Arimidex - Anyone Refuse to Take This?

Hello,

I am so sorry to hear of your daughter's death.

I, too, am hoping to hear from anyone who has decided not to take arimidex.  I had my surgery (lumpectomy) at the end of September and finished radiation in January.  My oncologist matter-of-factly handed me the arimidex prescription in November -- even before I started rads.  I still have not filled this prescription.  Given how lucky everyone kept telling me I was (DCIS and Stage I with only a 3mm invasion and clean margins) and given that I am already on cholesterol medicine and have some bone loss, I questioned the possible side effects vs. benefits.  (My mother-in-law died of breast cancer after having taken hormone replacement therapy for 20 years because they told her it would protect her heart and keep her young!  The news about how tlongterm HRT was not a good idea broke a couple of months after her death.)

I saw the nurse at the oncologist's office in March, and told her that I had still not started arimidex.  She said that, having already delayed that long, I would be fine in delaying until after I drove students to an out-of-state competition at the end of April. (I am a teacher and was afraid of arimidex "brain fog" while responsible for them.)

Well, less than 24 hours after my return from that trip, my extremely healthy, eat-right-exercise-every-day husband died suddenly and totally unexpectedly of a massive heart attack while on his bike.  We were planning on really talking over the "arimidex dilemma" that week . . . and now, I still cannot decide what to do and am still looking for information. I would love to hear from women who have decided not to take it . . . as well as women who took it for the entire five years to know what happened.  (Did they have hair  thinning, for example, and did your hair grow back in?  Did they have high cholesterol or weight gain and return to normal after the five years?  No one who has taken it and experienced side effects seems to write about what happens after the five years are up.)

Best wishes to you, Pam, as you make your decision . . . and thanks to anyone who can share their experience with us to help us in deciding.

Dear Pam and Pat,

I just noticed your posts and I'm so sorry to hear all that you have gone through with cancer and the loss of your daughter and husband. Given that your posts are approaching a year old, you're certain to have made your decisions regarding the use of Arimidex, but I wanted to let you know that I decided NOT to take Arimidex. I was diagnosed in Dec. 2011 with breast cancer - Stage 1, Grade 1, ER+PR+, HER2-. no lymph nodes involved, Oncotype 14. I had a lumpectomy that month and then completed 30 rounds of radio in March 2012. My oncologist is comfortable with my decision and I am, too, but have had a hard time finding other women who made the same decision. I decided that the risk of depression brought on by the re-creation of menopausal symptoms from taking Arimidex was worse than the chance of the cancer metastasizing. What did you decide?   

It will be 5 years since my actual diagnoses this year. It was the 2nd primary cancer in the opposite breast from the one I had 9 years prior. I didnt take Armidex or any anti hormonal drug and I am doing fine. Honestly, I am sure those drugs are helpful, but it was not for me. I was so depressed after treatment I could not bear to take a drug that could make me feel worse. At that point extending my life wasn't worth it to me. Now, 5 years later, I don't regret a thing. I am healthy although older. Doctor visits were routine and not worth the time either. They check for lumps and do some routine blood tests. When you are stage 1 or 2, grade 1 or 2, the prognoisis for ER+ PR+ cancer is so good I don't give it a second thought. I am more concerned about colon cancer as my dad died of that at the age of 69. So we each make our own decisions. You have to be comfortable with yourself. I know I am.

Tam....I refused to take Arimidex or any other anti hormone from the start for several reasons. The most important being avoiding the SEs of having no estrogen. Please feel free to PM me or ask any questions on this thread. Good luck to all

BarbienTC...I completely understand. QOL matters too. I doubt you will ever see anything scientific about not taking an anti hormone. All I can tell you is I refused from the start and have been doing several things to lower my estrogen naturally. The most important being losing 30 pounds and exercising daily. This has been shown to lower recurrence rates by 40 percent. I also take DIM in leu of an aromatase inhibitor and several other supplements. So far so good. Its been 2/12 years since my BC diagnosis. Please feel free to PM me if you want to talk. Good luck to all.

Are you still doing ok without the arimidex? I was diagnosed Stage 1 IDC grade 1 in January of 2017, did radiation and went off of Arimidex in October due to side effects....

I am also debating whether to take an AI. I'm 4% ER+, PR-, HER-. I don't know if the benefits would outweigh the side effects.

Brenda...I refused anti hormone therapy from the start. Ive been doing things to lower my estrogen naturally ever since. I'm over 3 years NED. So far so good! There is a thread o this forum on the subject. I lost 30 pounds and try to exercise daily. Tis had been shown to lower recurrence rates by up to 40 percent. I also take DIM in leu of an aromatase inhibitor as well as several other supplements. Please let me know if you want more details. Good luck to all navigating this complicated disease.

yes I was diagnosed stage1 ductal carcinoma grade 2 hormone pos her2 neg in Jan. Did lumpectomy and radiation. Said if I took arimidex I would have a 8% change of coming back in 10 years if not I have 12% chance I chose not to take it.

Hi Janice, I am curious where you got those percentages. Everything I have read says that antihormonals cut the risk of recurrence in half.

Peregrinelady,

I have been having scans every 3 months for the past year, but I believe they will stop now unless there is another reason. My lung lesions are gone and the liver ones seem to be cysts (haven't changed in size since last May)and the adrenal lesion is assumed to be adipose tissue.

Janise, you do not say who or what told you that, but I am guessing that you are misinterpreting your numbers from your OncotypeDX report.

An Oncotype Score of 12 would be in the lower range for risk classification. The higher the number, the higher the risk, and the lower the number, the lower the risk. It simply indicates an increment on a scale. It is my understanding that that would be the only (intended, stated) significance of one's Oncotype Score.

It is my understanding that the Recurrence Score in the Oncotype report is for the probability of distant recurrence (not locoregional recurrence) within ten years, assuming five years of treatment with Tamoxifen. It does not predict probability of recurrence without adjuvant endocrine therapy.

The purpose (and intended use) of Oncotype DX is to predict the likely benefit of chemotherapy in addition to the (assumed) endocrine therapy in a given case. It is to help guide the decision as to whether chemotherapy should also be included in one's treatment plan. It is not to predict the (already well known) likely benefit of (the assumed) endocrine therapy.

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"Five years of daily hormonal therapy pills was standard for many years. Studies showed that compared to not taking hormonal therapy, taking 5 years of hormonal therapy lowers the risk of recurrence by 50 percent or more during those 5 years. Tamoxifen continues to lower the risk of recurrence by 30 percent in the 5 years after treatment with it ends. Five years of hormonal therapy also lowers the risk of death from breast cancer by 30 percent during treatment and for 10 years after treatment ends."

Source: http://www.lbbc.org/news-opinion/long-after-5-years-hormonal-therapy-ends-risk-recurrence-may-still-be-significant

I , too, had an Oncotype of 12, but agree that age makes a huge difference. The difference between someone in their 50’s and someone in their 70’s making these decisions can’t be overstated. Thanks for letting us know your age so that other readers understand your reasoning.

Let me add not everyone has unmanageable side effects from these drugs. I was one of those people.

Diane

Thank you for your post I know at 70 and stage 1 no node or margin involvement I chose not to take arimkdex. I did lumpectomy and radiation. I am also comfortable about my choice. We have to do what’s the best thing for you! God bless everyone!