HER2- and ER/PR+

I also have IDC er/pr+ HER2- . I am having surgery Thursday. I’m doing the lumpectomy with full reconstruction on both breasts so I guess partial mastectomy. I’m told I will get 16 rounds of RT after that. My mammaprint showed very low risk of recurrence so no chemo.

When I found out I had breast cancer, I wanted to know my plan and get immediate surgery/care. I was diagnosed at the end of August and did not get my treatment plan until the first of October. I had PET scans, CT scans, MRI, Mammoprint testing, a tumor biopsy, and lymph node biopsy. Then a node on my clavicle that showed up in one test wasn’t apparent on another. They did more tests to find out for sure. It seemed like a long time filled with extreme anxiety.

When I got my ‘cancer plan’ in October, it was for six months of aromatase inhibitors to see if my tumor and lymph nodes would shrink for a better outcome with surgery. I was not happy. But all my doctors stressed it was the best plan, so I went with it. I said I would do what was best, but May, June, and July were busy and sacred to me, and I didn’t want to jeopardize them. Well… the joke was on me. I had a partial lumpectomy and lymph node dissection on May 6. I followed with 28 regular radiation treatments with 5 boosts. I just finished those on July 22. Today I started taking Verzenio that has a new set of side effects. This was NOT the course I wanted!!!

However, my tumor and lymph nodes shrank by a third with the AIs before surgery, my surgery was 8 hours and had good margins and outcome, my oncologist has been my biggest cheerleader, and the radiation therapist and doctor were the most wonderful people I know. I drove 45 minutes each way to get to my treatments and they were painful and extremely fatiguing. But, they made the unbearable into a ‘good’ situation.

I learned that I can’t always have things my way. I feel like there were so many stumbling blocks between what I wanted and what was decided was best for me. Even though it was exactly not what I wanted and definitely wasn’t quick enough for me, it did end up being the best. I’m the person that wants immediate results and that was NOT the plan. I found I really had to step back and let the professionals decide what was best. It was a long process (almost a total year) but the worst is behind me.

Hang in there and have faith in the professionals. I’m glad you started on medication while you are waiting for surgery. I’ve learned so much from my journey but the main one is to have faith and be patient. Good luck!

I also have IDC er/pr+ HER2- . I am having surgery Thursday. I’m doing the lumpectomy with full reconstruction on both breasts so I guess partial mastectomy. I’m told I will get 16 rounds of RT after that. My mammaprint showed very low risk of recurrence so no chemo.

The OncotypeDX gives a 'risk of recurrence within 9 years' number, given as a % (probability) of recurrence, conditional upon taking aromatase inhibitors or tamoxifen.

It does not give a probability of recurrence if one declines anti-hormone therapy. One can however calculate that drug-free risk using industry estimates of the benefit of the anti-hormone drugs. The rough calculation would be to double that risk number to get rough idea of added risk of not taking anti-hormone therapy.

15% of people who take the OncotypeDX get a risk score of 3% or less with the majority of those cases also having had cancer-free sentinel lymph node negative biopsies. [I confirmed this number with Exact Sciences, the purveyor of the OncotypeDX, recently as there's misinformation on Mayo Connect stating that 30% of the OncotypeDX tests yield 3% risk of lower. That is incorrect.]

I asked Exact Sciences about the risk of 'spread' versus recurrence since the OncotypeDX (the test I had) doesn't specifically predict that. The answer is interesting and the person in the science section whom I spoke with is sending me more info. But, basically, the same TaylorRX data pool from which Oncotype based much of its algorithm (not a good explanation but to keep things simple) also included 'spread' as well as recurrence statistics. Inferentially, a low risk of distant recurrence correlates with, also, a low risk for spread from cancer site assuming clean margins. Cancer-free lymph nodes lowers that risk further. If only we could get 100% perfect data, decisions would be so much easier, sigh. But at least we have better tools than women even 20 years ago.

Thank you.