That's exactly the problem with such advice, even the medical experts can be conflicting.
I take epsom/magnesium salt baths now and then, not tried yoga, though I do walk, also have an excercise bike.
I was ER8/PR8, 20mm tumour, stage I, grade 2, 0/3 nodes. My surgeon called it "good news" for which I'm very thankful. Onco score was 12 and I had no problems with the radiotherapy, just the letrozole that's got it in for me!
It is indeed... I'd maybe revisit the Menopace advice with your oncologist. There is conflicting evidence out there on soy isoflavones - some fairly large population studies have found reduced risk of recurrence in pre and post menopausal breast cancer survivors. I was advised by my surgeon and GP that it was Ok to take them (I was ER+ 8/8). Have you tried yoga? Ibuprofen gel for your hands?
Thank you for your reply. I already had a healthy diet, home made soup most days, fish, chicken, (use turmeric in my cooking), low fat yoghurt, fruit, organic milk only, pure pomegranate juice each day, organic prunes for bones, weigh 60 kilos ("nice and slim" according to anesthetist!). No fast food, no crisps/sweets, chocolate in moderation. I took Menopace daily until my diagnosis when the BCN advised me to stop due to the soy isoflavones (also high in oxalates). I'm on Evacal/D3 since last July.
I've also changed all my toiletries/creams etc. to organic/toxin free.
It's a conumdrum. I'm really trying my best!
Just to add, as well as facilitating calcium absorption and improving bone health, vitamin D3 is also a very potent anti-inflammatory. Several chronic inflammatory conditions have proven links with vitamin D3 deficiency. Its important however to check levels and dosage with your oncologist as ultra-high dosages can have adverse effects.
Sorry you're suffering from these debilitating side effects. I've been on anastrazole for nearly 3 months and had some of the same, very random at times, but thankfully beginning to settle down (long may this continue!)
My sister managed to tolerate letrozole for 7 years. She's a retired GP (and I'm a retired breast cancer researcher, amongst other things).
We both follow a plant-based Meditarranean diet and walk/hike a LOT. A balanced diet with a good variety of anti-oxidants is key. My sister also found vitamin D3 supplements helped. I had my vitamin D3 levels checked recently and while found to be in the normal range was advised by GP it was safe to take 400iU/day (I take Menopace.)
You might want to speak to your oncologist about turmeric supplements - I plan to do a little more research on this as the evidence is mixed - I do however incorporate it in various Med diet recipes.
The other thing that can help enormously is yoga. Do you practice it? Our joints are kept lubricated by synovial fluid, yoga keeps this flowing ensuring that all our joints are well lubricated as well as nourished. Those downward dogs are enormously beneficial!
Hope you persevere and find some relief.
That's interesting WhiteTara, unfortunately I will not be able to try this as celery is high in oxalates and not recommended for those at risk of kidney stones.
(Diagnosed with breast cancer and kidney stones in same month. Definitely wasn't a good year!)
Inflammation is spot on. So, to reduce inflammation give celery juice a go. Works for me, been on letrozole 4 years now and no side effects after the initial aches started. At that time I researched ways to reduce inflammation and suggest you having a look at it online. The general rule is about 400ml on an empty stomach at least 30 min before breakfast. I have about a mug full and find this works for me and my body weight.
hi @jacqu it’s really simple. Oestrogen reduces inflammation in the joints - as well as having myriad other benefits - and Letrozole removes what little oestrogen our bodies make through aromatase. The longer we take the drug, the more time the inflammation has to attack our joints. And cause osteoporosis, cognitive decline, vaginal atrophy and all the rest. Not for everyone but enough of us. What you’re experiencing is the cumulative impact of no oestrogen, which is why 20% give up on it.
Been taking letrozole for 18 months now, had stiff/achy hands on waking which would gradually wear off as the day progressed but in the last few months more painful symptoms have appeared. Pain in both elbows on waking but thankfully have now gone, however few weeks later.....aches in both upper arms/shoulders (arms feel weak), then sudden pains in both hands, severe pain in both thumbs, a trigger finger on each hand, can't close either hand in a tight grip or hold a pen properly to write or able to twist open lids. Why such pains after 18 months of letrozole? At 66, I appreciate I'm not immune to the ageing process but these symptoms are so "all of a sudden". Reports say any symptoms settle down after a few months (not to mention the insomnia/hot flushes/palpitations!) once the body becomes used to this drug but with these sudden pains after 18 months then I honestly don't want to think of what five years of letrozole will do!
The radiation to the left breast I had in 2004 after breast conservation surgery may have given me a nodule on my left lung - as far as I know.
This time I had a mastectomy and reconstruction on the left side. But when they did the CT scans they found the nodule.
Taking letrozole seems to be the culprit as far as carpal tunnel surgery is concerned but maybe not. It could be the zeledronic acid IV infusions I am having now - I think it’s the letrozole though. Unfortunately us Seagulls are not known for their huge brains.
I have had an operation on my right hand which instantly improved my carpal tunnel in that hand until my nerves all reacted and I had six months of nerve pain which I eventually overcame by tapping the area so the nerves calmed down. I also had a couple of sessions of physiotherapy too and exercised my hand so I could wipe my bottom with my right hand again - at last! Too much information I am sure…
I don’t fancy any herbal remedies as I only really like randomised controlled trials before I will let anything through my mouth. Good luck to you if you want to try these but I would not recommend them. Cancer Research Uk has some information on Essiac at
I didn't realize that the radiation would do this to me (or you)....they are treating the breast not the hands and feet. I started taking the meds I mentioned in lieu of what they suggested and did a lot of research on them and suggest that anyone try them that they do the same. I now know 3 people who have used Essiac and no longer have signs of cancer. I did a lot of research on it prior to trying it. My niece had her 4th surgery for oral cancer and took it along with Ivermectin and she is cancer free. Ivermectin is supposed to stop the stem cell action of the cancer somehow. My neighbor mentioned it to me when I was picking up my Essiac that had been delivered to the post office. He laughed and said " I had thymus cancer 10 years ago and took worm medicine for animals and it cured my cancer", I knew immediately what drug he was talking about. I used it during the pandemic, which our CDC said wouldn't work or wasn't approved. Well it is in trials now and does work. Research it. I buy mine at our local farm store. Bless you and positive prayers for you.
I have been taking Turmeric, Essiac, and Ivermectin for the pain and Cancer. The pain in my heels have let up and the pain in my hands is nothing like it was 6 months ago. I exercise my hands daily to maintain movement. I still have pain like I never dreamed of but not like it was. Initially I couldn't take it and just sat in a chair and tried anything to stop it....note...rocking back and forth didn't help. Its a bit better now but still bad. I use Lidocaine roll on and compression gloves to help it. Hope this helps you.
I just needed a rant. I am exhausted at the moment because my mother has gone into a nursing home after breaking her hip and she refused to clear her house which I now have to sell to pay the fees. It’s two hours away from where I live. I have had to run my mum’s financial affairs for the last eight years or so as she’s got Alzheimer’s and I love her but she doesn’t really want someone else running her life for her.
The worst thing is she’s a lot more compliant now but somehow that upsets me more. I do feel a bit resentful as I didn’t have time to look after my own health as I was so busy running after her. There’s no point though as it makes things no better.
Thank you for thinking of me. I will just get on with it as we all do. The alternatives aren’t great. The medics give you the best advice they can, based on treatments that are available, how toxic they are, and what kind of cancer you have. They follow national guidance so you get the best treatment consistently across the country. Well that’s the intention. I decided to go to a Breast cancer Centre of Excellence as I had cancer in 2003 and had a terrible time at one hospital. So I feel more confident where I am now, but I am still anxious because it’s 19 years on, I have a different kind of breast cancer this time and I am post menopausal now. All these things mean I am having entirely different treatment from before. I also developed a lot of allergies to surgical tapes, glues, dressings and perhaps doctors and nurses over the period I had cancer treatment before. I had forgotten about these by the time of my recent treatment and I was plagued with them. I ended up covered in crusts with a gaping area in my abdominal wound. I looked at some photos recently and I couldn’t believe it all looks so lovely now. OK it’s a bit pink but not the disgusting itchy crusty and bright red it was from October to January or so…Seagulls
Hope your ok?]
I think I have a post radiation nodule on my lung too from 2003 but it means I am now meant to have a CT scan to find out if it’s getting any bigger. I always avoided hospitals after 2004 when my radiotherapy ended and I decided against taking tamoxifen or having mammograms so I sailed on after grade 1 no node cancer then.
In Feb 2022 I finally felt my breast after it started feeling tender and getting bigger and a better shape than before. And there were two tumours in the space left where my op had been before. But it’s a new primary so unrelated to my previous one, unfortunately grade 2 and spread to an intramammary lymph node. That’s rare but means that it may have spread to my blood stream via this route rather than through my armpit lymph nodes. I was amazed I didn’t have any of these left! They took them out in 2003, after I asked them to sample them. A sample can be 100% but that’s not what I was expecting!
So I am not happy taking treatment now as I wasn’t last time. I have carpal tunnel syndrome and that has definitely worsened after starting letrozole. They don’t seem remotely interested in this, all they want to do is save my life so I can live a long and painful existence. I don’t think that’s really what they are aiming for but in my bleaker moments I wonder if it’s so great being treated for a condition with a cure that gives you a lot of not very brilliant side effects.
I refused to take Letrozole initially because of the side effects, and my physician told me that I had agreed to take it in lieu of chemotherapy post surgery. I did start taking it and took it for about a year and a half...then suddenly, within about 4 days I started having extremely neuropathy in both of my hands and the heels of my feet. The burning on the tops of my hands is extreme. I knew immediately it was the medication as I am a retired nurse and research everything. The speed at which t affected me was what caught me off guard. I started taking anti-inflammatories to help ease the pain. I never dreamed in a million years it would affect my hands the way it did. I take Essiac, Tumeric and Ivermectin now. I told the Dr. I would not take his meds anymore. The pain is not as bad as it was in the beginning and I use Lidocaine toll on lotion with compression gloves to help with the pain now. I'm going to get my hands normal again whatever it takes. My last Mammo was normal but the CT scan shows post radiation nodules on the anterior right lung which will require a repeat scan in August. This is like "the cure killed the patient," No more radiation or chemo for me. If somehow I end up terminal, I'll drive my treatment.
Am still taking the letrozole, almost 4 years now, and don’t have any side effects I can attribute to the medication that I wouldn’t have anyway with the general ageing process. Have just had my yearly check up and the mammogram showed micro calcifications of dcis. I’d already had a lumpectomy and ancillary nodes removed 4 years ago. The stereotactic core biopsy was one of the most horrible and traumatic tests I’ve had through all this, the local anaesthetic just didn’t cut it for me. Anyhoo, seeing the surgeon next week about my options, I know another lumpectomy will be offered, but I can’t be bothered again …. Just take it this time.
Only 1 week my pains in my head were really bad and I had an aneurysm operation 2014 so I was scared I will start again this week cause I have to see my oncologist on Jan 24 and he will not be too pleased with me that I stopped
I have been taking Letrozole for 5/12 tears and have started to get very dry eyes and having to put in drops every outlet of hours.
Will go and see Gp to consider coming off it now as the burning gets very uncomfortable and people keep asking why I’m blinking all the time.
How long were you on letrozole for
Yes mine disappeared a couple years into the letrozole. It originally started after the paclitaxol treatment, in the tips of my fingers and toes, but has gone now.
Breast index test https://www.breastcancer.org/screening-testing/breast-cancer-index-test
Hi, no its not the same test. Its called The Breast Cancer Index test, where they test a bit of your tumour, originally tested in the Oncotype score test.
Hi Dawn-thanks very much for clarifying which test you were referring to. I believe this is the Oncotype score? I had one done when I was first diagnosed and my score was a 1-the lowest my oncologist had ever seen. Do you know whether the one you're referring to is the Oncotype score?https://www.oncotypeiq.com/en-GB/breast-cancer/patients-and-carers/stage-i-iiia-invasive/search/onco...
I stopped taking it I just had my surgery to remove my breast will discuss further meds with my surgeon when I go back
the burning tingling pain in the hands and feet is peripheral neuropathy, caused by the medication. No, it doesnt go away, but sometimes its not noticeable, sometimes it makes it painful to walk, like cramping in the feet.
Its caused by damage to the nerves, which hopefully will go away once i stop the medication, but it can become permanent, so i have read. The doctor has not said about any treatment for it, as its caused by the medication, other than medication for nerve pain.
I have found that having good supportive footwear helps, as if i dont wear shoes with good support, it gets worse.
Hi, I just came across your post today. Did the pain in your feet go away? I have had pain, tingling and a burning sensation in my hands and feet while on letrozole for the past 3 months. I've been taking it since April 2020. I will see my GP soon.
I am also on thyroxine for underactive thyroid, and have wondered if they interact. I am having my thyroid levels checked a few times a year, and they are within range, so thats all you can check. I have looked at the possible testing they do to see if you should stay on it for more than 5 yrs. It says...
The Breast Cancer Index test is done on your tumor sample from when you are first diagnosed. It can be used to predict the risk of recurrence in the 5 to 10 years after diagnosis in women whose invasive breast cancers are hormone receptor-positive and have not spread to nearby lymph nodes or have not spread to more than 3 lymph nodes. It can also help predict who might benefit from hormone therapy for longer than 5 years.
The test looks at 11 genes and classifies the results as low or high risk.
Thank you, PP, and my apologies for the late reply.
I wish you the very same, and agree-it may be time to see a neurologist if your symptoms/side effects don't improve.
I hear you, and empathise with all you wrote. I relate to the fatigue too, and cannot help that most doctors don't discuss the possible interactions between certain drugs; I'm on Letrozole too (this month it was Year 4) but I'm also on Thyroxine for an underactive thyroid & I can't help but think that my fatigue is not solely down to the Letrozole. Having said that, if we focus just on my running-which I used to be able to do-I find that my bones, joints knees hurt more now, than pre-Letrozole. And I do believe this has nothing to do with the thyroid issue but more to do with the effect Letrozole has on our joints. If Letrozole makes exercise more difficult, then it makes sense we will feel more fatigued. Exercise is good for us, and meant to increase energy/reduce fatigue. On another note, I, too, and interested in learning more about the new test they can do to assess whether we need to remain on Letrozole after our 5th year. I have my annual mammogram/MRI next month and would be keen to discuss this with my surgeon & oncologist. Do you know any more about this test, i.e., is it a blood test? A biopsy?
Sending you hugs and energy at this time...
Hi, I am having side effects building up now that your mother has. Been on letrozole since april 2020. I had reconstruction with an expander and nipple saving surgery. Recently had a silicone implant after expander removed. I am having increasing tiredness, and awful pain around shoulder blade on that side, which i believe is due to muscle and nerve damage from ops. No one seems to know whats causing it, so just guesswork. I am now wondering whether my side effects are partly due to my body reacting to the implant? Have so much pain around the implant, I am considering having it removed. My worry is i could have it removed, and still have the same pain and issues. It just feels like the problems are never ending. I have pressure on the chest which i thought was the implant, bit maybe it isn't, if your mum has that? Also feel throat restriction, having bowel changes, and nausea. I have lost my appetite, and lost some weight. My hair has gone crispy dry, whatever serums and conditioners i put on it. Same with skin. Had tests, but nothing shows up out of the ordinary. I would be interested to know what the test is that you can have after 5yrs, to see if you need to stay on Letrozole for longer? I really dont want to stay on this drug for longer than i have to,
Very interesting to read all the entries.
I'm a doctor from the UK and my mum has been on Letrozole for 4 years now. For a few months she started having almost the entire list of Letrozole side effects listed, incl. nausea, fluctuating diarrhoea, labile BP, hair thinning, reduced appetite with weight loss 10kg (obviously all other cancer investigations have been negative to date), hot flushes, poor sleep quality, back pain, fatigue, low mood and most recently chest heaviness. While symptoms are pretty classical, I wonder whether anyone has experienced side effects developing only 4 years into treatment rather then the usual course of a few months in and either resolving or persisting for the duration of treatment. Would be great to hear from other people about their experience
I sympathize with you and your wife. The lose of my quality of life is the hardest. I was diagnosed with a 4.3 cm tumor. I started taking Letrozole 7 months before my surgery and it reduced to 1.6 cm by then. The side effects gradually crept in over the first year. I had hot flashes and night sweats first. My surgeon suggested that I take 3000 mg of evening primrose daily. I still have hot flashes but not as bad. I am no longer woken up with night sweats. I do have some mental fogging but no one else seems to notice. The fatigue is the worst. I’ve done what I can to reduce. I was having issues where I wound have to sit down after a couple of minutes of movement due to the extreme fatigue. I have sine discovered that while I was taking calcium supplements with Vitamin D, I don’t think it was enough D for me. I started taking an additional D supplement. From what I read you have to have enough D in your body to absorb the calcium in your muscles . This helped with part of my fatigue issue. I take the Letrozole at night as puts me to sleep. All the supplements that I take are discussed and approved by my doctors. I still have overall extreme fatigue. My quality of life is so severely reduced. I want to go off it but…. I know this works on my cancer as my tumor shrunk a lot before the surgery. It was also in my lymph nodes so there is a higher chance of spreading. I have been on Letrozole for 4 years. I did try others but the side effects were worse. In Another year my oncologist will review if can go off or need additional year. He says there is new testing which can determine if I need the additional 5 years. I hope not. I don’t think I can handle an additional 5 years. I guess I will just have to analyze risk/reward then.
No drug is without side effects. Mine come and go and have varying levels of intensity most of which are dealt with by taking Ibuprofen and /0r paracetamol. I use an electric blanket occasionally to sooth back or leg pain or a herbal hot bath ! When on rare occasions it’s a bit worse than there are compression socks, gloves and stockings of various grades that help. The lower back pain can be resolved with a walk or a swim !
My advice is to take heart and I absolutely guarantee you that you will begin to ‘ read ‘ your body and calculate the levels of pain to instigate the appropriate measure.
Sometimes go for days or a few weeks totally pain free and it’s a mystery ! In the end pain becomes a guest in your body that you can deal with and even laugh at !
My pain has never prevented me from doing the things I normally do but,as I say, it varies.
My main gripe is that driving for over an hour gave me very uncomfortable lower lumber pain. Again, a bit of research and I was able to reduce it by 70% by using a car seat lumber cushion ! Don’t let pain get the better of you : it is manageable once you listen to your body !
best of luck.
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,
Thank you i think its mental health is awful through all this.
On round 2 if radiation 24 more then hormone tablet.
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.
Im scared also helping with one thing and pages n pages of scary side effects:(
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?