Hi all, I am new to this site…
dx 26th august with primary BC, WLE and SNB on 15th sept.
Diagnosis grade 2, stage 1 strongly er+,tumour 13mm, nodes clear
Recommended treatment radiotherapy and Tamoxifen for 5 years.
I take lots of supplements which I think really help and am putting a lot of effort into having as healthy diet as possible.
I am very doubtful re. taking Tamoxifen due to reported side effects.
I wanted to know if any of you take a herbal/alternative equivalent to Tamoxifen?
Thanks
Tanya
Personal opinion here, but I think you’d be mad not to take the Tamoxifen in favour of some alternative equivalent. The decrease in risk of the cancer returning if you take the Tamoxifen is so significant.
By all means try alternative or homeopathic remedies to deal with side effects from Tamoxifen, if you get them, but make sure they aren’t contraindicated with the Tamoxifen. Lots of people take Tamoxifen without getting any side effects, or only minimal ones, so don’t assume the worst.
Sarah x
Hi Sarah,
I’d be interested to know where you read those significant statistics on Tamoxifen. There are so many that prove the opposite…
Tanya
x
Hi Tanya,
my oncologist told me the survival percentage increase for women of my age with my results who took tamoxifen as opposed to those who didnt. I have also looked mine up on some of the on line websites that can tell you your survival chances. It took me months before i could bring myself to look at them, and only did so then after my oncologist had already told me the stats, but the on line tools do tell you the percentage increase for hormone therapy. The nhs predict one is easy to use, but there are others. Dont use them if you arent up to seeing what they say though!
Vickie
Hi Vickie,
I’d be interested to know what those websites are…
I’m getting used to having to have a strong stomach in this game!!As all of us do, I’m sure.
I appreciate the input.
Tanya
xx
nhs predict is one. also there is adjuvant on line ( i think thats its name) but i havent used this. Ladies have discussed others too and if you start a thread asking for the names of the sites i’m sure they will post them. Mine was about 5% increased odds by taking tamoxifen, and i am only weakly er positive. I have been on it a month nearly now and, touching lots and lots of wood, not been too bad to date.
Thanks, I will take a look at those. I’m glad you feel well and hope it works for you and you continue to be well.
xx
I will start taking Tamoxifen at the end of the year after my Chemo is ended, what side effects should I expect then? They surely can’t be any worse than the SE’s of chemo.
Karen
Hi onelumportwo
I’m going on what my oncologist told me about the benefits of Tamoxifen for women my age (51) with strongly ER+ breast cancer. I’ve also looked up what info I can from the internet. Adjuvant Online is the software that all the oncologists seem to use, but I don’t think us patients can get at it. There is a website cancermath.net which claims to use the same factors as Adjuvant, so have a look at the Breast Cancer Therapy calculator on that. The NHS predict software I found very simplistic to the point of being almost useless.
I suggest you ask your onc for the figures. The problem I had with my onc was that he quoted statistics at me until my head was spinning, but what I wanted to hear was what it all meant with the benefit of his experience and clinical judgement. I ended up going for a 2nd opinion to get that.
Sarah
I think you have to trust your consultant. I took tamoxifen but it did not help me. I have secondaries so its different to primary. I was then put on Arimidex which seems to be better for me. We are all different. Lots of people take tamoxifen for 5 years, the side effects are not good but that has to be weighed against not taking it.
Hi onelumportwo, I stopped taking Tamoxifen because of bad side effects, if you want to PM me that’s fine
Best wishes
Leadie
A lot of women take tamoxifen without any problems at all. You need to remember that people posting on this site are looking for help and support through their problems, the ones who don’t have problems don’t tend to post.
I have been on tamoxifen for three years now, I get hot flushes which aren’t pleasant, but then chemo put me into an early menopause, so I would probably have the hot flushes wothout the tamoxifen.
There’s no way I wouldn’t take it as I don’t want to die from BC.
You can log onto Adjuvant online, however, it’s probably better to do this together with your consultant to get a full explanation of your situation. You have to understand why you would benefit from taking tamoxifen and your particular gain. My onc showed the statistics to me and explained my risk/statistics/ etc to me.
I later went onto the cancermath site, which I think has easy to understand graphics.
But for me for any decision making my first line of enquiry has been my medical team.
Good Luck. X
Hi Tanya,
I also gave up Tamoxifen due to the SEs, but only after consultation with my onc when he confirmed that it was only going to make 0.66% improvement to my chances of being BC free in 5 years. I think there are a lot of women who may be taking Tamoxifen for very little benefit and that is OK as long as it doesn’t affect their quality of life, but I believe you should understand all of the implications, good and bad, rather than blindly following the standard treatment plan. Question your doctors and get them to confirm that what they’re recommending is appropriate to your particular diagnosis and pathology report.
Before I got that agreement from my onc, I did extensive research and found absolutely no alternative to Tamoxifen for pre-menopausal women. If my onc had told me that it would make a significant difference to me, then I would still be taking it.
A last word of advice - most doctors don’t like having their judgement questioned so be diplomatic 
Fell free to PM me if I can help you if you do decide to question your treatment.
Good luck!
E x
Hi,
Just wanted to say I’ve been taking tamoxefin for nearly 3 months and side effects are minimal.Hot flushes and dry skin,but really not a problem.I know its early days but for me its been very doable.My onc gave me statistics and mine increased by 10 % by taking tamoxefin.I also paid to have a test done to see how efficient my body is at metabolising it.The test showed that tamoxefin is recommended for me,as my genetic makeup is good at metabolising it.Just wanted to to let you know that some of us are lucky enough ,not to have bad se’s.That said,my mum couldn’t take it for long,and had to change to arimidex.Hope everything goes well for you ,whatever decision you make.
Hi ,
I was on Tamoxifen for 2.5 yrs before switching to Aromasin, and had very few SEs with the Tamox, certainly nothing that would have ever made me consider not taking it, most people tolerate Tamoxifen very well and like RoadRunner says we need to remember that most people only post on the forums when they need help and advice with any particular problems they may have ,so we dont very ofen hear of those that are doing fine on a particular drug.
Tamoxifen was developed over thirty years ago. and is still considered the Gold Standard treatment for oe+/pr+ breast cancers, when oestrogen comes into contact with the receptors, it fits into them and activates the cancer cells to divide so that the tumour grows,Tamoxifen fits into the oestrogen receptor but does not activate the cells to divide.
The tamoxifen stays in place and stops oestrogen from reaching the cancer cells so that they either grow more slowly or stop growing altogether. So it lowers the risk of breast cancer coming back (recurring) after treatment. It can also help to reduce the risk of cancer in the other breast by 40%. We also know from all the research that taking tamoxifen greatly improves survival rates of women with oestrogen receptor positive breast cancer.
It is a personal decision as to whether we take or refuse any particular cancer treatment ,so only one that you can make,but my advise would be to have a chat with your onc on the risks/benefits of taking Tamoxifen in your particular situation, oncologists dont perscribe any of the cancer treatments lightly and would not be offering Tamoxifen to you if they didnt think it would be beneficial to you.
I have always asked myself how id feel if i refused a particular cancer treatment and my cancer came back? , for me personaly if i take all the treatments advised i would at least know i did everything i possibly could to help prevent a reocurrence ,but sometimes others feel differently .
The best chance of “beating” BC is the first one, i know there are many ladies on here who are triple neg so dont have the option of another drug to help prevent a reocurrence , so personaly i think we are very lucky to have these treatment options available to us .
Good luck with your decision
All the best to you
Linda x
Cluck - interested to hear there’s a test you can have to see how good your body is at metabolising Tamoxifen. Do you have any more info?
Hi all,
thanks for all your comments and opinions.I guess the key is that although we are all on a similar journey, the roads we take are all different; as are our bodies. I appreciate th input and wish you all good luck.
xx
The test isn’t available on the NHS I found out about it on the BBC news website.I asked my onc about it and paid £450 and his secretary arranged it.
This information was included with the result-
‘individuals can be grouped into 4 catergories according to their ability to metabolise a wide range of drugs,including tamoxefin.These differences arise because of small genetic variations in the cyp2d6 gene,a member of the cyp450 family of enzymes.The test categorises patients into one of four groups:poor,intermediate,extensive,or ultra rapid metabolisers.Patients who are intermediate,extensive,or ultra rapid metabolisers appear to benefit from treatment with tamoxefin.Poor metabolisers may not benefit from tamoxefin treatment and should therefore be considered for alternative endocrine therapy.’
The test is called cyp2d6 genotype testing.
Hi Folks,
Really do think you need to speak to your Breast care team. My mother had Tamox. for five years she had lumpectomy and lymph node sweep. She says it saved her life. It also meant she ended up with lots and lots of side effects some such as joint pain, stiffness and became immobile.
At 41yrs I had I had Stage 3 grade 3 multifocal cancer - had mastectomy, full lymph node sweep, after chemo, op and twenty days rads and been on Herceptin since last Jan I started Tamox. Had incredible joint pain and stiffness, cramps, hot flushes like I had an inferno inside me, panic attacks, blurred vision, mood swings and the weepiness!!! When I asked my oncologist and looked into various websites re: side effects and the actual known benefits …my oncologist confirmed there were no real differences in taking it or not and also said that no real studies which showed for my age41 and pre menopausal HER2+ and hormone related cancer that taking the hormone suppressants would give any added benefit on top of the benefits I was getting from the Herceptin. Most studies showed favourable results for those women who had already had the menopause. He also said there were no guarentees anyway that the cancer would not return dispite taking hormone suppressants and that as I wanted a quailty of life he would support me in not taking them.(still have some joint stiffness and pain even though no longer on any hormone supp but that is also left over from chemo, the time I was on horm supp and the Herceptin). I think sometimes we can be carried on a wave of fright, my view in life is that you could god for bid get knocked down by a bus…I want to be able to feel my legs and walk, be able to have normal relations without all the side effects…each to their own and what is right for their cancer and their emotional self.