Thanks for your reply, WhiteTara. I was using a lot of Miaderm - developed by radiation oncologists and highly recommended by other radiation patients. My breast was never burned, the damage was to my side just below the arm pit, and I did not get radiation to my lymph nodes area. I was told it was just from friction, where my arm meets my side. I did use the Miaderm in that area too, so who knows.
Wishing you well,
You ask a lot of sensible and important questions. 💜 The Letrozole tablet *does* prevent the cancer from recurring-that is not what I was/am questioning (just in case there was a misunderstanding) re: what you wrote "a low benefit to endocrine therapy", but it is the actual recurrence rate of the cancer that we all need to think about, when making decisions to start/stop any cancer-related treatment. What risks are we prepared to take, etc? and these should always be discussed with our oncologist just so that we have all of the data available (mine loves throwing stats at me-and I love receiving them) because it's important that I understand what % of women (with my type of cancer), experience a recurrence, and after how many years, etc. At the end of the day, we can all make our own decisions, but we need to do so whilst being fully informed-that's all.
Apologies if there was any confusion from my previous messages.
Good luck starting your endocrine treatment-don't panic about it-go into it with a very open mind.
First of all-good luck with your radiation sessions. I don't know who your Q. was for but I can answer a couple of questions: *yes* to working throughout radiation, but (I am self employed so I could do this) I planned my client meetings *before* my radiotherapy sessions, then drove myself to my 20 days of sessions. For me, the hardest part of the radiotherapy was the position my arms needed to be in (above my head)-because I have had a frozen shoulder in the past-it is still difficult for me to overstretch, which is exactly what I needed to do. I think the psychological/emotional effects of the radiotherapy can be worse than the actual physical-it can feel lonely, and scary if you go on your own. I went on my own, and though I am independent, and normally very "brave"-it did get to me in the first few sessions. Once I reached the halfway mark (session #10) I could see the end:).
Re-side effects of Letrozole-don't panic and don't pre-empt. What others have experienced, you may not. And if you start the drug and feel dreadful on it, you *can* have a conversation with your oncologist. You wouldn't be the first, and you won't be the last. They know that many women struggle with the various SE's, but try and go into it with an open mind-I was like you, back in 2018 when I started mine. I had read all about the SE's but I focused on the function of the drug-that it was saving my life. In fact my breast surgeon assured me that the drug was more important for me than my two surgeries in saving my life:). It's a powerful drug-it stops cancer from returning and shrinks the cancer that is already there (if you start it before any surgeries, which I did).
And finally, like you, I had a very low Oncotype score which allowed me to skip the chemo.
You *will* be fine-just keep an open mind and focus on the benefits of both the radiation and the Letrozole.
Sending you lots of love...xxx
Thank you for your well wishes, and that sounds like a very sensible thing to do. Personally, I think that cardiologists, dermatologists & other relevant specialists should be part of the breast cancer team:). xxx
Princess Porpoise, Sorry to hear about your radiation burns. I just wanted to share here in the hope it might help others, that I had 25 rounds of radiation and my research led me to treating the area after each round and throughout the day with first aloe vera and let it dry, then calendula cream with a few drops of lavender oil mixed in. After 5 weeks of radiation treatment I had no burns, and I have very fair skin. The treating staff were advising sorbolene creme, I’m glad I didn’t listen to them.
I agree and may see a cardiologist. I also may need a neurologist before all this is over!!!
I wish you the best with your treatment.
I am not sure about all the different brands - mine is manufactured by Accord (substituted for Femara). There are two other aromatase inhibitors your oncologist could try you on. I have a friend who had to try all three until she found one with the least side affects. I believe it was an anastrozole (Arimidex).
I was fine during my 3 weeks of therapy and 4 radiation boosts. I am retired so no work for me but no problems with daily or social activities. However, after radiation ended the next two weeks were terrible. The skin peeled off the side of my breast and was absolutely raw to the point where I couldn’t even wear a shirt. My radiation therapist warned me that the radiation keeps building up after treatment stops and to remember “things always get worse before they get better”. Boy, was she right! I still have very dark skin in that area and am not sure it will ever fade. I started moisturizing my breast 2 weeks before therapy started and 3-4 times a day during and after treatment. Definitely moisturize and pray for the best. If you get fatigue, many do, try to push through it with light exercise or a walk. My letrozole side effects are minimal - tingly finger tips and mild headaches. It’s the long term possible side effects I’m worried about. Especially dementia, cardiovascular disease and osteoporosis. I have a doctor friend who suggested I see a cardiologist to monitor me while I’m on the medication even though I have no cardiac issues now. Best of luck with your treatments. ❤️
I am 4 weeks in to taking letrozole my bones hurt especially in my feet and hands . I am having surgery on 27th october. Is there one brand of letrozole that’s better than another
I was really worried about taking it, and was nearly put off altogether by what i had read. Everyone reacts differently, so you wont know unless you try. You may get no side effects, or minimal ones. I think post menopausal women maybe get less effects, as their estrogen levels are already lower. I'm 62, and been on it for 2 years. My side effects are that my skin and hair are dryer, and i have zero libido now. I am post menopausal anyway, so not unusual with lack of estrogen that women experience anyway as they age. Other than that, been fine. Eat healthily and exercise, and you should be fine! I have Accord brand specified on my prescription, as its the nearest ingredients to the expensive Femara, as i researched the ingredients of all the brands. Some people seem to get more side effects with some of the brands fillers. I have stuck with Accord, so not been given all sorts of generic makes, and i have been fine with it.
Im 58 not fit as exercise fit but i feel healthy move fast and scared im going to wake up like an old lady struggling to walk and move.
Nice to hear nobody having side effects.
Im terrified of starting it which i will in about 6 weeks.
Only just read can get dementia the side effects are just never ending.x
My grade 3 stage 1 but everything else same as you.
Managed not to gave chemo after a goid oncotype score.
Start radiation on Tuesday and hormone tablet after that.
How did you go with radiation could you still go to work?
How you going on medication?
Hi K🐱 - My cancer tumor was 6mm (only detected by digital mammogram), stage 1, grade 1 hormone receptive positive, HER2 negative. I had a lumpectomy with clear margins and clear lymph nodes. I did 3 weeks of whole right breast radiation with 4 boosts at the end. Have been on 2.5 mg of letrozole for a little over 3 months.
I hear you & have the exact same concerns as you. From my own experience, the cancer teams are primarily concerned with preventing cancer from returning and they see it as a trade-off; "sure, you may develop lung/heart problems, but look....we stopped your cancer from recurring". I read an article a few months ago that suggested that our breast cancer team should work alongside our cardiologist (if we are under one) in order to develop a plan for the benefit of both our heart care and cancer care, but in my experience, they seem so separate. I am 55, have one more year to go on Letrozole, but my "bad" cholesterol level *is* at the upper limit of what is considered normal-it's borderline high. I desperately want to come off the Letrozole because I am more concerned about dying of a stroke or heart attack than of my breast cancer returning (I have a very low recurrence rate anyhow). But my personality type is one of compliance-I tend to follow orders, especially doctor's orders. I just worry that our cancer teams do not fully appreciate that for many of us-with low recurrence....that the risks of heart disease (and ultimate death) are higher than death from the cancer recurring. 🤔
Yes-the *good* in the tablet is that it stops the cancer from growing. That's a really important "plus" for those of us with estrogen positive BC.
My sincere apologies for such a late reply. I don't check this thread as often as I should. I hear you, and in the end, I decided not to take the break, but to stay on the medication until Oct 2023 when I can come off it. Having said that, my "bad" cholesterol level is at the upper limit of what the cardiologist said he'd want it to be, but he also said that it's not high enough to warrant medication yet. I'm hoping that when I come off the Letrozole, that my cholesterol reverts to being good, with a low "bad" cholesterol level.
I'm so sorry to hear that your side effects were worse after you took the break-I'm really pleased to hear they seem to have levelled off now. I really pray that they stay that way for you.
I don't think any of us get all our answers. The biggest thing I want answered personally is will my cancer come back. And no one will ever be able to answer that until I die of something else. Oh the gift of a hormone positive tumor!! 🙂 Anyway if predict shows a low recurrence rate and a low benefit to endocrine therapy then yeah I'd push the conversation with my oncologist, too. What are the risks of dementia with it (low but then if your reward is also low from the cancer preventative side then that needs a thorough conversation with an expert). What are the risks of cardiovascular disease (although that we can monitor at least and do quite a bit to decrease any problems before they grow into life threatening issues). Anyway good luck! I won't go onto my endocrine therapy for another month but I'm dreading it since I have no idea what it will do to me. But it offers me quite a bit of protection since I had a grade 3 tumor.
Re Letrozole - It's early days for me only been on it a month. I noticed issues with my hand and fingers in the first two weeks and also joint pain especially in areas where I've had a previous injury (knee, elbow and finger). Also dry eyes on a night. But overall it's not that bad and if it stops the cancer reoccurring it's worth it. Chemo isn't effective on my cancer (only 4%) and I opted not to have radiotherapy due to my wound not healing well (dont want it to open up again)... So the drug is an important line of defence. I'll carry on with it, but if it impacted my quality of life so much it was unbearable I'd reconsider. There are options to take pain relief, eye drops etc... My philosophy - best quality, fun and active but shorter, is better than low quality, pain and miserable but longer life... ? It's Individual choice K🐱
I see my oncologist next week, I will ask again about the effectiveness of Letrozole. I had a 52mm ILC (& a 20mm DCIS) 8/8 hormone positive but with clear lymph nodes.
I agree there are lots of questions that are unanswered but I do believe we expect clarity when maybe it's not that clear.
My experience says if you need a second opinion ask for one. I think sometimes we don't push things because we are scared of appearing difficult. I'm much better when I understand what's happening even if it's not all great news. It helps me be less stressed and that's got to be a good thing.
If I find out anything next week that's useful for you, I'll let you know
🤗it's your body, you know it best of all xx
Thank you for your response. I understand what you said and appreciate your response. I have been working out for over 15 years and eat very healthy - lots of fruits, vegetables, fish, chicken, etc. I understand that anyone can get breast cancer, and am very grateful that mine was found so early by mammogram. I just have so many questions that are not being answered whether I ask my nurses or look for info on the web, which I know is not always accurate.
Thank you for replying. No, my oncologist has not run any tests. His nurse, I don’t see him, just one of his nurses, said to take the pill because it will reduce my recurrence risk by 50%. I asked what percentage of HR+ early cancers do recur and she could not, or would not, tell me. I did run the CTS5 test (tumor size, grade, age at diagnosis, and number of involved lymph nodes) that I found online and it showed my recurrence risk AFTER 5 years on an aromatase inhibitor is 1.6%. I will look at/take the Predict test - thank you so much! 💖
Have you and your oncologist put your details into Predict? https://breast.predict.nhs.uk/
It gives you a score of how 'effective' hormone treatment will be for your type of cancer. I found it useful to determine whether the side effects outweighed the benefits...
Aging causes dementia and cardiovascular disease. Lack of estrogen certainly contributes and of course letrozole causes lack of estrogen. But then so does natural menopause and plenty of women going through that reach a very healthy old age. If you have a hormone positive tumor then the standard treatment is to lower hormone levels so as not to feed further cancer growth. Because if you have further cancer growth then the treatments for it are harsh and lifelong. So although taking letrozole is a choice most certainly, if you can tolerate it the rewards of taking it far outweigh the risks which is probably why your doctor isn't wanting to focus on those risks. They aren't necessarily risks from taking letrozole so much as risks from maintaining menopause. But you can lower the risks of cardiovascular disease and dementia through diet, exercise, and other lifestyle changes and I think that's what most of us choose to do.
Hello! I am 63 and have been on letrozole for a little over 3 months now. I had a 6mm T1aN0M0 tumor - stage 1, grade 1, hormone receptive, removed in February with clear margins and no lymph node involvement. Nine weeks after surgery I had 3 weeks of whole breast radiation, followed by 4 boosts to the tumor bed area. Radiation ended May 20 and I started letrozole June 6. I have had very mild side effects but now there are days my head feels like someone is squeezing it in a vice. I have read that aromatase inhibitors, like letrozole, may cause dementia and also cardiovascular disease. In fact, most women with breast cancer die from cardiovascular disease, probably because the medication raises cholesterol, and taking calcium supplements may also do more damage than good. Has anyone out there asked and been told by their doctor that letrozole does NOT cause cognitive or cardiovascular problems? My oncologist ignores my questions and just says “take the pill”.
I have just finished 10 years of letrozole which followed 5 years of tamoxifen . I have had no side effects whatsoever. What I would be aware of is the effect it has on your bones . I now have osteoporosis , which the drug would have contributed to so regular dexa scans should be done.
as for the hair mine is in super condition since losing it all after chemotherapy in 2006.
wishing you all the best .
Hi there.... I started letrozole 20 months ago just as my hair was growing back after chemo...my hair seems thicker than pre chemo/letrozole....still as fine but more of it....so its definitely not a given that your hair will thin
Well, the good thing is that is helps prevent the cancer returning in the first 5yrs, which is when it is more likely to return if it does. I was very worried about taking it, after reading all the negative comments about it, but each person reacts differently, and i have had no noticeable side effects to speak of. Give it a go anyway, as it could save your life.
Hi, i have been on letrozole for 2yrs, and haven't had any hair loss. I havent heard of that been an affect i have even heard anyone comment on to be honest. I was very worried about taking it, due to what i had read about it, regarding joint pain, but i have had very little side effects to speak of. So don't be put off taking it.
I have been prescribed this tablet as I have secondary breast cancer I really don’t want to take it as I believe it causes hair loss is it as bad as everyone says
Yes really struggling with my back and every thing else with the side effects I’m so worried I hate taking this crap letrozole I have taken it since November last year seriously thinking about coming of it it makes you worry if it’s the tablets or if it’s the Big C I had so much energy and now I just feel worn out sixty in September and I’m a bloody live wire 😘love to boogie the night away 😘😘
Thank you🤓 I was thinking about this letrozole 'situation" yesterday and realised that,wonderful though the break was,the impact that the return of the side effects had on me was considerable,not least what it seemed to do to my head, and I would say if it's medically safe for you to do so,tough it out gal because 16 months will go in a flash! The dreaded side effects seem to have abated a bit now and fingers crossed it stays that way! Good luck 🙏🤓
That's really wonderful that you felt so much better on your Letrozole break-your message is really helpful to those of us who have been wondering "is it the Letrozole, or isn't it"? My oncologist has given the OK to take a Letrozole break too (I have another 16 months to go before I can stop completely); the main reason I *would* take a break is because my "bad" cholesterol level has been creeping up....from 2.0 to 2.2 and it's now 2.5. I believe 3.0 is the highest it should be. I'm tempted to take a Letrozole break to see if, indeed, it is the cause of the increase in my "bad" cholesterol but as my oncologist reminded me, if I do take a 6-month break, as an example, he would want me on it for an extra 6 months-so instead of stopping in 16 months, I'd have to carry on for another 22 months:). It's a trade-off, isn't it? I am inclined just to ride the wave and do my remaining 16 months, but I am mindful how important it is to have a lower "bad" cholesterol level. 🙄 Thank you for sharing your experience. It's good to know that you felt so much better off the Letrozole. 🙏🤗
Hi there,I'm69 and I've been on letrozole since May 2019 and had hormone receptive,no node involvement cancer plus high grade DCIS in the same breast so had a mastectomy then.In November '21,high grade DCIS was found in the remaining breast and though a wide local incision was possible,I opted for mastectomy because I found the annual mammograms and waiting for results excruciating.There is no way of knowing whether the letrozole stopped the latest DCIS from being an invasive cancer but my consultant gave me a 2 month break from it because she wanted me to feel "myself" ; it was wonderful!!! I get a plethora of side effects which quickly returned when I started the letrozole again but I'm simply not brave enough to discontinue it before the prescribed 5 years-it's a trade off I guess.Ultimately,no one can decide for you.I'd say get all the info you can,weigh it up and make a decision and you might even be one of the lucky ones who doesn't experience the side effects.Good luck🙏
Hmm, tricky. I suspect most blogs will highlight people’s difficult experiences with this drug, and those who aren’t having any problems possibly wouldn’t bother reporting ‘good news’. Everyone’s experience is unique, there’s certainly lots to weigh up, I’m hearing you!
Im in a similar situation to you. I’m 61. Had a mastectomy with no node involvement. My tumour was 11mm and ER positive. I’ve been offered letrizole. I really don’t want to even try it because of all the reported side effects. I don’t relish the thought of spending the next 5-10 years suffering only to then maybe die of something else . And do I actually really need the drug? I don’t know. Do I ? X
Hi, Same fir me, Have been on letrozole almost a year just before my surgery. I have some night sweats but can cope with them, but have terrible pains in my joints, knees anjles and feet, am 76 and already have arthritis, high blood pressure and cholesterol and hypothyroidism. Was pre diabetic, am now diabetic and feeling dizzy thirsty and more fatigued every day. I am wondering if at my age it is better to not take letri9 and hopefully bring down the levels of the other problems which are all a big problem too! I also have asthma. I take Turmeric, garlic, Berberine and Boswellia to try to help with the problems. It's such a hard choice to continue or not. Has anyone come off it a d had improved health? x
I have just come off letrozole after 10 years i had an xray on both hips last friday and both give way all the time i have been in agony since day 3 of taking these poisons first arimidex 9 months then exemerstane for 18 months then letrozole since ive not slept since taking them got a trigger finger brought on with letrozole nlood pressure higher and cholestral teeth suffered and hyperparathyroidism i am also now pre diabetic carried on as was scared of the cancer coming back but its ruined my body
I have been taking a year now ...bad head and joints at beginning ...then better but recently joints awful mornings particularly hands but better as day progresses
I don't really want to come off as best for my diagnosis.......and do worry for when stop taking in 5 years
I concur with Marla13, I'm post menopausal and have been taking letrozole 18 months. I did have some aches for about 3 weeks about 12 months in, my doctor suggested I was possibly fighting an infection at that time, which makes sense. My holistic GP has me on a high dose magnesium supplement, and no aches. Celery juice every morning on an empty stomach acts as an inflammatory, as does cutting down on dairy and red meat.
My biggest fear with letrozole is coming off them eventually. My doctor reckons I don't have to stop after 5 years, but it's recommended. I agree I will need to stop taking the letrzole, but does anyone else fear the oestrogen return?
I'd like to echo Dawn's report of her Letrozole experience; it will be two years next month, that I've been on Letrozole, and not only do I not notice any difference between brands (I don't think I do anyways)! aside from fatigue, irritability, & some stiffness in my legs/hips (mild-moderate)...I'm doing quite well:). I'm also on Thyroxine for my thyroid and am mindful that my low energy levels are partly due to my thyroid problem.
Dawn-you pose an interesting Q. re-women who were already menopausal. I was definitely post menopausal before starting Letrozole & I actually assumed that we would experience the menopausal symptoms far worse, given that Letrozole actually zaps *all* estrogen from our bodies whereas according to the science, women who are menopausal still have *some* estrogen circulating in their bodies. But your theory makes sense to me...maybe because or bodies were already lacking estrogen, the decrease in estrogen levels wasn't such a shock to the system. The one Q. my oncologist asks me each time I see her is "are you having hot flashes" & I always say no-in hindsight I probably get a hot flash once in a while, but not as often as when I was going through the menopause-if that makes sense. I experienced them more like *waves*...a real *whoosh* (lasting seconds) but *severe*...and then they dissipated.
But on the whole, Letrozole has been more than tolerable for me-I think we just learn to live with the SE.
So, Letrozole gets a thumbs up from me:).
Update: see my post below on cholesterol:).