My wife Uzma’s first treatment for Stage 4 breast cancer was an oral drug — a medication to take by mouth every day at home. It cost over $10,000 a month. Uzma’s cancer was slow-growing but relentless. It would respond to medication for about 3 months and then resume its onward march. It was as if it had taken a break, paused to ponder how to beat whatever it was that we were throwing at it. Except for the first drug; it restrained her cancer for almost 9 months. The last cancer treatment she got before being referred to hospice was also an oral drug. It too costs $10,000 a month. Both drugs had a $3,000 copay.
Most of the financial cost of treatment for Stage 4 cancer comes from the price of medications, repeated blood tests, recurrent scans and the fees for chemotherapy infusions. Yes, with good insurance one only pays deductibles, copays and out-of-pocket maximums. Not everyone has good coverage. And even if you do, it all adds up very quickly. We met our deductibles and out-of-pocket maximums every year of Uzma’s cancer treatment. That’s a few thousand dollars every year that insurance did not cover.
There are also the treatments one has to take to manage the side-effects of cancer treatment. Insurance covers some of those medications. But many are over-the-counter (OTC) drugs. With one cancer regimen, we bought Dulcolax® and Colace® in bulk to treat constipation. With another, it was Imodium® for diarrhea. There was Aleve® and Advil® that Uzma took like candy for neoplastic fever — the daily fever that often accompanies the spread of cancer to the liver. Prescription medications for neuropathy, nausea, and vomiting were often in the mix. Uzma would try one medicine after another before finding the one that worked the best for a particular side-effect. Our trips to the pharmacy became as routine as those to the grocery store. And we had leftovers to dispose of from almost every kind of medication she took.
The cost of cancer is not limited to the price of medications. Uzma worked through her first bout with cancer. Taking only two weeks off after mastectomy and a week off towards the end of radiation treatment. According to a recent article in the Boston Globe, about two-thirds of cancer patients who work reduce their work hours by choice or otherwise. After the recurrence, when her cancer became Stage 4, Uzma took the summer with plans to return to work in fall. But then she decided that since her lifespan had been dramatically shortened, she would spend as much time as possible with our kids and pursue her hobbies. She would later say, “This is my retirement. I will get only a couple of years of it, and I intend to make the of most of it.”
There are other costs. Travel to and from the clinic where the patient receives treatment adds to the burden of illness. There are lost wages – for the patient, and also for any family member(s) or friends(s) who accompany her to various treatments. Families often have to struggle to find time to plan and cook meals. They end up eating more frozen or restaurant meals, which are less healthy and more expensive than home-cooked meals. Since Stage 4 patients will be in treatment for the rest of their lives, there’s no end to all this.
Stage 4 cancer didn’t just spread through Uzma’s liver. It spread throughout her life, our life. We have supportive friends and family, but it was as if cancer threw a noose around our life and slowly but steadily kept tightening it. Our social and professional life constricted during treatment.
We went out less often. We stopped going to conferences. One by one, we took our kids out of various activities. First soccer, then scouting, then karate. The longer we lived with cancer, the narrower our focus became. Sometimes Uzma felt guilty about this — after all, it was her illness that was making us homebound. However, most of the time we both accepted it as a fact of life that we could not fight. It just had to be accepted. But the way I see it, this constriction is a cost of cancer that is at least as impactful as the price of treatment.
When checking in for every procedure and/or scan the check-in clerk offered us a written handout letting us know that if needed it, financial assistance options were available. Uzma and I often talked about this and wished that it wasn’t just left to the check-in clerks. It’s not easy for most people to admit to anyone, let alone impersonal administrative staff, that they need financial assistance.
Such talks should be a recurring part of appoints with doctors and nurses in cancer treatment. We wished that oncologists and their clinical support staff would regularly inquire about the emotional well-being of patients with specific questions about jobs, kids, support, money. Patients spend hours tied to IV poles when they can be counseled. We wished they would give more attention to caregivers in the clinic appointments.
Many cancer patients and their caregivers less fortunate than us would probably be helped by oncology staff taking a greater interest in more than their superficial clinical status. Perhaps someone could visit them and teach them how to become comfortable with asking for and receiving help. We didn’t become comfortable until Stage 4. None of this would eliminate the cost of Stage 4 cancer, but Uzma and I thought it would make it easier to bear. Just a little bit easier. But that may be enough for many people.
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This post was originally published on Feb 23, 2019, at www.UzmaMD.com, a blog about finding inspiration and humor in the breast cancer experience. Its themes are love, life, loss, and resilience in the face of one’s mortality. The blog’s creator, my wife, wrote and published a book, “Left Boob Gone Rogue: My Life With Breast Cancer.” It is available as both paperback and Kindle edition on Amazon.
