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Terrifying stories

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I'm going in for my oncoplastic lumpectomy on Thursday. This will be followed by 3 weeks if radiation, and then.... An aromatase inhibitor. They caught this early, and everyone is telling me how lucky lucky lucky I am.

I'm terrified. Not by the surgery or the radiation really-- in confident that this part will go well. But by the drugs which, based on what I'm reading, will cause my blood pressure and cholesterol to skyrocket, destroy my bones, leave me at risk for early onset dementia, and make me feel like I've aged ten years.

It will decrease my chance of cancer returning-- but at the price of utterly destroying my physical and mental health. Is it worth it?

I'm healthy. Really healthy. I want to stay they way. I worked hard to bring down my blood pressure and cholesterol since heart disease runs in my family. I cannot afford to lose that ground. Maybe some people live with all kinds of ailments disability and cope-- but I don't want to join that club. I'd like to go back to two months ago when my biggest medical problem was a slightly achy knee. Is this wrong?

Otoh, I hear other repeated stories: "I didn't have any side effects. It all went without a hitch." Which is it?? Wth? How do you do this?

My doc insists that I "have the best kind of cancer," but I am not convinced. This is really terrifying.

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Comments

  • beaverntx
    beaverntx Member Posts: 2,962
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    Yes, the unknown is usually terrifying! Try to take all of this one step at a time, surgery first followed by healing and then on to the next step... Remember there are choices in hormonal therapy and you will not know what side effects you might or might not have unless you try. There are many of us who are tolerating the therapy but it is likely the large number of them are not on these boards so you will not hear from them.

    As we say here, in your pocket on Thursday!

  • alicebastable
    alicebastable Member Posts: 1,944
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    Where are you reading about these extreme side effects? Sure, SOME people have SOME problems, but it's pretty rare for anyone to have every possible side effect. Look up the possible side effects of Tylenol or any NSAID and it sounds like a person would have to be desperate to take them - but everyone knows those extreme side effects don't usually happen. Same with the AIs.

  • Jewelweed
    Jewelweed Member Posts: 46
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    Are you really trying to suggest that AI is comparable to taking Tylenol? That eradicating estrogen from my body won't have an impact on my health? Let's get serious. I get that you are trying to be reassuring, but please read the forums here about all of the major health ramifications people actually have.

  • sunshinegal
    sunshinegal Member Posts: 67
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    Hi jewelweed,

    I just started letrozole last week, so I can't comment yet on what side effects I'm experiencing (so far so good), but it seems to me that you could start the hormonal therapy and see how you do on it. If you start experiencing the unwanted side effects, you could switch or stop. My impression is that the side effects reverse/stop/go away once you stop taking the med, so perhaps that's a path worth considering.

    Wishing you all the best!

  • melbo
    melbo Member Posts: 266
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    there are terrifying stories about everything in the world from driving a car to walking in a sidewalk. The world can be a terrifying place all of the time. But that doesn’t stop most people from living their lives and doing the basics to keep themselves safe. I know it’s not the same thing as this exactly, but just because terrifying things happen to some people, it doesn’t mean they will happen to you. The best you can do is put your fear into as much perspective as you can and then move forward.

    For AIs, you can always try them and then stop taking them IF you get side effects that compromise your standard of living to a point you can’t tolerate. But not trying them at all because of the mere risk of side effects is giving in to fear.

  • threetree
    threetree Member Posts: 1,349
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    Jewelweed - I too would suggest giving them a try and consider switching or quitting, after you see how they affect you. I also agree with you wholeheartedly that to compare an AI with Tylenol is some sort of "false equivalent" . There are side effects and then there are side effects. AI's have very serious side effects and we are expected to put up with them day in and day out for years to come. That is nothing like taking a Tylenol for an afternoon headache! I have awful side effects with Letrozole, but as you will see here, there are many who take these AI's who seem to be able to put up with them/tolerate them in one way or another and/or find that their particular side effects aren't all that bad, so it would be worth it to give it a try. We are all different.

  • Messenger77
    Messenger77 Member Posts: 9
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    Jeweleweed, I agree wholeheartedly, there’s no comparison between the two. I too have loads of reservations about certain meds and treatments. Nothing wrong with investigating

  • Jewelweed
    Jewelweed Member Posts: 46
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    Oh I'm going to try them. I don't want cancer coming back! But I am also going to watch my bones, BP and cholesterol like a hawk. My mother had a heart attack at age 49, and that is not a direction I want to follow.

    Word from my oncologist is that my success at managing my heart health so far is a good indicator an for how I might weather AI later. I hope she is right. I also successfully tapered off Prempro with weirdly no side effects at all. I'm hoping that's a good sign.

    I've also talked to a few women who've been through this-- they all said they were fine, and all of them are healthy and active.

    Are there any real stats on how many women experience extreme side effects? This could be helpful.

  • aram
    aram Member Posts: 320
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    Jewelweed, the comparison with Tylenol is very common. My oncologist gave me the same comparison when discussing side effects of chemo which are much more terrifying than AI including possible cancer. That does not mean she was saying Tylenol and chemo are the same. The comparison is to remind us everything might have side effects but not necessarily everyone get those. Is is possible you might be one of the unlucky ones? Yes. But the opposite is also possible.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,832
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    Thank you aram. I think the point was not to equate the two drugs but to point out that even drugs which most consider relatively benign can have severe se’s for some. alicebastable is a long time member who fully understands that these drugs are not equivalent but that wasn’t the point.

    I have been on all of the AI’s, currently on exemestane. I kept switching in the hopes that the se’s would diminish. The se’s were neither crippling, life altering, etc., simply annoying. My QOL and overall lifestyle have not been effected. Will my experience be applicable to others? No and there is no way to predict how a given individual will react. Yes, reading bco will expose you far more to complaints as people tend to post when they are experiencing issues than when things are fine. That’s just human nature!

  • alicebastable
    alicebastable Member Posts: 1,944
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    Thanks, Aram, that was exactly what I was trying to say. And for whoever said it was a false equivalency, I got kidney cancer from years of taking NSAIDs, so no. And too many years or heavy use of Tylenol can destroy your liver. Aspirin can severely damage your stomach and esophagus. ALL drugs have possible dangers. At least the various hormone blockers are monitored by an oncologist so any side effects can be reported early.

  • typhoon
    typhoon Member Posts: 59
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    Jewelweed - FWIW, I have been on anastrozole for almost nine months. I have no side effects. None. My blood pressure is great, and my cholesterol levels are well within the normal range. As it turned out, I already had osteoporosis (it runs in my family) at diagnosis and am getting zometa infusions every six months (no side effects there, either). I work full time at a pretty demanding job, walk at least five miles a day, work out with weights a few times a week, travel as much as COVID will let me, hike and spend as much time outside as I possibly can, and have the added bonus of feeling pretty good about doing everything I can to make BC a one-and-done experience.

    We are all individuals, and we all react differently to medications. Please don't assume that the worst potential side effects of AIs are unavoidable. I am by no means an outlier when it comes to doing well on AIs, and your chances are good that you will not suffer from them either. If you do decide to go the AI route, and you don't find the meds to be tolerable, you can always stop taking them.

    My oncologist told me that I "have the best kind of cancer," too. That comment really annoyed me - I'm thankful that we caught it early, thankful that I had so many treatment options, but not in the least bit thankful or grateful about having cancer in the first place. There is no "best kind" of cancer; there are varying degrees of bad, but there aren't any good or "best" cancers. I've found the whole experience of cancer to be terrifying, tbh; I managed to get through almost 60 years of life with no medical ailments more serious than a broken arm (at 13) and a case of walking pneumonia (in my 30's). To go from being extremely athletic and healthy to being a cancer patient is a surreal experience. Counseling has helped; being in good shape already helped me bounce back from surgery pretty quickly; and, as I said before, feeling like I am doing everything I can to keep the cancer from coming back is a real mental and emotional boost.

    Good luck with your decision-making!

  • Jewelweed
    Jewelweed Member Posts: 46
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    Okay, we this is reassuring. I am so sorry you went through all of that!

    What sort of tests/tracking is typical? I already had a bone density scan and it looks like I have osteopenia in the lumbar area. So I'm now taking calcium and vitamin D. I'm assuming there will be follow ups.

    Thanks

  • Jewelweed
    Jewelweed Member Posts: 46
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    Oh god, I am so glad to hear someone else say this! A therapist, who specializes in supporting people who have cancer, made the comment "you won the breast cancer sweepstakes." Really? Srsly?

    I am glad this isn't worse, but I do have a battle ahead of me, and this ain't a plate of tea and dumplings. I think winning the" breast cancer sweepstakes" would be to not have this at all!

  • threetree
    threetree Member Posts: 1,349
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    Alice - I'm really sorry about all of the troubles you've had and I have read about a lot of them over time, via these boards. I just don't believe that because OTC (and all drugs) have side effects that they can be directly compared to AI's. When you took the NSAIDS did you have debilitating side effects from them every day all along, or did the cumulative effect of taking them for years just start to show up one day? Did your doctor push you to take those every day for years? Did the doctor almost scare you into thinking you might die if you didn't? Most people don't take NSAIDS every day for years. Those who take AI's are supposed to take them every day for years and years. I'm sure you had your reasons, and I'm truly sorry that they made you so sick in the end and that you've had so much to deal with, but the idea that "all drugs have side effects", period, is not a good analysis to use when someone is trying to make a decision about a particular drug in their particular situation. Also, I agree with exbrnxgrl that you have been here a long time and make very valuable contributions. Don't mistake my disagreement for devaluation.

  • Jewelweed
    Jewelweed Member Posts: 46
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    "Those who take AI's are supposed to take them every day for years and years. I'm sure you had your reasons, and I'm truly sorry that they made you so sick in the end and that you've had so much to deal with, but the idea that "all drugs have side effects", period, is not a good analysis to use when someone is trying to make a decision about a particular drug in their particular situation. "

    This. Thank you for making this point. And Alice, I am so sorry you had to go through this! I appreciate everything you are saying!

  • debal
    debal Member Posts: 600
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    my only suggestion is have a time frame in mind as to how long you will tolerate the side effects before deciding to quit. I was fine for the first couple months. Then side effects peaked for me about 6-7 months. I was miserable with joint pain. Hanging on to rail and walls to get down the stairs. Once I laid down it was miiserable to get up. I switched to a different manufacturer of the same drug. Side effects now are so much better and tolerable. For me it's important to make the best decisions that will give me piece of mind. No guarantees of course. I'm one of those that are more scared of recurrence than I am of tolerable side effects. I run 3 miles most days, hike, walk etc with no problem so my quality of life is not affected. I'm glad I got passed the rough period.


  • Jewelweed
    Jewelweed Member Posts: 46
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    I want to ask again before this question gets lost:

    Could someone point me to actual statistics as to how many women develop serious side effects in response to AI?

    What are the chances that I will develop heart disease? How does this compare to the level of protection I will have from getting cancer again?

    In other words: If I am putting myself at a high risk for a heart attack or stroke in exchange for a slight reduction in my chances of getting cancer again, I think it is valid to question this treatment. If side effects are truly rare and the reduction in getting cancer again is much better than just slight, that's different.

    I can't judge at all until I know more about what the statistics actually are. Some of you are saying these side effects are rare-- how rare? What is rare in this context? I hope this is true. Thanks in advance.

  • threetree
    threetree Member Posts: 1,349
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    Jewelweed - I think Beesie might have some info for you in this regard. She usually catches posts like this and has a lot to offer. Check back and see if she doesn't respond at some point.

  • Jewelweed
    Jewelweed Member Posts: 46
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    Thank you! I'd be very grateful for this!

  • piggy99
    piggy99 Member Posts: 183
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    Jewelweed, the link below is the Femara (the brand name for letrozole) label, and it includes pretty much everything the FDA considers important about the side effects. Pages 7 and 8 have a comparison between Femara and placebo.

    https://www.accessdata.fda.gov/drugsatfda_docs/lab...

    As you probably already know, it is important to look at the difference between placebo and the drug, rather than the absolute incidence of the side effects. For example 22% of the Femara patients had arthralgia (painful joints), but so did 18% of the placebo patients, so the difference is only ~4%. Cardiovascular ischemic events were similar (0.3% higher for Femara, but not statistically significant); no statistically significant difference in total cholesterol or any lipid fraction (both arms allowed mitigation measures such as cholesterol-reducing agents).

    The bone effects upon extended use are on page 3, and looks like there was increased incidence of bone fractures (13.3% for Femara vs 7.8% for placebo and osteoporosis (14.5 for letrozole vs. 7.8 for placebo).

    It's a lot of information, and because the studies were done in different settings, and patients were followed for different lengths of time they do not match perfectly. However, it's pretty clear that the bone effects are real, and you should discuss mitigation with your doctor. On the other hand, the effects on cholesterol and cardiovascular health are minor.

  • alicebastable
    alicebastable Member Posts: 1,944
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    All I'm trying to point out is that nearly every drug, whether prescription or OTC, has side effects, both immediate and cumulative. But those drugs also fix or alleviate specific conditions. If the condition is scarier than the side effects of the drug, try taking the drug. It's not a gun-at-your-head, lifetime commitment. If you, personally, can't tolerate it, talk to your oncologist and they'll prescribe something else, or a more tolerable dose. All the statistics in the world will not tell you how YOU will respond or react to any particular drug.

  • olma61
    olma61 Member Posts: 1,021
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    Hi there, I always hesitate to contribute to a thread like this since I'm Stage IV and also on Herceptin indefinitely but here are a few observations -

    - I'm post menopausal and after doing a lot of reading during my initial diagnosis, I requested Arimidex as my AI because it seemed to have the smallest number of “scary stories" and side effect warnings. My onc agreed and I've been on it four years.

    - side effects that are warned of in the package inserts of these drugs only happen to small percentages of people. If the more severe SEs were happening to everyone, the drug would be off the market. If you look at the research behind the drug,you can see the percentages etc.

    - as for heart complications, I do feel qualified to offer my experience here. I had hypertension prior to cancer, for a long time. It's under control with medication. I have been on anastrozole plus Herceptin and Perjeta for 4 years. I also had six months of taxane chemo at the beginning of treatment. Herceptin carries its own risk of cardiac problems and I must get an echocardiogram two to three times per year. Every one of my echocardiograms so far has been fine. Every other test my cardiologist does is always normal. That doesn't mean you are guaranteed the same results but it does show that four years of anastrozole does not automatically mean you'll develop heart disease.

    - I do have other side effects - joint pain, muscle cramping, fatigue- but so far, for me, they are livable. I don't have the option of stopping this drug (it's not a choice I would make in my situation) but I *could* request a different AI to see if I tolerate it better - but so far I haven't been moved to do that. It's just not *that* bad, and I can mitigate some of the discomfort with movement, the heating pad, stretching exercises, magnesium helps with leg cramps, etc.

    I used to be an avid exerciser but COVID has reduced my activity to a great degree - but my heart is still healthy and my BP under control.

    Just wanted to share that experience for whatever it's worth. Good luck with trea

  • findingoptimism
    findingoptimism Member Posts: 31
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    Jewelweed

    I think drugs.com has the information on side effects you are looking for. Look up the drug you have been prescribed then go to the professional section. If you scroll down it shows the adverse reactions and their frequency. There are also multiple studies you can access to get more details


  • bcincolorado
    bcincolorado Member Posts: 4,700
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    The main site has a great pdf version you can download on side effects of all hormonal medications. I found it helpful l to me I know. I was on Tamoxifen and then Letrozole after that. My attitude though was that it was keeping the cancer away. I know my MO checked my labs regularly for any bad issues it had in there and I did go on Prolia at one point with Letrozole as a result of bone loss. Other then that nothing. Best wishes.

  • jhl
    jhl Member Posts: 174
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    Jewelweed,

    Drugs are my thing so I'm going to share one of the largest observational studies to date: https://www.ahajournals.org/doi/10.1161/CIRCULATIO...

    Reading this will be scary if you are not used to reading scientific studies and know something of statistics. It is very important to know this study compared taking AI's to Tamoxifen - not AI's to the general population!! You must understand this well so no one goes off misleading folks. This study found there was an 86% increase in heart failure and a 50% increase in cardiovascular mortality COMPARED TO TAMOXIFEN, not the general population. Delving into this study you will find there were more than 40 confounders to the data - everything from not ruling out preexisting cardiovascular conditions to the use of other things that can increase the risk of cardiovascular mortality such as limited exercise to alcohol consumption. They have tried to weight these results as best they could but the design of the study limited that. However, it comes down to how AI's work compared to Tamoxifen. The two hypothesized mechanisms are AI's increase risk by increasing LDL and the second, Tamoxifen causes a cardio protective effect by its effect on lipid levels. One might say on the surface, tamoxifen is the better bet. However, you cannot evaluate the risk without knowing what the risks are in other tissues. There are studies for that as well.

    Finally, you cannot evaluate cardiovascular risk without considering estrogen itself is cardio protective. That was the reason there was a big push decades ago for hormone replacement therapy. But, we discovered that providing hormones well into menopause caused it's own set of problems. As ER+ breast cancer patients, we have a unique need to decrease our estrogen either by lowering the circulating effects or blocking its effects on receptors.

    This information & how to evaluate it in context is very very hard for those who are not knowledgeable in reading scientific studies. I am not suggesting you not do research, rather do your own research & take it to your doctor & have a discussion. I absolutely disagree that oncologists want to bully, berate or shame women into doing something they don't want to do. But, they have very little patience for trying to explain why some 'terror' story you have read is more important than their considered insight which has taken their adult lives to acquire. So, take your concerns, your reading & your fears to your doctor. Have a discussion then make a considered decision.

    Be well,

    Jane

  • typhoon
    typhoon Member Posts: 59
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    Jewelweed - I had a long conversation with my oncologist before I started taking Anastrozole. Like you, I had questions about side effects and longer-term serious effects, and wanted to know the pros and cons, risks vs gains, and so forth. My oncologist was happy to discuss why she was prescribing Anastrozole for me and, at the end of the discussion, I was satisfied that this is the best course for me. Your oncologist really is the best person to tell you why she is recommending AIs for you and your specific cancer. If your oncologist isn't willing to do that, then perhaps a change in doctors might be warranted.

  • Glowolf
    Glowolf Member Posts: 1
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    Those bitter-sweet words “the best kind of cancer” apply to me over here too. I’m still adjusting to the tamoxifen after starting it back in June. Some of the side effects suck, but none as much as cancer did. The more I keep reading, the more I’m seeing that the side effects get better as you adjust to the medication, and there are a lot of other medications that can help relieve any side effects. I came looking for some answers on that very subject and found so much that I am tickled pink.

    Bottom line, I’m glad you are going to try the hormone treatments. As much as I’m not enjoying fatigue and ridiculous brain fog, reminding myself that I survived cancer helps. So does reminding myself that cancer can come back. The only thing I can think of after fighting cancer is battling it again. Me personally, I’m going to do whatever options my doctors have to stay cancer free. The most important thing is working with my docs to manage side effects and get things to suck as little as possible because I’m 43 and have a plan to live at least as long as I already have.


    Let’s conquer our “best kind of cancer” as a team and fight to keep it away!!

  • eauclaire
    eauclaire Member Posts: 7
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    Hi, glowolf, thanks for your informative post.  My bothersome side effects from Tamoxifen, after 2 1/2 months are hip/femur pain, depression, mood swings and anxiety, and more brain fog than I already have at age 70. Any information you have about medications to help these SE's would be helpful. And I'm hoping the pain and depression will diminish after a time.

  • Mel58
    Mel58 Member Posts: 2
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    I was just given a script for arimidex the other day. There was no discussion on the good things this drug does. It was all about the side effects. I really wanted my MO to talk up the drug but that did not happen. I asked if any studies were done with women who did not take these drugs. She said no. I had an Oncotype of "1"!!! I understand that determines the benefit of chemo but with a recurrence rate so low why do this possibly debilitating treatment. I had such a difficult time with regular menopause I don't want to do it again. Addressing my fears with well you can stop taking it and not presenting valid reasons and facts and studies to support taking them. I am scared to take them and scared not to take them .