20 Questions for Your Oncologist, and word from the wise

I got a link to this in email today from Radical Remission author, Kelly Turner PhD. This set of questions is really important for you to know up front.

"My friend (and Radical Remission survivor) Chris Wark recently created a free guide for cancer patients called "20 Questions For Your Oncologist."

It's a 1-hour audio podcast where Chris explains the 20 questions, along with a printable list of the questions. I found it to be spot-on, and think every cancer patient should be asking these questions. I hope you also find it helpful. (Note: It's free, but you have to provide your email address)."

http://www.chrisbeatcancer.com/20-questions-for-yo...

Me? I was where you were almost two years ago. I did ask many of these questions and I engaged with a FABNO naturopathic oncologist and a Chinese Medical practitioner who also knows medical qigong. I had a complete response to a new chemo but cancer cells from HER2 like the central nervous system and I almost died of a misdiagnosed brain tumor this summer (cancer didn't run in my family, I was young, still they thought I was metastatic at diagnosis -- and it turns out I was but asymptomatic and they don't check the brain of there aren't symptoms).

I have now spent a lot of time on boards with stage 4 patients, a place I would have been uncomfortable two years ago. What I am learning from these ladies and others who have been through treatment includes:

• The drugs you take do affect outcomes -- but docs sometimes offer you the "standard of care" and it isn't the best targeted. One gal reported that after a successful course and tumor control with one set of drugs the next one cause rapid tumor growth beyond where she had started.

• They talk about "individualized medicine" and you would think cancer treatment is cutting-edge but a lot of it is a crapshoot. In stage 4 treatment it is obvious that they don't know what they are doing, they make suppositions and guesses and sometimes they are wrong. My friend went from stage 1b HR+ to HER2+ lung mets 5 years later. They gave her anti-HER2 therapy but they failed to tell her there was a 1 cm patch of cancer in her hip. It's a year later and now she finds out about this patch and it is 6cm now and the anti-HER2 therapy didn't touch it. Bone mets are more likely HR+ And worse is knowing that if she just got rads to her hip last year it would probably be gone.

• There are more tests that you can ask to have done. My naturopathic-onc typically checks serum levels of: magnesium, copper, zinc, ferritin, vitamin D. My hormone positive chemo group members also felt at a loss after treatment -- what hormones weren't they processing well? Doctors won't offer these tests but they don't cost that much relative to treatment and you are probably going to be getting lots of bloodwork anyway. It is your body and your wallet and you should insist or find someone who will check for you.

• You can also get other testing done if you want, they don't tell you and insurance likely won't pay for it but for a few thousand dollars you can have your tumor tissue tested by Foundation One and you might find out you have some novel mutations. You might find better treatment options. I have found my report to be helpful in understanding that I don't have factors associated with chemo resistance. Oncology hasnt caught up with what to do with the reports yet but you know what? That isn't your problem. You deserve the best access to data about your disease because you might spend $350,000 ontreatment -- and besides it isn't their ass on the line, it's yours.

http://foundationone.com

BTW, Bestbird has been collecting the latest on breast cancer treatments, tests and complementary therapies here. Download her guide as it has top notch info that is often leagues ahead of anything your doc knows or will offer and it contains lots of info appropriate to any stage of breast cancer.

https://community.breastcancer.org/forum/8/topics/...

Also know that they hope you are cancer-free after this but no, they aren't looking for mets. They won't tell you. Their post treatment monitoring is fairly crappy (tell me about it) and they miss things all the time. Feel comfortable asking for more tests, ask around the boards and you will get lots of input as to whether you are approaching the problem correctly

Breast cancer, any cancer, is for sh!t anyway. But it isn't about baldness (you can protect your scalp BTW with cold caps -- look on the treatment boards) and pink ribbons -- this is about trying to save your ass. Do it well, do it better. Don't let them get in your way.

Go! Fight! Kill! Win!