Looking for others with low risk, less than 2cm, IDC stage 1 grade 1HR+ HER2- on endocrine therapy
Are you like me? What endocrine therapy did you follow or are you following?
Pre- or perimenopausal, stage 1, grade 1, low risk, node-negative, no genetic risk, screen detected ladies, let's hear from you!
What were you prescribed and how have you changed it up over your therapy?
What has worked for you?
I've seen four oncologists with different ideas about what to take, and my current oncologist is willing to explore options. She's wonderful! But I'd love to hear from other patients.
At age 49, perimenopausal, for my birthday—so glad it was detected early—I got diagnosed with invasive ductal carcinoma in the right breast.
Stage 1, grade 1, 12 mm tumor with clear margins. No nodal involvement on MRI.
No genetic risk of cancer determined by genetic testing, and no first-degree relatives with history of breast cancer.
The tumor was detected entirely by screening—not even the doctors could feel it with palpitations, as it was deep in the breast but not affecting the muscle tissues. There were no indications the cancer was present until my annual mammogram and ultrasound, my annual standard of care for my small, dense breasts.
I had a lumpectomy with clear margins followed by 12 whole breast radiation treatments with 4 additional boosts to the tumor bed.
Sentinel lymph node dissection showed negative nodes with one of 4 nodes containing one isolated tumor cell, and all negative for micormetastasis. I understand the isolated tumor cell is controversial and not diagnostic. It might be a sign the cancer was on the move, but it also may have been pushed there by the radioactive injection they gave me that day to trace the lymph nodes for dissection.
The tumor revealed invasive ductal carcinoma with lobular features. No oncologist has said yes when I ask them if this means I have lobular carcinoma. Some oncologists are wary of the lobular features, as they indicate a potential for a more invasive disease, but nothing conclusive.
The Ki67 of the biopsy was weirdly high at 34% (two oncological professionals thought this was not accurate and had the pathology redone at different labs with the same results—might have been legitimate or might have been an irreversible staining error, the sample from the biopsy is SO small), but the tumor Ki67 was only 7%, which is low, and more to what all my practitioners would have expected. Ki67 is known to be an unreliable indicator, but it is still a data point.
Oncotype DX low, so chemo not indicated to be useful (1-2% benefit only), but showed a 6% distant recurrence at 5 years with endocrine therapy. My oncologist says she estimates this to be 12% without endocrine therapy, as Tamoxifen and aromatase inhibitors are touted to cut recurrence rates in half. Mammaprint also shows low risk (+0.005), although I understand Oncotype DX is the more accurate for this cancer. We did the Mammaprint in addition as we were hoping for an ultralow score, which would allow me to skip endocrine therapy. I have yet to discuss the Mammaprint results with my oncologist.
I am healthy, relatively active (though no athlete), have no children, and my BMI is 22 or 23 (and I have not ever been overweight, luckily, so far—I know that is not easy for many of us as we age). I am risk averse to the side effects of Tamoxifen, AIs, and the drugs that shut down the ovaries, as we all are. I am also risk averse to bone cancer and recurrence in general, like most of us.
My Breast Cancer Index states that I will benefit from only 5 years of endocrine therapy. I know I have it easy. But it is still 5 years.
The UKs National Health Service Predict tool, using the last 3 versions and chosing my best case to worst case scenario (negative nodes, low Ki67-positive nodes and high Ki67) shows at highest a 1.4% benefit at 15 years. (version 2 0.7-0.9% benefit, version 3 1.1-1.4% benefit, still in testing version 4 that takes into account smoking history {never} and radiation therapy 0.1-0.2% benefit)
Are all the risks of endocrine therapy really going to impact my recurrence rate should I choose to stop taking them if the side effects are detrimental? I need to work, my marriage needs to survive this, but so do I! I want to make the most informed decisions over the next 5 yeasrs.
Let's hear your stories.
Comments
-
What did your doctor recommend? As perimenopausal I assume tamoxifen.
1 -
lillyishere, I have seen at least 3 oncologists to discuss this stage of my treatment. So far, I have been offered everything from Tamoxifen, Lupron with Arimidex (an aromatase inhibitor), and adjuvant chemo drugs! It has been incredibly inconsistent across the board, and each oncologist says it is my choice, which is like asking a preschooler if they want to go to medical school. I do not have the knowledge to choose even though I am trying to understand why all these oncologists are so broad in their approaches.
One very quickly concluded I should get Lupron shots to stop my ovaries and pair the Lupron with aromatase inhibitors before my radiation even was scheduled. (I hesitated on this option when I found out the oncologist was retiring within the month, his office was impossible to reach, and that Lupron's toxicity limits the amount of time you can be on the drug.)
Another said a standard dose of Tamoxifen for five years, which seemed reasonable. He said there were no real side effects to speak of, except one woman he treated who felt like she might kill her spouse, so he changed her dose—yes, he actually said that as if it were an anecdote to laugh at! On my way out of the office his nurse handed me a list of side effects and contraindications and said, with wide eyes, that I needed to read this and reach out if I had questions, as the side effects had potential to be substantial.
The third, who I am staying with, is much more scientifically minded. She agreed with me we should get more information on my menopausal status before prescribing, has done multiple blood tests, and agreed to get the Mammaprint so we could compare Mammaprint to Oncotype DX in relation to adjuvant care options. She explained I have options to take nothing, take Tamoxifen (including low does Tam), or shots to deaden my ovaries along with aromatase inhibitors. She also is very keen on current literature and gave me printouts to read on a few chemo drugs to layer on to these treatments that can reduce my already small risk. She is very into reducing risk, which is excellent, but I worry about swallowing too many spiders to catch a fly.
0
