Estrogen Blockers ??? Take it or don't take it ?????

I often feel that we're doing a real disservice to the newbies with all our frank talk about the POSSIBLE side effects of tamoxifen and the AIs. I know I was scared to death to take the first one - certain my life would be over from that one little pill. But you know what? Nothing happened. Knock on wood, 2 years later, I am still side effect free. I'm the same age as you, wonderingcancersurvivor, and you won't believe the things I've done in those 2 years. I painted the outside of my house, knocked down interior walls, remodeled a kitchen and 2 bathrooms, did several big landscaping projects and right now I'm in the middle of ripping up basement carpet and sanding off all the old glue. I refuse to let a little pill stop me. It didn't make me old, it made me determined!

What is it about this little pill that makes us so afraid? Dr says we need chemo - ok, if you say so. They say we need radiation. Well, I guess I can do that too. But that little pill leaves us quaking in our boots. Is it because we take it ourselves or that it's just the last straw in the whole scary bunch of treatments?

Everything has side side effects. I went into anaphylactic shock from over the counter Aleve, had horrible hives from prednisone and can't have garlic without hours of misery. We just need to be aware of possible side effects and discuss any issues we have with our MO so that we can take the best possible care of our own health. If one has debilitating side effects, then by all means, stop taking them. Quality of life is important. But don't just assume those issues without at least trying.

wonderingcancersurvivor, you asked about whether the pills help prevent a recurrance or a metastasis and the answer is yes. They are systemic treatments - in case any undetected cells escaped these drugs keep them from getting fuel to grow. My dr called it my insurance policy and I happily take it every day so I can thumb my nose at this horrible disease.

Thank you all for your experiences and perspectives.

I am joining this thread as I was just prescribed letrozole by my Onc. I had a double mastectomy on 3/29 and my pathology report was not what we'd hoped for.

I'm a little surprised that this was prescribed already as I have not yet had my Radiation treatments and I thought hormone therapy was the last treatment after chemo, surgery and radiation.

Didn't think to ask about it at appointment time.

Going to keep following and learning.

sbelizabeth, well said!

Simbobby, I started anastrozole before radiation. Didn’t want to stay another month without protection and wit stage 3 diagnosis.

Thank you Musial,

That makes sense as I don't start my rads until May 1 so they likely wanted a treatment in place in the interim.

Elizabeth- this is what I hope to learn here. Are these side effects simply an annoyance which is likely manageable, or are they intolerable to the point that you never have a good day or something in between.

Some people truly have no problems with these medications. Some have the bothersome "annoyance" variety. Some are quite miserable and suffer a poor QOL. And others finally quit.

You never know which group you'll fall into unless you try.

I could hardly wait to take Exemestane. If I read about SEs on here, it did not register. My fear/terror was cancer. Anything that would help me LIVE I was much more than willing to do.

Travel, sorry to hear about your stroke. That can be very frightening, my Mom had a stroke about a year and a half ago. Scared us all; she was so lucky we got her to the emergency room as soon as we realised she wasn't making any sense. She had a complete recovery. Now she takes eloquist. She never had breast cancer or any other health problems just high cholesterol and elevated blood pressure which are under control with meds.

I did AI drugs for 4 years and I am done. Still have pain and weakness in my right hip joint. I notice it at night. I am not on any meds, my blood pressure, sugar and cholesterol are normal. But those AI drugs really aged me. I sure hope the cancer doesn't come back, it has been 7 years. You never know but I feel so much better now I am off this stuff. This year I'll be 60.

Travel, can you take an Al? I don't believe they have the same risk of blood clots.

Travel- I had blood clots on tamoxifen too. MO discontinued it immediately and I was put on Xarelto for clot prevention and switched to AIs. What do they have you on for clots? Have you tried any of the other AIs?

Traveltext, you are a hero. Thanks for representing the masculine side.

i just passed my third year post surgery. I am grateful. I have tried ALL of the hormone blocker pills. I tolerated Tamoxifen the best but developed a blood clot while I had Covid so now I am on Aromasin. I am swollen in my legs like a blow fish. I am about to the point of giving up all these drugs and take my chances. This is awful. I am tired of a poor quality of life. I am going to die of something. I would rather enjoy whatever time I have left and not feel like a grumpy old, tired and dried up prune for the rest of my life. I find myself angry over this. I just want to be normal again.

ThIs decision is very personal and one many people will critique. It really boils down to your own diagnosis and comfort level on cancer returning (which it inevitably does). Personally, after three years of cancer I am deciding not to take anything with more side effects. I tried Tamoxifen and experienced terrible knee joint pain. As a runner and workout guru I stopped taking it. After three years of being a slave to cancer, I too am struggling with this decision. I am currently healing from my recurrence (diagnosed in 2018), a completion mastectomy and radiation therapy. I have decided to enjoy my six months before my reconstruction surgery free of any estrogen blockers or meds. Post radiation, my research and education tells me taking an estrogen blocker is to prevent any “rogue” cancer cell that could have broken off. I am alive and choosing to focus on reducing stress, returning to my workout regimen and being free from the shackles of cancer, including the medications everyone suggests. I want to enjoy whatever is left of my life on my own terms. Be what it may. 💪🏻

My mom had a mastectomy on the right side, and a couple of years later, another primary popped up on the left side so she had another mastectomy. She lived happily flat for 35 more years and died of generalized oldness when she was 96. Recurrence is not inevitable.