How important is taking hormone blockers after surgery for IDC?

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.

I don't know that we get breast cancer because of any hormone 'imbalance'. I'm not saying that it's not accurate but I've never been told that by oncologists or my Ob-Gyn, or read it in any reliable studies, and have had hormone testing through the years. If a simple hormone imbalance were the triggering agent for breast cancer that could make the search for a cause a lot easier. And we could all be monitored for hormone balance annually as a safeguard. And insurers would happily cover it.

My impression is we get breast cancer because there's something causing breast cancer. One oncologist cited the fact that Japanese women, living in japan, have a far lower rate of breast cancer but, within a generation of moving to the United States, have the same elevated rate that we have. Clearly the women's genetics aren't modified by moving to the United States so something else is the causative variable.
Diet will be part of the answer but most first generation Japanese Americans do not modify their diets from what they ate in Japan so that leaves environmental and maybe food contaminants as a likely suspect but not yet proven as my guess.

I read a book by a female physician and Harvard professor who noted that the female body is designed to protect the fetus from toxicities and stores anything that it can't deal with, or excrete or rid the body of, in fat cells. That is, one job of fat cells is to store bad stuff and keep it out of the bloodstream. Her point was also that when dieting, or going through any kind of change of eating habits, that is critical to drink a lot of good-quality water and also pay attention to any symptoms of discomfort and monitor liver and kidney enzymes.

Since fat is a storage of contaminants as well as, as one doctor put it, an estrogen factory, fat plays a role in many cancers. (Which is alarming to read for someone, like me, who's been a lifelong serial dieter fighting against easy weight gain.)

So we have the biology for procreation and protecting offspring and the downside consequences of that if what I've read holds up.

At the same time, this argues that a change in diet that both increases nutrition, is weighted towards foods so far known to be antioxidants and natural anti-inflammatories, and losing some extra fat stores, seems like a strategy that can only do us good. And will likely boost immunity in myriad ways as well. As my brothers' doctors stressed when he was dealing with myriad health challenges, food is medicine.

I don't know if you're oncologist was just citing her own personal policy or what, but I would feel the same way as you likely.

I go to Cleveland Clinic and my follow-up recommendations from the oncologist were the same whether I took the aromatase inhibitors or not. I see him, and the breast cancer surgeon, once a year for an annual checkup and mammo and ultrasound review, and also him, or another doctor well-skilled in cancer detection, every 6 months for a physical exam.

But I wonder if you shouldn't see another oncologist and get another opinion. It might be that her recommendation that you do anti-hormone therapy is really important. If you find another oncologist, maybe one that is more patient, no pun intended on, you can try a different aromatase inhibitor or you can try the brand name instead of a generic. If you have the same side effects, you'll know that you at least tried another option.

In the meantime the other efforts with respect to diet and supplements can only help so that's good too. But having a doctor that feels as if the two of you are a team is important too.

callalloo, you are right, "cause" was a poor choice in words. It probably came from my continuing explanation ("Why did I get cancer?") and justification ("Why should I take this aromatase inhibitor?") conversation in my head. Actually, the hormone imbalance language derived from Block's Life Over Cancer: "...a tumor is merely the most obvious symptom of an altered, unbalanced system...this biological imbalance creates an environment for cancer to recur: tumor cells use the body's own healthy resources to grow and multiply." (p.2-3) He argues for using every defense possible to make one's biochemical terrain hostile to cancer cells after the tumor has been removed. The reduction of estrogen is, unfortunately, a main strategy in treatment of ER+ cancer. I say unfortunately because I believe in the power of estrogen for heart, mind, bone, and general body well-being. That said, yes our contaminated environment undoubtedly triggers our cancers and an anti-cancer diet changes our biochemistry in a good way.

I'm sure that many of us have and will. To misquote whoever first said it decades ago, "We're all in this together alone."

Can a CT scan see a tumor or mass?

I saw my radiologist today for a 10 month checkup. We discussed AI's and how most women (including me) do not want to take them. He advised me that lumpectomy with radiation puts an ER+ breast cancer woman back to the starting point. But, remember, we who have had BC have a hormone imbalance that caused breast cancer to begin with. Our odds of a new primary are higher than those who have not suffered our cancer. While research shows that radiation improves our risk of same breast, ipsilateral, recurrence, hormone blockers improve our risk against new primaries and metastatic cancer. So, it seems that we have some ability to effectively change our estrogen environment with diet and exercise, still, there is no validation that alternative measures will thwart recurrence, new primaries, and/or metastasis. In his own family, my radiologist said, his mother had BC twice after stopping endocrine therapy following a high grade DCIS diagnosis. She had an initial lumpectomy with radiation, then a mastectomy after recurrence, and more recently a second lumpectomy after a new primary in the remaining breast. We all have to weigh our personal risk and SEs vs benefit of taking these drugs. The same goes for radiation after early stage IDC and DCIS. I chose hyper-fractionated radiation over none, given my early stage IDC pathology; and tamoxifen then anastrozole over none given my high estrogen count. I know these are hard decisions for all of us!