Question about supplements oversight & testing?

Rhiannon78
Rhiannon78 Member Posts: 33
edited June 2014 in Alternative Medicine

Hi everyone: 

I was hestitant to post in this forum , since I am fortunate that I am in a situation where no adjuvant treatment is being recommended.  I orginally posted this in the "Complementary Treatments" forum, but didn't get any feedback, so I am hoping that you ladies are more knowledgeable.

I was first diagnosed with DCIS on the right side in late November 2012.  Long story short, I had a lumpectomy on Jan. 3, path reports came back that everything was removed with 9mm margins (most likely during the stereotactic biopsy!), no rads recommended.  For the left side, first path report came back hyperplasia no atypia, then 2nd path report suggested ADH, so my surgeon would like to take that stuff out as well to confirm that nothing worse is lurking. Have not scheduled that procedure yet.

I met with my MO this week, fully anticipating that she would push Tamox on me becasue of both breasts being involved, but to my surprise, what she told me was that 8 out of 10 months she would say not to take it for someone with my diagnosis!  She said in the months where she sees more recurrences with women who did not take Tamox, then she worries!  I am 52, pre-menopausal and no family history. She said I have to decide if I am more worried by the fairly low possibility of recurrence, or more worried about taking a pil that might have unpleasant side-effects.

To begin with, I am not a big believer in supplements in general, as I beleive that getting vitamins, etc is best done through food consumption. That said, I know that it isn't possible to get the higher levels of certain foods through consumption alone once you move from the category of trying to maintain your helath vs. being diagnosed with cancer (or have a pre-cancerous condition). T

hat said, before my diagnosis, I was taking a black cohash/vitex based hormone blancer, Evening Primrose oil (both to manage extreme cyclical breast tenderness) and Omegas. Stopped everything except Omegas becasue I didn't know if they were contraindicated.  I have a very helathy diet overall, am probably a bit underweight if anything-we have a vegetable garden, buy organic for what we don't grow, all meats we consume are organic/pasture-raised, lots of veggies, beans, etc.  I drink a bit of wine and eat some dark chocolate, but not a lot of "white" stuff (e.g. breads, sugar, dairy etc). I juice nearly every morning with carrot, apple, kale, cucumber ginger and tumeric. Based on this, the MO felt that there was not much more that I could do to improve my eating habits in terms of risk reduction. So I asked her about supplements to help reduce/eliminate circulating estrogen-such as calcium d-glucarate and DIM. I am also considering olive leaf extract and/or green tea extract and tumeric.  I ordered them but have not started taking them. 

My MO (who I really trust) said that because supplements are not regulated like pharmaceuticals, there is no way to really know the levels and purity of many supplements.  Lot of ingredients come from China and are even less regulated.  She recommened Michael Pollan's books as well (which I have read), as well as "The Blue Zones", and trying to conume as much of the healthy stuff in original form as possible.  She did say that it would be great if there could be more studies on the value supplements (assuming that the ingredients could be regulated).  She said there was one breast cancer study going on with some supplement (can't recall which) in Australia that had to be halted because participants were suffering from renal failure from bad ingredients.

Anyway, was wanting to get some insight from you ladies to see if you are aware of any supplement companies that take extra steps to ensure that ingedients are local and that purity is tested?  I want to do all I can to prevent recurrence, but I also don't want to throw money away on supplements that might not be beneficial and in fact might prove to be harmful.

This is a link I found that might seem like some kind of FDA scare tactic, but that also makes sense.  Thanks in advance for any insights!

www.consumerreports.org/cro/ma...

Comments

  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 377
    edited February 2013

    I understand your your concern about the origin of supplements. Coincidentally, my doctor recently explained pharmaceuticals and even over the counter pain relievers such as generic Aleve also come from China and other countries.

    Your doctor might want to look up the number of supplements that have been studied specifically for breast cancer. It's an urban legend that they haven't been studied.

    Sorry, I couldn't get the link to open.  

    Good luck with your future care. PM me if you need any info since I only drop by occasionally.

  • Rhiannon78
    Rhiannon78 Member Posts: 33
    edited February 2013

    Hi again:  Does anyone out there using supplements have any comments as to the sourcing/purity/effacy of the supplements, or is everyone just taking it on faith that this fairly unregulated market is self-policing? Any supplement manufacturers that you know that actually address this.  thanks so much!

  • Jomama2
    Jomama2 Member Posts: 96
    edited February 2013

    Very good question.  I take a few supplements and have wondered if the ingredients are as stated on the package.  There is little-to-no FDA oversight as supplements are not considered drugs (they fall into the food category, I think), so I guess you have to rely on the distributer??  I feel a little more confident ordering from Life Extension and/or Vitacost (less expensive, but does more money equal better quality? not sure). I found this note at the bottom of the Vitacost website re: their own brand:

    "Worried about the safety of your supplements? So are we. All Vitacost products are laboratory tested to meet FDA standards for identity, purity and composition. Products are also tested for heavy metals, microbiology and contaminants."

    That being said, I was taking a prescribed drug, generic metformin which came from India.  Considering the undesirable and explosive side effects, I assume it was made with water drawn directly from the Ganges River!  I now take the more expensive name-brand Glucophage which I tolerate a bit better.  Fortunately my insurance pays for it, but if I had to pay, it would cost over $450 more than the metformin!!  Ouch.

    I hope someone with more knowledge will come along and explain how you tell if what you're taking is what it purports to be??  Joan

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