Aromatase Inhibitor and just walking away.

Michelle_in_cornland

I TAKE TAMOXIFEN AND AM DOING GREAT!!! No side effects, except for some hot flashes and occasional muscle pain. I exercise, eat a really clean diet, am very social, very active and am happy. To all newcomers, before taking anyone's advice on here or any other forum, you can check out what they have been posting on other threads. If they are spreading false information, hate or anger towards their doctor(s) and treatment, ignore them. Unfortunately, we have persons that jump forum to forum, and spread negativity. They are not DOCTORS, PHARM D's, RADIOLOGISTS, etc. Take your own DOCTOR'S advice, because you are their patient. To the original poster, I apologize that your thread got hijacked.

Artista928

Well said Michelle. We do definately have those types of people. Watch for those who are defensive when they are not being attacked, or asking for no discussion in a thread.

dtad

Hi everyone...sorry for those of you that were offended by my post. There just does not seem to be a place on this forum where we can talk freely about not taking anti hormones. I'm not advocating this for everyone. I respect and support all decisions made. I'm just asking for the same. We don't all have to agee on everything. We all have to make our own informed decisions about treatment options. So much goes into that decision. Our age, type of BC, health status and much more. I simply don't understand why my decision is not received well. Dealing with this disease is hard enough. We need to support each other!

windingshores

dtad, I don't think anyone was offended by your posts. I was mystified and looked back a page and saw that some heated discussion was already underway. I do want to ask, though, why having an autoimmune disease led you to avoid anti-hormonals. I have an autoimmune disease and it has actually gotten a little better with Femara, perhaps because of the effects of no estrogen. I was concerned about this as well and could not find definitive info on the effects of AI's on autoimmunity. But overall I would say I have improvement in that one area, of autoimmunity, even though I do have other side effects. This summer I even went in the sun!

windingshores

KB870, I think people say that you can try the meds and then stop if side effects happen, because the progression of side effects happens over time, the side effects are fairly clear, and you can get early notice they are occurring and can stop before they do progress. I have been told that at least some side effects do reverse. I would insist on this information from your doctor or another opinion, the pharmacist, or the drug manufacturer. If no one has it, your question will help advocacy for trials. Maybe ask specifically about bone density.

In any case, I do think it is safe to try for a few weeks. Nothing horrible and irreversible is going to happen. I have found that the most bothersome and serious side effects take awhile to happen.

Also, I don't think it is helpful to "just exercise." My docs confirm that exercise over 45 minutes seems to be more helpful than 20 minutes- they hear that from me and other patients. The first half hour feels terrible and then things get better and I feel much much better after 45 minutes. I do Tai Chi and walk.. Swimming would be good , I would think , though not for bones.

Finally, after reading the Femara insert, I am investigating doing a half a pill each day, because the drug insert says a 20% dose was pretty effective and a half dose is as effective as a whole. My doc said that might reduce side effects. I am scared to do it and am going to find out why the dose of 2.5mg is standard.

I was a Polyanna about these meds at first. I now understand both the positive and negative posts, to be honest. I feel caught between my fear of recurrence and especially mets, and the cumulative effect of no estrogen on my body. I feel it every day. To be honest. But I would rather be here for my now late 20's kids (two of whom have medical needs) in pain and even disabled, than not here at all, so I try to keep going.

My Oncotype was only 8. But I had a grade 3, mixed ductal/lobular tumor that had LVI (focal, lymphatic) and I got a positive, equivocal and two negative reports on HER2 so not exactly comfy with my low score. Still, halving the risk is significant.

The really crushing question is what to do after 5 years, for me. If I can last two more years on Femara I will be at 5 years.

Good luck to all with their decisions. We just need to make sure we are well-informed and then take the risks we are willing to take. Measures of survival are different from cancer-free survival too. If a med affects that, then it is reasonable to think about stopping at some point.

Artista928

I posted this in the Femara thread regarding the importance for putting your profile public ESP FOR NEWBIES!

I have no idea how people think they will be found out by filling out their profiles with a user name of "fish" for example leaving out location. So that doesn't fly with me. They are being disingenuous and if giving advice, unethical. Newbies do not know age matter, stage matters, ER, Her 2, etc. I know I didn't. But someone here told me to look at profile when taking in any advice. It sounds so logical but when you are a newbie, you are reading typically the negative posts like se's and not paying attention to any of us who didn't have such a bad time whether on chemo, rads or meds. I would love for someone who refuses to put their profile up to explain to me how they may be found out if they post like what I said above. I'm waiting......

Moderators

Hello All,

Thank you to those who have posted thoughtful, and informative posts. We would like the conversation to please stay on track, in a respectful tone that observes our community rules.

Many thanks,

The Mods

Falconer

Windingshores, I guess you might know already about the BCI (breast cancer index) test. This may help you make a decision once you finish 5 years on an AI as to what next? Doing a simple google search will get you there.

dtad

windingshores...to answer your question I have multiple autoimmune disease. The most debilitating being a polyneuropathy which affects my entire body and is very painful. I just wasn't willing to take a chance that an aromatase inhibitor could further impact my QOL negatively. I also have interstitial cystitis which mimics the symptoms of a UTI. It's chronic and very much affected by low estrogen levels. So unfortunately I do believe I need the little bit of estrogen I have left at my age. Again this is my personal choice. I support and respect all decisions made. Good luck to all

Michelle_in_cornland

Dtdad and others that want a place to speak: why don't you start your own thread? You could call it, "why I chose not to take anti hormonals." That way, you can keep your conversations in one place, dedicated to those of you who are offended that the rest of us cannot accept your decision. Also, we can keep other's threads coherent. If they want to know why you chose not to take it, then they can visit your thread. No one will be offended, because only those of you thinking about not taking it will want to visit and discuss your reasoning. As a matter of fact, I am going to suggest this to BC.org. You can have a safe place to go with your ideas, thoughts, etc. and the rest of us can help those with side effects and early decision making. If a person chooses to go off their medication, then they can have the discussion with their Doctor. We are not equipped to give opinions on other's healthcare. We need a safe place for everyone, including newcomers.

Brutersmom

Michelle I thought his site was called Aromatase Inhibitors and just walking away. This thread helped me so much in making the decisions I needed to make. I felt comfortable to share my thoughts and plans when the Aromatase drugs became unbearable. Dtdad's thoughts were very helpful as were other discussions from different people. That is what this thread is about. Dtdad walked away before even starting. Others try the drug and find they cannot continue and need to walk away. I have had to walk away. I am pressured by my physician to go back on. I have fears because of the decision. I would hope that every one on this tread is open to both view points. We need to keep conversation open. I agree that this tread does not replace medical advice but what I have experienced is that the medical community is all about the drugs.

SJI

I also thought this thread was the appropriate place to discuss choosing not to take anti-hormone therapy. I appreciate the info posted on this thread. I have done a lot of research - using respected website - NIH, Sloan Ketterling, Harvard, etc.

A couple of things: My MO said studies have shown exercising 180 minutes per week AND following a healthy mediterranean diet reduces the risk of recurrence by 40 percent. I am doing that. It is a great motivation for staying on track with your exercise program.

He did tell me that I have a 1 to 2 percent risk of recurrence in the first 5 years and 20 percent risk after that. I plan to ask him about that again, because it is puzzling. Maybe I misunderstood him...

I have ILC which hasn't been studied as much as ductal and recent studies have shown Tamoxifen isn't as effective on ILC. (Even though I am post menopausal I can't take AIs for other reasons.)

I'm not opposed to medication in general, but I am really hesitant about taking Tamoxifen. I've picked up the prescription, but I think this is one time I should follow my gut feeling.

Again, I'm 64 years old, my ILC was slow growing, Stage 1, Grade 1 with a low Ki67. If I was younger with small children, or had a Stage 2, 3 or 4 cancer, my choice might be different.

The fact that the MO said Tamoxifen works on only 10 out of 100 women makes me think I'm not taking that big of a risk.

I don't think I'm over reacting to stories about side effects. One of my best friends has taken Tamoxifen and AIs for a total of 12 years without side effects. After talking over my concerns with her, she understood why I am choosing not to take the pills.

muska

The medical community is about reducing the risk of recurrences/metastasis. Unfortunately, as of now there is no better way than anti-hormonal medications for women who had ER+ breast cancer. Anti-hormonal medications may cause side-effects, in some people the side-effects are serious enough to warrant stopping the medications.

Since the risk of recurrence is usually higher in younger women and because younger women need to keep bc at bay for more years than older women it is important younger women understand the importance of making well thought decisions about these medications. In most cases, we only have one shot at this disease. Someone diagnosed stage I at 45 is usually in much better shape than someone diagnosed stage I at 60 or 70. Side effects of anything get worse with age. I have long advocated for including age in profiles on this site because the feedback is very much influenced by age.

This thread is about a group of women who had very early stage disease and for various reasons do not take anti-hormonals. The women are trying to convince themselves they made the right decisions. I see nothing wrong with that. What I don't understand, is why the meds and the medical community are often blamed for the unfortunate situation we all ended up in.

Best to all.

ElaineTherese

It is a luxury to be able to have this discussion.

I was just reading a NY Times article about cancer in Africa. This sentence caught my attention:

"In the United States, 90 percent of women with breast cancer survive five years. In Uganda, only 46 percent do; in Gambia, a mere 12 percent do."

Grateful to be here, with access to high tech detection and treatment.

Michelle_in_cornland

The original post pertained to someone that had COMPLETED 5 YEARS OF TAMOXIFEN. She did not walk away in her active treatment phase. This is not about not taking an anti hormonal from the beginning. I did suggest to the organization that runs this website, to help you create a safe space for your dialogue

dtad

I agree that the title of this thread is an appropriate place to discuss the decision not to take anti hormones. Aromatase inhibitors and just walking away? Really? How much more detailed does it have to be? To start another thread IMO would be redundant. The problem is that the subject is just not received well on this forum, anywhere! Again, I'm not opposed to anti hormone therapy and I'm happy for anyone who does well on it. I just want the same respect and support in return for those of us that chose not to take it for a variety of reasons. Whether its from the start, the middle or the end....

Michelle_in_cornland

Dtad, I am working with Bc.org to create a place, for those that don't tolerate or can't take anti hormonals. You should have a place for your thoughts, feelings, emotions, and discussions. While the title of this thread is a good one for you, the intent of the original poster should be respected. That individual completed the five years of Tamoxifen and was moving on to try an AI. Unfortunately, because anti hormonals are the standardized treatment for ER/PR positive women, opposing it is just not going to garner the same respect as taking it. (As a side note, parents that choose not to vaccinate their children face public scorn and reckless endangerment of a child. I chose my own vaccination schedule, a bit more spread out than the standard. If I would have posted that in a pro vaccination thread, I would have faced harsh scrutiny.) There are always two sides to every situation, and you should have a place where to confer with similar minded individuals.

Moderators

Just chiming in again to reiterate that decisions about cancer treatment are personal, and you need to feel comfortable with your choices. We encourage people to know their options, consider the risks and benefits of each treatment option, and talk to their physicians (and get additional medical opinions). We are here to support each other in whatever treatment decision a person makes.

marijen

Estrogens Mediate Cardiac Hypertrophy in a Stimulus-Dependent Manner | Endocrinology | Oxford Academic

https://breast-cancer-research.biomedcentral.com/a...

Relevance to human health

The benefits and risks of hormone replacement therapy remain unresolved, especially with respect to the cardiovascular effects of combined administration of conjugated equine estrogens and progesterone (54). Importantly, our studies directly address the possible negative cardiovascular effect of use of aromatase inhibitors to treat breast cancer (55) and as a prophylactic treatment to prevent breast cancer in healthy postmenopausal women (56). Our results show a direct and dramatic effect of complete aromatase inhibition on baseline cardiac function and pathologic cardiac hypertrophy in females. In addition, we found that many important hypertrophic signaling pathways are up-regulated at baseline in ArKO mice. Whether the same responses would be seen in postmenopausal women treated with aromatase inhibitors remains an unanswered question. Although trials with aromatase inhibitors did not show a significant increase in cardiovascular events (57), none of these trials monitored cardiac performance before and after treatment. In light of the data presented here, it would be prudent to monitor cardiac function before, during, and after aromatase inhibitor treatment. Given the wealth of literature on the modulation of cardiac function by estrogens, it seems reasonable to assume that long-term aromatase inhibition would affect cardiac function, especially given the possibility of underlying heart disease.

windingshores

Thanks Marijen, for the article on cardiac effects, particularly the reference to signaling pathways. I have developed atrial fibriliation since going on Femara. All my docs say no relation to Femara but I have my doubts. So far I am not taking blood thinners, but that could be seen as a possibility tied to my cancer treatment I suppose. I would like to see studies done on this.

I remain 51/49% on using Femara at this point in time, three years in, and can see all points of view.

twells

Well, I find this thread VERY helpful. As an 86 year old, newly diagnosed with breast cancer in both breasts, it is certainly helping me in my own decisions. My POV is obviously different than a younger woman's might be, but I'm becoming certain that, not only the side effects of aromatase but it's possible effects on eye health (I have glaucoma) and bone density make it a no go for me. Why on earth would I use it, or other AIs, for a possible 5-10% better chance of staving off distant metastasies in the next 5- 10 years.

What I don't understand is the pushback against not using them. BC is a serious disease with life or death outcomes. The decisions on what treatment to accept is uniquely personal. The more information the better.

marijen

Welcome twells! You said it well. And my opthamologist told me letrozole can cause swelling at the back of the eyes. I am also concerned about my eye health. Bones, heart, brain, too

BarredOwl

Based on the content of the original post, I do not see this as a thread broadly directed to "not taking anti hormone." In her original post, MT1 stated that she "took 5 years of tamoxifen and just three months ago switched to femara." MT1 elected and completed 5 years of therapy with Tamoxifen, and remarked on page 1, "Tamoxifen worked well for me." Her question was about EXTENDED ENDOCRINE THERAPY in years 6 and beyond in light of her recent difficult experience with Femara (Letrozole as extended therapy).

This appears to be a thread initiated by a person struggling with extended endocrine therapy with an aromatase inhibitor (i.e., beyond five years) and asking about the considerations of those who have followed a similar path and chose to discontinue such treatment (i.e., extended therapy, not initial therapy).

Decisions re initial endocrine therapy (years 1 to 5) and decisions re initiating/continuing/ discontinuing extended endocrine therapy (year 6 or beyond) both entail a risk/benefit analysis, but the analyses may be quite different even for the same person.

Those who receive a recommendation for extended therapy beyond five years tend to have a different risk profile from those who receive a recommendation for exactly five years of treatment. For example, elsewhere MT1 noted that she had 5 positive lymph nodes and was only 42 years old at diagnosis.

Medical advice for those considering an initial five years of therapy is based on different clinical trials. There are distinct clinical trials that are relevant to the question of extended therapy that do not apply to the first five years of treatment (e.g., MA-17 R; NRG Oncology/National Surgical Adjuvant Breast and Bowel Project (NSABP) B-42 trial; and IDEAL). The results of these extended therapy trials were no slam-dunk. The findings regarding potential benefit from these and other extended therapy trials materially affects the medical advice received in this setting, and current individual experience of treatment is acknowledged by researchers to be a major consideration.

If a person with a pending decision about the original topic of EXTENDED endocrine therapy comes here, it may be confusing because most of the discussion and recent shared decisions are not on point. The many studies discussed re initial therapy are inapplicable to their decision, and would be misleading regarding the potential benefits of extended therapy.

There are a variety of other existing threads that do focus on initial therapy decisions.

As a final note, I think people understand principles of patient autonomy, so I do not believe that people have (or can have) any issue with anyone's individual treatment decision, be it either to elect or decline treatment. Just as some have stated that they perceive a strong bias in favor of conventional therapy in this Forum, others perceive a rather strong bias against it. Neither is desirable. Ideally, new members would receive a balanced, representative, complete and accurate picture of the potential benefits and the potential risks of treatment, preferably evidence-based since we are in the conventional forum. As the header in the Forum indicates, there is a difference between sharing individual experience (which is inherently anecdotal) versus seeking to influence others to make the same decision to either elect or decline treatment.

BarredOwl

Brutersmom

Perhaps the title of this thread should read. Five more years or just walking a way.

marijen

Perhaps all of threads should be scrutinized. And duplicates eliminated before they start. There is a thread for five or ten years? - close.

marijen

I think that's a good idea BB.

Leidy222588

We need a new thread with the title "I have chosen to refuse Tamox/AIs." Those of us who have chosen to refuse them need to hear from others and be supported by others who have done likewise. I am one of them. I have my reasons. I completely respect other decisions and would never judge, and I would like to not be judged, especially on this site that is so wonderful and keeps me sane every single day.

Michelle_in_cornland

Leidy, why don't you start that thread. I am sure you will have others with alot to say. Not sure why someone else who feels so passionately about not taking anti hormonals, has not started one to date. It is very empowering to have your own thread, and own conversation.

Peetie1

Leidy,

Well said Leidy!! Are you going to open that forum?

Lita19901

I'd like to say something but I'll probably end up deleting it. I found this thread by accident through search terms. Neither the title or the first post brought me here. I don't think I even read the 1st post. I have found much of the content helpful but I am seriously turned off by the infighting.

I am one of the newbies you want either to protect or influence, depending on who's judging whom.

I just want information. I am capable of making up my own mind. I do not need to be protected. I am capable of detecting bias.