Sascha, I had a quick look at the cancer active site and they do sell stuff - they have a shop where they sell Indole 3 Carbinol. They say in their blurb (not in the shop) that it can reduce the need for Tamoxifen, which they say is bad news for Tamoxifen’s profits. And they say they do not claim that any one treatment stops cancer. That looks suspicious to me - firstly, tamoxifen is not expensive, secondly they sell the Indole 3 Carbinol themselves, and thirdly they are trying to create the impression that the only thing they care about is our health.
I might be mistaken because it was only a quick look, but I don’t understand how they can be said not to be selling anything if they have a shop.
If you read it carefully you will see it is not their shop, they simple connect you to a reputable source because of all the dodgy sites out there on the internet.
I was not advocating anywhere that anyone stops treatment for cancer!!! In fact I am feeling really attacked simply for trying to help someone who might benefit from Indole 3 Carbinol if they do not take Tamoxifen, which they stated themselves they did not want to do so to my mind I3C is better than doing nothing hormone wise.
I would add that I did not put any emotional pressure on anyone to take it which is somewhat different to the pressure I perceive on here for someone to take it.
For the record I am pro choice and that is it. I am taking the standard hormone treatment myself. But if someone does not want to take it or feels so unhappy taking it what then? I decided to try it and see how I got on, so far so good for me. Many others I know are not so lucky esp with Tamoxifen.
I have done huge amounts of research and discounted a lot of the grot but there ARE effective adjuncts or alternatives out there as I think it is vital to never forget that cancer is mega big business for the drug companies, not just for the cancer drugs but for all the ones that go with it! Each patient on one course of chemo costs a FIVE FIGURE SUM in chemo drug costs you know! Add that up per year PER NUMBER OF CANCER PATIENTS…
I don’t mean to attack you personally, Sascha. As for whether the shop and the site are linked, there seem to be other opinions out there. But it is for everyone to decide for themselves.
I don’t mean to attack you personally, Sascha. As for whether the shop and the site are linked, there seem to be other opinions out there. I have the strong impression they are in this for money, but I could be wrong. But it is for everyone to decide for themselves.
My understanding is Cancer ACtive was created because the founder´s daughter was terminally ill with cancer and outlived her prognosis by many years by taking an integrative approach to her treatment.
I am not upset with you but thanks for saying something!! I jsut think it is odd that people are so suspicious of a small charity instead of the link between the drugs business and doctors and the health service - for me both have their place…but suspicion of doctors and standard drug manufacturers seems taboo!!
Natural substances are not normally clinically tested as there is no funding for it and investment cannot be recouped as you cannot patent natural substances…but there are often numerous rigorous observational studies for some of the so called “alternative” approaches
Back to the point of the side effects of tamoxifen, I was 40 when first diagnosed with grade 3, 1 node, er+. on tamoxifen for 2-3 years, had very heavy bleeding and was on course for hysterectomy.
Then diagnosed with extensive bone and liver secondaries, personally, if I hadn’t taken tamoxifen, I would be blaming myself for my current prognosis and the guilt I would be feeling for my kids would be immense.
Yes it is a choice but tamoxifen is a proven treatment, I was unfortunate it didn’t work for me.
I was on Tamoxifen for 5 years. The side effects I experienced were: very mild hot flashes, (that I the beginning, I mistook with somebody putting the radiators on at home); facial hair, (as banal as it can sound, this was, and still is very distressing for me); itching and, thickening of the lining of the uterus. When I was on my third year of Tamoxifen, I started bleeding again, I was very worried and, I had a hysteroscopy to remove a polyp. The gynaecologist was concerned about the thickening of the uterus although, she said it was normal with women on Tamoxifen. Now, after a prophylactic oophorectomy, I am on Letrozole. My point of view is that all drugs have side effects. I am pro western medicine. I think that the drugs used in conventional medicine, (even if they are involved in financial interest), are better research and, the side effects better known, which in my opinion, easier to control. I think that complementary therapies, and the so-called “natural products” are very misleading. They also have side effects, which are not well research at all, their claims on their benefits health are not well documented and also, they are part of a very profitable industry just as the conventional drugs but, using systems that in my view, are far less transparent in how they conduct their studies, their trials and so on. Regardless than, cicuta is also very natural and is poisonous.
Off course it’s very scary to read about the side effects of the treatments we have to go through. It’s very normal to have doubts and trying to make the best decision for yourself. I think is a very personal decision, some people decided no to take hormone therapy and others do take it. It’s up to you but, as I said, every drug has side effects even the so-called “natural”. Tamoxifen has proven to be a very effective treatment for those with hormone driven cancers, if the “natural” alternatives were so effective as Tamoxifen has been the would have been used as part of the normal protocol and, they would have changed the cancer statistic which they haven’t.
Hi everyone
Im a newbie on here…I was diagnosed with BC in May had lumpectomy and sentinal node biopsy…I am having radiotherapy now and will finish next week.I have been taking Tamoxifen for about 3 weeks and the last couple of days can’t stop crying and feel like I have nothing to look forward to anymore.I am such a positive person normally and think this is the tamoxifen kicking in…I am also dreading putting weight on Oh the joys of this awful C word!!
Kate x
When I started my 5 year course some 8 yrs ago, I reseached a bit and conclused that, putting it very simplistically , hormone positive cancers feed on hormones, tamoxifen attaches to any cells instead and blocks the attachment of these hormones, helping to stop cancers coming back. With that understanding I embraced the Tamoxifen and SEs as being just what I needed. Yes it brought on my menapuase, but I was 48 so not too early, and we all have to go through it sometime! Only serious SE was a nasty polyp in my womb, but all sorted. Hardly noticed when I stopped taking it.
Sadly I seem to be susceptible to cancer, have had Hodgkins lymphoma and now a new IDC I the other breast, hormone negative. Genetic testing awaited. And I wonder if without The Tamoxifen I might have been more unlucky…
Choice is always up to the individidial, and I find that if I can have a positive, simple understanding of why it will work, it helps a lot. Having found out about the hormones I also try to reduce other hormones in my diet.
i’m sure you will come to a decision that you are happy with, feeling positive about ourself is one of the best things we can do!
Hi Ndean, i took tamoxifen for 2.5 yrs before being swirtched to an AI and also had no significant SEs to speak off with this hormone therapy, much like most of the other ladies here its been very do-able for me, please always try and remember that people only post about troublesome SEs with some of the cancer treatments when they personaly are haveing a difficult time of things and that those of us (and i suspect a vast majority of people) have none or few SEs so are off liveing their lives and have no need to post. Id say like the other ladies here in that just give it a go ,and see how you get on , you can always stop taking it or try swirtching brands first if you find it troublesome , but hopefully youll find you will do well on this drug too, Tamox is still classed as the wonder drug for BC since its induction and has no doubt saved many peoples lives, so good luck with it.
Regarding Cancer Active, i just wanted to say that i agree with Zeppa in that personaly i have always had some strong concerns about this site. I think some of the information on their website is quite inaccurate. Some is misleading. Some even possibily dangerously irresponsible. (Sorry Sasha this is not aimed at you ,but is just my own personal opinion)
Ive done a fair bit of research into ALT approaches over the last 5 yrs and whilst i whole heartedildy agree with makeing our own choices in reseraching all the options out there i would only advise people to carefully pick their research scorces carefully ,make sure its backed up clinically ,and dont believe everything you read online unless its from a large reptuable cancer organisation. Natural doesnt always mean natural, and natural doesnt mean no SEs , if something has no SEs then it has nothing in it to work, Likewise once an ALT treatment is proven to work it is no longer called ALT but medicine.
A bit of quick research on Cancer Active and i think the charity may not be quite as squeaky clean as it might seem, am sure Chris Wollams intensions are very good but if you dig a little further on the site he includes a link to his natural selection shop , which sells products from the controversial Joe Mercola . You can find more about cancer active and its busisness links and accounts here amongst others. majikthyse.wordpress.com/2012/04/17/charity-begins-where/
Chris Wollams amongst others i believe is also not a fan of the Cancer Act , which makes it a criminal act to to advertise to treat cancer. legislation.gov.uk/ukpga/Geo6/2-3/13/section/4
Its al about individual choice at the end of the day, and its up to us all individualy to make those choices, i know big pharmaceuieticals make huge amounts of money out of people wiith cancer thats a fact, BUT likewise ALT is Big busisness too and it may be a surprise to most people that ALT makes as much money in a yr as cancer research does!
Good Luck Ndean with giveing the Tamoxifen a go, am sure you will do fine pet.
Best Wishes everyone,
Linda
I think it is important to feel happy enough with your treatment choices as if you are really against something then you will probably develop all kinds of symptoms as a reverse sort of placebo effect. I am interested to know whjy the original psoter is so vehemently against Tamoxifen…I never liked the idea of hormone treatments but decided they made sense for me and my cancer and future so decided to take them and work with them, only thiong I am struggling with is hot flushes on Letrozole but that is all and I did not have any on menopause as I had so much oestrogen floating around!! So in a funny way they are comforting as it meanss the hormone blocking effect is doing their job.
But I think you do need to be happy enough with it to take it at first and if not find out why or find an alternative, that may or may not be as effective but is better than nothing (Indole 3 Carbinol haas ben shjown to block hormone receptors in the same way as Tamoxifen but this has not been validated in clinical trials only in research and observational studies)
Oh the joys of this awful C word!!
