I am a little off the usual algorhythms right now....I just had an oophorectomy/hysterectomy. I hve finished radiation & lumpectomy as treatment for my stage one, grade one, ER+PR+, Her2-, node negative IDC.
So..I am post-menopausal, 51 yrs old and in "surgical menopause". So far, not so bad with menopause symptoms, and...of course....no hormone replacement.
I find myself afraid to take AIs. I am afraid of the side effects and afraid of the long term effects and, I guess, afraid that it really won't make a difference overall for me.
Does it matter if someone is slender and physically active? I know that I have fat cells, anyway, but I am small and I know that it is the same dose of medicine regardless of your weight. Some women weigh twice as much as me, with a lot more fat cells producing estrogen, would my dose be the same....and wouldn't that make me more likely to have side effects or long-term effects?
My guess is that you are going to tell me to direct my concerns to my Oncologist, which I will, but I always try to back away from a situation and think it through rationally. I am physicallly active, slim, I don't drink any alcohol at all and I just closed up shop in my ovaries. The oncotype on my tumor was extremely favorable and my tumor was just .7cm.
Do the risks of SE's and LTE's ever offset the benefits for a drug for a certain individual?
You can probably tell by this posting that I'm not the easiest patient for my Oncologist because I question everything, but it is my life and not his. When we first talked about taking tamoxifen, he made it sound like it was nothing at all..."just a pill everyday" and I said...."it's not like taking a vitamin or even a tylenol everyday. It has a lot more risk and side effects than that. It's not a totally benign treatment." He agreed and we started a lot of discussion on that. Ultimately, though, I had "female problems" anyway, and needed a hysterectomy due to endometriosis and bleeding, so had my ovaries removed with this surgery. Which brings me to AIs...
I really like my Oncologist...he does exactly what I want and expect from him, which is tell me the statistics and the recommendations based on statistics, but I need to make the best choice for me as an individual, and I think my questions are unexplored right now. If I commit to good diet, exercise and no alcohol, does that cut into the risk of reoccurance substantially enough to not need an AI?
Any thoughts on this? Thanks for your time and committment to us. I know I'm kind of high maintenance but thanks in advance for your help...
Hey, Cruzer - Nice to hear from you again! Frankly, if I was in your position, knowing what I now now about AI's - I wouldn't take them. With no node involvement, low stage/grade, favorable Oncotype, everything seems to be pointing towards very little benefit from an AI. And I know, from experience, the downside is huge - I'm experiencing pretty severe bone loss, and yes, I eat healthy, don't drink, don't smoke, exercise every day, and lift weights twice a week - nothing helped, so now I'm on osteoporosis drugs. I hate getting into that "taking drugs to counteract the side effects of other drugs" thing. And if the benefit of an AI wasn't so significant for me, I'd quit taking Arimidex. In fact, I asked my oncologist if I could quit... and he was quite firm about its benefits, in my case. So I'll soldier on. But for you... hmmm, sounds like some extra insurance you might be able to forego, given its potential serious downside.
Not to say you won't have a recurrence... with or without an AI. It's all a roll of the dice. And I'm no doctor. And yes, ask your oncologist. But personally—if I had your diagnosis, I'd chance going drug-free. OR take tamoxifen, as Plan B, to hedge my bets. But these AIs are tough - aside from the bone loss, they come with other pretty icky side effects... Balancing act, as usual. What pain for what gain. Ain't cancer a blast?! And I don't mean osteoblast... 
Take care - PJH
I too am petite, physically active throughout my life, don't drink alcohol, eat meat or dairy and take very good care of myself. My estrogen-receptive cancer showed up node-negative and no sign in my blood. Learned a year later through getting a mole checked that it had spread to my skin and bones. And now it is completely gone.
I too question my oncologist so I can make informed decisions. I was not able to tolerate Tamoxifen so I was put into menopause chemically (Lupron to shut down my ovaries) and AI's. I was concerned about the dosing and decided, in conjunction with my doctors, to take 1/2 pill a day. I biked a marathon, hike and do yoga regularly. I've had challenges with both Arimidex and Femara, but now I'm going to try 1/4 of Arimasin every day. I've spoken with a few women who have had trouble with Arim. & Fem - they seemed to do better with Arimacin.
I think that in addition to a very positive attitude, developing and integrating a treatment team (Western-based medicine) and a healing team (Eastern based acupuncture, supplements, yoga, meditation), and being mindful of creating the best possible environment for my immune system, the cancer is gone and the side effects will be something I work through.
I wanted to provide you support on your journey. The integration of my support teams really make a difference. As well as being a very empowered recipient of care.
Hi I was told that I had breast cancer in feb 2002, I under went surgery, chemo, and radiation. I used tamoxifen for 5 years and now I am using femara. Last year was my first year of taking femara. in the beginning I experienced some lost of memory, in my opinion. I wanted to stop taking it but my doctor encouraged me to continue using it. Now it doesn't seem to effect me in that way. also earlier I experience joint pain, especially in my legs and knees, but moving around and gentle exercises helped. even now I try not to sit still for too long. My surprise was the hair lost.rather hair thinning.( it doesn't fall out like chemo would cause, just gradual thinning) no one told me about this side effect. I know that I am not just seeing things. some may say that I was bond to lose some hair as I get older. I look at people who are older than me who have full thick gray hair (wow) My mother's hair is not thin either, but the males on my side of the family do have thinning hair.
I guess doctors make a decision for us, --save the women's life--hair is vainity.
maybe it's a tradeoff--men can look great bald, well some can, but for women it's a different story.
so when you are dealing with breast cancer survival, you may need the advice of those outside the medical community, like hairdressers, dieticians and spiritual leaders, support groups. still I am thankful for all the help that I received from the medical community. maybe one day medical treatment will mean treating the whole person.
Hi - It's true, I didn't know about the hair thinning either - or the possible hair growth on your face! But it's all part of the deal, isn't it? Tradeoffs for survival... Hope you can put up with the Femara for as long as your doctor recommends - it's proven to help prevent recurrence. Good luck to you - PJH
thanks--God bless you !
one advantage of talking to others who have had to deal with breast cancer and the survival of it is that we can talk honestly about it. sometimes the subject gets overwhelming for family to talk about or it's amazing how people can sort of (get over it) but the person who has had to deal with cancer can't quiet get over it. not that I don't have faith, I do but it's like a shadow that seems to follow you.
I am so glad that my doctor didn't act as if it was my fault that I got cancer. He didn't say that I didn't eat enough vegetables or exercise enough and so on--I can sort of imagine how a person who has an unpopular illness feels. no one wants to feel condemned.
In my opinion:
whether we are healthy or trying to stay or get healthy-we are all spirit filled beings living in a venerable human body.
Why are you scared to death of Aromasin? It will surely be easier on you than the chemo has been. I've been on an aromatase inhibitor for nearly 5 years, and it hasn't been bad at all. Why not give it a try with an open mind? If you don't like it, you can stop taking it, or switch to tamoxifen. I think maybe you've been reading about other women's reactions to it, but keep in mind that we're all different - and those of us doing just fine with AIs aren't posting our experiences online. It's only the negative experiences you're hearing about. Hope this makes you feel a bit better - PJH
Thank you for responding so quickly to my very depressed message. I have decided to change my attitude and try my AI. Hopefully I will not gain weight nor have some of those absolutely horrible side effects. Actually speaking, the chemo wasn't too bad. I have an excellent onc who prescribed many other anti nausea medications.
I will take my CoQ10 as the anti Aromasin medication to reduce the bone pain, etc.
As you can tell, I'm a very concerned woman.
bc
After a bilateral mastectomy (6/10/09), 6 TAC chemo treatments (last treatment 10/22/09), complete hysterectomy including ovaries (11/24/09), I started radiation. I was only able to complete 21 of the 33 (28 regular + 5 boosters) because it caused me to have pericarditis which I am still dealing with. Now my oncologist says to start Femara and to come back in 3 months. I am afraid to start Femara until I have completely healed from the pericarditis. I am seeing a Cardiologist but really not sure what to do. I am terrified of the potential side effects and I am also worried about putting off starting Femara. I would appreciate any advice you can give.
Thanks,
tennischic
I would definitely consult with my cardiologist as well before I start taking the Femara to make sure it won't be contraindicated and cause any further risk with your Pericarditis. As for the Femara,my Med Onc is going to recommend I take this as well and I am petrified of taking it. I am a nurse and know to well what the potential side effects of all the AI's are and don't like them! What am I to do? I can't make up my mind. This is my 2nd bout with cancer in 27 yrs the first being Hodgkins when I was 16 and then BC dx in Oct. of last yr. just finished rads 2 wks ago. I am at a loss...
Renee
Renee, as you know, AIs aren't the only long-term hormone therapy that can work for you. If you're scared of them, why not take tamoxifen? It has other side effects, but perhaps not the ones you fear. And though it's not as effective as an AI, it'll still help prevent a recurrence. Somthing to think about - it was the gold standard of long-term hormone therapy for 30 years, prior to the advent of AIs 8 or so years ago... PJH
After lumpectomy, radiation and chemo for Stage 2 BC I took I was prescribed Arimidex. Stayed on it for two years despite the pain. The side affects never subsided. Finally a doc switched me to Tamoxefen and within 6 weeks I was feeling almost normal and could function again. Here's the rub -- two years later my BC recurred. Mastectomy sucks. I wish I had known there was another option of AI when I came off the Arimidex, as opposed to Tamaxofen which was apparently not very effective for me.
I am now taking Femara until the samples from my doctor run out, then I'll be on Aromasin as was prescribed by the docs at MD Anderson. Side affects seem to be minimal compared to Arimedex, at least, for me.
In Aug 08 I had breast cancer in one breast. Path report showed tumor estrogen receptor positive. Had lumpectomy, radiation and was put on Femara.
In April 10 I'm diagnosed with breast cancer in the other breast. Needless to say I was suprised and pretty unimpressed with Femara. Now oncologist recommends Aromasin, and now I read on your site that Femara should be taken only after 5 years on Tamoxafin and Aromasin after 2 to 3 years on tamoxifen. I've never taken Tamoxafin. What do you think about this? I'm really wondering if my oncologist knows what he's talking about.
Current research shows that for post-menopausal women, either 5 years on an aromatase inhibitor; or 2 to 3 years on an AI, followed by 2 to 3 years on tamoxifen, are equally effective. I'm not sure the FDA approvals have caught up to the research, as the FDA does tend to lag behind the scientists.
Is your new cancer estrogen-receptive, I assume, since your doctor is recommending Aromasin? Each of the three AIs works slightly differently, so I'm not surprised s/he's trying a different one this time around. I hope you get good results - PJH
I am post menapausal--I don't think I included this with my original message.
I don't understand all the medical lingo; but as I see it, the path report says that DCIS of left breast has single focus of microinvasion measuring 0.5 mm that is estrogen receptor negative and progesterone negative. There is a coment that "size is too small for histologic grading." So I guess we're really not sure. My oncologist thinks thhat if it were large enough for a conclusive testing that it probably would be ERPR positive.
I had been taking the Femara because one and a half years ago I had a right breast cancer that did test ERPR receptive.
I underwent lumpectomy in January, and followed up with 6 weeks of radiation.
My oncologist put me on Evista rather than Tamoxifen. Evista is also used for osteoporosis, which he indicated becomes a side effect of taking Tamoxifen. It's not without side effects though, which made me hesitant in taking. After talking with oncologist as well as radiology oncologist, I began taking. It's been almost 3 months now -- hot flashes, and some muscle pain in my legs, as well as joint pain in my ankles. None of it is unbearable, so I will continue to take; as the positive outweighs the negative. I haven't gained weight from taking Evista, but I think has made it harder to lose weight. I've been dieting and exercising, and it's slow going. The oncologist says it's too early to tell how long I'll take Evista,
but probably at least 5 years. Maybe Evista is an option for others to discuss with their oncologist.
Glad you're doing well with the Evista, Sue. As I understand it, though, tamoxifen actually strengthens bones, rather than weakening them as aromatase inhibitors (such as Femara or Arimidex) do. Perhaps your doctor has other reasons for choosing Evista instead of tamoxifen, beyond just bone-strengthening... Thanks for connecting here. PJH
I just read through the comments and I'd like to add that Lupron can be used to shut down the ovaries, therefore making AI's an option for women who have not yet naturally reached menopause.
I was premenopausal and prescribed Tamoxifen. I was unable to take it so I was prescribed Lupron (1 injection every 3 months and shown to be just as effective as ovary removal without the stress of surgery) then put on AI's.
Initially Arimidex, but suffered severe trigger thumbs leading to simultaneous surgery on both thumbs.
Subsequently prescribed Femara, suffered severe joint pain in feet, hands neck and knees.
Now about to try Arimasin. Just wanted everyone to know that Lupron is an option.
Thanks. Me too. I'm setting the intention that this drug will be welcomed by my body and cause minimal side effects, if any. A reminder to continue to care deeply and lovingly for myself.
Does anyone know of a group of women who get together to support each other and have some fun in the Hollywood, CA area? I'd like to expand my support circle.
Hello,
I am a breast cancer survivor that is going on my 5th year of being cancer free. I had a form of ductile cancer that was mis-diagnosed and did not show up in several mammograms. It came out around the skin on my nipple and I read about 'Pagets' disease and told my doctor, who said it wasn't cancer. My own mother died of breast cancer so I am high-risk (DUH!) and should have been sent for a biopsy. I thought my doctor was right because I (mistakenly!) I thought that a mammogram showed everything! Many women have been mis-led into believing that. I found additional information online that said "many times, Paget's disease was mis-diagnosed UNTIL AN MRI was done--I knew that was what I had. Went to a wonderful research hospital and had a diagnostic mammo, a sonogram-still no cancer but the MRI CLEARLY showed the ductile cancer. I had dense breast tissue which is another HIGH RISK factor. There are new tests in the making but everyone should be asking about their breast density 'rating' and whether they need additional tests besides the standard mammograms. I have been on Femara for almost 5 years but NOW my concern (I AM VERY HAPPY to be alive) is affording the cost of Femara-a drug made by Novartis. I am infuriated over the cost--it was $112 (out-of-pocket, after insurance) 4 years ago and I just had the script filled and paid $181 (out-of-pocket, after insurance.) The drug has risen approx. 40% in the last 4 years--how will I be able to afford to take it for the next 5 or 10 years? I am contacting Novartis to discuss and I know my insurance provider may be covering less on the drug. It is terrifying to switch to another drug when you become confident in the one that has worked but now all I can think of is my anger for the skyrocketing costs and if I should take Arimidex instead--the cost for that would be $12 a month. Also, I am one that has had little side effects but none of us know what the drug will really do since it's new--I constantly think of the costs and the way it could affect me and wonder if I should just let the estrogen flow freely and live the rest of my life knowing that am no longer an estrogen-less monkey whose skin, bones and cognitive brain function isn't being sucked out like a vaccuum. JWar
Is your doctor recommending you stay on Femara indefinitely? Because as you say, it's a new drug, and they don't yet know the long-term benefits, OR the long-term side effects. My oncologist took me off Arimidex after 5 years (preceded by 3 1/2 years of tamoxifen) because he says the data just isn't there showing that longer-term, at least for my diagnosis (stage 2, node involvement) would be helpful.
And check this out:
You may be eligible for a substantial discount on Femara if you’re not covered under a federal or state health insurance plan (e.g. Medicare, Medicaid, etc.). The Femara Cares Program™ Prescription Discount Card allows you to pay just $10 for your prescription, with the manufacturer picking up the remaining cost. For information, visit www.myfemara.com. Click on the “Taking Femara?” link in the center of the page.
Hope this helps- PJH
I am 3 years out from Stage IIB Invasive Ductal Carcinoma. Treated with chemotherapy, radiation, Tamoxifen for 2 years and started on Arimidex in January, 2011. I thought I was tolerating it fairly well for the first few months, but a couple of weeks ago I had severe pain in my hands and feet that was not helped with Tylenol or Aleve. My oncologist told me that the generic form of Aromasin had just become available and I was encouraged that I could now afford to switch over. Unfortunately, I just found out that the generic was still over $350 per month (even with insurance), and the brand name was over $400. Before deciding whether to mortgage my house to pay for this, would someone who has been on both drugs tell me whether the side effects are less severe with Aromasin...enough to make it worth paying that price? The Arimidex just went down to $13 per month after insurance. Thanks!
Hi - No one will be able to tell you what your side effects will be; we each have our own experience. Some women might tolerate Aromasin better; some, Arimidex. How about this: If you can afford to, try Aromasin for 2 months; if your symptoms abate, then decide whether the improvement is enough for you to mortgage your house... Also, double check with your doctor to see if there's a special rate for Aromasin, and whether you might qualify. Some drug manufacturers do offer discounts. Good luck - PJH
I was diagnosed in Jan. 2009 with Stage 1 breast cancer at the age of 72. Had a lumpectomy and radiation (no chemo). My oncologist put me on Arimidex which I tolerated fairly well for about a year. When I mentioned a few aches and pains, he suggested trying Femara. Femara almost crippled me after 3 weeks on it. I literally could not lift my arms or get off a chair. He took me off it immediately, cleared my system taking nothing for another 3 weeks and I went back on Arimidex which I have now been on now for almost 2 1/2 years (minus the 3 weeks on Femara). When I saw him recently, he suggested trying Aromasin after I said I was having some joint discomfort (nothing horrible) and gave me a month's samples to try. I have now been on Aromasin for three weeks and decided I am not going to have the prescription filled as I'm having much more noticeable discomfort with the Aromasin. Of the three, I tolerated Arimidex much better. Also, when I mailed the prescription in for the Aromasin and was told what my co-pay would be, I definitely am going back to the Arimidex and cancelled the Aromasin prescription. I can put up with Arimidex for the 2 1/2 years I have left to be taking any of these drugs.
I was on Anastrazole for 8 months--joint pain in the knees and hip. Switched to Femara (name brand) and after 2 1/2 weeks, joint pain not resolved but experienced magnified hot flashes (frequency and severity), insomnia and anxiety and crying jags. Dr. took me off and had me detox for 2 1/2 wks. Back on anastrazole-- After the drug holiday and return to anastrazole, jt pain resolved, insomnia/mood resolved and hot flashes tolerable (it's only been a month back on the anastazole.) My concern is that Femara is probably more effective-- When is the FACE trial data supposed to be released? Will the info include whether side effects indicate that the drug is working? My onc told me that SEs mean it's working--- Don't know what to wish for.:) Also have my doubts about generics. If I want Arimidex, I have to pay $500/month. (insurance won't pay because of generic availability.) My onc got me samples of Femara to try. I had Stage IIb IDC 1/12 nodes. Oncotype score 23--took a pass on chemo, had ooph and want to get the endocrine therapy right. Thanks for your insight.
I don't believe there's any evidence supporting your oncologist's view that "side effects means it's working." All of the AIs, thus far, have had such similar outcomes that they're interchangeable; I believe taking a generic Arimidex should give satisfactory results. Generic drugs don't come on the market unless they're tested and proven; and what makes them generic isn't that they're cheap or shoddy, but that the company making them didn't put the millions (sometimes billions) of dollars into the original research, and thus doesn't have to recoup their development cost, and can sell them for a lower cost. If I were you, I'd try generic Arimidex, and see how the side effects are.
As for the FACE trial, results aren't out yet, so far as I can see; it began recruitment in March 2006, so it would have been 5 years this past March. It does take awhile for the data to be compiled. Earlier results showed Femara suppressing slightly more estrogen than Arimidex; but many doctors prescribe Arimidex because they feel the very slight amount of estrogen not suppressed offers other health benefits, like protection against heart attacks and strokes; while not raising your recurrence risk.
Hope this helps. Good luck - PJH
Hi PJ,
Thank you for your kind and prompt reply.
I was actually on generic Arimidex the whole time, but didn't have a lot of confidence in them. The fact that the generics only have to be 80% bioequivalent--the fillers can impact absorption and metabolism, and the lack of FDA inspection of facilities abroad--where all the generic Arimidex is made was of concern to me.
Just wanted to let you and your readers know that thankfully Astra Zeneca just launched a Direct Buy program. I had been calling them and complaining about the $500/month price tag while the genrics were $10/month. I just started on the brand name Arimidex!!! It's $40/month--which is still more than the generic, but it's affordable compared to the $500/month quoted before this progam. (for me it's worth the xtra $30/month to know that I'm taking the same pill being used in the clinical trials.) So far no jt pain---Yay-- it took 4 months for those SEs to kick in the last time, so I've got my fingers crossed that I will stay pain free. Happy Holidays and best wishes for a healthy New Year.
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I had a very low grade, small, breast cancer. I also have osteoarthritis, osteoporosis, and high cholesterol - and I'm not even 60.
So the list of side effects for AIs looked like my worst nightmare.
I talked to my oncologist about this - the absolute difference for me of taking an AI rather than tamoxifen is about 3% for recurrence. There is no difference in terms of life expectancy.
And AIs are expensive - over $400 per month, if you do not have health insurance.
If you have side effects, the bisphosphonate infusions are $1000s.
Plus, there is no long term information about side effects - I have heard concerns voiced about the possibility of dementia, as estrogen may play a role in brain function.
I would really be interested in hearing more about these issues.
Hi Sue - You're right, AIs are still a work in progress. And they'll work for some better than others. Everyone has to approach their own cancer on an individual basis—and do what's right in your own case. Good luck - PJH