Hello, I was put on tamoxifen for about 2 months but went off due to side effects (brain fog, depression). It's been about 2 weeks off, and I feel pretty normal again. My doctor has prescribed Femara to see if I do any better. Does anyone have experience on Femara (letrozole) ? Curious about real-world side effects.
Also, I am wondering if anyone with HR+/HER2- stage 1 invasive ductal carcinoma with no lymph node involvement removed through lumpectomy followed by 3 weeks of radiotherapy has just chosen not to take the anti-estrogen meds and what led you to that decision.
thanks for an insights!
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Sagebud
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I was put on Anastrazole (Arimidex) in December, when they 'lost' my cancerous lump. I was initally fine on them, then the pain in joints started to the extent I couldn't put my foot down on the floor first thing in the morning. The brain fog was awful (and only just improving) and the hot flushes out of control, so last month I stopped taking it. Our NHS (UK) is dire, and I couldn't get into to see the doctor and when I eventually did, she said being a GP couldn't help prescribe anything it would have to be my oncologist. I have an appointment with him on the 2nd October, but as I have stopped taking anything and feel such a lot better am seriously considering not taking any brands. I have also been diagnosed with osteoporosis, whether this is a direct result of the anastrazole, I don't know but if by the time October comes around, I feel such a lot better, I think I will stay off them. I am 68 and felt I had no quality of life. Mine was HR+/HER2- stage 2 invasive ductal carcinoma with no lymph node involvement removed through two lumpectomy operations and radiotherapy.
I was fatigued had hot flashes and developed brain fog after 2 months. Naps are a regular part of my afternoon and after 3 weeks, the brain fog, forgetfulness and difficulty finding correct words cleared up!Still on Anastrozole since May 17, 2023. 5 years to go!
I was fine for four or five months, then it got a lot worse, I tried another four months but after the 8 months, impossible to cope with. Hope you continue to be OK on it
Please ask your doctor to have your results tested from your original biopsy. They keep the samples. They can be tested to see if you are benefiting from using these meds. I took them for 6 years. I wanted to stop because of the side affects. After5 years I asked my Dr if I could stop taking. She recommended I stay on for 10 years. So I stayed on another year before I had the test run. It cost me $995 out of pocket because insurance doesn’t cover it. It came back and results were that it was not making a difference so she said I could stop taking meds.
I have taken Tamoxofin, Letrozole and Exemestane. Tamoxefin was the best one for me with the least side affects. I get kinda mad thinking I probably was taking these meds when I did not need to. I am mad that you are not made aware of the possibilities of these tests and that insurance does not cover any of it.
So be your own advocate and if you can ask for the test. Mine were done in San Diego where my lumpectomy results were stored. When I asked if the sample was run off blood, they said no - it was from those original samples from the lumpectomy and nodes. They keep those. I don’t recall the name of the test, but I can find out.
Thank you, that is really worth knowing. I am in the UK and our NHS General Practitioners are not even seeing patients at the moment, only taking telephone appointments, which is a complete joke as its no good talking to doctors when you need to see them face to face, so I would have to go private anyway. Fortunately I do have the means to pay privately, as I know that it is something that is worthwhile, thank you. I am due to see my Oncologist on Monday, he is brilliant, and can point me in the right direction for private testing too. Thank you again, that's the best info received yet xx
I took letrozole for a year but developed chest pains on top of the joint pains, hot flushes, brain fog, fatigue. My oncologist suggested I come off for 6-8 weeks then try Anastrozole. Fingers crossed, I’ve been on this for 1 month and whilst some of the symptoms are still there, they are easier to manage. I have made a change to when I take them. I take them about 6pm and I then take tart Cherry plus a bespoke herbal mixture to manage the hot flushes (think she uses sage) and joint pains (turmeric). I also take a mushroom supplement for the brain fog. By morning I am much less stiff and achy than I used to be and my afternoon I have more energy. My brain fog has gone. I am going to try to stick with this for the next 6 years. I’d rather this than the cancer returning! I also have 6 monthly zolodronic acid infusions to prevent osteoporosis and bone metastases.
The doctor told me not to take Sage or Turmeric as it increases the oestrogen, therefore making taking the Anastrazole ineffective. I was fine on it for the first few months, but after that all the side effects came into force, hope it sorts you out, but please double check the Sage and Turmeric...Also just double checking this came up, that clarifies it:-foodforbreastcancer.com/art...
Thank you - I will look into this. My herbalist has a family history of breast cancer so I had felt reassured on her protocol but I will ask her specifically about sage and turmeric. The two things that are making my life easier 🤦♀️
I went on tamoxifen for 5 years then Letrozole for a further 5 years. My side effects were weight gain I went up two dress sizes and could not shift it. I also had water retention in my ankles, which could have been due to just bad circulation but has gone since lost excess weight and stopped letrozole. I also had problems with my bladder and break through bleeding which was put down to hormonal problems due to the letrozole. However I persevered taking it as my cancer had been lymph node involvement and was very aggressive so I wanted to make sure it did not come back so it was worth the side effects for me. I did not have problems with my bones as I took calcium tablets that had been prescribed by oncologist so my density remained good. I also did not suffer brain fog or depression. I had experienced bad brain fog after having chemotherapy so I cannot say I noticed anything on the hormone tablets. I hope that helps you I can understand you not wanting to take anymore drugs or treatment and you have to personally decide for your self what is best for your body as your experience with cancer was different than mine. All the best.
Hi there-I was diagnosed with a very similar breast cancer to yours, thought I would share my experience with Tamoxifen- I have been taking it for almost 4 years and have had quite a few side effects- I think most of the estrogen suppressing post breast cancer meds have similar side effects- I seriously contemplated quitting Tamoxifen due to insomnia , hot flashes and depression but ended up taking another med to help with the insomnia and hot flashes- often yr oncologist will suggest another medication to help with depression or insomnia- I went off Tamoxifen for a couple of weeks and felt considerably better. At the moment however without medical advice- I am taking a half dose daily in the AM- it has been much better symptom wise for me- so rather than stopping altogether I guess for me this is a compromise-not sure how old you are- but I am a senior- also you need to consider yr oncotype score- re- possible re- occurrence-to me quality of life was being badly affected. I live in Canada so not sure if you have a medical professional you can access readily - try talking to them about side effects and if there are any meds to help with them. Good luck in figuring out what is best for you!
If you are post menopausal, I would ask your doctor to switch you to an aromatase inhibitor, for example, letrozole. The side effects with letrozole were much easier to deal with for me than tamoxifen. Best of luck to you!
Thank you for replying, I started on letrozole but had terrible heart palpitations so they switched me to exemestane and I had terrible joint problems so now I'm on tamoxifen.
yes, I had the same situation as yourself. My diagnosis was in January 2018 and I took Arimidex for one and a half years. and then got a new second cancer, smaller but the same staging , in the opposite breast. Since that medicine didn't work for me the first time I decided that I was not going to take any meds. after second time which was early 2020, I was doing radiation just as covid hit. I decided to not take the meds. because I was to worried about thrombosis potential and also on staging and clear margins and no lymph nodes involved I am trusting there is no spread. I make sure to get screened every year.
I had a similar diagnosis as you for breast cancer. I did 15 sessions of radiation & then was put on Tamoxifen as well I didn't tolerate it well. Taken off it for 6 weeks blood tests. Then switched to Letrozole did that for 6 months. I have lots of side effects but now take Letrozole every other day & it seems to be tolerable but still some side effects. Just talk you your doctors to see what options might work for you. Wish you all the best.
Hi I had similar to you, they put me on letrozole and I had terrible heart palpitations, which they say is rare but from what I've read it's not that rare. Anyway I'm on exemestane which seems to be ok
I am an almost six year survivor of ER+, PR+ and HER2 neg, Invasive ductal carcinoma and negative node patient. I also had 3 weeks of radiation post operative and been on Letrozole for five and a half years. I have done well with it with little side effect, other than osteopenia/osteoporosis. My oncologist does not want me to stop my Letrozole yet. I was hoping I could stop after five years, but if a pill will keep cancer away I will take it. Best of luck and prayers sent your way.
Took letrozole for 1 year, developed pretty much every symptom. Just did carpal tunnel release surgery because of it. I just took her off of it. Taking letrozole only raises her chance of survival 1%. The problems and loss of quality of life are not worth the problems with this drug.
We take Lions mane and Turkey tail mushrooms. Turkey tail acts as an AI. It’s been around a week since she stopped and she’s starting to get some relief. Her mammogram and ultrasound at 9 months was clear.
I also had invasive carcinoma stage 1A with no cancer found in the 2 lymph nodes taken, HR positive, Her2 negative, grade 2; negative for genetic mutation; tumor size was 2cm w/1mm invasion; location was an inch above my nipple; my Oncotype score is 19 (out of 100). I’m 66 years old. Clear margins after a lumpectomy on 1/31/24. With all of these things taken into account, my doctors advised no chemo, and then to my surprise, no radiation ONLY IF I took the adjuvant hormone blocker pill for 5 years. I followed their advice and this is why: radiation only addressed LOCALIZED risk (the risk of another lumpectomy), and a new study showed that there is a 91% chance of it not returning without radiation, and adding the radiation would increase the odds by only another 8%. My radiation oncologist didn’t think there was enough added benefit to outweigh the possible side effects from radiation, especially because it is localized risk that would be caught early (since I’ll be monitored regularly from now on).
In contrast, the hormone blocker pill addresses the risk of cancer metastasizing to other parts of the body, a much higher risk because it’s not localized risk. There were 2 studies that showed that without taking the pill, there are 10-12% odds of recurrence, over 10 yrs., whereas with the hormone blocker, odds are almost cut in half, lowered to 6% recurrence. I’ve had blood clots in the past, so Tamoxifen was off the table for me (it carries a risk of clots); I was prescribed Letrozole, which I began taking on March 18th. I noticed some edema in my ankles and legs on the 19th that I had not noticed before; however, I had been standing all day, so it’s unclear whether the excess swelling was from surgery recovery/standing too much (I still have a hard hematoma healing in my upper breast from surgery) or if it’s from the pill. We’ve decided it was too early to tell, so I’m staying on it for now, as the swelling was only bad that one day, involving the legs- now it can be seen only in the ankles, and in my hands & fingers if you look closely. I had booked a second opinion appt for my treatment plan at another highly reputable cancer center, and that medical oncologist pointed out that one of the other two drug options (there are 3 total besides Tamoxifen) has half the risk of the edema side effect, so if the swelling doesn’t subside over the next three weeks, we’ll plan to switch to that drug. Hopefully the swelling is connected to continued healing from surgery, and not the pill, because so far I’m not having any other side effects that I can’t tolerate- just the occasional mild hot flash. I like the peace of mind that the hormone blocker pill gives me since it starves any new cancer cells or existing microscopic pre-cancerous ones, and prevents them from developing. I am somewhat concerned about long term side effects (such as osteoporosis) but plan to start a new workout routine to help counteract that risk. Hope this helps!
Also, I am wondering if anyone with HR+/HER2- stage 1 invasive ductal carcinoma with no lymph node involvement removed through lumpectomy followed by 3 weeks of radiotherapy has just chosen not to take the anti-estrogen meds and what led you to that decision.
HI. I did—I decided not to take the anti-estrogen meds with that exact diagnosis at age 40. I had had an oncotype test that came back “9” … which is very low chance of it returning ( with a hormone blocker)… I think I wanted kids and took the risk … I had two kids following my stage 1 diagnosis in 2012 and in 2017 was stage 4 bone mets with a 3 1/2 and a 2 year old … I have been on letrozole since 2017 with very minimal side effects (mild arthritic kind of discomfort sometimes — most of the time —no side effects at all).
I personally believe the hormone blocker would have blocked it (just as it is doing now) for a time but would have returned , just like it will eventually now. But God has answered my prayer for “time” to prepare my kids … it’s been 7 years so far stage 4.
Thank you. I'm sorry to hear about your bone mets. Happy for you that you have 2 lovely children!
I first went off tamoxifen and then on letrozole, but have since gone off the letrozole as well. For me, the risks were not worth the benefits, so I do hope that I stay cancer free. In life, there are no guarantees, but we do have choices, and for that I'm thankful. Best of luck to you as well.
I tried anastrozole for three months, over four years ago. I also didn’t want to live with the joint pain. I have yearly mammograms and breast mris, so I have the survelance going on. I’m five years out from my cancer. I did not have any lymph nodes involved and didn’t have chemo, just radiation. I am hopeful for my future! God bless you all on your decision making! We are all different, different bodies, different cancer, different treatments, but it seems most doctors insist on a “preventive” medicine after all we’ve been through. I wonder how many oncologist s have had cancer and live with the side effects. Good luck!
Ironically I think I was the first to message on this post 7 months ago. Anastrazole suited me to start with, then gave me osteoporosis, so they put me on Tamoxifen, which were worse. The brain fog, totally hot flushes, weight gain, so I too have stopped taking everything and also feel more normal. I would rather have a few years having a normal life, than a prolonged life of misery. Although initially I told the doctor and he said he understood my point of view, it would of upped the travel insurance mega bucks, so according to them, I'm still taking them. Not sure they can prove otherwise as I'm still getting the prescription through!!
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