Tuesday, November 22, 2011

Open Letter to My Friend Who Was Recently Diagnosed with Cancer


Dear Jane

I'm so sorry to hear you were diagnosed with breast cancer. You've joined that club that keeps growing too fast! Help is available, including but not limited to the following:

Information
Some people try to become cancer experts when they get a diagnosis; some prefer to have only actionable information. But everybody has to make treatment decisions. If you’re like most people you will rely on the strength of evidence, modified by your own beliefs and flavored by the way in which the information is conveyed.

I know you're able to understand complex data but please be gentle with yourself if the stress of the diagnosis temporarily affects your ability to think clearly. I'd be happy to help research your options or even just listen to you think out loud about them.

The National Comprehensive Cancer Network publishes its clinical practice guidelines online; an excellent place to start. For less technical info, breastcancer.org and Association of Cancer Online Resources have moderated online communities where patients share their experiences.

Emotional Support
Your friends want to – and can – help somehow or other. The same goes for your family, colleagues, neighbors, faith community, social network and the other people at the dog park. But it's your choice how many people you share your story with.  

I know you want to keep a low profile for now, and I respect that. Consider picking a liaison who can help control the flow of information, casseroles and teddy bears. She can send updates to an email list, or call just the friends you've directed her to.

The most important thing is that you do not have to worry about anybody else's feelings right now. It's all about you!

 Practical Support
It’s just so inconvenient to have cancer ;) There’s no therapeutic benefit for “toughing it out,” minimizing the discomfort or ignoring your daily needs. Help is available, sometimes from surprising places: for example, the “Road to Recovery” program can drive you to treatment and back.

Keeping track of the insurance and financial data is necessary but can be a burden. You might ask a trusted friend for help. The American Society of Clinical Oncology offers suggestions about how to track both your clinical and medical insurance records.
Treatment means teaming up with a group of providers, and they’re human so mistakes can happen. The federal Agency for Healthcare Research and Quality has advice about the best ways to communicate with your healthcare providers. Taking along someone who can take notes and ask questions during appointments can help protect you from bad outcomes. 


Both research and personal experience have taught me what it means to get the right help in the right way at the right time. Wishing you that kind of help, plus health and long life,

 - Eve

2 comments:

Susannah Fox said...

Eve,

Thank you for delivering a just-in-time post, directly to my worried mind. You must have gotten my bat signal - or maybe I got yours. I was thinking of you as I walked to work this morning, wondering if I could channel you and your wisdom as a patient navigator.

You see, last night I got an email from someone who knows someone who has just been diagnosed with kidney cancer. Can I help?

Yes, I can. But only because I happen to know how powerful peer-to-peer healthcare can be. And because I happen to know a bit about kidney cancer.

I'll forward your letter along with the links I already sent:

A listserve called KIDNEY-ONC:

http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=KIDNEY-ONC

which is part of:

http://www.acor.org/

Plus: E-patient Dave's 3 posts tagged with "advice for cancer patients":
http://patientdave.blogspot.com/search/label/advice%20for%20cancer%20patients

And finally, the National Cancer Institute:
http://www.cancer.gov/

And I'll add P.F. Anderson's tweet from this morning, which also seemed like a bolt from the blue, sent directly to me:

Cancer? New diagnosis? http://acor.org/ | http://cancerguide.org/intro_home.html | http://www.aicr.org/learn-more-about-cancer/learn_resource_cancerresource.html | http://blochcancer.org/2009/12-questions-for-a-newly-diagnosed-cancer-patient-to-ask-their-physician/ | http://blochcancer.org/

https://twitter.com/#!/pfanderson/status/146998269791313920

AnneMarie @chemobrainfog said...

This is great advice. Well written and having walked the path, I most certainly would have appreciated someone providing me with this information. Definitely being bookmarked or added directly to my blog page. Happy holidays!
AnneMarie