Aromatase Inhibitors: Did you decide to go on them or not?

@callalloo Genomic Health was acquired by Exact Science. I had breast cancer in 2014 when Genomic Health told me that 30 % of grade 3's had low oncotypes. There were clear definitions of low, intermediate and high.

The reason they told me this is that I had a grade 3, high ki67% (just over the line of high) and lymphovascular invasion. I also had had a positive HER2, two equivocals and two negatives with FISH. Highly ER and PR+. My Oncotype was 8.

It is easy to see why I called Genomic Health,

I was troubled by these contradictions and by the complete and utter reliance on Oncotype by my doctors, including the tumor board at a major cancer center.

Genomic Health told me that this discordance was not uncommon.

Rather than causing us to question the accuracy of the Oncotype, I think that this kind of situation proves its usefulness. With my pathology I would have had chemo for sure (and at first, Herceptin). I am 8 years out so it seems so far the Oncotype was right.

Again, I do not make things up. It is possible that stats have changed in 8 years. But the point remains: genomic testing is better than traditional pathology, with discordance. But ideally they agree. Patients like me need to make decisions and with grade 3, I went with the low Oncotype.

ps My 4th opinion doctor did a retest of the Oncotype and I got the exact same score.

The community forum on breastcancer.org is excellent.

I didn't imply that you were making anything up. If you got that impression, it is regrettable but it most assuredly wasn't intended. All I know is what I was told by Exact Science last year.

When I was making treatment decisions in the fall of 2021, and trying to understand the statistics behind some of the numbers showing up in research papers, I did question the Oncotype people a lot to make sure I really understood what I could infer from my test result. [I also wanted to know what I could not infer from it, e.g., recurrence v. "spread."]

As we know making sense of a lot of the stuff gets tricky because of the nature of the statistics from which the algorithm derives information. And there are varying usages of the word recurrence as well to make things even more confusing. I feel such compassion for people with a first cancer diagnosis and entering a strange world where even the language is hard to understand while still having to be the best medical advocate for oneself possible.

It is accurate for me to write that Genomic Health told me that 30% of grade 3's had low Oncotype scores. It is NOT accurate for me to write that 30% of grade3's have low Oncotype scores, since I have only been told that, and I have no proof. I am careful in how I write things.

I perused studies last night and cannot find one that supports that statistic, though I did find one that had 15%. In general, though I found that correlation between grade 1 and Oncotype was strong (and some grade 1's may not even need an Oncotype, according to one recent study, if the tumor was less then 1cm), and the correlation between grade 3 and Oncotype score was weak. I think I understand that, but will check with a doc.

I think the main point is that traditional pathology, which is used in cancermath and other online calculators, and used to be used in treatment decisions, is no longer the sole criterion. Oncotype and other genomic studies have enhanced and in cases like mine even replaced traditional pathology in guiding treatment. Many women are avoiding chemo for their early cancers as a result- including me. But that of course depends on me doing the 5 years of hormonal therapy- which I did.

Indeed it is. And it is formatted to give everyone's diagnostic history (type, grade, etc. -- with permission, of course) This forum is not like that, I think it is a real handicap to getting a true picture of the nature of the diagnoses of the individuals offering their posts regarding treatments. Unless people mention their status in the body of post, we have no idea what type of breast cancer they had: no wonder there is confusion about individual treatments, testing and needs for adjuvant therapies.

I want to relate my experience to those who are experiencing side effects from AIs. Most of you talk about body aches, muscle aches, bone loss. But there is another, which I ignored completely as an area of concern, and I would like to share my experience. I experienced vaginal dryness for months, and finally it became so unbearable (and didn't change with use of barrier ointments such as Aquaphor) that I found a top notch gynecologist (with no help from my oncology dept. I might add) and requested a biopsy of the area. It showed a skin condition, marked by itching, thinning and irritation that if allowed to continue would progress to cancer in the skin cells. Lichen sclerosus is another such condition, that needs carefully monitoring. End result? in a few days I will undergo surgery to repair this situation at a nearby university hospital. Simple physiology is that the skin, being an important organ in our body, if compromised over time, can be open to things we don't want, such as second cancers of an unrelated origin. Be well everyone.

@mdr3 I cannot "like" your post enough. I feel that we should all remember to post our type of cancer, size, stage, grade, ER PR, HER2, Oncotype, treatment and date of diagnosis on here. I have only done that when relevant and am going to start! People are reading these forums in a variety of situations, possibly lurking, and may be swayed by what we post when our situations may be very different from their own!

diagnosed 2/15; stage 1, 1.5cm, grade 2 or 3 (depending on hospital), ER 95% PR 80% ki67% 20, lymphovascular invasion (focal), Oncotype 8; two mastectomies (flat), 5 years letrozole; Breast Cancer Index indicated 5.7% risk and no benefit to extended therapy; Tymlos for bones

Ok! The problem here seems to be that we soldiers are fighting the necessary prescribed battles and literally begging for the hierarchy prescribing our future to focus, to listen to we soldiers in the trenches and help us get a grip on some definition and parameters on these very similar situations that are being dealt with in so many different ways.

I was 78 at the time. I have had a very similar experience as you. 6 mm invasive lobular carcinoma in situ. All margins were clear and negative for invasive carcinoma.

I was prescribed Anastrozole for 5 years. I had no notable side effects for the first year and then became aware of a variety of side effects of which some were manageable and others began to interrupt my quality of life and make me consider if I would need to quit my p/t job and made me feel vulnerable in my daily life involving my legs in general. I had NO issues prior to taking Anastrozole.

After back and forth with the oncologist and nurse oncologists I am currently on a 3 month hiatus. One month into this hiatus, subtle side effects have disappeared and the leg issues have ebbed significantly. My research indicates this might take longer to not be an issue. I am positive that the next 2 months will be significant.

Also, I was aware that brain fog was a possible side effect but had no idea how much it had effected me until I started this hiatus. It literally was like walking out of a fog. I was so aware and so grateful for that!!

This case is not closed for me! I will probably be prescribed Letrozole at the end of 3 months that will throw me back into what I call my intricate Sophie’s Choice syndrome.

Maybe prescribers went through this when mammograms were first offered as a path to breast Cancer diagnosis and prevention. Maybe it would help us if we knew we aren’t out here on this tree limb alone waiting so faithfully for how this possibility for a Cancer free life can be refined and be more specific.

The definition of pragmatic is:
Dealing with things sensibly and realistically in a way that is based on practical rather than theoretical considerations.

Is this a fair expectation for those prescribing us at this point?!

@ginip you are dealing with a quite small lobular in situ. What was your Oncotype, if you had one? Do you know the risk reduction you get from anastrazole? Is it small or is it significant? I also wonder about risk reduction per year (since you have done 1+ years). It sounds like you have a doc who listens to you and is flexible, willing to personalize treatment. I hope you will let us know if you decide to stay off or go back on!

First, I'm not going to share all the private information some seem to advocate for here. Even if 2 people have identical diagnoses, scores, etc. they are still individuals with millions of variables. Getting back to the general question of going on AI's or not I can tell you that I was on Letrozole without issue for 10 months before surgery. Then after 7 months of chemo and radiation I was switched to Anastrazole and started having side effects within 6 months. After crippling knee pain developed I switched back to Letrozole at half dosage and added collagen supplements. That greatly improved the joint issues, but I found myself struggling with other chronic pain, insomnia, cognitive issues, depression and anger issues, high cholesterol, fatigue (plus more that I only suspect). Then last November I was given the okay to take a 30 day vacation from this drug which made a significant difference in these issues, but going back on the drug found the big, black cloud descending quickly although it took several months for the insomnia to return. Three years in (out of suggested five) my oncologist has given me his blessing to find a schedule I can live with including stopping altogether. He'd prefer I stick it out for the full five years, but understands quality of life. Just having him give me the green light to take back control is everything. Four days into this current time off and I feel like a new person. Right now I'm thinking 2 months on, 2 weeks off. Hopefully this will be enough.