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Calling Stage 4 Breast Cancer A Chronic Disease Is Ludicrous

“We have so many treatment options available to treat what you have,” said the first oncologist seeing Uzma upon diagnosis of stage 4 breast cancer, “that these days we manage it like a chronic disease.” The renowned oncologist Uzma saw for a second opinion said the same, as did the one she saw for a third opinion at an institution that is renowned globally for cancer treatment. It’s as if they are trained to read from the same script. It’s a lie.

In doctor-speak, a chronic disease usually means diseases like heart disease, high blood pressure, high cholesterol, diabetes, etc. You get the picture. Every person with high blood pressure has probably heard their doctor say, “High blood pressure cannot be cured, but it can be controlled. You will have it for the rest of your life. But if you take your medication as prescribed, you will be okay.” Some patients with chronic disease get upset at the prospect of having to take medicine for the rest of their lives. But no one with high blood pressure thinks that the rest of their life means 3-5 years.

There may be many treatment alternatives available for Stage 4 breast cancer, but it is nowhere like a chronic disease. Stage 4 breast cancer has a median survival time of 3 years. In other words, half the women who suffer from it die within 3 years of diagnosis. It has a five-year survival rate of 22%, which means that only about one-fifth of the women with this affliction are alive 5 years after diagnosis. At 10 years only about 1 in 10 are still alive. How many diabetics do we know who died within 3-10 years of diagnosis?

And what are those 3-5 years like for those four-fifths to half of Stage 4 breast cancer patients? If they are anything like Uzma’s last 3 years, they are a time of trying one chemotherapy regimen after another while cancer continues its long, unending march. And chemotherapy is nowhere like medications for diabetes, cholesterol or heart disease. It is a blunt tool, a cannon brought to a fight where we should be using snipers — only we don’t yet have the targeting mechanisms for snipers to be effective. We have the promise of immunotherapy just over the horizon, but it remains a mere promise for most individuals with Stage 4 cancer today. Uzma was rejected as a subject for an immunotherapy study at the National Cancer Institute. As I said, we don’t yet have cancer-snipers. So we use cannons. Between the guerilla army that is metastatic cancer, hiding inside one organ then the next, and the cannon that is chemotherapy, there is a lot of collateral damage. The temple that is the human body slowly crumbles before one’s very eyes.

Chemotherapy, depending upon the drug, affects the patient’s skin, her hair, her bones, her brain, her nerves, her heart, her soul. Yet, she keeps taking it because in hope that the regimen could put her in remission. Sometimes, it’s just an elusive dream of few months-long breaks in cancer’s march is what makes a person keep on standing in front of one cannon after another. Eventually, cancer takes over enough organs or enough of key organs that the physical edifice can take no more cannon fire and active treatment is discontinued.

Stage 4 breast cancer does not behave like diabetes, high blood pressure, and heart disease, and oncologists need to stop using the chronic disease metaphor. It is unfair to patients and their families because it creates unreasonable expectations. I think I understand why they use this metaphor. It is probably to provide reassurance so that the diagnosis of stage 4 cancer does not end up draining all hope right from the get-go. But the reassurance comes at a price — one that is paid ultimately by the patient. But, that’s a topic for another post.

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The Hospice Way To A Good Death

My wife Uzma died peacefully at home. She hadn’t taken any painkillers for three days. Our kids, my parents, and I were next to her. In the weeks leading up to her death, she was visited by many old friends. Many new friends, whom she had never met, sent her flowers, cards, food. It was a good death. Yes, for the last five years, cancer and its treatment took a physical and emotional toll. Yes, she left us a lot earlier than she deserved to go. Yes, the kids are young.

Nevertheless, it was a good death. There are few among us who wouldn’t want her end — pain-free, at home, with loved ones near. None of it would have been possible without hospice.

Uzma chose her palliative care physician long before hospice. While Palliative Medicine physicians are affiliated with hospice, they try to improve the quality of life of patients even before the patient ever needs hospice. When Uzma was referred to hospice, I knew what hospice meant — that now the focus would be on comfort care. But I didn’t quite understand then the incredible, warm, enveloping embrace it provides to the dying and their family. A referral to hospice is not a death sentence. The death sentence was the diagnosis of the liver metastases. As Uzma wrote previously, the prognosis of metastatic breast cancer is three years average. Hospice merely ensured a comfortable dignified dying process.

Every single hospice appointment was at home. The nurses who came 2-3 times a week. The doctor who came every couple of weeks. The physical therapist, the social worker, and the chaplain, all came home. They met Uzma in whichever room she was at the time. Though they had their professional tasks to complete, they met with Uzma for only as long as she wanted to.

But for going to the hospital for paracentesis — the procedure of draining the fluid that accumulates in one’s belly when the liver gives out — Uzma wouldn’t have had to leave home at all while in hospice. Upon the recommendation of hospice, the second time they did the paracentesis, they put in a catheter in the belly, a tube through which the nurses showed me how to drain the fluid once a day, if necessary, to keep Uzma comfortable by keeping her belly from distending.

There were no unnecessary interventions. No lab tests whose results wouldn’t change treatment. No medications that wouldn’t provide comfort. One of the first things we received from hospice was a comfort medication kit to use to alleviate symptoms that can accompany dying. They included drugs to help with agitation, anxiety, pain, and respiratory secretions. No running to the pharmacy for medications, either. They were all delivered to home. The physical therapist who came home said his goal was to ensure safety and comfort. So he taught me how to help my wife get out in and out of bed, use the bathroom, sit around and ambulate in a manner that was safe and mechanically efficient, i.e., less tiring for her. As I said, no unnecessary interventions.

Had Uzma needed hospitalization for any reason — say, a condition unrelated to cancer that she would survive with treatment in the hospital — she would have bypassed the emergency room and would have been admitted to a bed reserved for hospice patients. Had I needed respite from caregiving, Uzma could be admitted to a hospice bed at a nursing home for up to five days. And the hospice staff would coordinate and arrange everything. We never had to use these options, but just knowing they were there gave comfort and peace of mind.

Two of the most emotionally essential services that hospice provided was a chaplain and a social worker specializing in counseling children about death and dying. The visits with the chaplain were among the longest Uzma had with any of the hospice professionals. The social worker provided some excellent tips about helping kids. Both the chaplain and the social worker provided incredible emotional support to Uzma and us.

Then there’s the equipment that hospice provides. We already had a cane, a walker, and a wheelchair. But if we didn’t have those, hospice would have provided one or all of those. Eventually, hospice provided a commode so Uzma could go without having to go to the bathroom. But the most important and most used thing that hospice provided was a hospital bed.

Uzma had decided long ago that when the time came for the hospital bed, it would go next to a large window in the living room that faces the front of the house. From our bedroom window, one can only see the back of other homes in our neighborhood, and they alleys separating them. In the front, there are trees. She could see people as they parked their cars and walked up to the house to visit her. Most importantly, she could see our daughters’ bus stop. And watch her board and exit her bus from where the hospital bed. That’s the main reason she had chosen that location for the hospital bed long before the bed came. The second most important reason was that she did not want to die in a bedroom, where people go to sleep. She wanted to die in a living room, where people live and meet.

Hospice was available 24/7 to consult about any difficulties Uzma was having. Those phone calls were always reassuring. When she died on the coldest night on record in Chicagoland, the hospice nurse came within an hour to examine and pronounce her dead. He also called the funeral home to notify them of the death. He gave us a heads up about our next steps that night with the funeral home.

Hospice didn’t stop all suffering. It didn’t stop the pain. But what it did for us was priceless. Without hospice, Uzma would not have died at peace, at home, without pain, and surrounded by family. She would not have died in the room where she wanted to die — our living room.

[If you liked this post, you might also like its companion post How A Doctor Chose Her Last Doctor. Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About 3 months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 178 reviews, all 5-star, on Amazon. This blog is now maintained by the author of this article, Dheeraj Raina.]