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

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

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.

@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.

@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.

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.

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!

hi @lauradahl. I had a low DX too, but did have 1 month of radiation. I was on letrozole for 6 weeks but went off due to joint pain side effects. Now I am on aromosin and starting to feel similiar side effects. Are you having any side effects from letrozole yet? What do you mean that relatives have "fallen between the cracks?

Yes, I have fatigue from the letrozole~ started taking it in the evening, switched to morning, back to evening..just not sure when best time is! Bones are a little achy, but nit too bad...as far as relatives...I feel that their regular physician and their oncologist could have communicated better and more scans done...to make sure their cancer was under control...I don't want to sound negative but being preventative is so important!

lauradahl - I'm sure pretty much everyone on this site would agree that during the first months and years after diagnosis and in treatment you worry about, well, just about everything. It's impossible not to do so. Sounds like you were early stage and you opted for the mastectomies (which I did as well) to reduce your risk as much as possible and I suppose I thought also, reducing worry because without breasts, it's quite a lot harder to get breast cancer. In my family, prior to my sister having lung cancer....there was no cancer and my sister and I are still the only cancer people in our entire family, so perhaps there is a genetic component and perhaps there isn't always. That said............your doctors will want to see you frequently in the first two years. My doctors do regular exams of my chest area (I didn't have reconstruction), they do blood tests and I'm due this year for an MRI. I have had ultrasounds as well. The best thing you can do is be very proactive with how you feel, any symptoms you might have and things that feel different (once your body has had a chance to settle in a bit). It took me two years to feel anything like my old self. I had a scar revision surgery after a year and they used some drugs I was allergic to and unfortunately I ended up with some odd symptoms from that for a while. I feel pretty good now but I still let my doctors know about everything that's happening with me so they can check it out.
Hugs

Thank you, Cindy~ your comments are reassuring~ we live in a rural area where our oncologist is 2 hours away ...so just praying that my follow up care will good! I have 18 aunts and uncles and first cousins whom have had cancer..half of the breast cancer relatives carried the BRCA genes and half did not carry the gene and still had breast cancer...I was negative for the BRCA but have a colon cancer mutation. Anyway, thank you again and blessings on your day!