Need Risk Reduction stats re AIs --MO doesn't have it

I have found that the MOs are reluctant to give recurrence rates as opposed to survival rates. Presumably because Predict is backed by hard data but there are not many studies testing recurrence rates for AI/no AI.

First MO said taking an AI will reduce my absolute risk of recurrence by about 5% (in my case from 12% post radiation to 7%). He said, in his opinion, a decision to not take it would be very reasonable as would a decision to take it. He offered me a one month trial to test for side effects.

Second MO said after lumpectomy, 25% chance of recurrence is reduced to 8% by radiation therapy. If 100% ER+ and 100% PR+, AI reduces risk by a further 1/3 - i.e. from 8% to 5-6%. As I am only 100%ER+, 5% PR+, my risk reduction would only be 1-2%. In light of possible severe side effects, he recommends no hormone therapy. No trial was offered.

Both my MOs (first one retired) gave me stats. You should get a second opinion, and possibly a new MO, if yours won't. Btw, can't remember the numbers, but my risk for recurrence was dramatically reduced with use of an Al or Tamoxifen. That's why doctors prescribe these drugs. It is not a conspiracy, lol!

I'm also uncertain whether I should begin endocrine therapy. I had a lumpectomy with the sentinel node removed on July 20. The breast surgeon went over the pathology report with me and thought that surgery alone was sufficient treatment, but said she had inserted a BioZorb during surgery. She used the BioZorb cosmetically but it could also be used for targeted radiation if I chose to have it. I asked for a referral to radiation oncologist to discuss the value of radiation therapy. She also gave the names of medical oncologists she would recommend if I chose to do that too. The radiation oncologist told me that radiation was optional for me. There was a 10% chance of recurrence but it would not be life threatening. If I chose the targeted radiation, I would reduce the risk to 1 or 2%. I chose to do radiation. I had treatments once a day on Monday, Wednesday, and Friday of the week before last and Tuesday and Thursday of the past week. I've had no side effects, none at all. When I had my last meeting with the radiation oncologist, he said he thought I could get on with my life without worry. I told him I had an appointment with the medical oncologist the next day. He said he would be very surprised if she recommended further treatment but seeing a medical oncologist fulfilled my "due diligence." He added that she was likely to feel she needed to recommend endocrine therapy to cover herself legally, but he thought actually having the therapy would be unnecessary. Yesterday I saw the MO and what a surprise! She told me I have a 15% chance of metastasis and endocrine therapy could cut that in half. I told her the RO had said I had reduced my risk to 1-2%. He said he was just talking a recurrence in the breast. The 15% referred to the chance of metastasis. The seems high to me. She wasn't clear about what factors were included in her prediction of the 15% nor why no one had mentioned it previously. However, she said if I didn't want to take the medication, she wouldn't push me. She told me to call her if I want to try it. Now I'm confused. Also, I'm about to go to Europe for two months. I had asked the breast surgeon and RO if I should postpone the trip and both emphatically told me to go and enjoy it. Now what do I do?

There are studies such as those already listed which compare Tamoxifen to no treatment. Tamoxifen comes out on top. There are studies comparing tamoxifen to AIs and AIs were found to be more effective (though only by a couple percentage points).

I have not read studies comparing AIs to a placebo because it would be unethical to deny treatment to the placebo group. I do not think anyone is purposely not replying. The statistics you seek just may not be readily available.

Generally, the statistic I see quoted is that your risk doubled if you choose to not take hormonal. If your risk was 2%, it jumps to 4%. If your risk was 10%, it jumps to 20%

No one can tell you what the best decision is. Triple positive does tend to be aggressive, but you have to do what's best for you. Best wishes; these are tough decisions

I didn't know that I had to change the stats to public. I hope they are visible now.

Sandy, I have been off AI drugs 2 years. That trigger finger is totally gone still have some mild arthritis pain and the darned ringing ear. Still it seems to be improving.

couragement...I will PM you since this subject is not well received on the public forum.

Hello my friends, I have not posted for a long time. I have taken Tamox for 2 years, and then Al for 3 years. I looked at all these calculators and I was wondering if one exists that would help calculate with 2 years to go, or 3 years done.... I would think that 2 years of Tamox and 3 years of Aromasin would be a good start (including chemo 4xTC) I have strong SE with Aromasin, and I also tried Femara and Anastrozole. Your thoughts would be welcome! Thank you. Love xxx

Surgucsl oncologists are experts in surgery. Radiation oncologists are experts in radiation. Medical oncologists are experts in chemo, hormonal therapy, etc. if RO thinks MO is inflating statistics, then ask him/her for a referral to annMO who will give you an honest assessment without inflating statistics. You need to make your decision with valid info that you can trust

Got scared and called medical oncologist's office. She knows I am about to leave for two months. She actually talked to me. I think there has been a lot of discussion within the hospital group about this. it's unusual for one doctor to contradict another. Now the medical oncologist says my risk is lower than she thought. Said she had mistaken the grade. Thought it was 3 instead of 1. She said I am low risk and hormone therapy is optional.

Thank you. That might be what I have to do.