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

The OncotypeDX test will give the odds of recurrence if one takes aromatase inhibitors AND has not had chemo or radiation previously for the cancer (the sample of which is tested by Oncotype, looking at 21 genes determined to be best predictors). To calculate the rough odds of recurrence if one does not take the drugs, one can double the risk given as it's thought that the adjuvent anti-hormone meds 'can' reduce the recurrence risk by 42-50%.

Google OncotypeDX for more info.

Thank you. Does anyone know the chance of recurring with radiation only and surgery but no hormone blocker meds??

ER+ HER2- DCIS is the most common breast cancer from what I was told and read.

I think 'DCIS invasive' is used as it describes this cancer, starting in the milk ducts, by location and category, but adds that some cancer cells were found outside of the duty. But contiguous to the main tumor. I'm guessing that most early-stage DCIS tend to become "invasive" over time.

A friend had a small non-invasive DCIS, Stage 0 that oncolgist(s) advised surgery and radiation for as the cancer was on the chest wall resting 'too close' to bone. So there are a lot of factors that play into diagnosis treatment. (Her OncotypeDX risk of recurrence was only 2% though. So she didn't do chemo or AI meds. She has rheumatoid arthritis and the AIs were hard on her.)

The point is that there are so many factors that come into play. I hope everyone gets a second opinion on this stuff as legitimate opinions can vary and be worth considering.

Exactly @callalloo. At the same time the decision on meds is complex and this forum offers a balance of opinions and experience. I just want to make sure that the point of view that is supportive of meds and reduction of risk, is equally presented.

I haven't come across a statistic for that treatment plan tho' someone might have guesstimated something. I wanted to know what the odds of recurrence are if one declines radiation and chemo and anti-hormone drugs but two oncologists told me that there are no really reliable statistics for that and that no such can be done because of medical ethics and law. That is, once a treatment is proven to be, by and large, beneficial, it would be a violation of U.S. law and ethics to create a study where a significant number of participants agree NOT to take that treatment.

@windyshores

I was replying to your query about 'DCIS invasive' and the not-common treatment for DCIS Stage 0 that a friend had. I don't see anything 'unsupportive' therein.

But if you can point to a recent post that, in your opinion, is a violation of
terms here, please let me know by private message.

I have always been an active, healthy person. On vacation last summer, I noticed a lump growing quickly. On my 63 birthday I was diagnosed with IDC, with skin invasion and lymph node involvement. I was immediately put on A1 (anastrozole). I was on it six months with the hopes of shrinking my 98% estrogen/96% progesterone/HERT2 negative diagnosis. Thankfully, this shrank my tumor by 1/3 and reduced the size of my lymph nodes. In May I had a partial lumpectomy (3mm tumor) and lymph node dissection (5/10 positive). I am in the middle of 28 radiation treatments with 5 boosters.

I hate AI therapy. I have gone from a person that didn’t take any medicine to a person that is taking multiple medicines. I stopped taking my anastrozole for two weeks before my surgery and went back on after surgery. I have hot flashes, feel joint pain, get tired more easily, and other side effects. My oncologist has guided me through dealing with them.

I DID see that pre-surgery AI therapy made a big difference in my surgery outcome. With 1/3 shrinkage pre-surgery, my surgery was less invasive than originally expected. I have also focused on eating a plant based diet and have lost twenty pounds. My oncologist has stressed the importance of doing weigh bearing exercises, walking, and being active. She has told me I would probably be taking AI for 10+ years. I can’t say I am happily embracing AI therapy, but for me, I feel like I have the choice of AI therapy or cancer. I have gone from stage 3C breast cancer to currently being cancer free. I am going to fight to keep that diagnosis with every tool possible.

Three months into AI therapy, I was wallowing in depression when I realized that I have grandchildren age 2 and 8 and want to make memories with them and my children for many more years. I have no guarantee that will be possible, but I decided I am personally doing everything within my power to make it possible. I am eating healthier than ever, being as active each day as I can be, and making more memories. I am taking anastrozole and actively dealing with any side effect that comes along. It’s not perfect; however, I still feel in control, and it is a good choice for me.

Everyone has a different journey and factors influencing each aspect. The survivors with side effects usually are the most verbal and influence others that are reading these posts for advice and reassurance. I have taken anastrozole for almost a year and have had side effects. BUT, I dealing with whatever comes my way because I have already seen the positive side of AI therapy and would rather take them than have a higher chance of going through cancer treatment again.

When I was first diagnosed about a year ago, I would read others comments and get very anxious. From what I read, I was very concerned about AI therapy and anastrozole in particular. It does have side effects just like any other medicine that is available. However, it has made a big difference through my cancer journey so far. For others making choices, make the best choice for YOU and not based on other’s experience.

Predict is for physician use only. Here is another tool: http://lifemath.net/cancer/

The trouble is, any predictions based on pathology may differ from predicted risk from genomic tests like Oncotype. My own pathology results included grade 3, LVI, high ki67% (but high hormonal scores) but my Oncotype showed low risk.

I did not have a OncotypeDX done. From the start my surgeon said he did not think I’d have to do Chemo or radiation. After the surgery when I saw an oncologist, they said know chemo or radiation but just Anastrozole. Later after being on this forum I asked my oncologist- Why no Oncotype test … 🤷‍♀️ I’ve forgotten what he said. It was my understanding it was a test to determine chemo/radiation. No mention of reoccurrence regarding the Oncotype test.

“For the first time in 3 1/2 years she affirmed that my digestive issues could be a side effect. Previous oncologist always said that digestive issues were not a usual side effect and thought it had other causes. “
My oncologist did the same thing. They tend to poo poo the side effects INSTEAD of listening to the patient! They listen and believe pharma reps more.