Advocate, advocate, advocate…

CSC welcomes Robyn Stoller, founder of CancerHawk and tireless patient advocate as a guest blogger. We’re thrilled to be working with her and look forward to additional informative and insightful posts in the coming months.

If you’ve been reading CancerHAWK, you know that my sole purpose in doing this blog is to share information. My goal is to present information that you may not know about so you can become your own informed advocate. And when I say “you”, I mean patient, caregiver, family or good friend… it’s whoever is helping manage the case.

Often times, I write about novel approaches to treatment and personalized cancer care because this is the future of medicine. But remember, I am not a doctor (although at times I do play like one)… I’m just an extremely determined advocate.

And although it is imperative that you speak with your doctor or team of doctors before making any decisions on anything I write about, it is also imperative that you do your own research to guide the process & decision making where possible. You are your own best advocate!

Here’s a true story… a good friend of mine has a sister that was recently diagnosed with breast cancer. They were debating amongst themselves the need to do additional molecular testing. But the decision to do this had to be made PRIOR to the lumpectomy because they need fresh tumor sample to run these tests. When her sister spoke with the Oncologist (who btw, I know, is extremely competent & I think the world of), he said “You don’t need to do molecular testing. The type of cancer you have is common and there are successful standard protocols that we follow. It’s just not necessary.” Since my good friend “lived” Alan’s cancer with me last year, she knows that my experience & personal research says that there is nothing “standard” about cancer… Yes, there are proven protocols that work some of the time… but some of the time, isn’t good enough when you are talking about someone’s life.

Since my friend & her sister are like me & are “cover-your-bases kinda gals”, and since there was no harm in getting this additional testing done (and they had savings to pay for it because the sad reality is that today insurance does not cover this stuff), they told her doctor that they were in fact going to run these additional tests. They got all the information & made up their OWN mind. The Oncologist obliged.

Fast forward to today… no cancer in the lymphnodes (yeah!!!) but some additional, standard testing came back saying that the likelihood of recurrence is high so she absolutely will need chemo. Now they are awaiting the test results of the molecular testing. Hopefully the reports will show her local Oncologist what drug(s) will be most effective at battling her particular cancer. And now, they are so relieved that they opted to take a personalized approach to gain better insight… it might just be the extra insurance they need. Knowledge is power…. and the right knowledge or information can make all the difference!

BOTTOM LINE: Be you own advocate. Do your own research. Talk to your doctors. Ask LOTS & LOTS of questions. Weigh the pros & cons. And if what your doctor is saying doesn’t jive with you, get a 2nd opinion…or a 3rd…. or a 4th. And never, ever give up! That’s my advice…

Click here to read Robyn’s full blog, CancerHawk.

About Robyn Stoller

Founder of CancerHawk.com, Robyn Stoller is a patient advocate and champion. Just last year she lost her 47-year-old husband Alan to cancer, but has put their journey to work for others. At each crossroad—from finding the best doctors with the right mentality to accessing obscure (and amazing!) resources—Robyn's gift for research, networking and tireless advocacy and a lot of luck led to just the right places. Now, Robyn’s mission is to help patients and caregivers touched by cancer find the information they need to make informed choices. To get straightforward answers to the questions you haven't yet asked with a dose of humility and humor, visit www.CancerHawk.com…the REAL deal for cancer patients & their caregivers.

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