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

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.

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.

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.

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.

The community forum on breastcancer.org is excellent.

@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.

Exact Science developed, owns, markets and processes the OncotypeDX test. Genomic Health has nothing to do with the OncotypeDX as far as I know. But at any rate, I again spoke with Exact Science yesterday and they will get back to me with the correct numbers but reconfirm that it is not true that "30% of people with a grade 3 breast cancer get a low OncotypeDX" score.

I would add the caveat that the word low is open to interpretation and I don't know what actual quantitative value Genomic Health would consider "low." My concern is that such a result would be so unusual that it would almost encourage an jnference that the OncotypeDX is a sloppy model and discountable or unreliable.

But imagine having a grade 3 cancer and an OncotypeDX test of the tumor sample showing a very low risk of recurrence. That would be welcome news for a lot of people if, and only if, the test's protocol and model have been thoroughly examined and critiqued and found to have integrity.

Breastcancer.org incorrectly stated that the OncotypeDX test is used to predict whether radiation would be a benefit when, in fact, radiation is a variable that is not in any way considered or evaluated in the OncotypeDX model. The OncotypeDX is used to help oncologists and their patients decide whether chemo, or rather the risk and reward profile of chemo, would be of benefit. I have written breast cancer.org on several on occasions and as far as I know they still haven't corrected their text.

We have to make such serious decisions when we face breast cancer and few of us have the cancer-specifuc experience or education to do so. Yet alone do so dfairly quickly, That is why I think it's critical to get at least a second or third opinion with a with an oncologist. And, as with anything else that one reads online, double or triple check things because there are a lot of inaccuracies out there. And there's a lot of information that is simply no longer considered valid. The problem with online content is that there's relatively little original material and, for every bit of original material, there are hundreds or more websites immediately capturing that and adding it to their website.

So misinformation propagates exponentially. I think that there's no rest for the weary when it comes to due diligence on the part of the patient too try to become as well informed as possible.

Thank you for this info! This is very useful. I might still ask for the BCI.

How long have you been taking Arimidex?