Did anyone with recurrence or secondaries take supplements?

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I have taken vitamin supplements for a number of years. I was diagnosed with bc last August. I have been trying to find out whether it is a good or bad idea to take supplements in future, in particular, antioxidants, and the little research there is seems to give very mixed results, so I thought I would ask you ladies.

Having started radiotherapy in December and being given no advice by my oncologist, I read that it was a bad idea to take antioxidants during treatment, so I stopped after the first week. It is now 3 weeks since I finished rads and I was about to restart the vitamins but I began to wonder whether I should. Hence, my question. Did any of you have a recurrence/secondaries whilst taking vitamin supplements? Do any of you think they have helped to prevent either? Did you take them before initial diagnosis?

We all want to do the best we can to ensure our future good health but the medics do not seem to know what that is.

Thank you for your help.

Ann x

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I don’t have a recurrence or secondaries so maybe I’m not the best person to answer you, BUT I am taking supplements to try & prevent this happening. While I had rads I took Co-enzyme Q10 to boost my energy. Once I had finished all treatment in September 08 I started taking Vitamin D3 and Turmeric tablets. I also think Green Tea is very good for you but as I can’t stand the taste of drinking it, I take that in tablet form too. My tumour was not hormone reactive so I can’t take Tamoxifen etc, so I’m trying to do something to help myself. (Vitamin D3 because lots of breast cancer patients have very low levels of Vitamin D - & I never sit in what little sun we have in this Country. Turmeric because there is research to show it helps prevent cancerous cells forming.)

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Hi everyone, interesting thread, im glad i found it! Since finishing chemo/mastectomy i have been drinking sencha green tea, to try and ward off them cancer cells. I will be shopping for some tumeric and vit D also now, thanks for the advice.
take care
anna

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Dear Ann 04, The Bristol Cancer Centre will give you their up to date advice on supplements. I’ve been taking them since my dx in Nov. 08. Also Chris Woolhams book the rainbow diet gives advice on a whole array of supplements and food to help boost immune system.
Best wishes
Leadie

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I have read what both the supporters and opponents of supplements say and if you start looking at actual research, there seems to be conflicting evidence about whether they do harm or good to someone who has already had bc, which is very worrying. For example, this article from Cancer Research:-

scienceblog.cancerresearchuk.org/2009/10/02/antioxidants-and-cancer-%E2%80%93-the-plot-thickens/

I am truly confused. As I say, this is why I am asking my question - to find evidence for myself and anyone else interested.

How many people on here have had recurrence or secondaries when taking supplements and how many have not?

I know it will just be a small, unscientific sample, but helpful nevertheless. Thanks.

Ann x

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This article is typical of the ones I found and only add to the confusion:-

well.blogs.nytimes.com/2008/02/06/despite-risks-vitamins-popular-with-cancer-patients/

They all seem to say that more research is needed, but I don’t know whether it is being done.

Any thoughts in your own cases, ladies?

Ann x

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I had a reccurence after 18 years, I took fish oil, garlic, folic acidand long the way tried a load of expensive vitamins. I swam 3 to 4 times a week. Now I just think what the hell !everything in moderation, perhaps one day they will find the answer but Idont think its that easy just to take vitamins. I took the belief that if you kept yourself strong and exercised then you would fight it better if it did come backand you would feel better as well. best wishes suzan

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I was very well before my diagnosis which I had in my early 40’s. I was slim (then) and active and never had colds etc even when everyone else in the workplace did. I had taken Manuka honey daily for many years and I still do on my chemo free week. I take no other vitamins and still feel well 6 years after my cancer diagnosis which was stage 4 from the very beginning, bone mets. I’ve now had many years of no active cancer but I’ve been on continuous treatments to keep it this way. Tamoxifen and Arimidex at first and I’m now on my first ever chemo. Since my initial diagnosis I have truly not had one day in bed. My bloods have remained tip top through nearly 2 years now of Capecitabine. So, in my case, I think I’m just, for want of a better word, lucky to have responded so well to treatment.
One of the saddest things I have had to do is bin all the expensive vitamins and supplements a friend had left over after she died of breast cancer. She had been a vegetarian, green tea drinking, juicing, healthy and active young Mum long before her diagnosis.
Just my own thoughts on supplements…interesting thread Ann. x

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Hi belinda my mum always swore by honey and besides that Ilike it where do you get the one you mentioned.many thanks suzan x

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Hi Suzan, the honey I buy (from Waitrose but I think it’s now available in lots of places) is MediBee’s Active UMF 10+ Manuka honey.
I take 3 (laden) teaspoons a day…two in the morning and one in the evening.
x

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before my primary diagnosis i had been slim, fit(marathon runner), healthy eater (all in moderation, but never had a sweet tooth!). i was also breastfeeding on my actual diagnosis march 09 age 33. i was always fit and healthy and took a basic multi-vitamin daily.

since diagnosis i drink green tea and plenty of water. i don’t get bogged down with the supplement issue - i do not believe that supplements will help to prevent my cancer from coming back, but i still eat very healthily and exercise when i can.

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Hello
was diagnosed with recurrence after 12 years, in June 2009. Took multivit and iron but thats all.
take care
monica xx

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Hi Ann

I was diagnosed last year and was advised by my husband’s aunt to start taking vit D. She is a senior oncology nurse who runs clinics in Canada and she contacted the breast care team and discussed with the nurse consultant and oncologist. They always recommend Vit D as apparantly most women with breast cancer have low levels.

I have some research papers to go with this and I will post some time over the weekend so you can see why they suggest this. I don’t understand why we don’t get such advice here in the UK. It seems like everyone steers well clear of any dietary or supplementing advice.

I’ve read the Rainbow diet but I’m a bit unsure about some of its recommendations as regards supplements as I’m not at all sure they are research based.

take care
Elinda x

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Thanks, Elinda. I already take Vit D. It is included in the Calcium tablet that I am taking because I am on Letrozole and I have taken a separate calcium/Vit D supplement for years to help my bones, because my Mum had problems.

It makes me so angry that we do not get any advice. More than that, our medics don’t even ask whether we are taking any supplements which may interfere with our treatment. It was only after my first week of rads, that it dawned on me that the supplements I was taking to help the side effects may be helping the cancer cells to survive and that was when I started researching the subject, especially antioxidants. When I asked the oncologist, she said maybe it would be best not to take them during rads, but I know that if I hadn’t asked, she wouldn’t have told me. As it is, I took them for the first week, in ignorance.

I started taking B vitamins years ago because I was getting stomach upsets and read that stress causes B-vitamin depletion, causing the inability to digest fats. After I started taking a B-vit complex, I had no more problems, although my GP would not agree that this would have helped. Over the years, I included various supplements, such as calcium, each for specific reasons, in the hope that I would be keeping my body healthy. After rads finished, I was going to resume, as it worried me that at such a stressful time I was doing less than normal to help my body, but having researched further, I found such diverse opinions. The medics say it may be a bad idea, but anyone with an interest in nutrition and complementary therapies say it is a good thing.

As you say, there has been so little research done on such an important subject, especially seeing that a huge number of cancer patients take supplements and try to eat very healthy diets, including lots of antioxidants. The studies I came across had contradictory results.

I feel at a loss now and quite depressed about it all. I feel totally powerless, as we all do, and it would have been good to think that I was doing something positive to avoid a recurrence. I suppose it was a kind of comfort blanket.

Now, I am even worried that I shouldn’t drink green tea or strive to include lots of antioxidants in my diet, even natural ones, because some of the researchers feel that antioxidants can help rogue cancer cells survive - although others believe to the contrary.

Sorry to go on about this, but I have hit a wall today and just needed to express my concerns. I would really appreciate your views.

Thanks everyone.

Ann x

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There is this trial on cancer research UK ‘A trial looking at the role of diet, complementary treatment and lifestyle factors, in breast cancer survival’ The name of the trial is ‘DietCompLyf’

Basically you are not going to see much research into this kind of subject as there will not be much money available for funding.

I was diagnosed stage IV from the start and took a few supplements to begin with but soon gave up most things. I have always been a vegetarian (not a particularly health conscious one) and would prefer to get my requirements from my diet. I have however begun taking milk thistle again, but only because I am on no other treatment at present.

Jenny

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Jenny

Thank you for the information on the trial.

Surely, it is in the interests of the NHS to keep as many of us as healthy as possible, for as long as possible, so if something as inexpensive as supplements could help, or if they found they were detrimental, it would cut costs.

I like to eat healthily too, but my point is that I am not sure whether a diet rich in antioxidants is the right thing any more, having read some of the reports.

I used to take Milk Thistle, but don’t now as I feel it may inhibit the Letrozole by clearing it from the liver.

Ann

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Yes, I was on Aromasin until this week, and while that has been proven not to benefit my liver mets, I’ve decided to take milk thistle in the interim, while we decide what to do next. I agree, the jury is still out on the role of antioxidants. Did you see that interesting Horizon prog about anti-ageing this week? Antioxidants did not come out of it very well. Maybe not answering all the questions you have, but possible food for thought.
In an ideal world, yes, the NHS would be funding the kind of research you would like to see. But in the real world, that sort of money simply is not there. (A very good friend of mine is Director of Finance for our local PCT and sometimes I get to hear her side of the story - not great reading…)
Sorry, not hugely constructive comments, I know…

Jenny

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Hi Ann

I totally understand your frustration with all of this.

I have worked in research for the past 10 years (health related but not to do with this subject). Funding is the major issue but not the whole picutre. You need to have large numbers of people to understand the impact of diet and then you have so many variables. Even if you try to eliminate as many as possible for example genetic predisposition you’re still left with things like this person drinks coffee, this person drinks green tea etc.
Then of course if something was found that should be eliminated from the diet it will cause a huge furore particularly if it is a staple and if there is something that should be added it’s unlikely to be anything with a patent.

Where research has been conducted, the World Cancer Research Fund has amalgamated this and put this into a report (Expert Report). I understand that there is going to be a follow up report specifically about breast cancer.
Their site is: dietandcancerreport.org/
Don’t be put off by the fact that you need to give some details - it’s predominantly aimed at professionals so they want to know who wants access, all the information is free and very interesting.

Jenny - that programme on ageing was really interesting. So much seemed to be down to genetics.

I like to do something about my diet as it gives me back some control. There are things we know don’t have nutritional value such as white sugar so eliminating those must do some good - in fact my blood sugar has stabilised since I gave that up.

Although it’s not popular the research does show that alcohol increases risk of breast cancer and recurrance. I’ve given it up except for the odd glass of champagne which is my favourite and that’s been hard but for me not worth the additional risk. I wonder why the doctors don’t mention that as the research is strong - it’s in the report above and well documented elsewhere.

take care everyone
Elinda x

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It´s amazing to me that so many of us ladies are still in the dark over what supplements could be beneficial to our health , and what we ought to stay away from .
I assummed that it was because I am not receiving my treatment in the UK that I´m unaware of these things . Reading this thread though i can see that it´s a problem for you too .
For me , I think I want to feel that I am actually doing something positive for myself , instead of letting everyone else take over my life .
I´m positive that some of these supplements would help , but ignorant to know exactly which ones . As has been stated here , so much of what you read is contradictory . One article will say one thing , then another will say “that´s not right …it should be so and so …”
So many of the ladies writing on these forums have lived healthy , lives .Eating good nutritious food , plenty of oily fish , veg and fruit . Some have taken various supplements for years , I live in southern Spain , sunshine and vitamin D aplenty , yet we have all succumbed . There just is´nt at the moment any answer to why one person , and yet not the other who eats junk food , never excersises and drinks like a fish .
If it were that sort of lifestyle that promots the growth of various cancers , then the next generation is´nt just going to have to worry about diabetes and heart disease ,
Like everyone else I wish that more papers and surveys were done on varous natural supplements , but no pharmacutical company is going to put up the vast sums needed to fund research , because there would be nothing in it for them ,no patents no sole company to produce a natural "miracle " supplement . The only thing that makes money is chemical and manufactured .
So in order to fight another day , we have to go the whole chemical route and hope that the toxins we take will only take out the bad guys .

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Some supplements are contraindicated with certain drugs. Genistein supplement (derived from soy) actively interferes with Tamoxifen.

A great many supposedly wonderful “natural” supplements contain talc as a binding agent.