 month reprieve without inhibitors and we’ll re-access and discuss options on Jan 3rd 2023. I’m pretty sure that I’ll decline another drug, especially since they can’t tell me precisely how the drugs are helping with blocking estrogen production, which bloodwork doesn’t show.
Good luck to you & I’m sure you’ll decide what’s best for you in your journey. 🙏💕

I am 67 and also had a small tumor. I had a lumpectomy followed by radiation , nothing in my lymph nodes. I have since been on Exemestane, Anestrozole and am currently on Letrozone. The side affects for me were all bad so I may try Tamoxifen next but am not very hopeful. The bone pain is better on the Letrozone but I am still very tired, have hot flashes and headaches. My dry eye condition is also much worse.I have considered not taking them at all but am scared not to. The ones that have no side affects are very fortunate. It’s depressing because I recently retired and don’t feel like doing much. Everyone is different. Good luck to you!!

You mention that you'll have to rely on your PCP for physical breast exam if you don't find a less-dismissive (my words) oncologist. I've always found ob/gyns to be very well-trained in checking for breast irregularities and lumps. Do you have one you like? If so, consider having her/him do the exams. And maybe refer you to a different oncologist.

After several biopsies, I was diagnosed with Invasive Lobular BC , Hr+, HER2-in both breasts in August 2021. I had both breasts and sentinal nodes removed in late October 2021. Nodes and margins clear. OncoDX is 11. I started letrozole in December. I developed severe carpal tunnel and trigger fingers in both hands, severe body and bone pain, trouble sleeping, and depression. I stopped after 5 months. My Onco suggested a short break. A nurse from her office was supposed to follow up after a few weeks. No one called so I took the summer off and did a lot of research. I decided to try building my immune system and using a natural compound called DIM
to try to suppress estogen. Along with all the supplements I have taken for years, I added Turkey Tail Mushrooms and a combination of mushrooms called Mycommunity, both from Host Defense. I added Mercola fermented turmeric and annato tocotrienols (a form of Vit E). Anyway, I just had my 6 month check-in with my Onco a few days ago. It took a few extra months to schedule. We discussed starting AI's again. I expressed my concerns about bone loss (I have osteopenia), thinning arteries in the heart, (I've had a heart attack) and the other issues I experienced. She said my chance of recurrance increased because BC was found in both breasts. That meant two breast cancers. She also said that if I wasn't experiencing side effects with the AI's, it wasn't working. She told my partner and I that if I stopped taking the AI's that she could only see me once a year for screening which is palpation of the chest area along the scar. (I did not go through reconstruction. One surgery was enough for me. I am 69 going on 70 this year.) She doesn't do any other screening. I will have to rely on my PCP for a 6 month intererval of palpation. I feel like I was" left out to dry" by my Dr. and my hopeful feelings dashed. It has been a week and I am trying to regain my sense of hope and resolve that I/We can choose what feels right for myself, my family and my quality of life. I am going to seek out a practitioner who will test my hormone levels. I do have a base line from a test my Naturopath did several years ago.

I am so disappointed in our traditional health care, and particularly healthcare for women. I can only guess that I am a lower risk patient than My Dr."s other patients. I will take that as a good thing. This is really my first experience with traditional medicine. I waded through it with my mother, and did not enjoy it. Good luck and blessings, as you move forward on this crazy journey.

@anjalima , I could not agree w/ you more about getting an MRI if one has dense breast tissue. My cancer was found by MRI after Mammogram saud all was ok. My doctor was proactive and he recommended the MRI so he could see what was in there - and found the early stage tumors

Yes, Callaloo it’s an incredibly scary statistic that 10% of BC is not picked up by mammo nor, apparently ultrasound ( which was my “ safety “ add on screening as I have dense breasts). Your mother is wise to suggest trusting your own body when something is “off” .

So, my symptom was loss of color to the otherwise pinkish areola when I raised my arm ( I was innocently and thankfully applying deodorant in front of a mirror one day). The areola became whitish, yellowish with arm raised but returned to my normal pinkish immediately when I lowered my arm.

Neither my extremely experienced breast doctor and surgeon nor her colleagues had ever encountered this. I was given an immediate mammo, ultrasound and breast exam which all turned up “ normal”.

I persisted until an MRI was performed and within two hours the radiologist called me in for a targeted ultrasound ( code for you are getting a biopsy… or two!) the MRI also picked up on an enlarged sentinel node ( which was biopsied and positive ). I had hoped that enlargement was from my recent Covid booster.

What was causing my symptom is that one of the tumors was occluding ( kinking) a blood vessel when I raised my arm. With no blood flow the areola lost its “color” . The plastic surgeon, who is also a micro surgeon, knew immediately.

My advice for dense breasts … GET AN MRI!

I remember when I received my results it was sorted such as say for example age 20-50 a score of 0-20 doesn’t need chemo and 50-up a score of 0-25 doesn’t require chemo. I’ll have to try to find it. I do remember reading that for my age 68- the score was 0-26 and my score was 13 so I escaped chemo. I’m going to look for my test results and the explanation that was with it.

It's dismaying to read that two tumors were missed but both mammogram and ultrasound, since so many women are relying on at least a mammogram to catch cancer early.

If you don't mind sharing it, what was the symptom that you detected and fueled your persistence. And kudos for that persistence, by the way. My mother was a doctor who stressed to her children to pay attention to, and know, your own body as knowing it well might save your life one day.

I don't remember the cut-off between low and intermediate risk for the OncotypeDX but will try to find the report with that information. I'm not certain what you're referring to as "different margins for 50 and up" but the OncotypeDX looks at the genomics of the tumor tissue. I'm not aware that it takes age or other demographics into account. It might, but that's not my impression.

OncotypeDX results can be surprising. There is one case, I believe still on their website, of a stage 4, large tumor cancer that showed a very low risk of recurrence. And a stage 1, DCIS with a very high risk of recurrence. This is interesting to me because oncologists looking at the biopsies might assume totally different risk profiles for these tumors based on their experience. And might be inclined to underestimate the risk for the stage 1 DCIS or inadvertently undertreat it.