I know that many of you will think that I have completely lost my marbles but I am seriously considering not taking Tomoxifen or Zoladex.
I was diagnosed on 24th December 2007, had WLE and full axillary clearance on 3rd January 2008, commenced chemotheraphy 11th February (FEC x 6 cyles), require more sugery following chemo as surgical edges not clear and then radiotherapy. I had DCIS and invasive ductal carcinoma (4mm grade 2) with 1 out of 16 nodes involved. The path report showed er+ and pr+ Her2 -.
I have read a lot regarding the (at times debiltating) side effects of both the above drugs. The top and bottom of it is that after all the scheduled treatment I just want my life back (please). I have a responsible job working shifts as the midwife co-ordinator of a labour ward and just know that if I have such side effects then this part of my life will be impossible. I am 43 and have unfortunately not been able to have children, work forms a major part of my life and my identity.
I am aware of the risk v benefits of the drugs but place quality of life quite firmly over quantity.
Anybody out there with similar thoughts or feelings? It would be great to hear from you, or in fact, anybody that thinks contrary to me and that I’m a fool!
I am unable to work at present, despite being quite fit through chemo (although have only had one cycle, 2nd cycle delayed this week due to low neutrofils) because of the nature of my work and the high risk of infection. Already I feel that my identity has been ripped away from me - along with my lovely hair!
Has taken me ages to acknowledge my thoughts and declare them on this site as I thought people would really think I am barking mad!
I know several women who get no side effects at all with Tamoxifen. Why not at least try these drugs and see how you get on and then if you do feel that your quality of life is seriously affected you can make the decision to stop taking them.
I don’t know anything about Zoladex sorry. I’m post menopausal and so I take Aromasin. I do get side effects from it - in particular dreadful, uncomfortable embarrassing sweats. But my attitude is that if this drug helps to stop the cancer coming back then I will accept the side effects.
But we’re all different and of course this is your choice.
I’m sorry that you’ve lost your hair. Most of us here understand how horrible that is. I do hope it comes back quickly. Mine started coming back about two thirds of the way through chemo so you may not have all that long to wait.
Hello Janey
I started on Tamoxifen Dec 07 following surgery and rads. I dreaded the side effects but have had so few they are barely worth mentioning, hot flushes that barely raise a sweat itchy legs that goes as quickly as it comes and if I have increased in weight it is because of chocolate not tamoxifen!!
I agree with Anthi, at least try them before you decide as you may regret not having given them a fair go
Best wishes
Hilary
Hi Janey, I don’t think you’re barking mad - this is personal to each of us and so long we are fully informed about any choices they are ours to make. Only thing I would say is that this is not a decision that you have to make yet. By the time you are at the point of deciding you may feel differently. I am maybe burying my own head in the sand but am not able to look any further forward than the next step, so I do admire you for your research and being able to think and plan ahead. I think tamoxifen and friends are waiting down the line for me too.
I can fully understand your feelings about Tamoxifen and Zoladex.
I am 100% ER+ and PR+ (had invasive lobular cancer, mastectomy, extensive LCIS so having another mastectomy in April). Didn’t need chemo or rads - Tamoxifen is my only treatment.
I have suffered from varying forms of depression all my life and have Generalised Anxiety Disorder. My consultant said it was up to me whether I had the Zoladex (I’m 47 - pre-menopausal). Although he wanted to stop my ovaries, he was very concerned that the Zoladex would make my depression worse. I wanted to at least try cos I hate having periods. I had 4 or 5 Zoladex injections but the side-effects were too much for me. I put on weight which made me feel terrible about myself, my joints in my hands and feet were very painful and I would get very depressed with suicidal thoughts. So I stopped and the depression has lifted.
I have also stopped taking Tamoxifen - for a while anyway. The side-effects from that, whilst not as bad as the Zoladex, have made my quality of life take a real dip. It’s a gamble, I know, but I just have to have some ‘time out’ for a while.
BUT, I also agree with what has been said. You might not suffer from any of the side-effects, or only just a few. You can try them and always stop if needs be. Did your consultant/onc say how beneficial these treatments would be for you?
Whatever you decide, it’s your life, and no one else should make those decisions for you. I, for one, totally understand where you’re coming from!
Just a quick one and in no way am I making a suggestion as to what you should do, what an incredible strength of character you are showing taking control like this. I dont think I could be that brave and well done you.
I just wanted to let you know I am 39 pre menopausal no children by choice and also dx 24th Dec 2007. I havent had to have chemo as grade 2 1.8cm and no nodes involved. I am currently in the middle of rads and have been on tamoxifen for 6 weeks and had my first zoladex injection two weeks ago. So far I havent had any side effects. I have heard that it can have a cumulative effect and side effects can build up over time but so far so good. One option I am considering is to have the overies removed to avoid future injections but will cross that one at a later date.
Good luck with everything and hope you get back to work soon and get back on track too. Love Shonagh xx
I am much like shonagh - except dx dec2006 no nodes, WLE, 5 weeks rads and tamoxifen for 5 years. I have now been taking this for 1 year and don’t find it a problem. Yes I have hot flushes - not nice but I can cope with them, sometimes I feel a little down but not sure this is down to the tamoxifen and when I get up in the morning I ache a little but it soon wears off (I am 45). I just see tamoxifen as an insurance policy against recurrance and if anything happens I have done everything I can. To be honest I think that after 5 years I will not want to come off it - just for the reassurance.
Wishing you much luck in whatever decision you make.
Shorty x
I’ve struggled with the Tamoxifen issue for sometime when I started it.
Mine was DCIS, high grade and oestrogen receptive.
When I first started Tam in July last year, I struggled with it. I felt quite poorly for about 4 months, I could of quite easily crawled into a corner and stayed there.
I managed my work - special supports in a primary school - which is quite demanding for me, but I only work mornings, so in the afternoon I could just crash out at home.
The house work went to pot, but it didn’t matter.
I say …4 months…because I changed my brand, from the generic pill that is given to all of us, to Nolvadex D. This was all at the suggestion of my BC nurse and my GP.
From the first two weeks of changing the drug, it was literally like the lights suddenly switching on.
I started to feel fine. I don’t even get hot sweats…eek.
I’m tired, but I think it’s because I am out of condition…no…I don’t think I am, I know I am…
Now, the thing is, whether this happened because of the change of drug, or whether it would have happened anyway, well I don’t know…but…it was on the advice of both my GP and my BC nurse.
Obviously, the choice is - in the end - yours, but now, my neighbour and good friend, took Tamoxifen for ten years and didn’t have one single side effect…
Pause for thought.
hi
i started tamoxifen about ten days ago and haven’t had any side effects. i think there are many people who don’t suffer side effects…
all the best with the decision.
jo
xxx
I had my ovaries removed after the chemo[2 months later] I am 45yrs old. Its similar to having zoladex. I was on tamoxifen,now switched to arimidex.Consider yourself lucky that you are not er/pr negative as these drugs are very effective. I had no major side effetcs. Please dont be afraid of taking them
Thanks to all of you who have commented - all your replies are much appreciated and helpful. I have some time now to contemplate what is ‘best’ for me and wish good luck to you all on your journey.
just to add my tenpence worth! I have been on Tamoxifen since Nov 1st and Zoladex since Jan (I’m 35). I have to admit that personally I have found the side effects of both drugs to be minimal. I was worried before I started them but so far so good!
I wish you well as you make this very difficult decision,
Just wanted to say I felt like you after bi lateral mastectomy, chemo (4 fEC/3 Taxotere) and rads. I felt I had had enough. I am older and was offered Arimidex not Tamoxifen. However, after the chemo turned out to be not as bad as I had anticipated and I felt quite well, I eventually decided to try the Arimidex and if it turned out to be not for me I would give it up. It seems a shame to go through all the treatments and then give up on the last one before you know what it will do. Try it - your side effects may be non-existent or bearable. Mine are. Good luck with your decision.
Hi Janey
Your not on your own, I hate taking pills and reading about some of the possible side effects of Tamoxifen I was concerned about taking it. I’ve been on it for almost 6mths now and I’ve had not obvious side effects. I ache a bit when I get up and wonder if that is the start of something, but it’s more likely to be that I’m overweight and not very fit. My weight has stayed consistent throughout treatment.
I would try it and see, it doesn’t take away your choice to stop.
Good luck with the rest of your treatments and I hope your lovely hair returns soon.
Caz x
Hi
I really thing you should give Tamoxifen a try. Its basically your 5 year insurance policy of nothing returning.
I’ve been on it for about 7 months now and have had no major side effects. Felt a bit nauseous at first and had some blinding headaches but it soon settled.
You’ve gone a head with the chemo and rads so why give up treatment now.
No I don’t think you have lost your marbles nor that you are a fool though I understand why you would think that some might conisder you to be so. Most cancer patients do take all the drugs and treatments they are recommended…indeed the iller patients become the more likely they are to take treatments for even minimal benefits. Choice is an over worked term and I think it can be very hard to go against the ‘choices’ which others in similar situations make.
As things stand you you have been recommended zoldaex and tamoixfen, not as an add on to your existing tretament but as part of your treatment package. (And for some er+ pr+ cancers tamoxifen is more effective as a treatment than the chemo you are currently having) Do you know what the statistitical benefits are thought to be in your case? Will taking these drugs improve your chances of not getting a recurrence and thereby beng ‘cured’…rather than ending up dead of cancer?) by 5% or 10% or more? And what in any case is your chance of getting a recurrence anyway? Knowing these statistics won’t tell you whether YOU will get a recurrence or not but they might focus your thoughts.
What can you live with? Maybe you decline these drugs and the cancer never returns…it becomes a distant memory and you die in old age of something quite unrelated. Or perhaps tamoxifen and zoladex were just the drugs your cancer rneeded to stay in remission and without them you have secondary cancer in 12 months time (not statistically likely probably on your diagnosis but it can happen.) Or the worse of worlds you take the drugs and it comes back anyway (or the final possibility that you take the drugs and it never comes back.)
You talk about your indentity being ripped away from you and I identify with that feeling. I was 54 at my own diagnosis, a career women with no children…I had just got a new job which I had expected to take me through to retirement…with a poor prognosis and the after effects of 10 lots of chemo I got different priorities. It is hard for many of us to return in any case to an old normal, though many of us forge a ‘new normal’.
Being triple negative I had no extra drugs to take once my primary tretament was over…and yes yes yes I am grateful for the two and half years I got of side effect free well time…but my cancer did come back and I’ve been wrestling for a year now with treatment decisions about more and yet more chemotherapy (hence my interest in what you have posted cause I don’t think we talk enough about sometimes taking logical decisions to decline treatment.)
I think the major flaw in your argument so far, pointed out by others, is that you don’t yet know what the side effects will be like on zoladex and tamoxifen, and if I were you (and I’m not) I would try the drugs before making a decision.
I hope that when the time comes you do decide what feels right and best for you…but beware…life after a cancer diagnosis is often different than we expect…with or without hormonal drugs.
Just thought I’d add my experiences, diagnosed in July 06 with LCIS and DCIS in right breast, had lumptectomy, wle followed by bilateral mastectomy in Aug 06, no chemo or rads needed, so only further treatment is 5 years tamoxifen and 2 years zoladex injection. Now 18 months down the line and after reconstruction I feel great, very little side affects from both drugs, in the beginning I did suffer from night sweats, also abit on the tired side, not sure if that’s the drugs or the five operations in just over 12 months. I am now on count down with the zoladex injections 18 down 6 to go. My experience of both drugs has been ok as has alot of other women but I do appreciate not everyone is that fortunate.
I think Jane RA has given very sound food for thought, as you say, and so have the comments by the other girls.
I am with you on so many of your worries/concerns. I was dx in 1999 for the first time, had all the normal treatment followed by Tamoxifen. Sadly, in my case, I developed severe eye damage (which is rare, but a recognised side effect and is not curable). I was therefore taken off Tamoxifen after about 18 months. I had many years with NED and no problems, apart obviously from damaged eye sight, until I developed a local recurrence in 2005. Now, nobody would be able to say whether this would have happened anyway, whether staying on Tamoxifen for the full 5 years would have made a difference etc. I must say that my breast surgeon did not for a minute suggest that the recurrence was ‘my fault’ in any way, which was a great help to my emotional well being. To me, like you, quality of life overides quantity every time, but then I don’t have young kids etc. and am now at a stage where I have had continous ‘breast’ problems since my late 30’s - loads of biopsies, lumpectomies etc. because of calcifications before they finally dx me in 1999. As I have a strong family history, they obviously always reacted on the cautious side. I had to stop chemo early and I am now off Arimidex after 2 1/2 years, because of side effects, and again suggested by my oncologist. I could have insisted on ongoing treatment, but I did make my choice re: quality over quantity, so am now happy with the choices I’ve made - in conjunction with my partner and family.
But , as the others have said, at the end of the day this must be entirely your decision, and obviously you’ve got to be able to cope with any consequences of your decision. Perhaps, once your initial treatment has finished, give Tamoxifen a try for a few months and see how you get on. If you don’t have too many side effefcts - and not everyone does - then you might be glad that you at least have given everything your best shot.
Very best of luck with any choices you make.