Reader beware.

I’m not going to name it or link to it, as that would add legitimacy in Google’s eyes, but – there’s a blog out there by a patient with an adrenal tumor that has recently come to my attention, and frankly, I find it really disturbing. That being said – consider the following to be just my opinion; what works for me may not work for you, and vice-versa. What I believe may not fit your belief system, and vice-versa.

Once again, the following opinion is mine and mine alone.

The blog’s author claims that she was scheduled for surgery but then was pointed to a nutritionist who could “starve her tumor” via a dietary approach, so she called off her surgery. She provides the nutritionist’s contact info, but it is ambiguous as to whether or not she is actually trying to sell his or her services. She provides some detail about the diet, which looks like a hybrid of Paleo/Primal eating combined with some herbal stuff. There is nothing wrong with any of this per se; as most of you know, my diet looks pretty much like this and I believe most PA patients could benefit from ditching processed foods (this means you, bread and pasta and baked goods!) and eating real foods and more vegetables. BUT – and this is a BIG BUT – I would never, never claim that it will “starve a tumor.” Because you know why? That just isn’t good science.

I’m no doctor. Heck, I don’t even play one on TV. But I do know that a tumor is a genetic mutation, and your genes don’t care if you are eating green kale smoothies or Swanson’s TV Dinners – if you lose the gene lottery, congratulations, you have a tumor! And while what you eat can influence how that tumor behaves, it will not – I repeat, it WILL NOT – make the tumor go away.

Most of us with PA learn that sodium makes us feel like crap. This is because it provokes the tumor to produce more hormones which make us sicker. Similarly, the type of breast cysts that I have are believed to be influenced by estrogen, so I minimize plant estrogens (soy products) in my diet. But in both cases, elimination of dietary sodium or dietary estrogen will NOT make the tumor or cyst go away; it will just minimize the damage done.

Thanks to my food intolerances, I ate a diet very similar to the one addressed on the blog-that-shall-not-be-named for close to 15 years while the tumor was still in my body. And outside of some misguided side trips involving hypertension meds before I actually had a correct diagnosis, I got by without medication most of those years. While I have no way to know if the tumor got bigger, I do know that as the years passed, my symptoms got worse and worse, and by the summer of 2010 – 13 years after my first ER visit for PA symptoms – my low potassium came close to killing me (saved only by ER visits and electrolyte drips) regardless of how many heads of kale I ate.

I may have some added difficulties to a dietary approach to tumor management thanks to damage caused by a lifetime of undetected celiac disease – I am unable to fully absorb nutrients from food like a “normal” person would. So this may complicate things, but – in my own experience, combined with the experience of the dozens of other PA patients I know from the Yahoo group, managing an adrenal tumor via diet alone is not a one-size-fits-all solution. While a processed-food-free, low sodium, high potassium diet is a GREAT idea for ANYONE, it is not a magic bullet that will “starve a tumor.”

The aforementioned blog – okay, the blog-that-shall-not-be-named – appears to me to be sketchy enough that nobody would take it as actual medical advice. But then I’m trained in this stuff – I’ve got a master’s in Information Science and I keep a roof over my head by knowing how the Internet works. And I am constantly surprised by those around me, often with advanced degrees in fields other than my own, who are unable to discern between a legitimate website and one that is… less than legitimate.

My intent here is not to bash what works for someone else – just to point out that, with our often-misunderstood condition, one should use extreme caution when following the advice of others. (Including my advice!) Think critically and think analytically. Keep science and facts in mind. And with your tumor, as with life itself – if it sounds too good to be true, well, I hate to break it to you but it probably is false.