I got a phone call from Myriad Genetics the other day, in the middle of the day. I was hard at work and not pleased about being disturbed. I looked at the caller ID to ensure it wasn’t one of my kids’ schools calling to report a sudden onset of vomiting, saw that it was neither the elementary nor the middle school, and chose not to answer. I got back to work — in this case, carefully wrapping and packing my excessive collection of martini glasses, even though I’m not a martini drinker and have never caught on to the trendy flavored martinis. Why do I have all these glasses? When was the last time anyone in this house drank anything besides beer from a bottle or champagne from a flute? If I decide to ditch the martini glasses, do I still need to wrap each one before donating them? Why is this one glass so much bigger than the rest? Where did it come from, and why do I only have one this size?
See why I don’t have time to answer a call from Myriad Genetics?
Truth be told, I figured in the millisecond of conscious thought I devoted to that readout on the caller ID that someone from Myriad Genetics must be calling to collect on a medical bill from months ago. At this point in my cancer “journey,” I have had so many tests and receive so many bills from different labs, physician groups, and hospital management companies, I would need a manager to keep them all straight. In the early days of this “journey,” my health insurance company provided a patient advocate, who acted as my manager. When I received a bill I didn’t recognize, I could call her and she would do the leg work — both with my insurance company and with the vendor billing me — to determine what I really owed and why it wasn’t fully covered. I have a 3-ring binder that is stuffed full, I mean completely full, of copies of medical bills. That binder tells an evolutionary story about my cancer “journey” from the first days of diagnosis in which I set up carefully labeled dividers to contain each category of my cancer: notes from doctors’ appointments, research, copies of test results, and a motley assortment of insurance clobber. In the days of feeling good, I would carefully note at the top of a medical bill the details of that particular transaction: the date I paid it, or the contents of the conversation with the patient advocate. In the dark days of being sick, sick, sick from the post-mastectomy infection, the correspondence is shoved helter-skelter into the notebook, crumpled and noteless. These days, doctors’ appointments and test results are few and far between, which is a good thing since the binder is so full. There is no room in the inn. My choices are continue stuffing stuff into the overly full binder, or start a new one. I don’t like either option.
Back to Myriad Genetics.
I didn’t give the phone call another thought; my thoughts were quite consumed with the martini glass collection, and my brain is rather full with the ginormous list of tasks required when moving house. I didn’t think about Myriad Genetics or the genome testing involved in the cancer “journey” until the story broke about Angelina Jolie’s preventative mastectomy. In her eloquent New York Times article, Jolie mentions the costliness of the genome testing she underwent that detected her risk factor (in her case, an 87 percent chance) of developing breast cancer and that the cost is a barrier for many women. I remember taking the Oncotype test to expose the exact characteristics of my cancer. My breast surgeon ordered the test so that we could better determine exactly what we were dealing with and decide on the best treatment, yet my insurance company denied payment because they don’t cover genetic testing. I don’t recall the exact cost of the Oncotype, and I’ve already packed my overstuffed binder, but it was definitely several thousand dollars. However, the cost of the test was a pittance compared to the cost of the chemo that two oncologists recommended before I consulted a third, Oncotype results in hand, who said chemo wasn’t necessary and in fact, would cause more harm than good. That nasty post-mastectomy infection was the final nail in the proposed chemo’s coffin; the Oncotype cost some stacks but it saved my insurance company even more.
Which brings us back to Angelina Jolie and her subtle yet effective reference to the cost of such tests and the disparity between who can and cannot afford such tests. I also had the BRCA test that Jolie subtly yet effectively mentions, and remember thinking, wow — $3,000 for swishing Scope around in my mouth then spitting the minty saliva into a collection cup? And yet that $3,000 test determined that I do not carry the gene that predisposes me — and my daughter — to breast and ovarian cancers. Jolie’s BRCA test revealed that she does carry the gene, hence her preventative mastectomy.
Why does any of this matter? Well, beyond the age-old debate about the haves and the have-nots in health care, of course. That’s enough of a reason. Equally important,though, is the fact that Myriad Genetics has patented the BRCA1 and BRCA2 genes. They own the genes, essentially, which gives them a monopoly on testing. Therein lies the problem. With a monopoly, other scientists and other companies can’t get in on the gene testing, which shuts the door on any possibility of discovering better and less-expensive testing methods. While Myriad Genetics needs to make a buck, just like every other company, the stakes are high when we’re talking about shutting out many customers who may not know about their genetic risk of cancer until it’s too late.
The Los Angeles Times described the situation quite succinctly:
“At issue is whether a human gene sequence can be patented. That’s the broad question. The two specific sequences patented by Myriad — BRCA1 and BRCA2 — are genes that suppress tumors. A small percentage of women have defective copies of those genes, and they are extremely likely to develop a virulent form of breast cancer. They also face a higher-than-average risk of ovarian cancer. Myriad’s patents give it an unusual degree of control over researching and testing for BRCA defects. Only Myriad can legally isolate the BRCA1 and 2 sequences. In the United States, that means only Myriad’s lab can conduct a full sequencing test to check a patient for the innumerable possible mutations of those genes.”
Should Myriad Genetics be allowed to essentially own these genes? That’s up to the Supreme Court to decide. The ruling is expected next month, and the debate will likely be heated before, during, and after. I’ll keep ya posted.
The American Psychological Association knows how to throw a party. Well, a blog party anyway. The APA is sponsoring a Mental Health Blog Party today, and I’m happy to participate. Many thanks to Marie at JBBC for spreading the word about the MHBP. If I didn’t know better, I might think it’s an acronym party, as well.
The topic of mental health is scary, uncomfortable, and unpleasant for a lot of people. Add cancer to the discomfort of mental health and watch people run screaming from the room or back away slowly, never breaking eye contact. Perhaps that’s part of why the APA is throwing the Mental Health Blog Party; to de-stigmatize mental health issues the way pioneers such as former First Lady Betty Ford and Dr Susan Love have taken the shame out of breast cancer.
Yesterday I got a call from the nurse case manager provided to me by our health insurance company. We’ve had this particular health insurance, United Health Care, since September, but the NCM just got around to calling me. When I was first diagnosed, and under another insurance company, the NCM was fantastic. She was a great resource not only for insurance issues but also knew the medical side of my problem too. She went to bat for me and got the insurance company to pay for my Oncotype DX test, which costs a fortune but is instrumental in making a decision about treatment options.
Anyhoo, I was surprised to get a call from the United Health Care NCM out of the blue yesterday. I suppose she — or someone in her group — just noticed my unusually thick file, chock full of cancer calamities and infection ills and figured I warranted a phone.
We went through the usual laundry list of details: date of diagnosis, surgeries (yes, plural surgeries), and treatment status. Then there was the recitation of the everyday meds post-cancer: tamoxifen to prevent recurrence, Effexor for menopause symptoms, levothyroxine for sluggish thyroid, and Ambien to help my worried mind shut down and get some sleep. Oh, and don’t forget the glucosamine for my rotten joints (thanks, tamoxifen!), Ferrex iron boost for anemia (thanks, mycobacterium!), and calcium for osteopenia (thanks, menopause!). I’ve recently added an Omega fatty acids supplement too to help jump-start my addled brain (thanks, PTSD).
Although I clearly stated that the Effexor is to help manage the hot flashes, night sweats, and moodiness of menopause, the NCM asked me if it’s helping me manage the depression brought on by my cancer diagnosis.
I reiterated that I’m not taking it for depression but to get some much-needed relief from the atrocities of chemically induced menopause. I don’t think she believed one word I said. Either that or she’s hard of hearing because she again asked how I’m coping with the depression and reminded me that it’s ok and even expected to feel sad after being faced with cancer.
I finally told her in an exasperated voice that I don’t suffer from depression, and if I did, I’d have no qualms whatsoever about taking an antidepressant. To me, depression is no different from any other medical condition that requires daily medication. Where’s the stigma surrounding statins for high cholesterol? Or beta blockers for high blood pressure? Or insulin for diabetes? Why should the stigma just be attached to depression? That sweet woman got more than an earful from me. I still think she doesn’t believe me about the depression thing, and she ended our phone call by reminding me that my health insurance plan covers 8 free counseling sessions. Just in case I need some help with that depression.
I understand completely why cancer patients and cancer survivors may be prone to depression. The list is long, very long, of reasons for cancer patients and survivors to be depressed, sad, out of sorts, unmotivated, fatigued, unable to concentrate, easily confused, guilty, hopeless, worried, unable to sleep and full of chronic aches & pains.
Webmd has an entire online community devoted to cancer. From the web site:
“Depression is a comorbid disabling syndrome that affects approximately 15% to 25% of cancer patients. Depression is believed to affect men and women with cancer equally, and gender-related differences in prevalence and severity have not been adequately evaluated. Individuals and families who face a diagnosis of cancer will experience varying levels of stress and emotional upset. Depression in patients with cancer not only affects the patients themselves but also has a major negative impact on their families. A survey in England of women with breast cancer showed that among several factors, depression was the strongest predictor of emotional and behavioral problems in their children. Fear of death, disruption of life plans, changes in body image and self-esteem, changes in social role and lifestyle, and financial and legal concerns are significant issues in the life of any person with cancer, yet serious depression or anxiety is not experienced by everyone who is diagnosed with cancer.”
“It’s harder to write about the weight of depression than it is to write about prostate cancer and its physical indignities. Cancer is clear biological bad luck. But depression, no matter how much we know about it, makes part of me feel as if it’s somehow my fault, that I’m guilty of something that I can’t quite articulate.”
“Partly, I think, I’m grieving for the person I was before I learned I had cancer. Mortality is no longer abstract, and a certain innocence has been lost. And while the physical trauma is past, the stress lingers and brings with it days washed in fine shades of gray. In the same way that radiation has a half-life, stress does, too. We all ache to be the heroes of our own tales, right? Well, I’m not feeling too heroic these days. Cancer pushes lots of difficult buttons. It lays bare our basic vulnerability and underlines the uncertainty of this life. And prostate cancer attacks our culture’s ideal of manhood. The steely-eyed Marlboro Man isn’t expected to worry about incontinence and erectile dysfunction. Cancer feels bleaker than other diseases. Even though my health keeps improving, and there’s a good chance that I’m cancer free, I still feel stalked, as if the cancer were perched on my shoulder like some unrepentant imp.”
I get a daily email with a breast cancer truth every day. Daily. Every day. Like when someone says 8 a.m. in the morning — daily every day. Today’s truth was about the rate of mortality being higher for African American women. I’m not African American, but I read the details anyway, because anything having to do with breast cancer has to do with me.
The emails come from the National Breast Cancer Coalition, and there are some interesting facts. Well, interesting to someone whose life has been affected by breast cancer. I’m unfortunately in that camp. Boo. I don’t want to be in that camp, but I can’t unring that bell. No one asked me what I want, sadly. Once you’re diagnosed, no matter how much you fight it or try to ignore it or don’t want it, you’re in that camp. So ya gotta deal with it, and one of the ways I’ve dealt with it is to immerse myself in fact, figures, and information. Not saying that’s the right way for everyone, because I know some people like to stick their head in the sand. I’m not judging the ostriches, just saying that they do in fact exist.
Because I’m not an ostrich, and I feel the more info I have the better armed I am, I like all the facts, figures, and information. Even the scary parts. I tell my doctors all the time, just give me the info, including the ugly stuff. I can handle the hard truths, I just need to know that I’m dealing with. I do much better having the information. Like the statistic that says 65 percent of those diagnosed with breast cancer will have a recurrence. It’s scary, but I like knowing it. I need to know it. For me, the unknown is much scarier. The permutations my wild imagination comes up with are way scarier than the actual facts.
I fully expect a recurrence.
Not because I’m looking for the Grim Reaper or because I’m negative — neither of which is true — but because I’m realistic. Being diagnosed at age 40 with what was for me my second cancer (melanoma was the first), I fully expect to have to face this beast again.
With both the melanoma and the breast cancer, I got off easy, relatively speaking. The post-mastectomy infection gave me a run for my money, but the cancers were easy to treat; the surgeries were awful but temporary. Man, that infection was a bitch. Who’d have thought it would be worse than the cancer and subsequent treatment? But it was.
But back to recurrence.
I fully expect it.
In fact, I recently mentioned that among a small group of my besties and was met with utter silence. Not one person piped up to say, “Nah — you’re crazy. You beat it and you’re done. Nothing to worry about.”
Chirp, chirp, chirp went the crickets in the abysmal silence of no one sticking up in disagreement with recurrence.
I’m no fool. I know that having one cancer puts a person at a much higher risk of contracting another type of cancer (exhibit A: melanoma >> breast cancer). I expect that it’s coming. At some point, at some time, it’s coming. I can do the math and know that I will spend more years fighting cancer than I’ve been alive. That’s one of the many things that just plain sucks about being diagnosed young. Or young-ish, in my case. Yes, there are tons of people who are much younger than I was at the time of diagnosis. Hell, some of them are even kids. Little bitty kids, fighting a big, nasty disease. Plenty of people are young, not young-ish, at the time of diagnosis. And they will spend even more years than I fighting the disease.
I had a fancy test shortly after my diagnosis, to identify the characteristics and risk factors of my cancer. The Oncotype gave very specific and very personalized information about my cancer. The test looks at a group of genes (21 genes total: 16 cancer genes and 5 control genes) to see what their activity level is. This test provides additional information — beyond the usual standard measurements such as tumor size, grade, and whether lymph nodes are involved — to give each woman a score that correlates to how likely it is that her cancer will return. The idea is to help make decisions on cancer treatment (chemo? no chemo? if so, what type and for how long?). Very useful information. Expensive (nearly $5,000) but useful.
My risk factor for recurrence of this same cancer, according to the Oncotype, was low. Really low. Single-digits low. But that’s little consolation to me. It’s nice to see that low number on the report, but I’m no fool. I know how haywire cancer cells can be, and how one cancer cell is all it takes to wreak havoc in one’s body.
I think it’s safe to say that most people who have stared down cancer think about recurrence. I remember wondering how in the sam hell I would ever get through what was the worst thing in my life, and once I was through it, thinking how nice it would be to consider myself done, but no, there’s the thought of recurrence. I think about it every day. Even after everything I’ve been through.
Every single day.
The current pinkwashing that permeates every October gives the impression that once you fight your cancer battle, you’re done. It’s a glamorous, sexy disease, wrapped in blush highlights and tied in with lots of fun products, all wrapped up in a cute pink ribbon. Sure, you may lose your breasts and your hair, and you will most likely gain lots of weight from the hormone therapy necessary to fight this bastard. You may lose any shot at positive self-esteem and a happy body image, and your life will never be the same. You may well make yourself crazy with the wardrobe challenges involved in dressing around a mastectomy and reconstruction, and you may well be bankrupted from the surgeries and treatments (even with good insurance), but once you’ve slayed that beast, you’re done.