The discovery in Canada of an extremely large margin of error in reading breast cancer pathology slides and the subsequent preventable deaths that occurred have lead to public outrage and the demand for national standards. But don’t think that misreading of pathology slides is only a problem that can occur up north in the land of socialized medicine. The financial push behind our cost controlled medical system in the U.S. doesn’t exactly incentivize long, thoughtful, diligent behavior in any other part of our care, so why would the laboratory be an exception?
As the bad-ass, proactive, young adult cancer patient I hope you are, my guess is you grill your oncologists and radiologists, but how about raking your pathologist over the coals? If you look closely on your medical record you might see typed in the corner the name of the white lab coat clad pathologist who was huddling over a microscope determining the future of your life, but that is as close as we get to meeting “the man” behind the curtain. Well, I say screw that.
Demand a second opinion on your pathology when the results seem to not fit the pattern of your disease or leave your doctors scratching their heads. Perhaps your insurance or medical care coverage will balk at the expenses at first, but you just might win using the good argument that pathology is what determines how much treatment and surgery you need and you may save them bundles in the long run.
If you cannot get a second opinion from the pathologist, at least have your doctor talk to the pathologist, live on the phone. I asked a doctor to do this once for me and strangely enough when they took a second look they decided well, maybe he would actually classify the cell type differently.
Reporter Allison Gandey wrote an article on the Canadian crisis in which she interviewed Jared Schwartz, MD, president of the College of American Pathologists. He asked this question for oncologists: “Do you know who is examining and interpreting your pathology?” In Gandey’s article Dr. Schwartz suggests that doctors adopt a more collaborative approach and work more closely with one another. “You have to have a relationship with the person looking at that slide. And clinicians, like patients, should have the ability to request a second opinion.”
See my picture below from the NY Times. “Pills” scrawled in lipstick on my mirror was not a cute styling touch for a photo shoot. I have pill reminders written above every sink in my house, taped to my washing machine, and next to the front door. The heart is a reminder to be kind to myself and not head down the path of feeling like an 85 year old with dementia.
My memory sucks. Is it from treatment, or the compounded stress of having cancer for seven years, or from my medically induced extreme hyperthyroidism? In traveling throughout the U.S. and interviewing 20 and 30 –something cancer patients for my book Everything Changes, one of the greatest comforts was in meeting other young adults who made me feel like less of a freak. Their hot young minds were also like a sieve. They too were unable to retain what they read in books, needed post-it notes to remember they had a job interview, and forgot simple words like the name of their sister.
Having my young mind disintegrate screws with my self-esteem. Getting a master’s degree or my Ph.D seems an impossibility when I can hardly retain the content of a book review from the Sunday Times. Last night the word rabbis leaped out of my mouth instead of rabbits. “There are a ton of rabbis tonight in the alley behind our house.” When I fumble in front of my husband Shannon we roar; when it happens with friends or in professional situations I want to crawl under the table.
My doctors could not have cared less about my memory challenges. Is it because they think I should just be glad to be alive, or because if they don’t have medical nomenclature for “chemo brain” then my experience simply does not exist? If it is the later then perhaps we are finally in luck.
I read today that researchers at the University of Michigan are beginning to study chemo brain in women with breast cancer. They will compare MRIs of three groups of women: those with breast cancer on chemo, those with breast cancer not being treated with chemo, and women without breast cancer. I eagerly await the results of these studies. Perhaps they can publish them on a series of post-it notes.
I’m featured in today’s New York Times Skin Deep column, red faced and all, discussing high-end skin care products designed for cancer patients. The article asks are they ethical or just preying on the misfortune of cancer patients, luring them with pretty packaging and promises?
Treatment side effects can range from caustic farts cured by Gas-X to life threatening neutropenia that can land your ass in the hospital for weeks at a time. So when the cure for a side effect like blotchey, rashy, or burnt skin is counteracted by Lindi Skins’s charming facial serum in petite, periwinkle, Swiss spa like packaging, well it makes you feel like a queen instead of a cancer patient.
A 1oz. bottle of Lindi Skin face serum is $40 - the equivalent of two office visit co-pays on my health insurance. Lindi Snider defends the price of her products: “It’s sort of like saying, ‘Why isn’t chemo free?’” Well Lindi that is a freaking fantastic question. Maybe it should be. And do you really want to compare the cost of your product to the inflated price of drugs that are sending families into economic chaos? A Harvard research study found that “every 30 seconds in the United States someone files for bankruptcy in the aftermath of a serious health problem.”
Your face serum feels like silk, but when my free samples are gone, my wallet and my conscience will lead me to my kitchen cupboard for a good homemade olive oil and sugar scrub. Here’s one young adult cancer consumer you cannot sucker with periwinkle packaging.
This just out today: Guys dishing about ejaculation and treatment. Sam from the SAM Fund revealing her staggering $287,000 surgeon’s bill. It is finally here - from the Lance Armstrong Foundation, a video podcast series for young adults living with cancer. From the get-go there is no confusing this with a geriatric cancer power point presentation; the opening credits look like they were pirated straight from an iPod commercial. Thirteen podcasts are 5-7 minutes long each and cover issues like work, school, dating, sexuality, even fear of dying. (Death and cancer? Few are brave enough to mention those two in the same breath these days, let alone when talking about us young darlings of the cancer world. LAF gets it – we croak too.) While the hosts of each video sound a tad scripted and stiff, nothing about these videos are clinical or pedantic. Check them out. Let me know what you think.
I just got the proof of the cover of my book Everything Changes: Living With Cancer in Your 20’s and 30’s and the background is robins egg blue. I love it. The foreground has three Polaroid snapshots that appear like they are taped to the cover. It got me thinking, if it weren’t the graphic designers but rather me who got to perfectly sum up my cancer career in three Polaroid shots, what would they be?
1. Me perched next to my stack of medical and insurance files that is nearing waist high.
2. The sponge bath that my friend gave me the first time that I could have human contact after the radioactive contamination effects of my treatment had diminished. That is a good friend! (She has since become a Buddhist chaplain. Rock on Loren.)
3. Me, riddled with anxiety, sitting on the couch next to a guy on date number two when I confessed that I have cancer. Unlike the other kagillion dates before this one, it went very well - he is now my husband.
What pics would you choose from your cancer career?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
