Getting the run-around
Posted: June 5, 2014 Filed under: Uncategorized | Tags: ATLAS study of tamoxifen, Benjamin Button, Bruce Banner, health insurance battles, Hulk smash, Oncotype DX, patient advocate, quitting tamoxifen, side effects of tamoxifen, tamoxifen 8 CommentsAs anyone who has faced long-term illness or disease will tell you, wading through the medical bills can be a full-time job.
Luckily, I don’t have nearly as many bills to wade through these days. However, in Cancerland, the next expensive test and big bill can be — and usually is — right around the corner. The latest for me was a vaginal ultrasound in March to determine if my ovaries are up to no good after coming off tamoxifen. Yes, that’s right, a vaginal ultrasound. Don’t be jealous. It’s yet another perk for those of us in Cancerland.
I struggled long and hard with tamoxifen. I’ve written about my complicated relationship with the drug many times; most recently about the T-rage I had been experiencing. Like poor Bruce Banner, I was one Hulk smash away from wrecking something for good, and I didn’t like that. I also had serious bone pain that got worse instead of better. I felt as if I were aging at a scary-fast pace. While the bone pain and aging were unpleasant, they weren’t deal-breakers. The T-rage, however, was a deal-breaker.
The T-rage was bad, really bad, but even worse is the increased risk of uterine cancer. For someone with a complicated family history of reproductive cancers, uterine cancer isn’t something I’m willing to risk. I’m not looking for a three-peat here; melanoma in 2006 and breast cancer in 2010 are more than enough for me. Throw in tamoxifen’s potential to cause liver as well and I’m downright spooked (with my affinity for champagne, my liver is likely limping along as it is. No need to tax it any more than my bubbly habit already does.)
I broke up with tamoxifen last fall. After three years, the side-effects were piling up like cars on Houston’s Southwest Freeway during rush hour. As much as I would have loved to have made it to the 5-year mark with Tamoxifen, it was unlikely; even more unlikely was being on the drug for 10 years, as is the current recommendation for pre-menopausal women.
Whether to continue taking the drug was a very difficult decision, and one with which I struggled. In the end, it came down to quality of life. Cancer and its far-reaching tentacles had already taken so much from me; I wasn’t willing to give up the slight hold I had on my sanity. It is a very personal decision. Much like the decisions that go along with surgery options and adjuvant treatments, what’s right for me might not be what’s best for the next person in Cancerland.
I’m far from alone in my decision to stop taking tamoxifen, however. This study of nearly 9,000 women with early-stage breast cancer revealed that only 49 percent made it all the way through five years. Younger women were more likely to quit their treatment, perhaps because of the far-reaching side-effects that come along with the drug.
As nasty as tamoxifen can be, just stopping it doesn’t mean the trouble ends. Because the estrogen my ovaries produce is no longer blocked by tamoxifen, the potential for that estrogen to feed hungry cancer cells is once again a very real possibility. The next-best option is having my ovaries removed, hence, the ultrasound in March that kicked off the latest round of harassment by my insurance company.
Yes, I am grateful to have health insurance and I am very sympathetic toward cancer patients who do not. The one thing that can make cancer more crap-tastic is to have to worry about going broke because of it. Being stressed about money is no fun. Add in all the hype about stress contributing to cancer, and the crap-tastic scenario becomes even crappier.
As was the phone call I received last week from the hospital where I had the vaginal ultrasound to determine what, if anything, was going on in my possibly ill-behaving netherregion. Here’s how it went down:
Her: “Hello, this is YaddaYadda So-and-So with the hospital you had your ultrasound at on March 20, 2014. I’m calling to collect the $508.40 you owe for that ultrasound.”
Me: (silently, to myself: Do not correct her horrible grammar. Let.It. Go. “at on” is not the worst thing a person can say. Even a person trying to collect money.) “Oh, hi YaddaYadda So-and-So.”
Her: “How are you today?”
Me: “Feeling like I’m about to become $508 poorer.”
Her: (silence)
Me: “hello?”
Her: “Yes, I am calling to collect $508.40.”
Me: “I have no idea to what you are referring. I have not received a bill for my portion of the ultrasound.”
Her: “So you did have an ultrasound on March 20, 2014?”
Me: “Apparently so, otherwise I cannot fathom why we would be having this conversation.”
Her: (more silence)
Her: “When can we expect payment for this unpaid service?”
Me: “When can I expect to see a bill for this service?”
Her: “It will be mailed out this weekend.”
Me: “So, you’re calling me to ask me to pay a bill that I have yet to receive?”
Her: “Yes ma’am. What kind of payment can you give me today?”
Me: “How about we wait on that? Maybe until I actually receive a bill?”
Her: “Ok, but when can we expect to receive your payment?”
Me: “Ummm, how about after I receive a bill?”
Her: “When do you think that will be?”
Me: “Am I being punked? Is this conversation for real?”
Her: (silence)
Me: “Here’s how it’s going to work: once I get a bill I will review the bill. Then I will check with my insurance company. Then I will pay whatever I owe. However, nothing is going to happen until I get a bill.”
Her: “Ok. Thank you for choosing our hospital. Is there anything else I can help you with?”
Me: “I’m not sure you’ve helped me with anything yet, so “anything else” is not likely. But thanks for asking”
Her: “Good-bye.”
The very next day, I get another call from another person in the billing department at my hospital. She, too, wanted to know when they can expect the $508.40 I owe. I told her, quite gently, that I have yet to receive a bill and that I had a conversation to the same effect yesterday, with her colleague. She seemed as dismayed as her colleague that I wasn’t ready to fork over $508.40 for a service for which I’d yet to see a bill.
Two days later, still no bill, but yet another phone call from yet another person in the billing department. I told her that she was the third person to call about a bill I had yet to see. I asked her to please put a note in my file that says Do Not Call Me Until the Bill Has Been Mailed. And Then Wait a Couple More Days to Give Me Time to Go to the Mailbox and to Read Over the Bill.
At this point, my patience had worn rather thin.
After doing some investigating with my insurance company, I learned that the claim had yet to be filed. I duly called the billing office of the hospital to report my finding. I left a voice message stating my business; I suppose all the billing representatives were busy on other lines, cold-calling customers asking for payments for bills not yet process, mailed, or received. I felt comfortable ignoring the two voice mails the billing department left me while I waited for the bill to arrive.
Today I got a call from yet another billing representative, telling me that they got my voice mail and were calling me back to take my payment. Here’s how that convo went:
Her: “Yes, I’m wondering how you’d like to pay the $508.40 owed on your account.”
Me: “You mean the $508.40 about which I left a voice mail, saying I checked with my insurance company and no claim for that service on that day by this hospital has been submitted?”
Her: “Yes ma’am. How would you like to pay?”
Me: (silence)
Her: “May I place you on hold, to verify that the claim has been processed?”
Me: “You call me, then want to put me on hold? So you can check to see if there’s a reason for you to have called me?”
Her: “Uh, yes. Ma’am.”
Me: (sigh) “Ok.”
Her: “Ma’am, we show that your insurance company just submitted payment for $1249.10 today. They just paid today.”
Me: “Ok. Great. So we’re done here?”
Her: “Um, I think so, but let me double check. May I place you on hold?”
Me: (sigh) “Ok.”
Her: “Yes ma’am, your insurance company paid the $1249.10. Today. They paid today. Just now. I don’t see that you owe any deductible. But, um. How would you like to pay your portion?”
Me: “My portion of what? You just said I don’t owe any deductible.”
Her: “Um, that’s right. I don’t think you owe anything at all”
Me: “So we’re done here?”
Her: ” Yes. Is there anything else I can help you with today?”
Me: (sigh)
Here’s what I want to know: does the hospital make such phone calls soliciting payment on purpose, hoping the recipient of the call will just pay whatever amount they’re told, right there over the phone? Or is the billing process complicated enough to warrant the kind of confusion that results in a customer receiving multiple phone calls asking for payment for a bill that’s yet to be received?
Or was I being punked?
Patent pending
Posted: May 15, 2013 Filed under: breast cancer | Tags: BRACAnalysis, BRCA1, BRCA2, breast cancer in young women, gene patents, genetic risks and breast cancer, genetic sequencing, Myriad Genetics, Oncotype DX, Supreme Court 10 Comments
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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.
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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.
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Blog Party, APA style
Posted: May 16, 2012 Filed under: cancer fatigue, drugs, menopause | Tags: American Psychological Association, antidepressants, antidepressants used for conditions other than depression, beta blockers, Dana Jennings, insulin, menopause, Oncotype DX, psychological effects of cancer, PTSD from cancer, statins, stigma and depression, tamoxifen 19 CommentsThe 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.”
Facing the facts
Posted: October 9, 2011 Filed under: breast cancer | Tags: cancer recurrence, fear of cancer recurrence, National Breast Cancer Coalition, Oncotype DX, postaday2011 12 CommentsI 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.
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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.”
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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.
Suck.
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.
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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.
Right?
If only.
