​Stage 1, Grade 1, ER/PR +, thinking of refusing AIs

Hi, Marty--I can empathize with you fully, since I was in your situation more than two years ago: stage 1a, grade 1, no nodal involvement, and good clean margins, very healthy and active--just a bit older, 71. I rejected all hormonal therapy for a number of reasons. I didn't even consider doing an AI, which leads to osteoporosis and joint/muscle issues, as hiking is a passion of my husband and me, and the inability to be hike and be active would undermine any potential good that an AI might do. As for Tamoxifen, I rejected taking a drug that might "fool" cancer cells for a while but would give me blood clots (we do lots of long-haul flights) and/or a stroke, either of which would be far worse to deal with (and more fatal) than a recurrence.

The MO I saw (once) ran the Adjuvant Online! algorithm for me right after she told me that I was in excellent health, even for a much younger woman, but then when she gave me the results, I saw that she had listed my health as "fair." Hmmm! When I asked about that noticeable contradiction, she said that the algorithm only offers 2 choices, poor and fair. That seemed odd to me, as I know a bit about doing unbiased research, so I hunted up Adjuvant Online! on the Web and, after much difficulty wading through their website, I learned that it is a marketing arm of the pharmaceutical industry (the same folks who bring us the drugs the algorithm says we should take), and that all but one of the company's officers are MBA's and not physicians or scientists! RED FLAG! Instead, I used the unbiased algorithm (which uses all kinds of details from your pathology report) that I found at http://www.lifemath.net/cancer/breastcancer/therapy/ . This predicted that, based on my tumor data, I would gain a whopping 77 days of life expectancy if I do hormonal therapy and that my life expectancy at 71 would decrease from 86.4 years to a "mere" 85.7 years! The decision was a no-brainer for me, and I just continue my healthy diet, my workouts at the gym and my hiking, and keep my vitamin D level up.

Like your MO, mine said her job was to advise, not to force, and that I was free to make up my own mind. When she told me my Oncotype number (12), she actually agreed that my decision was not unreasonable for my situation.

Good luck with your decision. The best advice I can give you is what my PCP said, "Whatever decision you make, be sure it is one you can live with later." Two plus years out, I have no regrets, and will just deal with a recurrence, should I have one, if and when it happens. TG

As my BS said, you can always try the drugs and see how the SEs are for you.

I was Dx'd @ 46 when I was pre-meno and I had a lot of concerns about taking tamox. I took it for 2 years, and the daily SEs weren't bad at all, but I had bone loss and stopped. Then...my BS found a lump in my "good" breast. Thankfully, it turned out to be benign but that experience caused me to face the reality that I could have a recurrence or even a second primary (as my RO said, BC survivors are at higher risk for second primaries and adjuvant therapy is the only thing that protects the other breast). As it turns out, I have a friend who was Dx'd with melanoma and since it was caught early they said she had only a 4% risk of recurrence. Unfortunately she was in the 4% and the cancer progressed and eventually she died (right before my BS found the lump). So I'm back on tamox. I'm also grateful that I have the option to take these pills. Not every type of cancer can be treated this way, so some patients finish active Tx and that's it. Everyone gets to decide what's right for them, but I realized that I'm in the "better safe than sorry" camp.

I'm on aromasin, and don't really have any joint issues (right now -- sometimes, the SEs only show up years later). I do have mild hot flashes that I call warm flushes. And, I have had some sleeping issues, though to be fair, I had sleeping issues before I was diagnosed with BC. My cancer was aggressive and fast-growing, and 95% PR+/ER+. For me, doing hormonal therapy is a no-brainer. If I were Stage 1, Grade 1, I might think differently.....

peggy j is right -- you can always try a drug and see what the SEs are like.

MartyAZ22,

Whether or not to take an AI is indeed your decision. No one can force you to take a drug you don't want to take. I will, however, say that many of the women who continue to post on this site about AIs are the ones who have experienced debilitating SEs. Those who haven't had any problems don't post. According to my MO, about 80% of women who take Aromasin don't suffer from debilitating SEs. Doing the rough math, about 20% do have problems. I just hope that I'm in the 80%. Best wishes to you, whatever you decide!

To MartyAZ22: I have almost identical situation as you (.5 cm, ER/PR+, HER-2-, no node) - and will have SAVI radiation in 2 weeks. I, too, am struggling with the hormone therapy issue. My doc suggested Famara (Letrozole). I am waiting results of Oncotype test. I am thinking if Oncotype score is low, I'm going to skip the hormone therapy. I am almost 62 and have been told I have osteopenia already...so I wouldn't want to increase chance of thinner bones. I, too, am pretty active and my husband is going to retire next month and our plan it to spend the next couple of years traveling in our RV. It's such a personal choice, and everyone's situation is different. Personally...I can't even picture traveling, trying to (finally) enjoy our retirement....and feel like crud from this drugs! I, too, took the test that "tgtg" provided the link too, above. It showed my "expectancy" would be shortened by a whopping 44 days, without therapy! I am still on the fence a bit....but I'm about 90% sure, as of today, that I'm going to say "no, thank you". Good luck to you, whatever path you choose! (I, too, am in Arizona. :-)

Hi,

I just wanted to make sure that the ladies on this thread knew that the Oncotype DX recurrence score ASSUMES that you will take 5 years of hormone therapy.  It is a tool used to determine whether or not a patient should have CHEMO, and not relevant for your decision on hormone therapy.  All the women on the Oncotype DX trial took 5 years of anti-hormonals - so the trial was only done to determine which patients should be also taking chemo IN ADDITION to the hormone therapy.

Best of luck with your decision.

Hi Marty, I am 49 1/2 and IDC have finished my Chemo 4 courses , my surgery and now my MO wants to start me n Tamoxifen, I have read too many negative things about this drug and I am done with Drugs, I eat very healthy and lift weights 3 days a week( or used to before Chemo kicked my butt so hard I can't hardly stand) and I am deciding on Oopherectomy to take care of my estrogen problem, I figured I would rather take out the organ that feeds the Cancer than to take more drugs that can cause Cancer. To me I don't want to hear the pros and cons of the medicine I just want to remove that problem all together. But that is probably why I decided on Bil. Mastectomy instead of 1 sided as was recommended by my MO and I am glad I did because they discovered my non cancer breast had pre cancer cells so I probably would have been removing it in the next 3-4 years. I know this is an individual choice and that is why I am not going to let my Doctor tell me what studies show, I am going with knowledge and my gut feeling like I did with the Bil.

I hope you take all the time you need to research your options. Good Luck and I wish you well.

L.K.

I did 5 years of Arimidex. No problems while on, no problems lurking around from taking it now that I'm off. Anti-hormonals decreased my recurrence chances 40%....double the 20% of chemo (which I also did). HUGE! I wanted to do all I could (including the lifestyle stuff) to keep from ever having to play the cancer 'game' again!!!!

BC2015: I have the same questions as you, in my decision-making process. My Oncologist told me the studies, of the inhibitors, was for a 5-year period and that studies have NOT been done on further out than 5 years. She said she has a patient that has been on these drugs for 13 years now - in fear of the cancer returning. Someone I know had cancer, was "clean" after 5 years....then got it again at about 8 years out. And...they then called it a "new cancer" since it didn't "recur" within 5 years. Very odd. So, I guess when gals hit the infamous "5 year mark" and say they are "cancer-free"....I guess that means only that their original cancer didn't come back?

Hi Everyone,

Marty, you don't mention what your ER % is. I am really struggling with this as my ER/PR's are just 25% each. Now if I were 90% I would feel better about the risk of all these SE's. I know that even 1% pos supposedly get some benefit out of endocrine therapy but the effect is directly proportional to your % of positivity. I am awaiting first appt. with MO to discuss this and Oncotype.( I wish my BS had just ordered it but he defers that to the MO) I would like to know what the other 75% of my cells are up to. I am going to try the endocrine therapy for sure but if my quality of life goes substantially down, out they go. I need to fight and at least say I tried them.

I may do a survey thread asking what your oncotype was if your ER % was less than 30 and HER2 neg.

Pat

I've been on arimidex for 8 months. So far no problems other than hot flashes, which were worse in the beginning and are now getting much better. I was already postmenopausal when I started this drug and I wonder if that made it more tolerable.  Many of the negatives I hear come from younger women thrown pre-maturely into menopause. I think the drastic change must be very difficult. My MO wants me on this drug for 10 years.

I took tamoxifen for five years and then Arimidex for 5 years. I haven't had any major problems. I haven't gained weight and I have had no joint pain. I had a little bone loss and took Prolia for about a year, with no side effects, and that brought my bone density back up so I stopped. This is powerful medicine. For those of us who had ER+ tumors they think it could be more powerful than chemo. All medicine has potential side effects, especially such powerful medicines. For me this has been easy. I will tolerate a great deal to prevent a recurrence of cancer. Fortunately I haven't had to tolerate a great deal as I had no real problems on these meds.

By the way I was premenopausal when I started and was put into menopause with Zoladex, eventually having my ovaries removed. And I didn't think it was a bad transition.