Aromatase Inhibitors: Did you decide to go on them or not?

Hello everyone~ I am new to this discussion but happy to be a part of it.I was diagnosed with stage 1 invasive ductal carcinoma 2 months ago..had a bilateral masectomy and reconstructive surgery at the same time as surgery...have a very strong family history of several types of cancer...have been on letrozole for 6 weeks...I had the oncotype DX test which scored 11 so was told chemo would probably not help me..so did not have any chemo or radiation..I have to say I am a little fearful that cancer may show up in my body somewhere else...what kinds of labs or scans do you have and how often do you have them? I have had a few relatives that have "fallen between the cracks" and really want to prevent that..so thankful to have a conversation with you!

Welcome Samy! Hoping you find the exchange of information from this board to be as valuable as I have found it to be. We’re all in this journey together-our diagnosis are each unique to us individually, but I have found the support of other women who are breast cancer survivors to be invaluable. Yes, the side effects of medications we must take are not pleasant. However, the alternative risk of recurrence of cancer is also dreadful! I have learned from this journey that I have a choice of a living with side effects of the meds, or living with the fear of a higher risk of cancer returning. Neither of those options is a ‘good’ choice. So far, I have chosen to live with the side effects of the meds and the inconvenience of a somewhat lower quality of life, rather than living with increased the risk of recurrence. Cancer changed my life completely and unfortunately there is no going back to the security of having a healthy body that I had previously. It sucks, but that’s reality. And the bottom line is there really isn’t much we can do about it.

@samy
Samy - don't be afraid to try the AI...not everyone has bad side effects. I had headaches for about a month and then they stopped. Yes, you can get bone aches, but taking vitamin D3 will help with that as well as turmuric. I've started taking biotin to help with possible hair loss - I wound up getting the type that melts in your mouth and tastes like raspberry. I am 67 and have bronchiectasis so that all got inflamed with my chemo, but can be controlled. As far as radiation is concerned, follow your radiation oncologist's advice. Mine suggested using calendula cream 3-4 times a day AFTER radiation that day. I stuck to that but did get burns and blisters and then he prescribed silvadene which is a burn ointment and it really helped. So, again, everyone reacts individually - just take one day at a time. All the best to you in this wild and crazy journey.

@samy,- Good morning Samy. Maybe a serious face-to-face conversation with your Oncologist would help. I know I'm in this conversation not to make the decision to stop taking an estrogen blocker, but to exchange information with other women who have experienced the same side effects. At first, i thought it was just me, but now I know that my side effects are common. I'm trying to gather information to help me decide whether i should chose an alternative drug, but not to stop taking an AI altogether. I don't want to take the chance of a recurrence. These discussions are reassuring and comforting. I hope medical research on these various estrogen blockers continues and that one day they will be more easily tolerated. There are other forums in this set of breast cancer discussion groups related to breast cancer survivors and medications that you might find helpful, too. Best of luck to you, Samy.

Hello. New member of the club, here. Stage 1 invasive lobular on the left, LCIS right. Lumpectomy surgery couple weeks ago on both. The surgeon says radiation for a month and Arimidex for 5 years. I'm 68 and wondering if I should just do the radiation and screw the hormone stuff. Former smoker with mild COPD/emphysema well controlled, currently on BP and cholesterol meds that are doing fine. The internet research of Arimidex is the reason I'm here. … and frankly, you've all terrified me. Quality of life on any AI sounds like an absolute nightmare.

Not arimidex, but I went off of Femura, and felt better 3 days later. However, you took the AI longer than me. I had severe leg pain from Femura and I am taking a 2 week break

Did any of you who went off of Arimidex for a two week trial, have any negative effects from stopping them? I've been on Arimidex for 14 months and I'm having severe leg and knee pain. I have stenosis, but I was wondering if the Arimidex was contributing to the pain, so 4 days ago I went off of them to see if it made a difference. The leg and knee pain is still there, but In addition I'm now feeling almost flu-like symptoms. (No fever).

Is the CTS5 calculator the same as the Mamma Print test/ Has anyone had the Mamma Print test? Please google if you had not heard of it. Francine

Any side effects from Tomixifen?

Sorry to read that so many women have had adverse side effects from arimedex. Diagnosed with stage one BC, no lymph involvement, Followed by 28 radiation treatments. I have been taking Arimidex For the past eight months and have Experienced very few side effects. Some hair loss, mid day fatigue, Maybe some brain fog which might be due more to my age than the drug. I have no joint pain nor any other issues related to the drug. Maybe I have been fortunate or those side effects may still be in my future.