Hi Ladies Is anyone questioning or has refused to take the hormone therapy? I have just completed 4 sessions of TC chemo and am about to commence 6 weeks of radiotherapy but this hormone therapy isnt sitting well with me at all - all the awful side effects which I keep reading about sound just like the symptoms I have had with chemo and I cannot stand the idea of living day to day with those for the next 5 - 10 years. I have started doing some homework on alternative options - ie clean eating, exercise, avoiding certain foods, cosmetics etc and it is sounding quite positive although I have to keep researching to ensure I make a well informed decision and feel 100% positive about the choice I make. I am also seeing a naturapath for advise this week too. I am just curious if anyone else feels the same and has the same doubts or if they have already refused the medication. Love and healing to you all Lynn xx

I have been on Tamoxifen for 16 months now and can honestly say that I have no side effects now. I did have some nausea to begin with which settled very quickly and some hot flushes during the first 6 months. For me Tamoxifen reduces my chance of recurrence from about 50% to less than 20%. I found that eating a very healthy diet, exercising and generally leading a healthy lifestyle seem to reduce any side effects. I regard these habits as additional things that I can do to keep myself well rather than thinking they could give me the same sort of protection that Tamoxifen can. I feel very fortunate to be able to take this well-proven medication and am getting on with living my life to the maximum. I am currently training to take part in a charity challenge (raising money for the Cancer Council) trekking to Base Camp on Mt Everest in April this year. I have never felt better in my life and definitely don't feel that Tamoxifen limits my ability to enjoy every aspect of my life. That is my experience so far, definitely not awful at all. Good luck with it if you decide to give it a go. Take care. Deanne xxx

Hi Deanne Thanks for that and it is certainly refreshing to hear a positive side to the medication. That gives me something to think about. Who was it that gave you the statistics about how much protection the medication was giving you - was it your oncologist? Thanks again and well done on your challenge in April - very impressive :-) Take care Lynn xxx

I have my prescription for Tamoxifen sitting at home unfilled too...I have been thinking about this for a month since my BC surgeon gave me the good news that my bi-lat skin & nipple sparing mastectomy with no cancer in my sentinel node. She said I had two areas of cancer but both were small low grade stage 1 and I am both oestrogen & progesterone positive so I she was prescribing Tamoxifen. I asked why, if all the cancer was removed and practically all of the breast tissue with the back of my nipples being scraped off...what were my chances? She was surprised I was questioning her. But why not question it. She had to check with my rhuematologist if my risk of blood clotting would prevent me from taking this drug. Reading about all the other side effects and risks surely makes me question it. I'm not refusing it, but just taking my time, and I am considering starting it after I fully recover from my surgery, but I am not rushing to add more drugs to my life and think making healthy lifestyle changes are good enough for me today. There's a lot to absorb when you are on this learning curve. take care, luv Ali x Take care,

I felt exactly the same as you before I started taking tamoxifen in Jan 2013. I was terrified that I would gain weight, develop terrible insomnia and become moody and depressed. My oncologist actually told me that most of her patients on tamoxifen gained about 5kg. But I can honestly say none of these things has happened. I do think my hair may be affected by tamoxifen - it is less thick and lustrous than it used to be (thought it was a hangover from chemo but I read on here that tamoxifen can affect your hair) Also, I recently had a pelvic ultrasound which found the lining of my uterous has thickened. This is very common apparently. I am off to see a gynocologist about it soon. But otherwise I haven't had any side effects. Like Deanne I put quite a lot of effort into eating a healthy diet and exercisiing regularly. I think being as healthy as possible helps your body tolerate medications better. I too see a healthy lifestyle as offering additional protection against a BC recurrance. I wouldn't now want to stop my tamoxifen as I feel it makes a significant reduction to my risk (11 % in my case). It makes me feel protected. I would say give the tamoxifen a try at least. Some people do experience unpleasant side effects but you could be one of the lucky ones who does not. It is a very effective drug with a proven history of reducing breast cancer risk. Good luck, Janet.

Yes, my oncologist gave me the statistical difference that each of my treatments give to people with a Cancer diagnosis similar to mine. My Cancer had spread to my lymph nodes and I think this is why Tamoxifen makes a 30% difference to my chance of recurrence. I never really saw that I had a choice so just set about doing what I could to help my body cope with the medication. I did swap brands of Tamoxifen late last year (because the chemist was out of my usual one) and found that I had worse side effects (aches and pains and very emotional), so quickly swapped back to my original one. We are all different and just as there can be big differences in how we react to chemo etc, I think there can be differences with the hormone therapy too. I truly believe that a healthy lifestyle can help though. :)

Tamoxifen - doubts??? | BCNA Online Network

22 Replies

JessicaV
Member
11 years ago
Dear Sarah, I am sorry that when we first met on this board a year ago, I was not in a position to give you the friendship and support you sought. We were both in the same State, both starting chemo and I posted to express my sympathy and caring for your situation, and you private-messaged me.

As I said then, it was kind of you to offer to drive hundreds of kilometers to take me to my chemo sessions each 3 weeks, and to chat day or night,.But I have a wonderful daughter who was driving me to appointments and was the person I needed to be with and while you needed a reciprocal relationship with someone, I was not able to be that person..

I tried to explain this gently, I did not intend to hurt you but as you can see on this thread, sometimes I am a bad communicator, I do wish you well, and hope one day you will find it in your heart to forgive me for hurting you by not being your special friend through this difficult time. And will let go of your bitterness towards me.

best wishes

Jessica
JessicaV
Member
11 years ago
Hi Donna and Sue, thanks for your positive posts, and thank you for understanding that I am not telling anyone what to do, except to get the facts about their personal risk levels, and to discuss these things with their own team of medical advisors. And to really think about the choices they make. Things that both of you and many others have done anyway.

I do not take Tamoxifen, because I am ER- so my surgeon said it is no use to me. Being ER- is a mixed blessing because ER+ would meant I had less chance of recurrence, so long as I took Tamoxifen. But my cancer is what it is.

And it is tough being in this club, all of us having to make tough choices, some of which we may regret later (like for me neoadjuvant chemo was a choice offered, but which my surgeon said would not change anything (except the size of tumor they would be removing) and would not reduce my chances of recurrence, but later I heard how it can shrink the tumor to nothing before surgery, which sounds like a good choice).

As you say Sue, all of us with breast cancer currently have to live with a frightening increase in our chance of dying younger than we want. There are no guarantees. The facts are hard to take but without them we are in the dark. For myself, I think the biggest struggle is to face the facts so I can manage my treatment/ongoing healthcare wisely but put them aside enought to still live well and to the full.

Jessica.
mgndam1603
Member
11 years ago
What a hot bed of discussion this is and open discussion is good isn't it, if it is framed the right way of course.

I agree with Sue we can not impose our will onto others and I do hope that no-one has had that intention. Sometimes when writing responses we do not realise that its not like talking, the intonations etc do ot come across and it can seem harsher than we intend.

As I stated in my earlier response I have found this conversation interesting becasue I have changed meds, will do so again and had mine extended to 10 years. I am very interested in what others have found in research and found through experience.

Have a lovely day ladies.

Donna
Janet_Plummer
Member
11 years ago
Ah that would be me that said adopting a healthy lifestyle helps you tolerate tamoxifen better. Perhaps I didn't express this precisely enough. I just meant to say that it helps me. When I let my exercise slip I feel older and my mucles stiffen up, when I drink alcohol my hot flushes become more intense and frequent, when I overeat I gain weight (and get depressed). Simple and basic stuff I know but paying close attention to these things, I believe, helps me avoid these problems - whether they are tamoxifen induced or just due to getting older. I certainly didn't mean to make anyone feel guitly. As I think I also said in my post suzie, we are all different and can react differently to the medication. The only way for Lynn to know how she will react is to give it a try.
JessicaV
Member
11 years ago
Hi Suzy, if you had a friend who asked you to make sure people were aware of the implications of their choices because she did not, perhaps you too would think it important to speak out as askedfor her sake and her kids' sake, to just put the story and facts out there, It is about all I can do for her now, so I did it. If you don't want to read it, please feel free not to.

I totally support your right to make your own choice on this I totally agree that you are intelligent and capable of making a good decision. I did not say otherwise. Sorry if it sounds like I am on a soapbox. I just really care that this does not happen to others because they are unaware of the possibilities, not you but others who read this link and like so many including my friend, go off treatment because nobody ever actually said what the implications can be. I am devastated this has happened to her.
suzieq
Member
11 years ago
Those standing on their Soapbox on this subject are simply not being helpful. There is no crystal ball when it comes to cancer and as far as I know no-one here has a direct link to GOD.

We mostly all know how to research medical journals and quote statistics. Most of us are fairly intelligent women. Most of us have had our talk with our Oncologist who are the ONLY people to seek advice from on this subject. By all means tell us about your experience with these drugs as it helps us all understand how people react differently to these drugs. I can't remember who made the comment that living a healthy life, eating healthy food etc enables you to tolerate these drugs etc but please - that is simply not true. Talk about inflicting guilt trips!

Most of us know friends who have mastastic cancer both on and off these drugs. We are all different with our own physiology and we all react differently to drugs, especially these types of drugs. Some bodies reject them outright. Many women suffer greater than others so please don't judge women who, after careful consideration, opt for quality of life and the statistics that support survival through happiness and contentment. If you want to quote statistics 50% of women who begin therapy simply do not finish. If your system will tolerate these drugs then be happy about that. But please don't try and make those of us unable to tolerate them unecessarily frightened! It's not a sorority.
suzieq
Member
11 years ago
Those standing on their Soapbox on this subject are simply not being helpful. There is no crystal ball when it comes to cancer and as far as I know no-one here has a direct link to GOD.

We mostly all know how to research medical journals and quote statistics. Most of us are fairly intelligent women. Most of us have had our talk with our Oncologist who are the ONLY people to seek advice from on this subject. By all means tell us about your experience with these drugs as it helps us all understand how people react differently to these drugs. I can't remember who made the comment that living a healthy life, eating healthy food etc enables you to tolerate these drugs etc but please - that is simply not true. Talk about inflicting guilt trips!

Most of us know friends who have mastastic cancer both on and off these drugs. We are all different with our own physiology and we all react differently to drugs, especially these types of drugs. Some bodies reject them outright. Many women suffer greater than others so please don't judge women who, after careful consideration, opt for quality of life and the statistics that support survival through happiness and contentment. If you want to quote statistics 50% of women who begin therapy simply do not finish. If your system will tolerate these drugs then be happy about that. But please don't try and make those of us unable to tolerate them unecessarily frightened! It's not a sorority.
mona63
Member
11 years ago
Hello my background is bc infilit duct grade 2 20mm with one lymph node .8 mm dr positive, or positive her2 neg. treatment lumpectomy, radiation and now on tamoxafen. I didn't really question tamoxafen as my oncologist said that and surgery were the two biggest interventions for me. I didn't read the side effect profile as I thought I don't want to be influenced! I did have initial side effects which resolved : seem to remember especially after eating curry and drinking coffee: neither of which I was going to give up. I do try to balance benefit and 'cost' but encourage a questioning : I only commenced tamoxifen a good month after radiation stopped : in part to commence when I had recovered from one treatment before another . I do feel a bit less dynamic and the absence of libido! And liked how oncologist raised idea of 6 week tamoxafen holiday: and also talked about balancing out fear oriented part of discussion by saying if your cancer is going to come back in 6 weeks then ...? I'm not ready to take a 6 week tamoxafen holiday but good to know somewhere before refusal there are some other strategies. I did forget it in the last week and had a little panic about what I should do can I take two in one day before realising i was coming from fear and just stopped. I read in the paper awhile ago that luck seems to be behind most of us getting cNcer and I found that comforting in a way and seems to balance out that despite all of our interventions there are no guarantees !
mgndam1603
Member
11 years ago
I have read this post with much interest. I started in Arimidex and then moved to tamoxifin due to side effects. Like the other ladies I started with hot flushes, aches, emotional issues, fatigue and sleeplessness and the dreaded cramps. I am 12 months down the line and I still have the cramps, I take magnesium for this and only get occassional breakthrough, my sleeplessness is still there but not as bad and I haved some body aches. These things are controlable.

My onc has told me I will be on hormone suppressants for 10 years not 5 I did question this and like Deanne my chances of reoccurance is reduced enough for me to go with her recommendation.

Cancer likes my body and its a tenent I do not want, along with BC I also had renal cancer so for me it was a no brainer. But I feel its good to research, be informed and make the decision that is best for you.

Good luck with your chioices

Donna
lynnexcel
Member
11 years ago
Thanks Deanne

Yes I have since spoken to a breast care nurse and she was wonderful and has sent me information to read on the benefits of the drug and also I am going to speak to my oncologist and find out my statistics on prevention for me versus the side effects.

I am sure I will start the medication but I need to be informed because if I have an awful quality of life of them I want to come off them but with a lot of education under my belt to allow me to make this decision.

You sound very positive and seem to be living life to the full - good on you :-)

Thanks for your input

Lynn x