tamoxifen break- anyone done this??

Life after a breast cancer diagnosis Recovering from treatment
1

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

2

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: breastcancercare.org.uk/information-support/support-you/someone-talk/call-our-helpline

I hope this helps.

All the best,

Claudia

Breast Cancer Care

3

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

4

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

5

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.

6

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.

7

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!

8

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