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Stopping Tamoxifen after only 2 years

36 REPLIES 36
Sissy60
Member

Re: Stopping Tamoxifen after only 2 years

Hey Shazi

was so interested to read you came off tamoxifen. I’m 62 and been on it two years and had a pelvic scan which showed changes due to tamox. I have to rule out womb cancer (unlikely) and then decide what to do… letrozole for post meno women affect bones and cholesterol and dries you out totally. Tamox affected my eyes too. I realize I feel so well off it! It dragged me down and I didn’t realize how bad - I have so much energy now. 
I had a 2.5 cm lump with no lymph or anything. I didn’t have chemo just radiotherapy. Was told it was stage 1c.

I feel post meno we are more able to stop the hormone treatment and be ok as long as we keep fit and well. But I’m scared too as known friends die of the disease, but all got it at under 50. 

I can’t face letrozole but tamox is affecting womb so have to stop. Or I have hysterectomy and continue tamox. It’s awful choice!!!

wonder if anyone else had this dilemma of treatment? Or just said goodbye to the hormone treatments??!! Help!

thanks :))

tax
Member

Re: Stopping Tamoxifen after only 2 years

Hi Ash

I see you have written 5 yrs ago, how have you been?

Im deciding to refuse the Amoxifen treatment, 2nd stage hormon positive. Im sure i couldnt bear the side effects. Please give feedback hows the health without this treatment.
Wish you are all fine!  

ejcoving
Member

Re: Stopping Tamoxifen after only 2 years

I know you posted this a long time ago but really appreciate your thoughts in your post and are exactly what I needed to hear. I’ve been on tamoxifen for 3.5 year miraculously, and have been struggling. Thank you for sharing your wisdom!

LadyJulie
Member

Re: Stopping Tamoxifen after only 2 years

Well I cannot say what is best for you Jen O but it is amazing that you have replied to my post from 2015 just as I have been diagnosed with cancer once again, within the last week. This time in the colon.

 

My french surgeon (had to have emergency surgery to remove a 12cm tumour and 54cm of colon whilst on holiday in France) does not believe it was connected to my breast cancer of 5 years ago which was stage 1 and I had lumpectomy, radiotherapy and clear lymphs as this is a primary cancer, but who knows?

 

Best wishes to you, whatever you decide x

 

 

 

Jen O
Member

Re: Stopping Tamoxifen after only 2 years

Hi All, I had a lumpectomy and radiotherapy for grade 3 oestrogen positive cancer. I started A and stops after a few days as I went into clinical depression which I came out of after a few days off the pill. Has now started Tamoxifen a couple of weeks ago but I'm feeling extreme fatigue and bad mood swings. Really considering coming off it I don't know whether to try and stick it out for six months or a couple of years. Any comments welcome x
Bethange
Member

Re: Stopping Tamoxifen after only 2 years

You have a good shot since you stayed on it 2 years.  I had same experience, but only tolerated a month.  Resorted to accepting whatever happens, let go and let God.  Then the mean oncologist flipped out on me.  (I would never go back to him)  I started up again but can only tolerate 10 mg.  I feel the same as you.  Take my chances.  Enjoy my life would rather live a few years happy then many unhappy.  So not sure how long I will stay on it this time.

Jacsin
Member

Re: Stopping Tamoxifen after only 2 years

Hi to all, well to start with I will give a short version of my experience. No details, had a bilateral mastectomy. After radiation, I have tried all the RX's given, all with not liveable side effects. Lastly trying Tamoxifin, not happy, so the only thing to do is not take anything and take my chances. I'd rather enjoy my life however short than have daily bouts of side effects that impede my life.

Pamvavoom1
Member

Re: Stopping Tamoxifen after only 2 years

Hi, 

 

I had a lumpectomy. With a 9mm and a 0.14 in my lymph node. Dcis her2 positive. Ughh. I am only taking Tamoxifen. I have Elhers Danlos Syndrome. Makes my skin and veins tender and break easy. It's a connective tissue disorder. 

 

No radiation, no Chemo. 

 

I am considering a full mastectomy because I can not stand the Tamoxifen. My hair is thinning.. I have weird sharp sever pains in strange spots on my body ever so often and it's uncontrollable. Last for about an hour. 

 

I will say this.. Tamoxifen builds UP your Bones.. All the Others TAKE AWAY from your bones.. I have Osteprosis. I went to specialist. And  3 Drs. Told me I could ONLY take Tamoxifen. So I am trying to stick it out. 

 

I am now thinking. I should get a full mastectomy. To lower my return of BC. Rofoxifen also builds up your Bones and has anti cancer properties to it..  I rather go on that, then to get a fatty liver problem from Tomoxifen. Hair thinning, night sweets, pain etc. 

shelltoshore
Member

Re: Reaction to Tomoxifin

Hi everyone

I started taking the drug in Feb 2017 - after having a mastectomy but clear lymps - so the operation wasn't so bad and recovery pretty quick as no chemo or radiotherapy. I was having my periods before I had the op but then the day I started T they stopped. I had hot sweats but nothing too dramatic so I thought - great - that's going to be it. However about a month ago - so 10 months after taking the drug - I started to lose my hair. It is now half as thick as it was and it worries me sick that I'll lose more. In fact it's starting to upset me more than anything since the op. I'm on lots of vitamin pills and iron too - but it's still coming out. Have booked in meeting with oncologist - I'm going to see if I can find out what % risk I am at if I stop taking it. After reading all the threads over the whole site about T I also realise I am having dry eyes, some lady talked about cataracts !! blimey!! what is in this drug!! Osteoporosis - and the rest. I suppose I will need to get bone density checked out so I can keep an eye on that - so much to think about and underlying all that - a thought that perhaps I shoudl take my chances.  Who knows how much of a deterrant T is for reocurring cancer for me. Is it just breast cancer that would return or somewhere else in my body. In some ways I'd pay for another mastectomy and come off the T if that would mean I could.

lol xxx

gailraj
Member

Re: Stopping Tamoxifen after only 2 years

I've been on Tamoxifen for four years. The night sweats aren't so bad but I sweat a lot during the day!!! I have to change clothes 2-3 times a day. That's been my worst symptom. In regard to the eyes, I got cataracts a little after two years of treatment and had to have the surgery. If your doctor hasn't told you to absolutely get your vision checked on a yearly basis, they should have. My eyes are fogging up again and may require the surgery for second time because, yes, it can occur again
Lolita
Member

Re: Stopping Tamoxifen after only 2 years

Hello and sorry to hear about your dilemna.  I was diagnosed and in 2014 and was Stage 2 with HER2nU positive.  I was originally on Exemtrane and was unable to walk after about 6 months.  My onc switched me to Tamoxfen and I must say I to am in the mist of deciding to stop taking it for good.  About 3 months ago I was unable to walk from the first drug and was instruced to come off the Exematrane.

 

After several months of Tamoxfen I now have osteoprosis, which I did have last year, it appears I'm developing problems with my eyes (maybe cateracts) as a result and the joint pain is unbearable.  I temporarily stop taking it and now making a decision on whether to stay off for good.

 

If I can't walk or can't see because of this drug, what's the point.  After finding this site of other women's testimony I feel closer to making the decision to stay off and taking my chances.  I am going to be more aggressive about what I eat now.

 

 

shazi 13
Member

Re: Stopping Tamoxifen after only 2 years

Well it is now just over one year since I stopped Tamoxifen, and I feel really great. Have managed to shed two and a half stone in wieght and can do regular exercise and jogging.  I would never ever tell any lady not to take Tamoxifen , but for me my quality life relly suffered, and my BC IDC stage 1 has very little chance of returning, and if it does I will address it accordingly. 

Lolita
Member

Re: Stopping Tamoxifen after only 2 years

Hello, I want you to know that I agree with your decision to come off of the Tamoxfen.  Unfortunately, I'm at a rock and hard place and trying to make the right decision for myself.  I was diagnosed in 2013 and reacted poorly when I got the news.  I feel that I made the wrong decision out of fear when I had the implants but that's neither hear nor there.

 

I begin taking Exemstrane for about 8 months and begin seeing a change in my sleep pattern, night sweats, fogging brain functions but had not idea what was going on.  I begin researching the drug and found that it could cause Osteoporsis, Cateracts and damaging to your joints. 

 

One morning when I got out of bed I was unable to walk.  The pain was so intense for several days that I called the Onc who said to stop taking the drug.  When I went to see him that's when he said try Tamoxfen.  Last year I did not have Oseoporosis and just had a check and now I do.  I've been strength training for a year and for the reason of now developing it.  Also over the last month there is something going on with my eyes.

 

That's when I decided to come off the Tamoxfen after several more months but I agree with you if my liver goes bad, and I can't see or walk what's the point.  I begin reading this blog and kind of encouraged about maybe staying off.

 

Just needed to vent and have someone hear my cry.  Thanks 

shazi 13
Member

Re: Stopping Tamoxifen after only 2 years

Yes totally agree with you that for many ladies Tamoxifen has very few side effects, and I would never tell a lady not to take it, but for me has not been good the weight gain, join pain biggest issue.  

ann-m
Community Champion

Re: Stopping Tamoxifen after only 2 years

Sorry to hear the issues some of you are going through at the moment, however, for those who are about to start tamoxifen & are worried about it, I just wanted to make the point that many women are fine on it & find any side effects are quite livable with if they do get them.
best wishes to all
ann x

shazi 13
Member

Re: Stopping Tamoxifen after only 2 years

It is now one week since stopping tamoxifen and feel just awful, have bought some bach rescue remedy spray to help my mood , worth a try ?

shazi 13
Member

Re: Stopping Tamoxifen after only 2 years

Hi , I have just stopped tamoxifen after completing 3years  and seem to feel mentally better even though it's only 4days now since stopping. I had stage 1 IDC with negative node invasion, went on to have surgery ,15days of rads and the horrible Tamoxifen. I am aged 66 and the Tamoxifen has made me feel so old, weight gain 14 pounds . flushes , sweats joint pain. How long will it take for weight gain to adjust it self? any ladies know. Also does sexual response improve?

Tumbleweed
Member

Re: Stopping Tamoxifen after only 2 years

I have just come to forum as approaching 2 year anniversary on Tamoxifen and considering stopping.  I had a history of depression and insomnia before starting the drug and hate the way I feel.  Brain fog, bloating, gaining nearly 3 stone and concentration awful.  These side effects are bad enough and worry about what else could go wrong.  I believe that prevention of breast cancer is a wonderful concept but not at the price of no quality of life.  Feel so angry that in the 30 odd years this drug has been used that the side effects are still as horrendous.  Awful dilemma and thoughts and empathy go out to all experiencing this.

 

Really negative above but my first post and became a rant!    

 

Love and light to allWoman Wink

minimouse54
Member

Re: Stopping Tamoxifen after only 2 years

hi lady julie i was on tamoyifen for 9 months made my heart skip beats i felt so poorly on it i too came of it, iv tryed other meds but they did the same so i dont take anything now i eat plenty of veg and fruit and dont eat red mea0 and no dairy things plenty of fish and just had mamagrame all clear that two and half years ago its been a rollercoaster but i am fine now just got to go and have a tatoo nipple i used to say to my daughters no tatoo now here is me having one i wounder what they would say if i asked for a four leaf cover to be tatooed in stead of a nipple lol well they do say they bring you good luck god know we nef it
PamelaC
Member

Re: Stopping Tamoxifen after only 2 years

I am considering stopping Tamoxifen after 2.5 years. In Dec 2013 diagnosed w/ Stage 1 ER + BC thru sono. Bracca1 neg. Lumpectomy in Jan 2014, clean nodes & margins, radiation, no chemo. Onco Dx score was 16 w/a 7% recurrence chance. Started Tamoxifen March 1, 2014. Gyn does a uterine sono every 4/6 months. Had d & c in Feb 2015 due to polyps. All benign. Now uterine lining thick, polyps returning & periods heavy. They want my to have a hysterectomy. WHAT!!! I have the hot flashes, mood swings, no libido, brain fog. I weigh 109lbs, eat no refined sugar, an gluten, dairy & soy free, don't drink anything but water, green tea & occassionally coconut water. Eat tons of fresh veggies, fruit, omega 3 rich fish, not much meat, lots of beans, quinoa, brown rice. I do all my own baking w/ ancient grain flours, organic coconut or raw cane sugar. Supplements include a multi, calcium, vit d3, garlic,vit c & turmeric. I don't want a hysterectomy. Wondering if stopping tamoxifen will reverse uterine issues or am I tempting fate? Looking for opinions...thanx for any input.
Anna_BCC
Member
Moved:

Re: Stopping Tamoxifen after only 2 years

Lisa in Calif
Member

Re: Stopping Tamoxifen after only 2 years

Make sure it's NOT the drug that's doing it. That really doesn't sound like the normal side effects, does it? Is the bone pain the side effect from your chemo? Probably. Check with your encologist to make sure so you have peace of mind over the Tamoxifen.
Lisa in Calif
Member

Re: Stopping Tamoxifen after only 2 years

Call me a ninny, but bone and joint pain versus not having cancer come back???? I've just been re-dianosed with B/C bone mets. I wish I had started up with this "A" drug 5-years ago. I did 5-years tomoxifin with no problem and no cancer. Been off it for 5-years and now am falling apart. Drugs are there for a reason..... If your doctor recommends them, there's a reason for it. It's a very frustrating 'choice'. I chose not to start the "A" drug because I wasn't quite menopausal. I probably should have started it a year or so ago and wouldn't be in this pickle. But, who knows.... Cancer Sucks that's all I do know. "A" drug is Anastrozole (Arimidex). Best Wishes. Have a good discussion with your doctor and seek a second PROFESSIONAL MEDICAL opinion.
Pog
Member

Re: Stopping Tamoxifen after only 2 years

I know this is long after you had to make your decision about Tamoxofen but the thoughts might be useful. I had posted this in January 2016 in reply to another thread.

 

I had the 'works' in Nov/Dec 2012 through until end Feb 2013. Was taken off HRT abruptly and given Tam. Had the worst possible side effects from both stopping HRT and taking Tam. After further discussion with Onc about quality of life vs the possibility of returning cancer decided to stop the Tam and in fact eventually, after suffering for months went back on HRT to control the symptoms of sweating, flushes that happened every hour, day and night. It was a very difficult decision but I made it with support from the Onc based on the fact there had been no point saving my life in order that I could live in a thoroughly miserable way for the rest of my life, however loong that might be. They couldn't tell me if the flushes and sweats would ever stop as it seems my 'heating mechanism' has been damaged in some way from the abrupt HRT cessation. For the last year I have taken HRT which is only just keeping the devil under control, while hoping the cancer will not return. I'm 3 years since surgery now which is great and about to take part in a new research project. I hope I can help in some way so that others can have a better, less invasive and less intrusive outcome.

When we start down this road, we all do what we do initially out of fear, pure and simple. You do what you think is best at the time and once the urgency of it all dies down a little, sometimes you have to step back and rethink/review your initial thoughts and opinions, and that's fine The docs admit they can't guarantee that if you do everything they advise that cancer will stay away forever and again, they also admit if you DON'T do everything they advise they can't say for sure it will come back. They can only give you their best guess. It's all a balance between doing what you feel is best for you while carefully balancing it all up and trying to have a reasonable quality of life. For myself, however selfish that may seem, I'd rather have whatever time I have being happy, comfortable and able to live as vest I can and want with my family rather than take all the drugs that actually caused me pain and problems and made my life and the lives of my family totally miserable. It took me a while to make that decision and to be happy with it but I feel very much better for it. If cancer comes back then we'll deal with it again. I can't live my life in fear and I can be of no help to anyone else if I'm in constant fear.

 

Good thoughts to all of you out there who are undecided about your treatment. Stay calm and the answer will come to you. Trust your instinct and don't fear life.

LadyJulie
Member

Re: Stopping Tamoxifen after only 2 years

So sorry to hear your cancer returned so soon lolly73. Hope you are on the road to recovery. I guess you will never know for sure whether stopping the drugs was the cause of your recurrence.
LadyJulie
Member

Re: Stopping Tamoxifen after only 2 years

Thank you loveflowers3 and jenji. Great that you are both ok 2 years on from stopping or not even starting Tamoxifen. Let's hope it stays that way. For me it's 2 months and I'm comfortable with my decision.
lolly73
Member

Re: Stopping Tamoxifen after only 2 years

I took tamoxifen and zoladex for 3.5 years, then changed to exemestane for 18 months after ovary removal.  Stopped after the 5 years total hormone treatment and 1st mammo the following year the cancer had come back. Now back on letrozole another 10 years. Wish they hadnt stopped me at 5 years....

Jenji
Member

Re: Stopping Tamoxifen after only 2 years

Hi Ladyjulie

 

I made the decision not to start on the Tamoxifen for the reasons other people have said.  Zapping my oestrogen was not an option for me, as I know I would not have coped with the mental consequences.  My grade etc has a good prognosis but I may well have made the same decision had it been worse.  I am two years on as well.

 

Take care

Jenji

loveflowers3
Member

Re: Stopping Tamoxifen after only 2 years

Hi Ladyjulie I only stuck with tamoxifen for 6 horrible weeks - when I stopped I became me again - the fog cleared and I felt normal, I decided I would rather live my life as 'me' for as long as possible rather than possibly longer in the tamoxifen state. subsequently the oncologist said in my case it probably made 1% difference or less to a recurrence!!. I am now 2 years on and so far so good!
LadyJulie
Member

Re: Stopping Tamoxifen after only 2 years

Wow **bleep**, that's a lot of treatment and experience of various drugs you have had. Thanks for sharing it with us and I do hope you are well on the road to recovery from these most recent bouts.
pussy
Member

Re: Stopping Tamoxifen after only 2 years

Hi 

when i was first diagnose with breast cancer in 1995 i took tamoxifen for 2 years which my onc at that time told me 2 years or 10 the results were the same i wanted to come off it as my auntie the only other person on my side of family at that time had taoxifen related cervical cancer so i came off it i as er+ her2 n i had no other sort of treatment at that time  the protocols dictated with dci and no other involvment it was not needed i then went 15 years before it came back but was misdiagnosed by gp as suffered with back pain and told it was muscular i finally got to see a breast consultant who arranged ultasound on my mastectomey side were there is a silicone implant he discharged me as nothing there he said 3 months later i represented a large mass under right rib cage turned out to be breast cancer grown from behind implant gone to T6 of spine and chest wall and the last 5 years have had chemo twice arimidex then tamoxifen for 15 months which gave me a new tumour and a blood clot on the lung i am now on examstane could not get funding for everolimus which works better in conjuction with the examstane as i have had to much treatment as to get everolimus you can only have had 1 chemo and 1 hormone treatment 

 

 

 

Mindy63
Member

Re: Stopping Tamoxifen after only 2 years

I've had Bone pain in my thigh, spine, neck, shoulders arms and ankles. I can't get a full nights sleep. I feel this drug is damaging me. But what if I stop and it comes back to bite me? It's an impossible choice.

LadyJulie
Member

Re: Stopping Tamoxifen after only 2 years

Hi maire,

Yes it is a dilemma, you're so right. I had been ok on it until the clots appeared, then decided to stay off it.

 

My BC gave me 3 options and it was up to me to decide - don't take any hormonal drugs at all, go back on Tamoxifen or take another drug (begins with A) as I am now post menopausal but he outlined that it can cause serious bone and joint pain.

 

So I decided to take nothing - but don't know whether it's the right decision. x

Mindy63
Member

Re: Stopping Tamoxifen after only 2 years

I'm approaching my 2 year anniversary and would really like to stop but am afraid. It's a real dilemma

LadyJulie
Member

Re: Stopping Tamoxifen after only 2 years

Thanks for your prompt reply Ash and for sharing your story and that of your friend with me. I'm staying off that drug that's for sure and will deal with the consequences as and when they're thrown my way, as we always seem to be able to do. x

Ash66
Member

Re: Stopping Tamoxifen after only 2 years

Hi Julie

2 years is pretty good going as far as I'm concerned. I lasted 3 weeks. I was grade 3 stage 2 and also HER2+ so pretty aggressive. I've had WLE, chemo and bilateral mastectomy. After all that I couldn't and wouldn't put up with the side effects of tamoxifen. My surgeon and bcn both admitted most women are overtreated and they still don't know who benefits from all this. It's belt and braces for all. I have a friend who had 2 recurrances while on tamoxifen. I'm comfortable with my decision and am happy to take my chances. x
LadyJulie
Member

Stopping Tamoxifen after only 2 years

Hi Everyone, I recently developed blood clots in my leg whilst on holiday in France and although they were in superficial veins rather than DVT, I have associated them with the side effects of Tamoxifen and stopped taking it with the support of my oncologist.

I am pleased to be off it in one sense but wonder if Im putting myself at risk through stopping it early. My IDC was stage 1 and caught early through NHS screening. I had lumpectomy and radiotherapy and have suffered from 2 bouts of cording in my arm and chest recently.

Has anyone else stopped taking Tamoxifen early?? Your experience and advice would be very welcome, thanks.