Wanting to reject the option of Aromatase inhibitors

hap_k · September 2012

Hi Folks,

Three weeks ago today, I had a bilateral mastectomy, clean margins, no lymph node involvement. Grade 3 cancer, supposedly with a high proliferation rate, but doctor says that doesn't mean much. I don't need radiation because I now have no cancer they can find. I have bounced back, doing well with reconstruction, and barely needing anything but occasional Advil. HOWEVER they have sent me to a young, high powered, "do this now or very likely die in 5 years" breast cancer medical oncologist--highly qualified but with the charisma of a hologram.

I am only ER+ (weakly positive she says). She wants me on one of the aromatase inhibitors or at least Tamoxifen. I am 67, very fit, trim, otherwise very healthy. I have read about all the side effects for these drugs. NOT GOOD NEWS. During her monologue where she hardly took a breath, I finally cut in with "But these are NOT preventative, what's the best they can do for me in terms of reducing risk?" She didn't like the interruption, but said, "If you are among the 20% who would have cancer recur as metastasis, then it will reduce that chance by about 10%." I said, "So I have an 80% chance of not having it recur if I don't take the drugs and maybe a 90% chance if I do, but side effects can be things like endometrial cancer, stroke, bone fractures, etc?" She didn't like that question either.

I would like to hear anything from others who said yes to the drugs and especially people who said no. My mother survived breast, ovarian, and skin cancer to die of "age related causes" at 87.

No one can give me the assurance that I will have the long life that runs in my family, but I am not at all keen on the idea of taking huge risks for such a tiny percentage of possible prevention. If I felt that lucky, I should be heading for Vegas.

Honestly I felt like I was being sold a very dubious life insurance policy.

Thanks, Hap

Omaz · September 2012

hap - Hi - have you gotten a second opinion about the anti-estrogen therapy? It sounds like your onc is not a great fit for you. It needs to be a communicative relationship.

Blessings2011 · September 2012

hap - I had a BMX w/ recon in December 2011. When I met with the MO, she told me my risk of recurrence after surgery was 1% - 2%. (I had the maximum surgery for the minimum cancer.) No chemo, no rads.

However, because I am 100%ER, she told me she wanted me on Arimidex for five years.

Well, I had done my research, and KNEW that since I already had most of the side effects, there was no way I wanted to take my chances with a drug that could have such devastating side effects.

I said I'd been post-menopausal for the last 15 years, and had already had a hysterectomy, so there was no estrogen in my body. She kindly pointed out that estrogen is manufactured in body fat, of which I had plenty.

I left there, feeling like she hadn't listened to me at all. The more I thought about it, the angrier I got.

So I made another appointment with her. This time, I pointed out my concerns, and she answered every one of them. It was then that I realized that her job - her ONLY job - was to prevent her cancer patients from having any recurrence of their cancer, and if they did, to prescribe the best treatment she could for them.

I made the decision to enter a medically-supervised weight loss program, mostly to lose the excess weight, but also for ammunition for future arguments with my MO. Because I was in the program (four months on a basically liquid diet) she gave me a reprieve on my Arimidex.

But at the same time, I also did some more soul-searching. I had condemned the Arimidex based mostly on posts I'd read here on BCO. I finally realized that women who had NO side effects were not posting, and that there were no threads titled "Oh, What Fun I Am Having On Arimidex! I Feel SO Great!!!"

My mom (a BC survivor) always told me "Honey, you won't know until you try." She passed at the age of 87 from Parkinsons, with no recurrence of the breast cancer she'd experienced 26 years previously.

As I lost weight, I started getting stronger. I started exercising. My fibromyalgia and joint pain almost disappeared - not because I weighed less, but because my diet was gluten-free.

I started to read the Arimidex threads more closely. Yes, there ARE women who have no or few side effects on the AIs. Perhaps I could be one of them?

What if I decided to forego the AIs just based on principle? What if I DID get a recurrence...how would I feel if I had refused a drug that might have prevented it?

In one AI thread, there is a saying "SEs are easier to treat than cancer."

I explained my fears to the MO, and said that I would be willing to try. And if the SEs got to be too much, I may agree to try another drug, but ultimately, my QOL was more important to me, and I would quit. She agreed completely. We finally understood each other.

So three weeks ago, I started Anastrozole (generic Arimidex). I had one night of insomnia, but changed my dose to the morning instead of bedtime, and that took care of that.

My MO says that my 1% risk of recurrence was reduced by 23% because of my weight loss (56 pounds) and exercise, and that the Arimidex will further reduce that risk by 50%.

So now my risk of recurrence is at 0.38%. My MO just smiles and says "It's still not zero." I'm glad she is as diligent as she is.

ruthbru · September 2012

I just finished 5 years of Arimidex. I did not have any problems on it. You won't know if you don't try. I,myself, was thrilled to be able to do something that really does reduce my chance of recurrence (both short and long term as the protective benefits last long after you take the last pill). I will also say that yesterday I attended a funeral yesterday of a dear friend who was diagnosed at about the same time as I was. Same stats, except she didn't have the type of cancer that would respond to anti-hormonals. She would have given anything to have had that option.

hap_k · September 2012

Omaz, I am trying to find another highly qualified breast cancer medical oncologist in Oregon--somewhere in the Willamette Valley (Eugene, Salem, Portland). Locally, most MOs are guys who do not even mention the word "breast" in their practice profiles. It's dscouraging. I had high hopes for this one, but NOT a good fit.

Blessings2011, I congratulate you on your dedication to help yourself! Not too many people would do the work to get in shape and help themselves. I would not dream of trying to say anything to shake your confidence in your doctor and in Arimidex. However, my eyes boggle out of my head when I read about endometrial cancer, strokes, the list goes on & on. So you're shooting for zero risk? I honestly do not believe that such a thing exists. But your confidence in your doctor and in your own power to help yourself is probably worth way more than the Arimidex in preventing recurrence.

Best of luck and all power to you, girl!

Hap

Omaz · September 2012

Hap - My onc is part of US Oncology and I think they have offices in Oregon.

hap_k · September 2012

I'll look to see if they are here and are covered by my insurance. Thanks!

Chris13 · September 2012

Hi hap,

I believe some of the side effects you mention are related to Tamoxifen (endo cancer, strokes, etc.)--which is given to pre menopausal women. Getting a 2nd opinion should give you more confidence in your choice, however, so best wishes with that.

LilacBlue · September 2012

I'm pleased to read this discussion. Hap, I've found the women on this site who have refused hormonal therapy, on the alternative therapy discussion threads. I'm going into my second month of letrozole, 2.5mg. I have the same issues as you, and my percentage of recurrence is lower. My onc really wanted me to at least try and seeing what this crappy experience had taken my son (13 years) and husband, well, I don;t want to knowingly put anyone through that again. It's too soon to know, yet, my joints ache and the end of the day is the worst. I had bone density test before starting, I'm very good now bone wise, yet after 5 years, the technician showed me on the graph where I would wind up and it would take 2-3 years to get back to where presently am. Great. Everything I've read, claims at least 2 months for side effects and read a great deal that if it's not so bad, month 8 is a turning point going south.

Anyway, here is a link used here in the UK that you may find interesting:

http://www.predict.nhs.uk/

ruthbru · September 2012

I was a little achy and 'flashy' at the beginning. But after about 6 months everything settled down and I FELT and WAS fine all the rest of the way. Normal blood work, didn't gain weight, normal DEXAs, normal blood pressure, normal EVERYTHING. It is tamoxifen that has a list of potentially more 'serious' SEs (because pre-menopausal women have more estrogen that needs to be suppressed). For most (but of course, not all) women, a Al SEs tend to be in the 'nusiance' category. If you read all the possible SEs of any drug, you would never even take an aspirin again. The risk reduction numbers are not just numbers made up out of thin air; many of our brave sisters have taken part in clinical trials to get the best data possible to help us make our decisions. For me, 5 years of arimidex has reduced my recurrence risk by 40%. Huge!!! Much more than anything else I did, including chemo.

pupmom · September 2012

I am highly ER+ and I happily take my Aromasin every morning. Haven't had any serious SEs, just some discomfort, which is easily dealt with. I feel it is helping to save my life. I am 63.

bevin · September 2012

Ditto for me! I'm 46 and have minor hotflashes and some achy ankles when I first wake up. Other than that, well worth the 40% reduction in rrecourrence!

HLB · September 2012

Hi Hap, glad everything went well with your surgery. I've read your posts here and there and you were very organized and did lots of research, which is the same way I was and I think it really helps. Anyway, I was dx in 2004 at the age of 41. After my first chemo I never had a period again, and every time I had my hormones checked, the estradiol was so low, it was just "less than" a certain number. So I did not want to go on tamox. I tried it for a short time and said the heck with that. I already had intense hot flashes and it made them even worse, and generally I felt miserable, emotionally and physicaLly. I was gaining weight and I had always been thin my whole life. So anyway I stopped taking it and I took bio progesterone and maitake d fraction. Among other things but those were the ones that really think help the most. After a few years I stopped taking those tings because of the expense and I was pretty confident I was in the clear. And I was for a few years after that too. Unfortunately I was dx in July with spinal mets. Its hard to know what to make of it, its so unpredictable. I still think tamox is a bad drug and maybe its because I just don't want to blame myself. Now I am on letrozole and I have no side effects at all so far. I'm also back on the maitake and a lot of other things. I will know mon or tues when my ca 27-29 comes back if its working. I'm pretty sure it is although I don't know why I think that. I just think it will be lower and I'm anxious to see how much lower. Anyway sorry for the detailed post but I think you like to know every detail. Its such a hard decision. When you have an 80 percent chance of being fine you hate to do that to your body. I wonder if I would have stayed on the natural treatments would I be here now? If I took tamox would I still be here, just a few years later? Another thing is for the past two years I have been drinking too much soda, which I never did before. I just found out there's an integrative doc at the hspital where I get treated. I also work there. The guy has been there for many years as a peds oncologist, which he still does, but started the integrative stuff a few years ago. I'm going to make an appt. Pretty excited about that. Good luck with your decision. I know it can just drive you mad.

hap_k · September 2012

LilacBlue, I'm American, my husband is British, I lived in the UK for 10 years and love the NHS health care system there. THANK YOU for the link to Predict! I was looking for something that shows relative levels of risk.

The fact that this predictive program was developed by a partnership between The Breast Unit at Cambridge University NHS Hospital, the University of Cambridge Department of Oncology and the NHS Eastern Cancer Registry and Information Centre (ECRIC) gives it a lot of credibility for me. Also in the accompanying information they give a detailed account of how the model compares to the two data sets of over 5000 women each. Since I lived in East Anglia this really hits home. It is also free from influence from big pharma which is something that cannot be said of many studies done in the US. The NY Times has reported on the companies that offer "to spin science into gold" by editing and cooking the data sets to make some drugs look better than others.

According to Predict! for someone my age, with my size/grade tumor & ER+ etc,

"Five year survival

90 out of 100 women are alive at 5 years with no adjuvant therapy after surgery An extra 1 out of 100 women treated are alive because of hormone therapy

Ten year survival

77 out of 100 women are alive at 10 years with no adjuvant therapy after surgery An extra 3 out of 100 women treated are alive because of hormone therapy "

OK, so at 5 years 90 out of 100 who have no adjuvant therapy will be alive, and at 10 years, 77 out of 100 who have no adjuvant therapy will be alive VERSUS 91 out of 100 at 5 years with adjuvant therapy, and 80 out of 100 at 10 years. That's a pretty small margin of benefit. Worth it IF you are the EXTRA person at 5 years or the extra 3 people at 10 years. Not so worth it we take it for 5 years, and we are NOT one of the people who is alive because of adjuvant therapy at 5 or 10 years.

Still in the UK, the cost of the adjuvant therapy wouldn't send me into the Medicare drug insurance doughnut hole like it might here.

All grist for the mental mill....grind, grind, grind

hap_k · September 2012

HLB, I am so sorry your cancer is back. REALLY SORRY. I hate to hear that. There seems to be little rhyme or reason to how all this develops. Luck has a lot to do with it. I don't even know the other drugs you mentioned. It's a whole new language. (Hoping I won't have to learn this language, but I probably will.) I have a dear friend who had a lumpectomy and radiation for DCIS about 2 1/2 years. She took Tamoxifen for 5 days and then said "no." But being my age, not as young as you are, she felt like she just didn't want go the drugs route. At present she is still doing fine. However, I am not being influenced by her. I am working my way through to my own decision, based more on journal articles than personal stories, but the stories do really matter, too. Like yours.

I already feel like a big pharma sucker for taking HRT for 22 years after my hysterectomy (to protect my bones--hahahaha). So part of me feels like why should I give big pharma another chance to sell me "a prevention." I am not a believer in drugs in general. When my husband got high blood pressure, I said we can fix this without drugs if you want to try. Diet & exercise--he has no high blood pressure. I realize cancer is NOT high blood pressure, but big pharma is still suspect in my book. Good surgeons are worth their weight in gold, not convinced about medical oncologists--pills & potions are their stock in trade. Makes me think of the old apothecary shop--Harry Potter, with a MD in MO.

Being organized may not help much in the end. I'm not sure what does. The MO was trying to scare me with the word "incurable"--then I thought, well, you know, life is incurable! None of us get out alive. Something is going to get me. Cancer, heart disease, something. (I'm not a believer in an afterlife, so that thought is not relevant for me.) BUT ANYWAY it's not going to get me YET! Not today. Today I will go for a walk, eat my vegies, talk with some friends, pet my cats, read a book, and hug my husband.

Good luck with the integrative doc! Wish I could find one!

All the best, Hap

hap_k · September 2012

Yorkiemom, ruthbru, & bevin,

Thanks for your stories. It all helps create a balanced picture. After that "shock therapy" session with the MO on Thursday, I just needed to hear other voices besides hers.

I am glad that the drugs are working for you!

Hap

Omaz · September 2012

hap_k - There is also cancermath and adjuvant online which both estimate risk if you haven't already seen those.

HLB · September 2012

Thank you Hap, yeah I was pretty shocked that it came back. I always knew it was a possibility, but I really didn't worry about it. I am not a fan of big pharma and their drugs either. The whole process has been so corrupted in my opinion, I do tons of research before agreeing to any drug. One thing they do is when a patent runs out, they change one molecule so it can be patented again as a whole new drug. I am a big time pro capitalist and making $ is certainly good, but like everything else, buyer beware when it comes to drugs. My mom took fosamax for years and ended up having her esophagus dilated. She's been off od it for a few years now and her bones have actually improved due to exercise. That's a bogus drug if I ever heard of one. Sure there are good ones and sometimes they are needed, but they have everyone thinking they need so many pills, its insane. Another thing they do is change standards like how high cholesterol should be. They lower it a bit and bingo, a whole new population on drugs! I definitely think being organized helps. When I was first dx I concentrated on absolutely nothing but the cancer until I was done with it. I had a goal! And it did make things easier. I was so emotional I didn't want chaos making it worse. I made all my chemo appts in advance, got 2nd opinions on everything, made sure I had all scripts that I needed ahead of time so I wouldn't be running to the store while feeling crappy. One thing I did not anticipate was getting severly constipated after surgery and had my poor mom going to the store for an enema because NOTHING would work! My poor mom gets so worried, she nervously dusted my house while I went into the bathroom and when I came out she was like "oh thank god!" Haha! As if someting terrible would happen. I think that's whst I hate the most about this dz, is what my parents go through. I can't even imagine it. I certainly don't look forward to losing them but I do hope I outlive them. I don't have kids but I do know its the worst thing that can happen to a parent, losing their child no matter what the age.

hap_k · September 2012

Thanks, Omaz

The Cancermath says pretty much the same as Predict! I haven't tried Adjuvant yet. I think from what I read about Predict! that Adjuvant inspired Predict! (and the Predict site gives me loads of info about the how they have set up the tool and what data sets they used etc.)

All these show me that the edge I would gain is pretty darn SMALL (and there's some risk involved--I will go back & look again at the lists of SEs for Arimidex--but even if the risk was minimal to nothing, the benefit is still SMALL & certainly not a guaranty & certainly not cheap).

My gears are still grinding away.....

Hap

chatsworthgirl · September 2012

Haven't visited for a while but had some thoughts on Arimidex and my own uncertainty last few days. I have been taking it for two months now and have not eperienced any side effects. However, I sometimes wonder if I'm doing the right thing. So I came here today to see what others are thinking and have experienced to put my uncertainty to rest - at least for a while and I feel better having read many positive posts. No doubt I'll be back 'cause those pesky doubts and fears somehow always come back. LOL

I too struggled against taking any drugs. I struggled against everything! But I did it all. Mastectomy chemo and radiation. Now Arimidex. Talked to a lot of women who had bc including my mail lady who had it twice and saw how well they had done and all long term survivors - 10 to 15 years and counting. So I bit the bullet.

It doesn't seem like much - two percent or three percent but when you consider the number of women who get bc then you realize that two or three percent of those who gain a survival advantage is actually a lot of women. In the thousands.

The most current data - which was shown to me by the doctor at UCLA I went to for a second opinion on radiation - a women who specializes in bc - was comprised of all data collected over the longest term available for all types and combinations of bc diagnoses. My particular combo was put in and tested against what the survival outcome would be in terms of whether or not I did all the protocols. The answer was my chances were better if I did it all. This was not her opinion. It was a conclusion based on long term studies and data. Hard to argue with that.

My bc was 90% estrogen positive and 80% progesterone positive. My onc and my surgeon both said take the Arimidex.

Could I be one who didn't need anything but surgery? Sure. It's possible. But I can't see the future and it would have been a roll of the dice and I have never been a good gambler. I did have node involvement so there was that to consider. It had already spread beyond my breast. That certainly tilted the scales in favor of chemo and the rest.

I have given it everything that is available. That's the best I can do. I am 70 and am hoping for at least another 20 years. I want to live to see the day when getting a vaccine will prevent or cure all forms of cancer.

I don't know if my opinion or experience will help anyone else in their search for answers but I can say that I got a lot of help here on these forums when I was searching for my own answers.

Kathy

hap_k · September 2012

Yes, you're right, HLB. Being organized and fixated on doing one step at a time has made this manageable for me. Even my daughter (in her 40s) who freaked out and unfriended me on FB, came back around when she realized I was not dissolving in a puddle of tears and would not listen to others do that. Right now, I am her hero. No, I'm just practical, dogged, and focused...and organized.

I defintely agree about Fosomax. My jaw dropped when I saw that such drugs were being used to "cure" the osteoporosis caused by AIs. There's a real "two-fer" one.

Hey, my poor husband had do the same service for me after the surgery. They should say, buy an enema just in case.

Hope all goes well for you. Best of luck! (Your research skills will get you further than anyone would suspect, I think.)

Hap

Jodycat · September 2012

Why not try it? I dreaded taking letrozole, but the side effects are not bad. I do have diarhea (sp.) but a little immodium once in a while keeps it in check. My knees ache when I wake up and I swear my body fat has moned to my abdomen. I think I could gain a lot of weight, but I'm being very careful with exercise and diet.

HLB · September 2012

I always keep an enema in the closet now, just in case! Lol. Thank you for the well wishes. I'm being positive and planning on at least 30 years. Easy to do right now because I have no symptoms. I wish you at least 30 as well :-)

hap_k · September 2012

Thanks, I'd settle for 20 years. I'd be the same age as my mother was when she died, and she did not take care of herself at all (too much drink & junk food, after a lifetime of working her backside off), and she still survived 3 kinds of cancer. And as far as I know she didn't have any Tx for her BC beyond her radical mastectomy, as was the norm in the 1970s.

But after this week's oh so negative encounter with my soon-to-be-ex-MO, I felt like I was as dead as last Thanksgiving's turkey, ${$lang_emotions_tongue-out}$ despite having no cancer that they can find post surgery. It's taken me 3 days to regroup and put her words into perspective.

Thank you for your kind words and for sharing your story. If there's any justice, you'll get your 30 years!

Hap

ruthbru · September 2012

I am crazy researcher too, and I think the really frustrating part about treatment options when you are node negative is the thought that maybe they got it all with surgery alone.....so you think, 'What if I am taking this drug for no reason?'. Of course, if you KNEW it would come back if you didn't take it, you would jump on it; or if you KNEW it would come back no matter what you did, you'd say, "To hell with it" and book a one way ticket to the South Seas, sit on the beach and drink pina coldas. But since we can't know, and we are gambling with our lives, and since we may or may not get any given side effect, but we know, FOR SURE, that we have had cancer.....it seemed like the best bet, to me, was to take the Als, as doing so did help load the dice in my favor.

karen1956 · September 2012

Hap....I endured AI's and tamox for 3 1/2 years and then said enough is enough...I tried them all.....its 2 1/2 years since I stopped taking them and my QOL is better but I'm not who I was before Dx....I'm one of those who if there is a side effect, I had it...horrid joint pain, CTS, deQuervanes tendonitis (3 surgeries on my wrists), depression, anxiety, insomnia, ADD like symptoms, vaginal dryness, vaginal atrophy, lack of libido and osteoporosis..... But I do know gals who had absolutely no side effects.....my onc was not thrilled when I stopped but he did comment that I gave it my all....at each visit, and I had a 6 month check up last Friday, onc says, if you want to try the AI's again, just let him know, I said that I highly doubt it and he said, thats what I thought!!!! I am 6 1/2 years post Dx and still NED......I'm at peace with my decision to stop after 3 1/2 years.....I live a basically healthy life style and did fight the beast with all I had...bilat, chemo, rads, AI's for the 3 1/2 years.....There are not guarantees in life....and AI's don't guarantee that you won't progress....for me, if I do I know in my heart I did everything I could to beat the beast!!!!

Do your research and go with your heart...you can try the AI's and see how you do....or you can say, thanks but no thanks....my only advice is be at peace with whatever decision you make and then you'll know you made the best decision for you....All the best to you....Karen

LilacBlue · September 2012

Lots of good writings here and I'm grateful to read all of you.

Hap, I pay nothing for my tablets. Surgery catapulted (had to be surgery not just dx) me into the cancer realm, hence, I now possess a NHS card that exempts me from having to pay for any perscriptions, for five years. Without the card, the script would have cost me the NHS cap of £7.30 each script.

purple32 · September 2012

hapk

As for just " trying' certain meds., I am sure you know that some who have " tried" tamoxifen ended up woith endometrial cancer or blood clots , strokes, terrible QOL etc ... others did not. You can't " just try it' and see... it's very risky.

Ruthbru said something to the effect of if we KNEW we would get cancer ... we dont kNOW! And you dont know if you would have life threatening side effects either or even how much better off your cancer status would be . THAT is the problem. Hmmmm.

If I take arimidex I am sure to thrust my ostepenia into osteoporosis. That much I DO know for certain.

Other ALs can cause heart problems and more.

To each his own.

Read it again... to each his own.

Best of luck to you in your choice!

purple32 · September 2012

It is NOT true that Als can cause only " nuisance " SEs!

This statement is shocking to me. Imagine if newbies coming on actually believed thar!

It *may* be true that is all they caused YOU or Susie or Peggy or ... but not everybody will be so lucky.

Aromasin may or may not cause SEs which can lead to serious heart problems.

I personally know of a woman who had heart issues caused by aromasin and ended up suffering 2 heart attacks. The ALs can cause very serious and pretty rapid breakdown of the bones and osteoporosis which can lead to hip FX and permanent disability ... and more. So many on the ALs have " achy bones" . This is more than a nuisance- it can be a SYMPTOM of what it is doing to your bones. We all have google. I really dont need to go on and on. Any google search will come up with dozens of links.

http://www.ehow.com/list_6331116_uses-_amp_-side-effects-aromasin.html

If people are going to make a decision on whether or not to take Als, at least BE INFORMED. We have the internet for God's sake!

For all who have taken them with just nuisance SEs , best of continued luck to you.

Sincerely

REKoz · September 2012

To each his own.

Read it again... to each his own.

Best of luck to you in YOUR choice

Ahh Purple...Can you imagine what a wonderful world we COULD have if people would truly accept this enlightening truth and act accordingly? I cannot help but think of this now on a daily basis what with the presidential election around the corner? One can only dream...

These anti hormonal posts in particular can often become a hot bath for differing opinions. I love the RESPECTFUL give and take of opposing sides because I never know when something that I hadn't thought about comes up. Life for me is a never ending learning process- particularly in this world of breast cancer when there is always something new or thought provoking to be had. So I offer my experience in a few threads for like minded thinkers.

As far as this particular topic, I offer my Mom's as well. She was diagnosed at age 77 with node neg. ILC and IDC. Had a bmx with immediate recon (expanders to implants) and the only after treatment she had was 5 years of Tamox. Mind you, she comes from a background of never questioning a Dr. and just "doing what she is told." She is now 84 and did fine on the Tamox. She was offered an AL after 2 years but decided to stick with what she knew she tolerated well.

Fast forward 3 years...a few days after turning 53 at exactly the 1 year point of being officially post meno comes my "turn". (See my diagnosis below with the addition of 100% for both ER and PR.) After chemo (as HER2 pos), I begrudingly started with Aromisin. Yes, I read every dreadful thread about all of these drugs but FOR ME, that 100% kept lighting up like a marquee in my head. After 3 months my QOL became unacceptable. Maybe I could have tolerated some of the se's but the combination of them all, particularly becoming drier than a prune was too much. Decided I would give Tamox. a try before abandoning ship to spend the rest of my life feeling good and hoping I would learn to dim the lights on that 100% marquee. Thankfully, I didn't have to as I have tolerated it quite well. I admit, now I have a dimmer light in my head displaying the worst that can happen on this drug. However, I see the gyno every 6 months to stay on top of any changes. So far, so good with a year and a half left and I have finally resumed life fully in my "new normal."

Had I had the low ER% of OP, I believe my story would be different. But one never knows unless standing in those same shoes. EVER. So, that's my story that I hope may be weighed for any sister going through this huge decision regarding anti hormonals. May we all remain cancer free and live life to it's fullest!

Ellen

ruthbru · September 2012

I believe I said 'generally'.....the chemo I did could have caused heart problems but 'generally' it does not, the daily low dose aspirin I take can cause stomach or bleeding problems but 'generally' it does not, the statin my brother takes for high cholesterol can cause muscle breakdown and other problems but 'generally' it does not. He has a heart attack and a stent, and a good diet, but still has problems with it, so to him the risk is worth it. Of course, do your homework, weigh your risks, make your choices and live with the consequences, whatever they might be. Best of luck to all!

Wanting to reject the option of Aromatase inhibitors

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