Aromatase Inhibitors: Did you decide to go on them or not?
Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.
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You are right: I was at best being approximate. The score can be 8, the risk can be 6 without meds, and the risk with meds can be 3, for instance. The Oncotpye gives score and risk and % risk reduction, which is approximately 50% of the stated risk, not 50% of the score (as I implied).
Other tests consider 5% "high risk." t is counterintuitive perhaps, but that is the case. In a room of 20, one person.
It is also good to distinguish between local recurrence and distant spread. Does Oncotype now do that?
For what it's worth, i looked at my OncotypeDX report and the risk isn't half of the score. The Recurrence Score (RX) Result is 9. And the Distant Recurrence Risk at 9 Years is 3% [if I take Tamoxifen or an aromatase inhibitor]. The oncologists I saw say that the current thinking is that the meds can reduce the recurrence rate, all other things being equal, by about 42%. That would make the 3% risk a 5% risk if I do not take Tamoxifen or AIs. Nothing about this BC journey is certain but I'm hoping Oncotype is correct or errs to the conservative on this.
What type of heart disease are you investigating? I have afib once a year and end up in the hospital each time with rapid heart rate with the afib. Femara had no effect on my heart. Is it lipids that concern you?
Thank you!
I'm so sorry to read about what you're going through. I chose not to take an aromatase inhibitor in part because I have the genetic marker for, and a nuclear family full of, heart disease. However, I question you doctor's thinking that a static could not work. My former (great) cardiologist invented the calcium store and has patients in their 90s who had their first heart attack in their thirties and are alive and active today. Please do search out some more proactive physicians. I had to do it after moving to a new area but it was worth it. I've had high cholesterol for a zillion years but the echocardiagram of someone decades younger. And I cannot take statins. The human body is complicated and fascinating and isolating a variable here and another there does not tell the whole story. Best wishes in getting a new medical team to work with you.
Thank you so much. I do plan for a second opinion; I will wear a heart monitor in about 2 weeks and the results could be significant to making a decision as to continuing the Anastrozle. Also planning on going to an independent lab for a second lipid profile. My insurance may refuse to pay for a second test and the independent is fairly reasonable in cost. I find it very difficult to be heard by some physicians and numbers don’t lie. I would like to continue on the drug if I can find a way to do so without getting heart disease. I have gotten some great comments about other options. Thanks again. Good luck on your journey.
@callalloo Yes, she did provide a reference regarding the beneficial effect of dried plums on the bone density of post-menopausal women. I believe it was the Florida State University study mentioned in this article: https://plantmedicines.org/dried-plums-prevent-bone-loss/
@gillooly, Your side effects from anastrozole sound horrendous. I just started this drug myself, with trepidation. Like you, I have had no early bad side effects, so far, just some leg cramping that I can deal with. Also, my most recent BP was 118/69, which I would like to maintain. Your estrogen level of 11.7 seems really low so that one has to wonder if estrogen blocking would be that helpful, which I think is reflected in your ONCO numbers. (In comparison, my estrogen is +98, PR +97, ONCO 8. and distant recurrence with AI/Tam at 3%, so w/o a hormone blocker about 5-6%) From what I understand, AIs reduce local, regional, and new primaries about 50%, and distant recurrence about 35%. Grade, size of tumor, surgical margins will all affect this risk. Are you going to get a second opinion for treatment? I did, and I found it helpful.
To clarify for you, the grade 2 refers to the s phase, or how many cells are reproducing at any given time within a tumor. This would be middle of the road, 1 being the least aggressive and 3 being the most aggressive reproduction in cells.
The 1a or 1b would be the stage of your cancer, this refers to how advanced it was, with stage 0 being in situ or encapsulated. Stage 1 would refer to a tumor 1cm or smaller with no node involvement. Definitely a preferable stage. Stage 4 being the worst meaning metastatic disease.
@windyshores is awesome at helping to decipher the tests. I am so glad she is here for all of us.
I agree with her and others about having a conversation about your endocrine therapy with your doctor. There are quite a few options that could be considered.
Thank you for the reply - it is helpful and restored hope. The Onco recurrence score was 16; the distant recurrence risk at 9 years with AI therapy is 4%. Quantitative Single- Gene Scores : 11.7 ER Positive; 5.5 PR Positive and 8.8 HER2 Negative. I had a lobular carcinoma with no lymph node involvement My surgeon rated the cancer as Grade 2 with a 5-year survival of 93%. The oncologist used a letter grading system rather than numerical; his grade was 1A or 1B. No lymphovascular invasion. The numbers on my Onco report do not seem to be helpful in predicting outcomes without the aromatase inhibitors. Tomorrow I will visit the website for clarification on the numbers. I appreciate your input. It has been very helpful and motivational.
Perfect answer and it helped me too. Thank you so much