tamoxifen break- anyone done this??

[Winda]

I have had Er+ DCIS for 8 years. until 1.3 years ago I did nothing about it.

I made the choice to go on Anastrozole, this is for post meno women

they give us this instead of tamoxifen.

I just quit it as the side effects are CRAZY!

I just saw Dr. Rose Kumar at her Ommani Center for Integrative Medicine. 

We replaced it with EstroDIM or DIM a natural way to reduce estrogen.

Also, read this book if you can, immediately:) you are young and you need to see what this guy has to say about cancer ( he had brain cancer) :

"ANTI-CANCER A NEW WAY OF LIFE"

Dr. David Servan-Schreiber

Let me know if you have any questions,

Winda

[tappin]

R4ch3l,

I find your post interesting because I am hoping to try Tamoxifen!

I was diagnosed in Sept '21 at 75 with a 2 foci 2mm and 12mm DCIS no lymph nodes involved. No RX as I 'missed the window of opportunity' as I asked for a second opinion from the Marsden, who sat on the fence! I had taken HRT for over 30 years, happily and had to stop cold turkey in December 21 after surgery. I was put on Letrozole for 5 years, being 75. HOWEVER, NOW, I have vaginal atrophy, only found out when the ring pessary for prolapse became dislodged twice in two weeks, dry itchy skin, incontinence, etc, and having spoken to a specialist meno GP who thinks that as I was on HRT, although my age said I was post meno, I wasn't hormonally! I am going to ask if I can try the Tamoxifen as it is a selective oestrogen blocker rather than the Letrozole which gets rid of it all. I had generics to start with then asked for the proper thing -Femera- which has not given me the stiff joints the others did, but obviously accelerated the other side effects!

I have read that some drs allow people to have a week off then back on, or every other day etc, don't suffer! Ask for help! Maybe even a pessary to help with the stress incontinence-my one for the prolapse was great!

[Midge1]

Hi there, 

I was diagnosed with breast cancer for a 2nd time back in March 2022. My first diagnosis was 22 years ago at the age of 29. Had lumpectomy, chemo, radiotherapy and 3 years of tamoxifen. This time around lumpectomy, radiotherapy and x5 years of tamoxifen.  Have enjoyed the usual side effects, hot sweats, ache, weight gain.  As rubbish as it is, the alternative for me is worse. Unbeknown to me 5 weeks ago I was administered a prescription that I thought was tamoxifen, but the pharmacy messed up and have been taking a drug for shrinking the prostrate!!! Obviously I was beside myself with panic, but my oncologist confirmed there would be no detrimental effect for the break, as sometimes breaks are given when people are struggling with side effects. Needless to say it was a relief that I’d not left the door open for the cancer to return. The most important thing is the length of time taken overall.  Hope that helps. 

[Lkeith1957]

Looking at turning to 2023, how are you doing? What treatments have you been on? I like you was on anastrozole for two years. Had to stop that. Oncologist said OK. Wait six months which really helped all side effects and energy recovery. Now recommending tamoxifen. On the fence, please advise.

[tamuser56]

I feel your pain. I’ve been on tamoxifen 20 mg for over 3 yrs now. I just turned 56. I didn’t know if I was imagining it or if I truly am having the life sucked out of me. I was told by my specialist that my menopausal symptoms would escalate, which they have. My summers have been miserable with the heat and my inability to control my body temperature, no matter what I do. My stomach, back and under my breasts just drip with sweat, making it difficult to wear nice things. I’ve also been feeling a lot of aches and pains, I think mainly in my joints. I thought it was related to training too hard in the gym and it was sore muscles but even taking a break for a few days, my body almost feels like it’s suffering from arthritis. I’m not hugely overweight but I have gained a few pounds and can’t seem to shed it. All in my belly. Was relating it to simply the older we get, the more our metabolism slows down. But it’s the aches and pains that worry me. My doctor said if I don’t take the tamoxifen, the cancer could come back. This DID happen to my step-mom who also had oestrogen receptive cancer cells, opted for radiation but passing on the tamoxifen. Ten years later, it came back and she had to have a double mastectomy. So I’m scared this will happen to me if I do not take it. 

[esaw12]

I feel exactly the same. I’m a teacher but can’t recall half the knowledge in my head! Put on 2 and a half stone. 4 years on tamoxifen next month and feeling increasingly miserable lately. I’m only 44 but feel 54. Feel like I’ve lost 10 years. Terrible ankle pain and side pain from the radio. Want to wear a T-shirt that says “this isn’t me! I’m trapped in this body!” Self hate is the worst part of this journey.

[BB343]

I know it's been a while since anyone has posted but I would like to say that I can relate to the last person who wrote in this forum. I've been taking tamoxifen for 5 weeks and it's been horrible. If you talk about the changes it does to your body, the constant bloating, the big, noisy stomach, the constipation, the new rolls on the side of your stomach etc... than you are just a vain person to not like your new round appearance. I put on 10 lbs in a month. I have a doctor that told me that no one likes this medication and it was really up to me what I want to do. I'm 43 years old and I have lobular carcinoma in situ in my right breast and had a lumpectomy when I was 41. No other treatment and was advised at that time  to start tamoxifen right away but heard so many bad things about it. Then this year had some "molecular changes" as they put it in my left breast (no cancer) but enough to get me worried. I started on 20 mg of tamoxifen and I slept all day. I had no life or energy to do anything. So I've gradually adjusted the dosage and even on 5 mg I still have all the same side effects but can get out of bed. It's come down to this way of thinking for me...do I really want to ruin the only young years I have left? I would like to enjoy being my age and be able to run and dance and do all the things I love to do. I was trying this medication for my family so I can be around longer for them. This is a terrible thing to have to face and in many ways your life is ruined by the medication or the fact that you might die of cancer they tell me when I'm in my 50s because that's when my risk goes up to 67 percent. For people my age there are no other med alternatives. I just wanted to express what I am going through and I know so many women have been there or gone through a whole lot worse. Thanks for giving a space to voice my frustrations.

[Poppy3]

Hi Chime, Yes I'm on tamoxifen. I did swap to anastrozole due to going through menopause but the side effects were so difficult to cope with I changed back to tamoxifen. I did try a few brands to start with and finally found Teva which had least side effects. I was lucky to get this brand for four years. But! It has now been discontinued so back to square one! I am currently trying Relonchem which seems ok apart from being hungry all the time. Having to curb my snacking! If you find a brand that suits you try ordering from an independent pharmacy, they can usually source it from somewhere. Bigger companies tend to bulk buy so you have to have what they have in stock. It is a challenge all the time especially when we are only prescribed two months at a time.

Let me know how you get on..xx

[Seabreeze]

Hi,

I just wanted to say hi to everyone in early days of Tamoxifen, in my view it's worth sticking with it since the research really does show it reduces the risk of recurrence! 

I recently reached the 5 year Tamo landmark, to be told by my oncologist that it is now recommended to take it for another 5 years, 10 years in total. Research reports in the Lancet indicate that taking Tamoxifen not only reduces you risk of a recurrence while you take it, but for a period of time beyond that (re taking it for 10 years, research indicates it provides protection for 15 years, possibly more - although they need to monitor the women in the study for longer to determine that). 

As most people are aware the risk of recurrence generally reduces over time. So taking it after active treatment is when you will get most benefit. Hopefully by the time you reach 3 years you will have got used it and feel more inclined to carry on! I do understand how those of you starting on it may feel, I was extremely hesitant about starting to take it and am so glad I stuck with it. 

When I say I was so glad I stuck with it...if my experience helps any of you make your decision, an unexpected bolt came at me....after having severe pain in my ribs, and various bone scans, I was told I had large patches on my ribs which were highly suspicious of bone mets, 3 years after surgery (initial diagnosis stage 2 invasive, oestrogen positive, no node involvement) and that they needed to check my organs (I was told it was pretty unusual given my initial diagnosis and no signs to 3 years). As you can imagine it was a pretty stressful period. Thankfully it turned out to be old fractures but I can only imagine how I would have felt if it had turned out to be secondaries and if I hadn't have stuck with Tamoxifen. 

Re hot flushes and any anxiety - worth phoning the Breast Cancer Care line since there are various things that can assist (my oncologist suggested trying sage which worked brilliantly well for about 18 months before my body seemed to get used to it). I only wear layers which undo up the front so I can peel them off rapidly! And use a lightweight cotton duvet!    

Re different brands - I appreciate some women say they notice a difference however I've taken loads of different brands (whatever the pharmacist has given me) and haven't noticed any difference. I asked a friend who's a pharmacist who said it was pretty rare that different brands of medication make a difference re side effects (talking medication generally, not specifically about Tamoxifen) since it is only any coating to the medication/drug that may have any variations, not the drug itself. I'm not an expert myself, but that was her view.

Re having a break from Tamoxifen, only do it after discussion with your oncologist so that you fully understand how long a break you may (or may not) be able to have, without potentially increasing your risk. My oncologist said all the studies carried out on the benefits of taking Tamoxifen have been on women who have taken it continuously, so when I asked her about having a brief gap at 5 years, to see how I felt without Tamo, she said she wouldn't advise it, and if I did have a break, not to do so for more than a few weeks, not months!

I think It does kind of get better over time, although I'm not sure if that's just due to getting used to the side effects! And reaching 5 years with no recurrence - yey! Worth the side affects if you ask me!      

I hope the above helps you decide what is right for you, 

Seabreeze XX

[Chime]

Hi Poppy, thanks for the helpful info - so are you on Tamoxifen then? And if so, did you find that the Tamoxifen related symptoms you experienced calmed down after the first 3 years or was it more a case of changing brands until you found a brand that suited you? Xx

[Poppy3]

Hi Wonky, thought I would let you know what I know about bihosponates. These are usually prescribed for ladies that are on or switched to anastrozole or letrozole. These meds weaken bones, therefore used to strengthen bones. Tamoxifen is much kinder to bone density and therefore not usually needed.

It is such a difficult decision knowing what to do for the best. I've just had my five year check up and was quietly relived when my consultant said to continue for another 5 years. Not sure what that was all about as I had spent the first 3 years wanting to come off it! Also if your side effects are difficult to cope with, try another brand until you find one that suits you. An Independent pharmacy is usually really helpful with this and happy to source the one you want. It's not a case of one brand suiting all.

Hope that helps. Love to all you lovely ladies..xxxx

[Wonky]

Thanks for that. Age related? I'm 54.

[Susanmanchester]

Onc prescribed for bone strengthening ... 

[Wonky]

Bihosponates and Vit D.....what are these? Onc -prescribed or something I should be looking at independently.? 

[Susanmanchester]

Hi letrozole is for 10 years under my hospital protocol ..... ladies please take meds as advised if you can it worries me when i read posts suggesting they are optional they really are there for a reason . Likewise biphosponates and vit D which am on for 3 years . 

[Wonky]

Hi, after reading this I question continuing with Tamoxifen also.  I have been on it for 3 months. My legs are like 'lead weights' especially in the mornings. 

For me, taking Tam is also a daily reminder of cancer, so hard psychologically to ever see an end to 'cancer life'. 

I had a Grade 3 oestyrogen positive tumour. Lumpectomy and rads.

It is all so scarey.

[Chime]

Hi there,

I have been on Tamoxifen (Wockhardt 20mg) since Feb 19 and have experienced very similar symptoms to below despite trying to be as fit and healthy as possible: aching and swollen joints, dizziness, weight gain, mood swings, feeling like I’m made of lead, hot flushes just started recently, a persistent ache in my lung / back behind my lung which makes it difficult to breathe when I gasp, sneeze etc, but the big issue for me was the bloating and I have had unexpected significant periods with very high blood loss that can go on for days.

I reduced the Tamoxifen of my own accord down to 1 tablet every 2nd day and immediately started to feel so much more like my old self, and continued like that for a couple of months but my Specialist wasn’t happy so went back to daily and everything started coming back again.

It turned out I have a swollen uterus - as you say lr953 it affects the lining of the uterus. My specialist - after biopsy on the uterus confirmed no other reason - has put it down to Tamoxifen. I wonder if this is the bloating feeling some people say they get. This is also the reason for the extra bleeding.

I phoned my GP and explained my concern so he prescribed me 10mg tablets to take daily, however my Specialist found out and wasn’t happy because he wanted me on 20mg, so now I’m taking 10mg tablets twice a day, one after breakfast and one about 2pm, and weirdly so far that seems to be a bit easier on my system.  Every now and then I just take 1 a day to give me a bit of a break.  

I don’t know how old you are but in a long winded way to answer your question, the option that I have been offered due to the effect on my uterus is to bring on my menopause (I’m 51) through Zoladex injections and then put me onto Letrozole which is the post menopausal alternative. That will get me off Tamoxifen but now reading from other posts about Letrozole I might be going from the frying pan into the fire! The good part about that is Tamoxifen is 10 yrs but Letrozole only 5. 

i’d be really interested to hear if others have tried this option.

Sending you best wishes 

[lr1953]

I really need some input - been trying to get in touch with my oncologist for a week

had six months chemo, lumpectomy and radiation

three years ago

went on arimidex gor two years and had to stop due to bone liss. Put me on tamoxifen and it increased the lining of my uterus too much and oncologist nurse told me to get off the tamoxifen and they would call in to my pharmacy with a different alternative.  It has been a week and i call every day and still no replacement drug. I feel unprotected and am asking how long can one be off the hormone of some sort before its dangerous in terms of a reoccurrence?  I am calling her office again tomorrow - please advise

thank u

[EmilyA_BCN]

Hi R4ch3l

It's Emily here from Breast Cancer Care. 

Thanks for your post. I wanted to let you know that we do have quite a few volunteers who have changed brands or types of hormone treatments, or had a break. If you'd like to chat to someone over the phone who's had a similar decision to make as yours, feel free to drop me a direct message through the forum and I can put you in touch with someone who understands what you're going through.

Best wishes

Emily at Breast Cancer Care

[angie56]

Hi rosietd

I have been on Anastrozole for 5months at first not too bad,but the side affects are really bad now?

Same as yourself hands,ankles, wrists  really bad pain..Fingers lock and i have to pull them straight,,My whole body aches,

I mentioned it to one Oncologist stating i get terrible shivers,,He replied normally hot sweats,,I am sleeping so much,then also no energy and feeling bloated,

I am due a CT scan next week and my BCN advised to discuss with the Oncologist about Anastrozole at out patients,I just feel that i want to stop the tablet.....

ANGIE56

[rosietd]

I am in a very similar place, albeit with Anastrozole, not Tamoxifen. Have only been on it 7 months but within 2 months of starting on it, I started getting pain in my hands, which has now developed to the point that I had to have a steroid injection into my wrist last week to alleviate the pain. Fingers are stiff and swollen, hands are weak and painful ..... horrible. So I saw a hand specialist last week to check there was nothing else happening in my hands and he could not find anything - so the assumption is it is all linked to the Anastrozole. 

I decided enough was enough, had a very good chat with a BCN on Friday and outcome is that I am off the drugs for a couple of weeks to have a break. I already feel better and am realising a few other symptoms I have been experiencing - extreme fatigue, struggling to concentrate at work, etc. - were probably linked to it as well. Not remotely keen to go back onto the meds so will be having a conversation with my Onc to understand the actual benefit (in terms of impact on recurrence risk) of staying on the meds. For me, the impact on quality of life is currently not worth it.

It is not a decision I will make in isolation - I need medical advice - and I guess it is a judgement call that will be different for everyone.

xxxxx

[ClaudiaK_BCC]

Hi R4ch3l,

Many thanks for your message, I'm so sorry that you have been feeling this way.

If you'd like to discuss your concerns with our breast care nurses,you can speak to them through our free Helpline: https://www.breastcancercare.org.uk/information-support/support-you/someone-talk/call-our-helpline

I hope this helps.

All the best,

Claudia

Breast Cancer Care

[R4ch3l]

hi am really struggling and not even sure if any can help but need to share....really sorry for the long post.....

i  was diagnosed dec 2016 after what was meant to be a removal of a blockage in my milk ducts, turns out it was a tiny cancer causing the blockage.  had another lumpectomy to remove bigger margins, all clear, nodes all clear, then started tamoxifen feb 2017. i then went on to have radiotherapy,just as a precaution... in march and foolishly went straight back into work as a teacher.  literally a few weeks after finishing rads.

i struggled with tamoxifen, and adjusting to fatigue and generally just life in general. i was also then diagnosed with skin cancer nov 2017, which involved wle, 3 times in the same place and all clear now.

jan this year i basically lost the plot, it all hit me and i had to be signed off work for two weeks whilst i let it all out.  life was just too hard, the tamoxifen was giving me such a fuzzy head, achy bones, everything was such a hard slog, just even getting out of bed everymorning was a struggle, not to mention the fact that i just couldnt lose weight, even though i had started exercsing daily which was a new thing for me, hate exercise!!  then of course the hot sweats, the inability to form a sentence, to organise myself, the mood swings (although i had those before cancer!!)  just everything was hard and i blamed it on the tamoxifen.  in the early days i felt nauseous so switched brand and that helped but then the new brand had its own issues.  i even tried to explain to my bcn and basically was told not much else i can do really, they advsed exercise and accupuncture which ive done, although accupuncture really helps with the hot flushes. 

5 weeks ago i decided i needed a break.  the tamoxifen needs to go.  i started on it when life was full of cancer stuff, then the rads, i had no time to adjust. 

i decided i needed t start again with a clean slate.  i rang my bcn who agreed to a two week break after checking with my oncologist.  i am 37, with two kids, very low risk, no family history, v v small cancer found....

after tw weeks i started to feel more human again, in fact i shed 10 pounds in two weeks.....

my bcn called me back and i told her i was starting to feel ok, the fuzzy head had slowly eased.  i asked for another two weeks off....she said one week but didnt think the oncologist would afree to another two weeks...said she would call me back and im still waiting for that call.....its now going to be 5 weeks tomorrow that ive not taken it. 

i basically dont know what to do......

i know i am probably foolish to ignore medical advice......

but i also know that this drug is just making my life hard to cope with

and i keep thinking that i was so low risk to begin with......

i could try another brand...that was alwyas my original plan....get it all out my systen and begin with a new brand...so far ive tried relonchem and then teva. 

i dont really know if anyone can help me....i just hate the idea of being on this horrible drug for another 3 and half years at least....could be ten years in total!!

i sometimes think of weighing up quality of life over chances of it returning. and it could still return even though am on tamoxifen.  or i could get womb cancer!!

i know that no one can make this decision for me....just wondered if anyone else had ever thought about this before and if they had made the decision to stop....and what made you decide and do you regret it??

i do sometimes lie awake wondering if ive done damage by stopping for 5 weeks....if the cancer returned id never forgive mhself.....but i just really hate that fuzzy woolly head feeling of just being spaced out all the time and not in control of my life........

sorry for long post,,,,,,

xxx