67942members
357718posts
cancel
Showing results for 
Search instead for 
Did you mean: 

refusing tamoxifen

Highlighted
Member

Re: refusing tamoxifen

oh Kinden,so sorry too that you are having to go through this too..side effects have been really played down by my docs and nurse -bcn assures me that few people get them. I guess it's just something I'm going to find out. Lots of luck to you xx

Highlighted
Member

Re: refusing tamoxifen

I have read this post with great interest as I am now 40 (just!) and have been on tam since last Oct. Next Tues I am having a D&C as my womb lining is shockingly thick which will tell me if I have endo cancer.
gracet you are the first person I'm aware of who has it caused by tam. What is the treatment? 'Just' a hysterectomy? I'd sign up for that straightaway.
Until reading your post, I had thought that it was almost a theoretical side effect, one that happened to ladies long ago when they kept you on tam forever.
good luck to you gracet, and thanks for posting.
chipper - good luck with your decision

Kinden
x

Highlighted
Member

Re: refusing tamoxifen

hi gracet - am so sorry to hear about the endometrial cancer - hope you are recovering from the op. It must be a dilemma for you - it's so difficult to know what to do for the best.Sending you my very best though
xxchipperxx

Highlighted
Member

Re: refusing tamoxifen

Hi ladies

This debate is very interesting for me. Unfortunately I am one of the very few women who took Tamoxifen and developed Endomtrial cancer. I had a hysterectomy 7 weeks ago. I had already had an oopherectomy 2 years ago. I was on Tam for most of 3 years. In fact for 4 months of that I was on Exemestane but had to go back to Tam as I lost lots of bone density.

Now 3.5 years after diagnosis i am in a real dilemma. I have been advised not to take Tam any more. I already have osteoporosis and painful hands and hip so am wary of aromatase inhibitors. I will probably HAVE to go back on Exemestane and have bisphosphonate injections. On the other hand I may decide not to take anything at all despite being 100 oestrogen positive.

Grace

Highlighted
Member

Re: refusing tamoxifen

thanks Daphne, will take a look.

Highlighted
Member

Re: refusing tamoxifen

Information published by the BBC last year.

http://news.bbc.co.uk/1/hi/health/7708116.stm

Here's some information about drugs (some over the counter) that may reduce the efficacy of Tamoxifen.

http://www.icpv.org.uk/TamoxifenGuide.pdf

None of this information replaces guidance from your own doctors, but can be used in discussion.

Highlighted
Member

Re: refusing tamoxifen

thanks elinda - I will certainly see my gp and discuss this..I could probably have benefitted very much from more CBT long before all this has come up, maybe it's given me an extra kick towards doing it !

Highlighted
Member

Re: refusing tamoxifen

Hi Chipper

That's very honest of you. I don't think of OCD or any mental health problem as being anything to be ashamed of. This is about your life and your quality of life. Having CBT again could be highly beneficial because hopefully it will help to reinforce all that you found helpful in it before. I would urge you not to think of it is as a retrograde step but a very positive, proactive approach on your part.
Also important to remember having cancer and going through all the treatment is major and throws up all sorts of things for most people I would have thought. I booked myself in for telephone counselling as soon as I was diagnosed so that I had a way of coping with it all. I've had 8 sessions (diagnosed in Feb) and they've helped me enormously with coping with the uncertainty.
take care
Elinda x

Highlighted
Member

Re: refusing tamoxifen

elinda - I think I will ask..in the past I've kind of tried to put it behind me,particularly as I did have CBT before and thought to myself, ok,that's sorted - obviously not ! OCD is something I do feel quite ashamed of so that;s why I try to convince myself it's gone away

Highlighted
Member

Re: refusing tamoxifen

Chipper it would seem that you would be in a strong position to ask for CBT again particularly if you have found it helpful in the past. If you can talk to your GP I would explain your situation and concerns and say you need something to help through this life change.

elinda x

Highlighted
Member

Re: refusing tamoxifen

Hi,
glad to hear you still battling through Seda. I sent a pm after our phone call. Not sure if it got to you.
Good luck everyone and sorry to but in
Lily(with her tablet inside :)) x x

Highlighted
Member

Re: refusing tamoxifen

Thank you so much Chipper

Same to all of US

Prayers and welness wishes to each of you..

Seda - xx

Highlighted
Member

Re: refusing tamoxifen

that's great that it's helped you Seda = wishing you lots of luck xxx

Highlighted
Member

Re: refusing tamoxifen

I thank sincerly for this thread..

I had bilateral dx on April, both braest lumpectomy, idc ilc combination, stage2 grade 3, er,per + HER2- and 12 pos nodes on the left side.. not a nice image all together..Will go thtu brca gen test after chemo due to my ashkenazi ancestrors, and if its positive than it will be dble mx, which i dont mind really, its not worst that what i am allready experiencing..

I will finish TAC chemo 24 th of sept. will have rads and starts Tamoxifen..

Though i am trying to stay calm, sometimes i am going thru hell, because i feel that my chances are quite limited...

***But this thread gave me reasurence abt hormone treatment..
I thank once more all the experince and details shared, it gave me
a great strenght.....
And yes i can fight SE, i did with Chemo, so why not with Tam ???

Thank you ALL

Friendly wishes from Istanbul
Seda -xxx

Highlighted
Member

Re: refusing tamoxifen

I think if I do take it,being a ritual driven person I will have a particular time when I do it (I think I'll pick the evening- psychologically I'll be sleeping on it !) thanks for all your encouragement xx

Highlighted
Member

Re: refusing tamoxifen

I don't know if this will work for you Chipper, but I find taking that little pill each day (Arimidex) a very empowering ritual. I take it around about 6pm each night - a very easy time of day to forget - so I have alarms set all over the place to remind me. Whilst it is taking time to adjust my life to fit around how the drug makes me feel, the actual act of taking the pill every day makes me feel more in control.
If you do decide to try Tamoxifen give it a good try - 3 months at least - because SEs often subside and settle.

Highlighted
Member

Re: refusing tamoxifen

thanks sal !
I have been thinking that my ocd is a lot to do with keeping everyone safe (by doing things a certain way I can prevent bad things happening), checking,cleaning,things that require a sort of 'ritual'. I have never worried about things happening to me though,in fact if I am honest (and it's quite hard to admit) I have a bit of a disregard for my own health ( I don't actively do bad things to myself -I eat properly, don't smoke,drink only at w/end and then not too much - am in good shape really) really not sure what that's all about. When I was recalled for another mammo. I was very,very scared, so I must have some fears for my well being,but it's all very muddled.

Highlighted
Member

Re: refusing tamoxifen

Chipper, I loved that clip - excellent. I'm sure you're right about the dx unbalancing you. I think it unbalances all of us in some way and we have to fight to get back on an even keel again. But you sound much more upbeat now and ready to give tamoxifen a try. Go for it girl, we're all here behind you. Just don't stop too suddenly, or we'll all crash into you. lol

Highlighted
Member

Re: refusing tamoxifen

hi chipper I have sent you a private message love suzan

Highlighted
Member

Re: refusing tamoxifen

hi elinda..you're right about anything that causes disruption in my life triggering probs..it strikes me that perhaps this diagnosis has unbalanced me a bit. I have had CBT which is brilliant,the only thing that had an effect on me (I have had years of psychotherapy,including psychoanlysis- I have talked myself silly)
It worked really well in that it has kept me going on a reasonable course ever since. When I was pregnant it came back quite severely but sympathetic GP was great at supporting me and I managed to rally myself. I am in no way as bad as I have been, but I would say I expend a lot of energy worrying,trying to do things the 'right' way - it's crystallised down to a few things which I have to adhere to rigidly otherwise I just find the anxiety too much.
The only complementary things I have tried for anxiety are hypnotherapy and Rescue Remedy - the latter helps because I find the idea of it comforting and it contains brandy 🙂

Highlighted
Member

Re: refusing tamoxifen

Chipper the Youtube clip is brilliant! Made me laugh and I'm not totally against complementary therapies as long as they are supporting conventional treatments.

If you don't have a CPN and didn't find them helpful (not the only one I've heard say that about their CPN) then can you discuss your fears with your GP. Have you looked into the possibility of something like Cognitive Behavioural Therapy (CBT) which they government is throwing more money into now. I don't know what psychological treatments are shown to be most effective for OCD but I'm happy to have a look at NICE guidelines if you think that would be helpful. Do think the issue is the OCD and not the tamoxifan as from what you're saying it sounds like anything that causes disruption in your life would trigger problems for you - is that right?

Elinda x

Highlighted
Member

Re: refusing tamoxifen

LOL! I suppose CPNs are like BCNs ,some goood and some............well not so good!

Highlighted
Member

Re: refusing tamoxifen

I too loved the youtube clip..balancing my chakras as I typ..e. oops type. 🙂
x

Highlighted
Member

Re: refusing tamoxifen

thanks dotchas - I don't have a cpn though - I did when I had my last really bad time with ocd - she was hopeless and would just ask me 'how is your mood' and 'how is your appetite' - I'm being unfair probably but she was sent to see me days after I gave birth and was trying to manage that with ocd !

Highlighted
Member

Re: refusing tamoxifen

Love the clip:),chipper,keep your chin up. You will make a decision and then things will fall into place.You are right to question things and have been given loads of advice to digest.Talk it over with your team ,CPN etc and share your worries.
Love
Dot
x

Highlighted
Member

Re: refusing tamoxifen

arf at homeopathic mouthwash Cathy !!
I promise you all,I am thinking of nothing but this !

Highlighted
Member

Re: refusing tamoxifen

Thanks Chipper for the link to the clip re homeopathy - it is so funny. As a clinician myself, I try to keep a broad mind regarding alternative medicines and therapies and sincerely think they do have a place within a treatment plan. But lets get real here. Cancer is a horrible, deadly disease. The cells are completely out of control and without serious stuff like surgery, tamoxifen, chemo, radiotherapy etc are going to kill. End of. No amount of reiki, homeopathic medicine etc will stop cancer once its developed. Maybe it might have an effect on prevention in some way, but like others have said, without concrete evidence to support the effects, I would think of better ways of spending my money in terms of cancer treatment. On a lighter note, I have just finished an intensive course of treatment with a lady who had severe gum disease. Her teeth were about to fall out and she had several visits of deep scling, I got her to quit smoking and improve brushing. Her results are now good. What did she say? Oh it must have been the homeopathic mouthwash I've been using. Stunning.

Highlighted
Member

Re: refusing tamoxifen

Chipper, life is precious. I am taking Femara at the moment but had quite severe joint pain so the oncologist is changing me onto another tablet which hopefully will have less side-effects but regardless I would be too frightened not to take the hormone therapy. The oncologist and BCN can advise, you aren't on your own. Fight this c**p with all that is offered the thought of it coming back terrifies me.
I realise that having mental health problems is a living nightmare but I am sure if you have good backup from your CPN and GP they can help you through this.
You have had a lot of good advice from some very wise ladies on this thread please take it on board.
X

Highlighted
Member

Re: refusing tamoxifen

Chipper, life is precious. I am taking Femara at the moment but had quite severe joint pain so the oncologist is changing me onto another tablet which hopefully will have less side-effects but regardless I would be too frightened not to take the hormone therapy. The oncologist and BCN can advise, you aren't on your own. Fight this c**p with all that is offered the thought of it coming back terrifies me.
I realise that having mental health problems is a living nightmare but I am sure if you have good backup from your CPN and GP they can help you through this.
You have had a lot of good advice from some very wise ladies on this thread please take it on board.
X

Highlighted
Member

Re: refusing tamoxifen

Chipper - brilliantly funny link and a lighter moment in this very serious thread. My chronic night sweats seem a low price to pay for the added protection tamoxifen will give me.
alex
:)

Highlighted
Member

Re: refusing tamoxifen

thank you lily - I will think carefully, I promise xx

Highlighted
Member

Re: refusing tamoxifen

Hi,
You know I think 5 % is huge and would jump hoops for it. They say there are a million women in the world with breast cancer at present and 5 % of them would be 50,000 of us. Thats a lot of ladies. I know it would not be relevant to all of them but it depends what the 5 % is of. So 5 % of your life so far would be how many years with your family? Lots of us have supposedly 'better chances than others'on dx but we are taking our one small tablet a day just in case. Can I join the group tablet taking please.
Take care and think carefully won't you
Lily x

Highlighted
Member

Re: refusing tamoxifen

juliet - thanks for your response and Belinda too - I can see what you are saying - I am thinking long and hard -I am taking into account everything, including the fact that tamox. will offer me around 5% benefit,which is small - it's still a benefit of course, I know that, but I must weigh up that with the whole ocd thing...I am sure I will try tamox. though

Highlighted
Member

Re: refusing tamoxifen

I was on tamoxifen for 6 over years. Yes I did gain weight, was depressed and did have mood swings BUT my aggressive cancer stayed at bay.That is the key to all of this. We are in danger of throwing the baby out with the bathwater!!

My Mum died a horrifying death at age 30 from breast cancer. I was 34 when I got mine.Tamoxifen has given me extra precious years.I am now 43.
One year after coming off tamoxifen I developed secondaries.

There were times when I hated it, contemplated giving it up etc. However compared to secondary cancer and facing death, it is a doddle!

My friend with secondary bc was given weeks to live. Tamoxifen gave her an extra 18 months of active and productive life.

Think long and hard...i am not a doom monger, just a realist. julie x

Highlighted
Member

Re: refusing tamoxifen

thanks for the link Chipper, made me laugh - my husband aswell actually!, and i use some natural remedies...

katie

x

Highlighted
Member

Re: refusing tamoxifen

Thank you Belinda. It is only just over a year since I was diagnosed - a year on and off of using this forum - and so many women have died already.
I agree with you, it really is trivialised. Partly because it has acquired this image of frilly pink bras on fun runs.
I was 11 years old when the first person I loved died of cancer. The memory of her death is imprinted deep in me. As the years have passed more and more loved ones have had their lives curtailed by this disease. I hear people say that they reject treatments because their quality of life might be impaired by hot flushes and a bit of weight gain and I just think "Have you ANY idea what you are dealing with?" This thing takes no prisoners and once it's back, that's that. Regret won't take it away. You get one chance to make the right decision.
I wish you really well Belinda. Let's hope the next few years brings about the discovery of meds like the antiretrovirus for HIV which at least will hold it indefinitely and at best will cure the b*gger once and for all.

Highlighted
Member

Re: refusing tamoxifen

MsMolly..I wanted to thank you for your honest posts..they echo all the posts I've written lately but I've not been brave enough to push the 'submit' button. Breast cancer is a deadly disease. I was diagnosed in my early 40's with bone mets and breast cancer together.. in 2003. Tamoxifen worked marvellously for 16 months..Arimidex then worked for nearly 3 years..yes I had the more common side effects but heck thanks to those pills I'm still here. I'm now on chemo for the rest of my life. So far chemo has been very do-able. Since my own diagnosis I have met up with so many others who have since died.
We choose, conventional, complementary or no treatment at all, whatever is right for you but I do fear this disease has been trivialised, down played, over the last few years. You only have to read the BCC magazine Vita to see proof of this. And the 80% stat does not refelect the true number of women who die from this disease. I'm in the 80% just because I'm still here more than 5 years down the line. Those of us with secondaries who are er+ are buying extra time thanks to hormonal treatments.

Highlighted
Member

Re: refusing tamoxifen

🙂

Highlighted
Member

Re: refusing tamoxifen

Brilliant Chipper. Absolutely brilliant.

Highlighted
Member

Re: refusing tamoxifen

thanks all again- I cannot resist posting this..no offence to leadie but it is very funny !
(hope the link works)

http://www.youtube.com/watch?v=HMGIbOGu8q0

Highlighted
Member

Re: refusing tamoxifen

Bahons - It should be compulsory reading for anyone diagnosed with a serious illness. Let's flush away the bunkum and maybe we can start focusing on getting a REAL cure for this stinking thing.

I am not opposed to people complementing orthodox medicine - but to advise people to forego it entirely for a bunch of herbs and some humming is just grotesque in my opinion.
I often wonder about people who subscribe so fully to this stuff - where does the opposition to orthodox medicine begin? The anaesthesia used to knock you out while the brilliant medics cut the cancer from your body? Or the antibiotics used to stave off infection? Or the analgesics which kept you pain free? Are these "acceptable" forms of medication - or are you suggesting that we all self-hyptnoise and chew ylang ylang for this part of treatment too?

I read that more money is going to be funnelled away in the NHS for these complementary things. I don't get much out of yoga etc but I do enjoy dinner with friends and the theatre. These things make me feel much better. Would the NHS pay for that instead?

Highlighted
Member

Re: refusing tamoxifen

Chipper

Tamoxifen can have horrible side effects. But not everyone gets them.

Cancer too can have horrible side effects; the best known one is death.

Don't forget that Tamoxifen has one hugely beneficial SE; namely reducing the likelihood of YOUR cancer returning.

No-one is going to force these tablets down your throat every day for the next 5 years or whatever. It is up to you to decide to take them or not. Same little decision, every day.

If you try them and the SEs (after you have given them a while to settle down - some improve over time), if you have any, are terrible, you need to talk again to your oncologist. He might be able to offer you something else, or prescribe something to help with the SEs.

You may feel fine on Tamoxifen - you don't know until you give it a whirl.

And if it does come back, kicking yourself won't be much help.

By all means eat well and exercise - that can only be of benefit. But I urge you not to refuse a major treatment before at least giving it the benefit of the doubt.

(Have just started reading 'Bad Science' by Ben Goldacre.....don't get me started....!)

X to all

S

Highlighted
Member

Re: refusing tamoxifen

I have to say I wish it were that easy to regulate hormones without medication. I suffered for 16 years with severe endometriosis also fuelled by oestrogen and tried lots of complementary things and only conventional medicine worked I'm afraid. There's nothing wrong with trying complementary therapies as well but do bear in mind they can be dangerous too.
A friend of mine went for chinese medicine recently to help her give up smoking and give her energy. She was given tablets and tea and when I asked her what was in them both she had no idea. Personally I'd like to know what I was about to put in my body.

The thing with something like tamoxifen is the pros and cons are well documented.

I am all for improving diet and exercise because that can generally make you feel better.
best wishes Elinda x

Highlighted
Member

Re: refusing tamoxifen

I'd utterly echo what msmolly has said. I happily have complementary medicine to help with some of the side effects of Zoladex (and I think it works), but I'd never use it in place of conventional medicine which has proven benefits. As far as hormone therapy goes, Tamoxifen offers me much more protection than chemotherapy would. And if it doesn't suit you, you can come off it.

I went to a spa in Thailand recently where a 'doctor' tried to tell me that an international conspiracy meant that the amazing cancer-beating qualities of bicarbonate of soda were still largely unknown, although he was happy to enlighten me (presumably at vast cost). He seemed somewhat surprised that I preferred to put my trust in my properly regulated, very knowledgeable medical team rather than him...

Highlighted
Member

Re: refusing tamoxifen

I have heard it all now.
Of course a drug can be a wonder drug in spite of having side effects. Antiretroviral medication has halted the march of HIV in millions of people worldwide - it has unpleasant side effects but it is STILL a miracle drug.

Or maybe all these people really needed was a handful of herbs and a quick meditate.

What rubbish. Herbs and reiki matching the efficacy of Tamoxifen? What are these "many other" ways of fighting cancer? Where are the data to support your claims? There are none. This is dangerous stuff you are preaching.

Tamoxifen carries RISK of certain side effects. Risk means exactly that... risk - it doesn't mean that all side effects are guaranteed. Millions of women on this planet are alive because of Tamoxifen. The majority of them do not get clots, endometrial cancer etc.
The claim that cancer will recur after 5 years in a "more aggressive form" is grossly misleading.
And why on earth is it a bad thing to delay recurrence?

Take the Tamoxifen or don't take it Chipper - it's entirely up to you. But please use proven SCIENCE to guide you. 12,000 die of this disease each year. It used to be double that - but Tamoxifen and the other endocrine therapies have helped halve those numbers over the past 30 years.

Highlighted
Member

Re: refusing tamoxifen

thanks leadie - I admire your conviction - I tend to lean towards the diet and exercise thing myself - I think,forgive me,that homeopathy is a bit suspect. I am generally healthy, could do with more exercise of course,but can deal with that. I am always amazed at how readily people do turn to drugs on a daily basis - I take ibuprofen if I'm really suffering from a headache or period stuff but steer well away from anything else. I am willing to look at all aspects of alternative treatment though because it can only help to inform one better.Thanks for the offer of more info..I may well get back to you. xxchipper

Highlighted
Member

Re: refusing tamoxifen

chipper, There are many other ways of fighting cancer instead of tamoxifen. I don't believe like msmolly that it is a wonder drug. I don't believe that any drug can be a wonder drug as all drugs have side effects. Yes it may keep cancer at bay for a time but after 5 years cancer can reoccur in a much more aggressive form. 37% of women come off the drug because of horrendous side effects and I'm sure there are more that come off it and just don't tell!! Other side effects can be fatal.. blood clots and endometrial cancer. Women have to have hysterctomies because of thickening of the womb lining, increased fibroid activity and oophorectomy because of cysts increasing as a result of the drug.
There are many, many natural ways of regulating your hormones through herbs,homeopathy,shiatsu, exercise, diet, to name but a few.
We all have to make our own decisions about how we face difficulties in life. I would encourage you to research and talk to many other people who choose different ways of tackling disease. trouble is with this web site is there are may polarized views and if you dare to speak out you get shot down in flames!!!
Pleas pm me if you would like more information and support
Best wishes

Highlighted
Member

Re: refusing tamoxifen

thank you rachy - that is interesting to hear (and I'm sorry that you suffer so) I can't really explain my reasons to friends where I live as they don't know about the ocd - friends from where I used to live do,well most of my close friends. I have intimated that there are mental health probs to some people but it's not easy ! Who knows, I might be fine on tamox. but I am afraid of that risk, more so than any cancer recurrence.

Highlighted
Member

Re: refusing tamoxifen

I think I know where you are coming from chipper ! It is very hard to make a decision when you feel your sanity is at stake as well as your life.

R

Highlighted
Member

Re: refusing tamoxifen

I have yet try tamoxifen but arimidex SE were so bad I had to stop it. Severe mood swings and suicidal (suffer depression and mild bi polar anyway. If tamoxifen does the same I will not be on any hormone treatment but I have two terrible choices- bc returning and possible death or such severe mood problems I would be hospitalised at the very least or dead. It is a choice I do not want. Without hormones I can at leat live my life and be normal mood wise. I have a quality of life. On the hormones there is no quality of life. I have always reacted very badly to any hormone manipulation.I would love to be able to take a hormone suppressant to reduce my risk of recurrence but with me the cost is too high (my bc is 100% oestrogen receptive).I have discussed this problem frequently with professionals and support groups etc but very little if no info or solutions have been forth coming. Even changes of my mood meds makes no difference when taking the hormones.

Rachy