Midge - Tamoxifen is only given for 5 years because it has been found to be ineffective after 5 years. In fact it can start to feed cancers after prolonged use.
Studies have shown that Tamoxifen continues to provide protection for many years after you have taken it.
However some women don’t metabolise Tasmoxifen as well as others. In the US they run preliminary enzyme tests to see if women will metabolise it well or not. If you are a poor metaboliser of Tamoxifen (approx 10% of women) then you won’t get as much benefit from it as others who metabolise it well.
General guidance now is to move on to AIs following a couple of years on Tamoxifen anyway.
Hormone therapies are just as effective in destroying cancer cells as chemotherapy - in some cases more effective. I think that people always equate cancer with chemo and believe that anything less than chemo is undertreatment. In my case (100% ER+) I was getting 3 times as much risk reduction from Arimidex than I was from chemotherapy.
Calmlife - Grade 1 cancers, because they are slow dividing, tend not to respond as well to chemo as grade 3s. That is worth chatting to onc about and bearing in mind when weighing up benefits and risks of chemo.
I only managed 4 doses of chemo before onc stopped it - it was killing me. It really isn’t “doable” for everyone.
Try not to be scared - your prognosis is very good and your cancer is curable.
Calmlife - huge hugs love, as msmolly said stage 1 has an excellent prognosis, my onc told me after my op, your bc has been removed if and you have no need for chemo (absolutely no mention of micro mets), speak to your onc/bcn ASAP, get their opinion on your prognosis etc…
Midge, in answer to your question, both Tamoxifen and Aromatase Inhibitors such as Letrozole work by depriving oestrogen receptive cancer cells of the oestrogen they need to grow. Neither Tamoxifen or AI’s actually destroy cancer cells.
Advocates of endocrine therapy suggest that it does destroy cancer cells by starving them to death, but sadly that is untrue. The reality is cancer cells simply adapt to the lack of oestrogen, and change their receptors. So if someone has oestrogen receptive micro-mets floating round in the blood, endocrine therapy will deprive the cancer of the oestrogen it needs to grow. But when endocrine therapy stops, or the cancer adapts, the cancer will return.
The reason that chemo is not given to everyone diagnosed with breast cancer is because there is no way of knowing whether a patient has micro-mets in the blood, and it would be unethical to subject all patients to potentially harmful treatment without good cause - so doctors rightly only offer chemo where thre are sound reasons to do so.
Thanks for the response. Why do some women with secondary cancer have their tumours shrink on hormone therapy if cancer cells are not destroyed?
So women who do not go on to develop secondary cancer after tamoxifen is finished didn’t need it in the first place? The op had cleared their cancer and they had no micromets. All tamox does is buy people with micro mets ( who did not ave Chemo, or if they did it didn’t work) five more years? Am just trying to understand this a little more, because up to now I though tamox was a really powerful tool to prevent long term recurrence, but this sounds a lot less long term and would definitely make me more like to advocate Chemo on borderline cases. As I said an not er+ but a lot of my friends are and I am pretty sure they id not know this.
This thread is now getting very confusing… Calmlife, as it’s your thread I suggest you give the Helpline a ring tomorrow (are they open on Bank Holidays?) to clear up the confusion about what, precisely, Tamoxifen does. I think there’s also a BCC leaflet about it, and information also on the Macmillan website. But be careful of googling, there’s quite a bit of nonsense out there that could just add to the confusion.
I think chociemuffin is right.How Tamoxifen works is a bit confusing and the helpline will be able to explain better.
It is given to some patients to reduce the size of tumour or if a patient can’t have surgery or rads,I don’t really understand how this works but it does.
Here’s a leaflet about hormone therapy if your interested.
Hi Midge. You have raised quite an important point, because when people use phrases like ‘endocrine therapy stops cancer coming back’ it can be very confusing.
If someone has had early stage oestrogen receptive breast cancer, doctors take the view that it is wise to give endocrine therapy to guard against a new development. So yes, endocrine therapy does help prevent cancer ‘coming back’, but it does so by reducing the likelihood of a new occurrence - not by destroying cancer that is already there. It is very misleading when people say endocrine therapy helps stop cancer ‘coming back’ in relation to cancer that is already in the system, because cancer cells that are already in the system, can’t be described as coming back. It is also misleading to speak in terms of endocrine therapy “destroying cancer cells”, because endocrine therapy does not destroy cancer cells, it simply starves them. If someone has stage 3 BC, medics usually recommend a course of chemotherapy, because chemo is the only thing that has any chance of destroying cancer cells in the blood. If someone has stage 4 metastatic cancer doctors either recommend a course of chemotherapy (particularly if a patient is oligometastatic), to try and destroy cancer cells, or use endocrine therapy to try and halt progression. Yes endocrine therapy can/does shrink tumours by starving them, but it does not destroy cancer - only chemo has any chance of doing that.
Clearly in Sarah’s case her Oncologist believes there is an advantage in her having chemotherapy - and I think they probably know best. Obviously, there is the argument that chemo does not destroy all cancer cells, but what is the alternative?. What is certain is that if she has micro-mets in the blood, and relies on endocrine therapy alone, the cancer will eventually progress.
Endocrine therapy is a very powerful tool in the treatment of oestrogen receptive BC
Lemon grove, thank you again, that information is certainly new to me and I have been around this forum for over a year now. In the decision as to whether to have Chemo or not, which was the original title of this thread, I think the way tamox works is crucial. If you are in the slightest doubt as to whether to have Chemo or not it would certainly be an influencing factor.
Calmlife, I hope this has not confused you, but perhaps armed you with a few more questions for your oncologist or BCN. I am certainly going to question my onc further.
Thank you to everyone who has commented on this thread.
Firstly I will be checking the action of tamoxifen. I’m also under the impression that it does not kill cancer cells, but starves them of what they feed upon (estrogen).
One thing I will point out, however, is that someone said that if I have micro mets in my blood then the disease WILL progress. Just one point for accuracy is that after looking up Micromets information, it seems to say that sometimes, you can have them in the blood and you never develop a secondary tumour. The reason they give is that if you have say 1000 micro mets, sometimes your body is successful at destroying them because white blood cells are able to destroy them, additionally they don’t find a suitable place to multiply.
However, I am aware that if there are micromets in my blood, the best solution for killing them is chemo. Its the big question - has it gone into my blood? They are telling me that statistically, 97% of women in my situation do NOT have them in their blood (based on the statistic that 3% are benefitted from chemo).
Its a lot to think about and I hope this thread has helped other people. Still not got the oncologist appointment and of course I will update with details once I have seen him.
What is arimidex? I have never heard of it and you suggest that it was killing cancer cells.
I really appreciate everyone’s loving messages and help. We all have to make decisions based on lots of factors.
For me, of course I want to live! However I do also know that statistics are not always the be-all-and-end-all and that cancer is about INDIVIDUALS. I’m presently studying for a psychology degree and honestly *individual differences* comes up so much in scientific study, whether its about the function of cells (neurons) within the brain or whether its about behaviour and family circumstances.
I guess what I’m saying is that the stats show that 3% of women in my situation (same age, same cancer grade and size) who chooose NOT to have chemo will die and the stats show that this is related to them not having chemo. However, I’m aware and so are many others, that everyone has different lifestyle and choices, stress levels etc. Now if I was the angelic buddha vegan yoga master (ha ha kidding, just an example) I’m not saying my cancer would not return. It still might. However what I’m saying is that some people who are counted in the stats are those people who possibly have other problems (even other physical diseases and therefore they are taking other drugs). I’m told that 8% of women are suffering domestic violence. How does that sort of thing impact on healing / immune system?
I’m presently looking at diet / herbal supplements / health in general. I’m also calmer than I’ve ever been in my life. I’m doing meditation and affirmations and everything that makes me feel good. I know its not for everyone, but these things are helping me. Does this mean I’ll be in the 3% ? I don’t know but I really think that the way someone looks after themselves MUST have an influence on long term prognosis.
A medical friend I have who works in the NHS says that its generally accepted that those with a good positive outlook and who are proactive about their own health are generally better for prognosis. Again, that doesn’t apply every time, but in general.
Just my thoughts as they are happening right now for me as I’m faced with this decision. I must add, if the cancer had shown signs of spread this would be a no brainer - I’d have accepted the chemo. At this stage I’m still debating and of course a big part of it is what the oncologist says.
I think yo take a really good perspective on the stats. I’m 18 months post dx and this topic comes up periodically. It really interests me that the general advice is ‘throw everything at this terrible disease, etc,etc’, meaning every possible drug.
However when anything remotely alternative or lifestyle related comes up there is a very different attitude. There are women who will take every drug possible but continue to drink, not make diet changes, not be even remotely interested in mediation or yoga or affirmation type exercises because it is not medically proven. What is interesting is that lifestyle factors are never taking into consideration on the stats. And even if studies compares vegan, there are still a lot of unhealthy soya-loving vegans, who would skew vegan survival rates.
Also, I believe there is a very "Daily Mail’ scaremonger approach to stats. In today’s day and age, we want to live in a risk-free society, especially noticeable with attitudes to child protection, and the average person has little ability to assess risk based on stats. I seriously considered not having chemo, but I think I had about an 8% survival improvement so went with it. 3% is a very different stat.
Use cancer as an reason to put yourself first and to really look after yourself and enjoy the little thing in life.
Call me daft of you like, but they can do what they like to me. If removing my feet would fix it, then so be it. They went to med school etc, and I went to Google. I think they know what they’re doing :o) x
Thanks Gretchen. There is scientific evidence that stress will have a negative effect on health and healing and that those who are calmer therefore have a better chance of healing and a stronger immune system.
As for the last comment, I know they are more qualified than me. They are offering me the choice. They are NOT telling me I should have chemo, they are saying the only thing they can say which is “statistically we have worked out that there is approximately a 3% better survival rate over 15 years, not taking into account lifestyle factors”.
If they are offering me a decision, then I will make a decision. As I make that decision I have to consider everything, including my own situation and lifestyle choices.
Calmlife - “the way someone looks after themselves MUST have an influence on long term prognosis.”
You’d think so wouldn’t you?
And it is comforting to believe that if you get some control over this thing with diet etc then you will stand a better chance than others. I am afraid that the “fit and healthy fends off cancer” argument failed for me years ago. If it were in any way true I (yoga practising vegan) wouldn’t have got it - nor would many very fit young women I know who have died of cancer.
In September of last year we buried a dear friend. She was a phenomenal athlete and 48 years old. Slim, super fit, very outdoorsy woman - did Race for Life in an amazingly fast time with liver mets and no training. She survived for only 2.5 years after diagnosis.
My great uncle - wine swilling, fag puffing, red meat gorging, obese has survived cancer twice in his 30s and 40s and is now 92.
The wisest thing anyone said to me when I was first diagnosed was “Cancer doesn’t read self help guides or obey statistics”.
Before you subscribe to any “complementary” stuff please read Ben Goldacre’s brilliant Bad Science book. I personally think it should be compulsory reading for anyone with a cancer diagnosis. It may put some of these total charlatans that have turned cancer into an industry out of business.
Oh and in answer to your question - Arimidex(anastrazole) is an Aromtase Inhibitor - it is a type of hormone therapy which works in a different way to Tamoxifen. It is for use by post-menopausal women however pre-menopausal women can take it if they have their ovaries removed or are pushed into a state of chemical menopause with Zoladex injections.
All hormone therapies can kill cancer cells - apoptosis is caused by oestrogen deprivation. Tumours shrink in size BECAUSE cells suffer apoptosis (die). Hormone therapy can be used as pre-adjuvant treatment to shrink tumours prior to surgery and has been known to obliterate tumours completely.
If Tamoxifen is capable of taking centimetres off a tumour, by obliterating 100s of 1000s of cancer cells that have established themselves with their own blood supply - then of course it is capable of causing the death of circulating isolated tumour cells.
Of course there are many people who do not follow the stats, etc. Very healthy people who die of cancer, very unhealthy people who beat the odds. Who is to say your uncle would never have had any illness if he had not been so unhealthy and your healthy friend may have died sooner without being so healthy.
There are very many people who take every drug going and still die. Nothing in life is a sure thing and risk is inherent in every single choice we make in life. Calmlife is looking at her options, assessing risk and making a decision. Choosing healthy, calm lifestyle is a factor in her long term survival, weather is makes a tiny difference or huge difference is indefinable but to say that we have NO control over our quality of life and survival is clearly not true.
My pont was that if women truly wanted to ‘throw everything at this disease’, then we would all be adopting lifestyle changes. The oncs are highly trained in drug administration and reading survival stats on how to administer drugs, very few have any training on the other factors that could influence survival. Ben Goldacre’s book is fascinating, is shows up quackery, but also shows up the corruption in the drug industry - did you not read those chapters?
I had a lump grow whilst on FEC chemo, but I am not on here telling women not to have FEC, because based on my entire sample size of 1, FEC is 100% ineffective. Your proof that being a yoga vegan is 100% useless in cancer prevention is based on a sample size of one also.
Hi All,
Well said elttiks & msmolly , personaly for me i would take the tried and tested/proven everytime before ever putting my faith into any ALT methods.
Lifestyle changes are great ,keeping to am optimun weight,eating a good balanced diet with plenty of vegs ect,keeping Alcohol to a minimin (or cutting it out altogether), plenty of exercise and keeping as fit as possible will all help in reducing risk but… lets be serious too, no amount of lifestyle changes can ever “cure cancer” thats just online “dubious” cancer websites twaddle namely health beliefs and pseudoscience and has absolutely no clinical evidence whatsoever of halting/cureing cancer.
Its very difficult when trying to make decisions about Chemo or any other Cancer treatments offered,and i guess its even more difficult when we are given a choice as to whether to have a treatment or not, 3% isnt huge so it must be a realy tough decision, but i think it if were me i would ask myself how i would feel if i was in that 3% that stopped my cancer from recurring, also if i refused a treatment would i regret my decision ?
Its a personal decision at the end of the day,and all of us will feel differently about "Risks vrs Benifit"but PLEASE dont rely on any dubious unproven methods in keeping cancer at bay because as elttiks has said above the Medical Profession/Cancer Research ect know far more about cancer and how to treat it than any of us cancer patients here ever will, who at the end of the day (with respect to everyone) our only degrees in cancer prevention/cures come from the university of Google!
Cancer is unpredictable, even for those of us with an exelent prognosis sometimes, but of course at the same time none of us know which side of the stats we will fall , however ,what is well known is the best shot at “treating/cureing” a cancer is the first one.
Good luck with your decisions,im very glad i didnt have to make that choice as was just told from the start i needed to have chemo.
All the best ,im sure whatever decision you make it will be the right one for you.
Linda
Gretchen - yes I have read all of Goldacre’s superb book. And pretty much everything else he has written and broadcast about.
Regarding my friend - 2.5 years is a very short time from diagnosis to death. Her prognosis was 7 - 8 years. Her fitness did nothing whatsoever to prolong her life.
I have a publican aunt - fat, boozy and hasn’t worked up a sweat since about 1953. She is 24 years on from a serious diagnosis (with lymph involvement)and is doing fine.
Cancer doesn’t play by any rules. I know so many women with very good prognoses who have done the “right” thing and still it comes back and curtails their life.
Those who elect NOT to hurl themselves wholeheartedly into yoga and supplements are not doing anything wrong. Which is often the inference on forums. If people want to smoke, drink and eat lard that is their look out. If people want to jog, become vegans and meditate all day - equally that’s their call.
One path is not superior to another. Lifestyle choices don’t bring a guarantee of survival just as they don’t bring a guarantee of not being diagnosed in the first place (speaking as a super fit vegan who still got cancer.)
If people feel better and empowered pursuing the whole complementary path then good for them. But there are also people who carry on as if nothing had happened and that is THEIR way of keeping sane and handling this disease. And it is equally valid.
From the minute women are diagnosed with this disease they are bombarded with nagging about weight, lifestyle, booze, diet, stress… and all the hookey claims about supplements and dietary choices and blah blah blah. As if coping with cancer and its treatments isn’t bad enough. It seems people tie themselves in knots trying to achieve a state of “goodness” and others feel the pressure to do it too.
I don’t know any other disease where this culture of compulsion exists.
Just want to make a couple more points.
(1) MS Molly, while I don’t want to disagree with you, I want to point out that endocrine therapy does not destroy cancer cells - it starves them. Yes that starvation can lead to shrinkage (and even take tumours off the radar), but not even the manufacturers claim that oestrogen deprivation kills cancer. What scientists do know is that when deprived of oestrogen, cancer learns to adapt. I read an article recently by a researcher (I think at Sloan Kettering in the US), and he said that when they biopsied the secondary tumours of patients who were originally diagnosed with oestrogen receptive BC, they found that two thirds of the secondaries had different receptors to the original primary. Now as these patients all originally had oestrogen receptive BC, they would have had endocrine therapy, this can only mean that their cancers learned to exist without oestrogen. The other point is that the protocol for treating stage 3 oestrogen receptive BC, is to first treat with chemotherapy and radiotherapy, and maintain with endocrine therapy - because only these treatments are capable of destroying micro-mets. If doctors believed that endocrine therapy could destroy micro-mets they would offer that as the first line of defence, because it is so much cheaper than chemo.
(2) Calmlife, you are quite right that micro-mets in the bloodstream do not always progress, but do you want to take the gamble? The thing is you can make your immune system as strong as you like, but if you have micro-mets in the bloodstream, that means the cancer has already got past your immune system, so you would be locking the stable door after the horse has bolted. Unfortunately if you do have micro-mets in the bloodstream, the only thing capable of destroying them is chemo - which is why your Oncologist is offering it to you.