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Aromatase Inhibitors: Did you decide to go on them or not?
Breast Cancer | Last Active: May 12, 2023 | Replies (1190)Comment receiving replies
@windyshores I'm rethinking how much I can/should rely on the OncotypeDX 3% risk of recurrence if other genetic test providers come to different risk analysis results using the same tumor tissue. The big issue, in a sense, is that whatever my risk was before the tumor, it clearly wasn't zero as the tumor found some way past my immune or genetic systems. I also have the genetic marker for heart disease and stroke (runs in the family) and cannot take statins to reduce my high cholesterol so the coronary issue and DVT issues were/are a concern with the SERMs and AIs. I hope diet and exercise help as I've been working hard on that since the 'big surprise' of the biopsy result.
Replies to "@windyshores I'm rethinking how much I can/should rely on the OncotypeDX 3% risk of recurrence if..."
I had to stop all my drugs. The side effects made my life inbearable, swollen hands and feet, could not walk, short of breath all the time, dizziness, and on and on. I only got to take them for 6 months. I wanted to completely cleanse my body before starting tamoxifin, and it took a year and a half for me to walk unaided again. I didnt want to go back to that, and all the other mental issues attached, so I stayed off all drugs. I now have been clear for 2 years, walk 2 miles a day, (never walked before cancer) and feel better than I have in years. I eat a good starchy diet, no meat, dairy, eggs, or fats at all, no oil, I have lost 47 pounds so far and I am going to keep going. I follow the starch solution. My blood pressure has corrected and my cholesterol is better. Drugs cant always be the answer. I will take the 5 year promise and live a happier life!
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@callalloo the numbers on the various tests weren't drastically different but one test will say a 5% risk is low and one will say it is high. Just to be clear, Oncotype DX is for years 1-5, and says whether chemo is needed, and Breast Cancer Index was studied for years 5-10 and says whether extended anti-estrogen meds are of benefit.
AI's aren't known to cause DVT's and my cholesterol did not go up. At all. I had osteoporosis already when I started Femara. Seven years later I had a fracture and am on Tymlos but if I had started a year earlier I would be fine, and if I had been taking Reclast with Femara I would have been even better. In fact, Reclast and Femara together are strong protection because Reclast is used to keep cancer out of bones or for treatment when cancer is in the bones.
People seem to go through so much angst about starting aromatase inhibitors. I think this is where the Internet really does a lot of harm. Of course some people have bad side effects- every med causes side effects for some. I did fine and so did the 4 friends I know who were on them. Some had no complaints at all. I would go ahead and try one. You can start alternate days if you prefer, per my doc.
That difference in risk, basically 3% versus 6% is actually the difference between low and high risk on some of the other tests. But yes, every woman has a one in 8 chance of getting breast cancer in the first place. That is different from the risk now that we already have it, because now stage 4 spread is a possibility.