Has anyone stopped taking Tamoxifen and not taken anything else as a replacement?
Please can you inbox me if you have, and tell me how you came to that decision.
I’ve been on Tamoxifen now for just over a year and am having the most awful time. My onc allowed me a six week break just to get my sanity back - which was fantastic - I felt like the old me and totally ‘normal’. Since going back on Tamoxifen 6 weeks ago, I’m back to the miserable me.
My Onc is great, and advised she will go with whatever decision I make - but just finding it too difficult to make the decision!
I completed all other treatment so see tamoxifen as an added ‘insurance’ - but can’t get on with my life while on those damn pills! I’m 32, planning a wedding and trying to get on with the rest of my long life!
Would love to hear from someone who has made the decision!
Some people have swapped from Tamoxifen to having Zoladex injections to turn off their ovaries and then taking Arimidex or one of the other aromatase inhibitors. You might want to discuss that as an option with your onc. And I also suggest you give the helpline a ring to talk things through, they are very knowledgeable and might be able to suggest things to help you.
no experience of this yet - but will have i think!
but from looking at threads about this drug so i know what to expect, people have mentioned about the various brands of tamoxifen and how some get on better with certain ones. don’t know the various brand names but i am sure your onc will.
best of luck with your decision and your wedding planning.
Hi Carly - I first had BC in 1990 and took Tamoxifen for 2 years but the side effects and quality of life were so horrendous that my onc agreed I could stop. 17 years later BC reappeared in same breast and had another lumpectomy and have now been on Arimidex for 4 years which is much better.
I know someone who is ER and PR positive but does not live in England. She stopped Tamox after 2 years and her Onc’s was not happy about it so she was then offered oohperectomy/etc but she really did not want to opt for that. After some discussion her Onc accepted the quality of life argument and did not take the easy route of just washing her hands - she did some homework re endicronology and then prescribed progesterone cream which seems to suit my friend well. You can read about this approach as Dr. John Lee, Dr Northrup and Dr. David Zava have all written on the subject, just google them. The theory goes that being progesterone positive means it can have a moderating effect on breast tissue and that estrogen is balanced by extra pr. She is now 7 years with no recurrance and says she feels great.
Maybe get your Onc’s opinion on whether this could be a sound approach for you?
Hi - I stopped tamoxifen after about a year and a half, I had a local recurrence within a year. No-one can tell me if that would have happened anyway. I have now had MX and chemo and will be having oopherectomy next year. No AI’s at this point though. I am 41 years young.
A lot depends on your grade,size etc of BC - statistically my risk of it not coming back was well over 86% - but someone has to be in the other 14%…
Sorry to not be the bearer of a happy ending on this one - but in my opinion its always better to have both sides of the story before making a decision.
hi Carly, please feel free to PM me, I’m not taking tamoxifen and fed up with being shouted at on the site for not taking the so called wonder drug. There are some very angry and rigid thinking ladies on here
Best wishes
Leadie
Some of us are angry. I have spoken to you before. I did all the diet, juicing, exercise thing and took tamoxifen from the age of 33.
When I had to stop taking it ( 6 1/2 years later) my cancer was back, within a year, as secondaries to my spine and lung.
I would hardly call it rigid thinking. Look at Caron Keating etc. Did everything possible on the holistic front bar taking tamoxifen !!
I am all for exploring all the options…BUT having secondaries does make me angry, very ANGRY !!!
Our cancers are all different, one persons experience or prognosis is not the same as anothers. Our consultants gear treatment to pathology.
Talk with your consultant, bcn or the Helpline. Dont rely on hearsay but think carefully.
Carly, Tamoxifen can have an equal or better effect on your prognosis than chemo. But the benefit to you will depend on your type of cancer.
I agree with Juliet - it’s a big decision and one you should talk through with your onc, BCN or the helpline. Even if 100 women replied to your thread saying they quit and they’re fine…it doesn’t mean that they’ll all be fine in the future, they might have had different cancers like less sensitive to oestrogen and at the end of the day YOU are the one who has to live with the consequences. But that also goes for now - if your quality of life is low then this is something your onc should take seriously and come up with some other solutions.
Good luck Carly. It’s a nasty situation to be in and I really hope your onc can help you and that you come to a decision with which you are happy.
I had 5 years of Tamoxifen and was okay but I am now going through the same as you with Letrozole. I am in my 3rd year out of 5.I have had a break from Letrozole but am back on it now. I have been diagnosed with Burning Mouth Syndrome(blaming the drug but cannot be 100% sure), its not a serious condition just painful and started 6 months after starting the AI.
Anyway what I want to say is that at the moment we are trying to treat the symptons of BMS because I want to stay on Letrozole and I would rather be on something than nothing at all.
So be a real pain (because thats what I became) and get some help with the side effects.You need a GP who really understands your problem, luckily I did. Now I was on amitriptyline whilst I was on Tamoxifen and that helped. Also the more you worry about it the worse you will feel. Think of a time when it isn’t so bad, write a diary. You say that you are miserable all the time then I think that you need a little help.
The funny thing is that last week I went to see my BC surgeon and bombarded him with a load of questions and I mentioned what I had seen on the internet, he just rolled his eyes,and said “ah the internet” Sometimes its good, sometimes its not always helpful I guess.
Hi Carly, in your shoes and especially at your young age I wouldn’t quit Tamoxifen. I understand julie’s anger as I was diagnosed in my early 40’s with bone mets from the very start. Even at stage 4 Tamoxifen still gave me 18 months of no detectable cancer activity before I was moved onto Arimidex. Yes there are side effects but having secondaries is truly bl**dy awful and whilst Tamoxifen may not stop any recurrences in the future it’s a very effective drug and I’m so grateful it’s added years to my life…but I’m coming from a different place to you and wish you all the best coming to the decision on what’s best for YOU so this is just my opinion, my experience…Take Care…xx
Sorry I did not quit Tamoxifen switched to Arimidex but I was 47 and post-men at diog. I have a year and a half left on AI and I am becoming more aware how I have become attached to taking it as I am aware it is possible it is preventing the return of the BC. I do have thinning of the bones and rather creaky but think if it keeps secondary cancer away then worth it.
I am sorry that u are having such an awful time and hope you can find a way around this dilemma, regards Alice
Hi carly,i was reading that jeniffer saunders was having a really bad time on tamoxifen and her oncologist halved her dose,maybe you could ask your oncologist about this.have you asked your oncologist/breast care nurse to explain the benefits you would get from taking tamoxifen for your cancer and the persentage benefit.i think leadie had a very small tumour no vascular invasion and no nodes involved so there’s a good chance that her cancer wouldn’t return.all these things have to be considered.Also i do think that if it was that easy to balance or stop eostrogen naturaly we would all be advised to do this and not have to take hormone therapy in the first place.
Hi Carly,
I quit taking Tamoxifen just over a year ago. I had been taking it for about 7 months but the side effects became too awful. I stopped for a couple of weeks and within days was back to my old self but as soon as I began taking it again, I had a return of the nausea, violent headaches and the most awful panicky, anxiety attacks which were totally unlike me. That is not to mention the joint aches and pains. My quality of life at that time was nil. I could barely get out of bed and I certainly couldn’t function. I decided that quality was worth more than quantity and felt that I’d rather have 2 really good years than 20 feeling like death. Having said that however, I did talk at length with my doctor and discussed, at length, what my risks were. Personally my risks were low and that swayed the decision to come off the Tamoxifen altogether and not to take any alternatives. This isn’t going to work for everyone and I am well aware that I may live to regret the decision.
My overwhelming priority was quality of life but that is something only you can decide. I would certainly advise a long and detailed talk with the doc before you quit completely.
Good luck!
Val x
I didn’t do the full 5 years on it (I did 3.75 years), as although I had minimal day to day side effects, I developed endometrial cancer (which I was successfully treated for). I had my ovaries removed but chose not to go on an AI instead following advice from my oncologist. With hindsight this was the wrong move as a couple of years later I was diagnosed with bone secondaries. This might well have happened anyway but I’ll never know and it’s still difficult not to feel angry with myself and my doctors. So I would think very carefully about not doing whatever time you are recommended to do on hormonal treatment although it must be very tough when the side effects are very bad.
I’m 33 years old and I know exactly what you’re talking about. I celebrated my wedding back in November, and even though it was the best day of my life, I feel bitter about the fact that a big part of it has been taken away from me because of my continious side effects. Not only did I gain a little over 3 stone since starting the drug 2 years ago, I also have joint pains, minimal hair grow, frail nails and a fuzzy brain with memory loss…
Ultimately it will be your decision, but I can’t say I haven’t thought about stopping tamoxifen completely. I also have to mention that sex drive is on zero, and that’s really not cool when you’re in a 5 star hotel for your honeymoon…
I know some people here will take the pills until the very last day as a protection, but there are no garanties whatsoever whether you take the drug 2 years or 10 years. I may or may not come back. And that’s it.
Like you I haven’t taken a decision yet, it’s really hard…
Hi there
It is a a really difficult decision to make, so i can completely empathise with you.
I started tamoxifin May 2010, and am also considering talking to my oncologist about either giving it up or switching to something else.
Whilst on the drug, i have zero sex drive, experience soreness and dryness ‘down there’ and have quite erratic mood swings. My poor OH has had to put up with this, as well as the endless surgery, chemo and all the stuff that goes with that!
I am struggling enough with the loss of my breast, and recon, let alone having to deal with additional side effects from a daily drug.
In Novmember, i gave myself a break from tamoxifin, within a short period of time, i felt normal, moods evened out and sex drive returned!
So,in the New Year, i am going to speak to my oncologist, and see what she thinks, as for me,i would rather have some quality of life at the moment, as only just approacing forty!
Good luck with your decision making - it is a hard one to make, and you will gets all dimensions of the picture on here.
Hi Carly,
I have just read all through htis thread, and I really feel for you and other ladies, especially younger ones, for whom Tamoxifen is spelled M-I-S-E-R-Y. I was 47 at dx, nowhere near menopause (thought chemo saw to that in effect), and am now almost 1 year into taking Tamoxifen. I have loads of hot flushes (mimicing an underlying hormone cycle I reckon, one week in four is evil, three are less so), early morning stiffness and wrist/thumb problems. For me, however, carrying on with Tam is a no-brainer - my prognosis is in the ‘poor’ part of the NPI scheme (others are available) and if the price for life is sore wrists, sweltery days, soggy nights and stiff mornings, then for me, that’s a price I’ll pay.
A lot of ladies find their side effects reduce with time, and I’d have to say I’ve kind of got used to mine. You could also investigate the alternatives.
Someone said higher up this thread there are some strong-minded ladies on here - I suspect we all are, whatever our views: how else would we get through this. The only one who can make your choice is you, and I’m sure you’ll make a good choice, balancing quality of life now with risk later. The rule of thumb I use is rhis “if I make choice X and the cancer comes back will I wish I’d made choice Y instead?” I know what that means for me - which includes sticking at the Tamoxifen religiously, to the very last day - but for you it may be different.
I do wish you long life, health and happiness, whatever you decide.
This is just a quick query Do anybody know if the se’s from tamoifen are the same for the older lady who has gone through the menopause naturally as they are for the younger woman.
the reason I ask is I’m about to start taking Tamoxifen in about four weeks, I went through the menopause eleven years ago so just asking what experience the older lady has had on them.