I’m right there with you. I was on tamoxifen for 5 years for prevention due to an abnormal biopsy. Was 40 when I started. Had a few side effects during the time I was taking it but all totally manageable and overall felt pretty good. I took my last dose in July 2016, then developed a new large fibroid (I had never had any problem with these before) which started to bleed profusely and ended up with a hysterectomy in November 2016. Then had 2 years of depression (also totally new for me). Crying for no reason, no energy, stopped finding joy in things I did before, no concentration/mental sluggishness. I have just now started to feel like myself again but now starting with frequent hot flashes. I think my body was just really screwed up after coming off the tamoxifen. I actually feel much better mentally now that I think my body is doing it’s normal thing and I am now moving into a true menopause with natural hormone changes. I think I’ve been “withdrawing” from that darn tamoxifen this whole time.
I am wondering the exact same thing. 74 years old and my oncologist 'almost' promised me she would take me off it. My five years is up tomorrow and I would like to know about my returning hair, relief from this ongoing constipation, as well as other things. who can we ask??
i am 5 years out and my oncologist has told me she will probably take me off of tamoxifen right away. Will things go back to normal afterwards?? --such as hair , skin, no constipation, sleep habits, and bone pain??
Why did you come off after 9 years ? - I've done 6 and ready to come off but my oncologist suggests 10 now. But having endometria issues.
ME TOO! = Just completed 6 years, Oncologist suggesting 10. Don't hink I can do it....
Hi Cindy D, thanks for sharing!! - Just curious why you had the hystectomy, oopherectomy and salpingo? Where you having issues? - I have been on Tamoxifen for 6 years and ready to come off!! - Of course I have many side affects (hot flashes, leg aches, bone aches, confusion, blurry vision but I just deal with it) My main concern is the endometrial uterine lining keeps getting too thick. I just had a D & C in December 2017, now it's thick again! - My Gyno says it's from the Tamoxifen of course. She did a biopsy to make sure nothing had changed with the cells. (2 weeks before resutls) Either way she's suggesting a hystectomy, oopherectomy and salpingo. so I'm curious if you had this dues to complications with tamoxifen too?
Thanks & Blessings
Very sorry to hear this, Oreolover.
You say you've been on Tamoxifen for 3 years. Do you have review sessions with an oncologist and/or your GP? You need to speak to a specialist about coming off the drug, if that is what you want to do. You need specialised advice; I'm afraid we couldn't give that. You might find it helpful to phone the specialised nurses at Breast Cancer Care on 0808 800 6000, or Macmillan Cancer Support on 0808 808 0000.
Have you written up some notes about your side effects? You might find it helpful to do that so you can take some information along to the oncologist/GP to aid discussion and for them to add to your health record.
I do hope you get the help you need soon.
It sounds as though you have made your decision and that your Mum supports you in it, so that's a really good start. I'm really glad your cat's supporting you too! You're right, they are very intuitive animals. Mine are a great comfort. I sometimes wake up in the small hours, when it's dark, feeling petrified and unable to get back to sleep. One of my boys (both neutered toms) is usually lying beside me. Without my saying anything he just starts to pur, and keeps it up for a whole hour or more. By 6.30 am I usually have two very upright furry statues sitting one on either side of me, staring at me very pointedly and purring politely in unison.
As for hormone therapy, I am contemplating giving up on it myself, and have an appointment tomorrow to see clinicians at the Breast Clinic. Letrozole caused a rash after 3 weeks, so the oncologist prescribed Aastrozole. After 9 1/2 weeks of Anasty I had gradually developed debilating effects which I'm pretty sure are a consequnce of oestrogen depletion, so I'm reluctant to try Exemestane as it's likely to prompt the same. I stopped Anastrozole 3 weeks ago and am still not back to my normal self. Although it acts differently, Tamoxifen appears to prompt very similar side effects to the AIs, whilst risking some very nasty possible long-term effects as well. I am considering refusing it.
Quality of life is so important. None of us should feel we have been forced into a treatment that has, in itself, made us ill. It comes down to deciding which horrors we are prepared to trade for which other horrors.
I do hope that you can become pain free soon, and that your work (and your cat) will lift your spirits.
All the best
It will be difficult for anyone on this forum to give you really clear advice, as your case is specific to you and needs medical input.
You make it clear you are in agony on Tamoxifen, and have been for some time. This indicates you need specialised advice from your Oncologist and, preferably, a Breast Care Nurse as well. You could ask them if it's feasible to take a break from the drug to re-establish your baseline of health issues, so you can then have further discussions as to what might help you most.
Stats are no more than a very general guide. (I'm a former maths teacher and taught stats along with other areas of maths.) Stats results are based on trials of 100 women and no-one can say which individuals they will apply to and which will be the exceptions. Decisions whether or not to take a treatment need to be looked at holistically.
What would be of greater help to you would be to arrange to see your Oncologist again, and to take along a breakdown of your medical history, including your depressive illness and other significant health issues you are having to juggle with cancer. (How long has your depression lasted? Are you on any medications for it which need taking into account?)
It could also help for you to list all the aspects of your life which make life worthwhile, and which you feel are being damaged by your present treatment.
On discussing all your health issues with him/her, you could ask them to run through all the known adverse effects of Tamoxifen and the other endocrine therapies, and relate these to your existing health issues. It could be helpful to discuss how each drug available to you might make your current health problems worse.
Try being frank with your Oncologist and give him/her a chance of understanding where you are.
Make a fuss of your cat and give him/her a chance of giving you love and attention back. I'm a great believer in the support and understanding of cats, and talk to mine a great deal! It's surprising what they understand and how supportive they can be.
It's sometimes tempting to want other people to make our decisions for us, but ultimately we have to decide for oursleves what we can cope with and what we can't.
All the best
You are certainly not alone.
Have you been assigned a Breast Care Nurse? You might find it helpful to phone her and have a discussion about your side effects, your anxieties and your problems with quality of life. She should be able to direct you to someone appropriate within the hospital for further advice and support. You could also phone the specialised nurses on the Breast Cancer Care line at 0808 800 6000; I have found them very helpful.
It can happen that oncologists are sometimes slow to understand the effects of oestrgoen depletion on your general health and daily life, especially if you are on your own and have to be self-reliant. There seems to be a general assumption that everyone has family who can care for them, when the reality is quite different.
You might find it helpful to write down a few notes about your present side effects and how they obstruct your daily life, referring also to your personal circumstances and your need to manage everyday practical household matters as well as your own care. You could include information about relevant aspects of your medical history. You could request an appointment to see your oncologist and/or your BCN to discuss the problems you've outlined, prividing them with a copy of your notes for your medical file. I have done this and have found it helps to get the message across.
Qualilty of life is the most important thing. You need to find the right answer for you that will allow you to cope, and to do that you need to have your clinicians on your side. Do talk to them and get their support for whatever you decide to do.
All the best
This is for all my sisters having new symptoms after coming off Tamoxafen,
I just started on Tamoxafen. I am also a Neurologist, but not an oncologist! Tamoxafen helps reduce breast cancer recurrence by blocking estrogen binding in the breasts. In other parts of the body, it acts like estrogen. I know it helps build bones, and works like estrogen in the pelvis, after discussing symptoms with gynecologist.
The headaches he’s and dizziness sound like symptoms of estrogen withdrawal- similar to what happens in menopause. This can cause hot flashes, insomnia, irritability, migraine, anxiety, depression, etc. If side-effects are bad, it is a good idea to discuss gradual tapering of Tamoxafen with your doctor. Everyone is different, but the body adjusts better to gradual changes.
Another possibility is that your symptoms are due to Vitamin D deficiency. To the body, Vitamin D has a similar structure to estrogen. When you stop Tamoxafen, you stop the estrogen effects it had on some parts of thebody. If your Vitamin d level is low, supplementing Vitamin D3 May help reduce your symptoms. This should be supervised by a physician, as too much Vitamin D can also cause problems.
I hope this helps! You are all helping me feel less guilty for how tired and listless I am! Blessings to all of you! Braindoc
First of all, welcome to the forum. The people on this site are pretty amazing and loving. Great support.
When I began the Tamoxifen I was so terrified of the cancer spreading or coming back, so I bit the bullet and took it. The side effects were bothersome, but I told myself.. you have lots to lose If you don't. My cancer was fast spreading kind, and I had my only child, and she was 13. I am single parent, and looking into her heartbroken terrified eyes told me I needed to do the tamoxifen, whether I liked it or not.
Am happy i made that choice, because am in remission and it has been almost 10 years .
I am saying, do what you think is right for you. There is hope ..and come back to the forum often , if you are able to. So many inspiring stories, and encouragement.
I hope I helped you , even a little bit. My thoughts and prayers are with you.
Stay strong and take good care of you.
P.S. I have a few posts on this forum explaining what my journey was like..
if you wish , look me up Silverraynefox
With sincere words of healing for you.. HUGE HUGS to You as well..
Hello and welcome to the forum, you will get loads of help and support from the lovely ladies on here.
It is scary taking any medication for the first time and even more so when you read all the side effects that they put on the leaflet,. What you have to remember is not everyone get all or any of them and the suppliers have to list them in case they get a compensation claim against them if they did not. When I started taking mine, I stared at the pack for a week before taking them, that was 2 years ago next month. I have had a few side effects, mostly at the beginning and I have a lovely hot flush about an hour after taking my tablet, which I take in the morning, but on the whole it has not been anywhere near as bad as I thought.
Sending you hugs
I did lose some of my eyebrow hair , but only on my left eye, now the hair came back light blonde and i am dark brunette, but i just use eyebrow dye and it lasts a bit , but i am so concious of it. Eyebrows are way thinner than before treatment . I am much thinner now , than before, by about 30 lbs. I choose to eat healthier, and this is why the weight loss. I cannot fathom eating fast foods etc. My body repels it if i do.. so i chose to eat healthier. Hope this helps a bit ..
I am 71 and have been taking Tamoxifen for almost 5 years. Lots of hot flashes and difficulty sleeping. Worst is fuzzy brain and sometimes emotional roller coaster. Mammos and exams every year are all okay. No one will give me a straight answer as to my risk if I stop Tamoxifen after 5 years.
Original dx was Pleomorphic Lobular Ca in Situ. Had modified mastectomy, but no chemo or radiation.
Any advice or suggestions are welcome! Thanks....
Coming up on my five year mark for the tamoxifen. Dr wants to test the original tumor to see if it's better to go the ten. Im almost resigned to stop anyway. Im not sure the benefit is that much more. Diagnosed stage 2 b on right and insitu on left. Double mastectomy, bad reconstruction, hysterectomy, oopherectomy, salpingo. Positive BRCA. Then my gallbladder shut down. I'm really hoping for a good outcome after stopping. I have horrible hot flashes and leg cramping. I've gained weight and my energy level is just not what it should be. Hre's hoping for the bet.
question for the ladies that are off tamoxifin. Did you loose hair or eyebrows and if so did they grow back after you got off the medication? My eyebrows use to be perfect and now i barely have any. And what about weight gain did you go back to your pre weight size before tamoxifin?
oh ok. I've done good on it minus brain fog and a little leg cramping but i'm almost to my 5yr and want out. lol
How long were you on Tamoxifin before getting off Silverraynefox? It's good to hear good news over a lot of negative news.
Good morning sweethearts!!
I pray for each and every one of you going through treatments , or coming off them. I can say, for myself, that things do settle down... i have been off tamoxifen for 6 months now and i feel better than i have in years. At first, going off Tamox... i felt achy and sad, and grumpy... I now feel better in all areas, except being diagnosed with arthriris now, which is in my spine and hips and legs... BUT i am managing..
Hang in there to all... we are so individual , and when coming off any drug , some will feel better or worse... my thoughts are with all of you.
All in all, for me, life is great! I just tell myself today is a good day and i shall make it a happy one.. even if i feel opposite. takes work, but am in MUCH BETTER place than I was a couple years ago..
keep shining, and smiling... YOU WILL GET THROUGH THIS!! All my love to you... YOU CAN DO THIS!!!!
Feel free to message me anytime.. just to say hello or if i can help in any way....... God bless! <3...
P.S. getting out in nature helps immensely.. xo hugs to all
I have been off for 1.5 years and still the side effects keep coming aka no sleep hot sweats fatigue and big bad mood swings o
I thought it was just me whom felt like this I Have been off 1.5 years now and still feel that way . Mood swings crying snd someties thinking what if . Its not a nice feeling
I was diagnosed with BC in 2011. The year my oldest was going away to college... , I was 45 years young. In the prime of my life. Had just lost 30 pounds of baby weight and was so full of energy it was unbelievable.
After having a mastectomy on one side, reconstruction on both I was put on tamoxifen. Like most of you, I was told 10 years. During the second year I started experiencing terrible side effects. Joint pain, extreme tiredness, bitchy beyond belief, crying, not wanting to get out of bed, and complete craziness (full blow depression if you ask me). I complained and complained. The doctor changed the doses from morning to the evening, from the evening to twice a day at a lower dose, which seemed to help some, but not enough for my liking. Still many aches and pains, still uneven temper and uncontrolled crying at times. I was monitored every 3 months. Periods came sporatically. This lasted for over a year. I was too tired to do anything and gained back 40 pounds. I was having yearly internal sonograms to check for uterine cancer (a 2% risk on tamoxifen). Each time I was subjected to "issues" and had to have additional testing. The additional testing lead to nothing. So nothing was ever done. Body started to deal with the tamoxifen within the last year a bit better, but still achy and tired, just not as cranky.
Here we are 7 years later almost to the day. My last internal sonogram has once again found some "issues", leading to the additional testing. The MRI has resulted in suspicious abnormalities, so much that my oncologist has told me to stop the tamoxifen and see a gynocological oncolgist. (Waiting for that appointment). So, now that my body finally stopped fighting the tamoxifen over the last year, I have been removed from it and starting the blues all over again. Tired, cranky, and just in a completely blah kind of mood all the time.
Sorry for rambling on and on. Just wondering if anyone else has had all of these issues and if I can expect to get back to my pre-cancer self anytime soon?
I have just stopped taking Tomoxifen last month and noticed my hot flushes had also started to come back. I had to have a full hysterectomy 15 months after being diagnosed and treated for breast cancer, after this I had bad hot flushes but they passed and I have had a fairly good year free of day time flushes and less severe night flushes. At first I put it down to the hot weather but one of my staff thought I was getting angry as she could see my arms and face going red- bless her... I decided to look into the side effects of coming off the Tomoxifen and was amazed by people suffering the same thing, hot flushes, headaches, hunger, tiredness. I am hoping that all this passes soon as I have been going to the gym and dieting for the last six months and really battling with losing weight even though I am working so hard at this. What makes it worse is the glorious weather we are having - however despite all this I am so thankful that I have got through the last 5years and got the all clear, now it’s just this last hurdle. To all those lovely ladies out there going through the same, stay positive and keep fighting xxxx
ann-m and that's just what i said 10 yrs going to go to 15 yrs and 15 going to go to 20 and so on... It's a money making thing. Like i told my Onc this is keeping a lot of women in fear and it's unfair. There's no guaranteed in nothing now adays.
Victoria16 Ok, I just seen my Onc and we talked about it she was laughing at me because. I'm really considering getting off in April that will be my five years. I'm now doing yrly mammograms after doing every 6 months. This past monday was my first yrly and and it went well, i didn't have to do more images or u/s so i was happy. But my Onc is not persuading me either way. She just says if you don't have bad side effects they say you should consider staying add'l 5 yrs. But to me there's no proof in nothing.
When I was first diagnosed just over 2 years ago, I initially was told 5 years, then it was changed to 10 years, so it probably came in generally, at around that time. It was based on research that found reduced recurrance rates if hormone treatment was continued to 10 years. I was also told that it may go up to 15 years!
If you would prefer to continue, it maybe worth talikng to your team or GP about it.
Why were some patients told 5yrs on Tamoxifin and other 10yrs? I was dx in 2013 I was told 5 yrs but i'm noticing some ladies on here did the 10yrs being dx prior to 2013. Just curious to see if anyone know. Seems the Dr's don't they're just going by studies. Now I know most recent dx ladies will be told 10 yrs because that's what they are saying now. But us ladies from earlier dx we were told 5yrs nothing else, no possibility of staying on 10 or longer at least not me.
Thank you @Silverraynefox for some HOPE after Tamoxifin. Feels good to hear positive outcomes.
That's @Victoria16 good to hear that your body is now adjusting, and most of of all losing weight. This make me feel at ease as i'm looking at ending 5 yrs in April. But i'm not sure about getting that period again, however i'm 52 now my dr said tamoxifin may have blocked it for good. I hope so. lol
Just wanted to say.. hang in there.. i felt same way after suddenly stopping 9 yr. therapy. That was end of January , this year. I now feel so , so much better being off tamoxifen.. i thanked it for what it helped in my body, but was happy to bid it farewell. I feel much healthier ( altogether feeling way better in all areas)... i pray you will as well.
Best wishes to you.... <3