hi im new here and am not sure i put my response to you in the right place, i hope you can see it, it looks like it’s at the top of the thread
Ah, Mirror Mirror, I really feel for you and relate (except the hair loss). I say this very cautiously and in response to you, my surgeon (also who headed a large clinic) pulled me aside before my 5 yr review and said you’ll be told to go ten years and I know you have really struggled. He said at yr 5 (of 10) the benefit is about 100% and at the 4 mark about 90%. The San Antonio (2017) starts the next few days so it may update the Atlas trial (eg, 5v10 yrs tamoxifen results at yr 15. At 10 it did show a benefit at 10 but it wasn’t huge. And then there’s what’s called a subgroup analysis: eg some get more benefit that others. The best you can do is get as much info from your oncologist about their assessment of your risks. My surgeon had weighed that up and for me it wasn’t worth it. My onc (whose also a lead international researcher) wants me to stay on it. The reality as you say is tamoxifen gives a good benefit, for me it was about 40% reduction of my 15% risk at 10 yrs. Another 2% gain is not worth it for me and as you say, it’s no guarantee. I’m glad I made it but it’s been a huge struggle. The last 6 months was a real struggle and I had the last tablet last night and cried. I’m already noticing a difference (as weaned down to 25%) particularly energy but it’s possible I’m premenopausal, but my working memory and emotional control is totally rooted. I did start a new relationship a yr in, but it’s been very hard. I will continue to post over the next wks/months. My biggest advice for managing is to get heaps of exercise and challenge yourself to feel good and as strong as you can and there’s lots of solid evidence on its impact of reducing a recurrance. Try not give up on finding someone if that’s what you want. Xo
Oops, I meant 95% not 100% at 5 yrs of the way towards the total benefit if you went to ten yrs on it.
Finished 9 yr therapy on tamoxifen.My body has had enough… Initially have 1 more yr. to go…but I do not want anymore…am sick daily…achy, fatigue ,nauseated ,weak…
All of it is not good…so since Wednesday , I Am now off the drug…I have 0 appetite…TIRED, very nauseated, tremors, heart palpitations, nervousness,emotional, vag. dryness…achy, dizzy,eyes are blurry…must I go on?And this is only day 5 of being off 20 mg.tamoxifen…am praying hard and keeping the faith and staying positive…life can only get better…lost a good man to this drug…
No sex -no man. Frustrated and lonely.Bittersweet is what I call it…I pray for all whom are going through this… 
Will keep you all updated…
I thank God everyday for all my blessings and pray for all who are in this battle…xo sending much love,light,and healing to all.
BTW…my doc says…"there are No side effects as you go off this drug…blasphemy!!! I know there is…I am feeling them .! How can there Not Be!? Makes me unsettled, for lack of better words.9 years on ANY drug,then stopping,Will have side effects!..aghhhhhh
Hi, firstly congratulations on doing 9 yrs with crappy side effects: that’s a real feat! I did 5 and my once wants me to do another 5 but I said ‘nooooo’ as it sounds like we had the same side effects. I weaned off. I got a period within a month. I had even worse mood: depressive after stopping but I’m feeling better now (at 2.5 months). The thing I noticed within 2 wks was my fingernails. I got an opaque band of new growth rather than weak nails. I’ve got my periods back and my old pain cycle / mood swings returning. My short term memory has not yet improved, but I can deal with more information. Gynae symptoms improving but I think will take a while: I lost all internal texture but that’s coming back and I feel so happy about that as it feels like there’s hope. Those symptoms of tamoxifen were a real rip off. I’ve also started getting physical strength back. I did weights but was losing muscle now it’s building back up. Hope all else improves but give it some time. Well done again and I’m sorry it had such an impact. Hope you find yourself a lovely partner, mine stayed with me despite all of the side effects. Xo
Hi. I am on week 2 of Tamoxifen and my hot flashes are worse, I can’t sleep well and when I do, the hot flshes wake me up. My moods are depressed and sometimes bad…
I had stage 2b breast cancer. It started entering one lymph node, so I had a single masectomy, lymph nodes removed, 8 rounds of chemo, and 28 rounds of radiation. Two weeks after radiation, I started the Tamoxifen. I feel like my body hasn’t been given a break. I strugge to be at work, but I am tired and achy.
I see from the other posts I am not alone. How do I get energy when I can’t sleep?
Well at least I am alive 
IrishOne
When I first started on tamoxifen I had horrendous mood swings and depression, after three weeks I went to the doctor and was prescribed mirtazepine. It’s an antidepressant you take at night because it causes drowsiness. Now my mood is fine and I sleep really well, I mostly wake up feeling really well rested and ready for the day.
I’ve tried to come off the mirtazapine a couple of times and each time have gone back to where I was, no sleep and depression, and very volatile moods. So I think for me tamoxifen has to come with an antidepressant, because it’s the only way I can function on it. I didnt want to take an antidepressant but it seems better to take it than to stop the tamoxifen.
Hi I can totally relate to what your saying. I decided to come off Tamoxifen after 7 years. I felt like an old woman. I’m 52 by the way. I couldn’t even get out of the bath. I discussed coming of Tamoxifen with my Consultant and he said yes. I wasn’t told to wean myself off and just stopped. My hair seems to be struggling. I’ve put half a stone on in weight. Like you I feel my thyroid isn’t working. Mood swings horrendous. I’m feeling down which isn’t like me. The only plus side is I can get out of the bath without struggling. I really did feel I would lose weight after stopping. I’m now living in fear of reaccurance. I’ve been off it for months now. I sympathise with you all.
I have just come off Tamoxifen after 10 years and I am also suffering persistent headaches. Just phoned my breast care nurse who said this is not a side effect. Anyone else having these symptoms.
If you take a look at my post from Nov 24 you’ll see I had headaches too. I’m really not a headache person so I think this must have been due to coming off tamoxifen. I can’t remember how long it lasted but I’ve not had a headache for ages now, certainly nothing since Christmas
Thanks road runner, I was starting to worry. Like yourself I don’t normally get headaches.
Hello!
I am 45 and I stopped taking tamoxifen last week, after 5 years. I have had mastectomy, chemotherapy and radiotherapy.
I was wondering when the hot flushed will go away and if there are some side effects after stopping the tamoxifen.
Thanks you alll you brave ladies! X
Victoria16
I came off tamoxifen in the middle of january. I’m still having hot flushes, and I feel quite lethargic, and as you can see from my post yesterday I also have headaches, which I never normally have. I am 51 so a few years older than you. I phoned my breast care nurse yesterday and she told me there were no side effects from coming off tamoxifen, but as you can see from the posts on here, that is not the case. I hope you find its not too bad though x
I have been off tamoxifen for a month now and I my hips feel like I’m 80. They hurt all the time! Im 41 and was on the drug for 5 years. I didnt ask to go off, I just ran out and it was to big of a hassel to get them refilled. My breast are extremely tender and my period was a long heavy painful nightmare but I expected some of that due to the estrogen coming back. Anyone have bone or joint pain?
I’m 52 yrs and 7 yrs ago I had a double mastectomy and rebuild after having chemo
I have been on Tamoxifen for 6.5yrs and I have decided to come off it
Since coming off it I have experienced high blood pressure 168/89 which is almost hypertension my headaches have come and gone everyday can anyone tell me if anyone else has experienced this
I’m unsure if I’ve gone thro the change as my periods stopped after my first chemo
Having said that after coming off tamoxifen I do have more energy although my joints and legs still ache and my hot flushes are back with avengance but more than anything I’m ALIVE and a FIGHTER like all of you
Good luck to you all and stay strong and positive
Hi busterkins
I stopped tamoxifen after 10 years and I also thought I had gone through the change but I am having horrendous hot flushes. I also get headaches and I have slightly high blood pressure. I have also been told by my breast care nurse that there are no side effects when you stop taking tamoxifen, but as you can see from the posts on here that is not the case. I hope you feel better soon and are reassured its not just you. X
I’m sooooooooo extremely happy to have found this portal, you guys have NO IDEA. I usually don’t participate in any of these forums but this time is a MUST for me to share my experience.
After unsuccessfully googling what happens when you stop taking Tamoxifen, I finally found you.
My name is Maria de los Angeles, I’m 32 and I live in Miami. I was diagnosed with breast cancer at the age of 27, did chemo weekly for 3 months, double mastectomy and Herceptin every 3 weeks for 1 year along with Tamoxifen daily and a shot of Zoladex monthly.
After being on continuous treatment for almost 5 years I’ve decided to give myself a rest. Also, I don’t have children and I wanted to see if that door was still open. So after almost 2 months of quitting I got my period with a looot of pain, maybe that’s only because I spent 5 years without it (I started Zoladex before starting chemo).
Now it’s been 6 months since I stopped and this is what I feel:
Pros:
1, No more hot flashes.
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No more night sweats.
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Less insomnia (it’s not completely gone but I sleep much better).
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I have my period which I guess is a pro.
Cons:
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WEIGHT GAIN (I’ve gained almost 10kg in 6 months!!!??) and it keeps going UP, someone knows something about this?? I’m freaking out.
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PAIN everywhere, especially my joints. Although I sleep better, when I wake up everything hurts badly.
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Tingling sensation on one side of my body, more like nerve pain.
Please comment on anything.
Very nice to meet you ladies.
I’ve been sitting reading on Tamoxifen regarding staying on for 10 yrs. My 5 yrs is coming up and my oncologist last yr mention to me about doing another 5 yrs. My response was no at the time. I’m so up in the air with my decision. I really have not had any serious side affects as mention here. Hot Flashes yes but are bareable now, i had joint pains for a minute but really nothing much now, maybe because i stay active now. I do feel these Drs don’t really know what the side effects are and they are going by what they read in studies. Like in the beginning women talked about brain fog, now it’s coming out that it is an issue. I’m just so confuse on what to do. I’m 52, and i feel fine. Some of the issues i see in some of you ladies i feel lucky that my yrs on tamoxifin has been pretty good considering. I’m also concern about if i stay on tamoxifin the other cancers that can occur like endomentriosis/ovarian which now will double your chances. It’s just so much to think of. If they knew about doin 10 yrs prior to my dx which they did why wait until now when we are almost finish to say oh do more time. I feel it’s a money thing. Just disgusted with the whole cancer ordeal, and by me working in a cancer institue and seeing things just makes me more upset. Yrs later they will come out with oh Tamoxifin and others aren’t good for you. There’s no win win situation in this disease. Live and try to enjoy life and be happy.
The more i read on here the more i feel the way i felt when i started tamoxifin, scared regarding stopping it after 5 yrs!! lol