“You have cancer.”

How terrible that sounds.
A million thoughts race through your mind.
You have so many questions, but you can’t get them out;
your brain freezes.
The specialists talk of stage, grade, mutations, CT, MRI, PET, risks, benefits, side-effects, survival curves.
You worry about your family, your kids.
Will there be pain?
Will you die?

Test after test ensues, but finally it is time to treat.
You pray the cancer is not incurable, and any prescription
futile.
In the past, your doctor chose the treatment plan for you,
without even a whisper of the word
“cancer.”
Now patients make their own decisions, provided their payer agrees.
Pathways, established by computers, expert panels, government, hospitals, and insurance companies are killing doctor-patient decision-making.
Only when you pay the bill yourself, do you have
control.

I’ve been counseling cancer patients for almost 30 years;
they still want to know what I would do, what I would recommend for my wife or
my mother.
When a “representative” of some sort on the phone or the computer
replaces your private doctor,
be on the lookout for times when the standard pathway may not be the best option,
when you should jump off the trail to find a personalized solution to your problem.

In Cancer Stories, we explore paradigms of cancer treatment highlighted by true patient histories. Some situations reflect conflicts between individual goals and medical norms or between my patient’s desires and my recommendations.

Faced with a fatal disease, do you take a treatment that has only a 10% chance of success?
What about 5%? or 2%?
How do you define “success?”
What about cancers that are not curable? What about toxicity and the risk of
dying from the treatment?

Does age matter?
Does cost matter?
How do we measure
quality of life?

Cancer Stories tackles these issues, not from the macro perspective of
hospitals, payers, government, and society,
but from the micro perspective.

How do elderly patients and their doctors make decisions?

What would you do?

What you'll find on this site

Stories - with each vignette, I highlight a challenge we faced. The stories are mostly about individuals older than 75,  unless there is a particular point I want to make      

Survey -  I'd like to know what most individuals think about cancer treatment in older individuals

Contact us - join our mailing list, ask a question, send in your story, make an observation, or register your support for n of 1 studies

Cancer Biology and Concepts  If you must confront cancer, arm yourself with knowledge; I decided not to re-create the wheel, but I've tried to find the best references available

Book -  An outline of what I plan to include in the book

About the author  - my credentials and experience

A word about privacy

Help support this project


What's the book about?

What? It  isn't finished yet?

These are true stories about some amazing people who fought cancer in different ways. Some won, some lost. All had some difficult decisions to make.

Read the story for each of these patients that I took care of, then think of what you would do if you were the patient, or what you would recommend if you were the doctor, the nurse, a family member, or the administrator.

Should older patients get the same treatment as younger patients?

Does cost matter?

Click below to send me your email to be notified when the book is ready to ship.

Please notify me when the book is available


Please click here to take the survey
It’s only 6 questions long:

How old are you?

At what age are people too old for cancer treatment?

What is the most important factor in whether an older person should receive cancer treatment?

Have you ever had cancer?

Have you ever had a good friend or family member with cancer?

Do you work in the health care field?


A word about privacy

I have struggled to protect my patient's privacy while also maintaining the non-fiction contract according to Tilar Mazzeo, PhD.  She writes: "Nonfiction writers have a sort of contract with readers: We are not allowed to make anything up. We must be rigorous reporters of lived experience. True stories teach us something about what it means to be human and what it means to struggle and triumph in life. True stories introduce us to amazing characters, characters who are all the more amazing for being real." 

I drew these cases from my experience across the United States and over 30 years.  Professor Mazzeo also writes:  "Especially in memoir and autobiography, the line between our lives and the lives of other people is not always clear." These are my stories too, especially as they record my dilemmas about how to treat and my anxieties about being wrong. 

I feel compelled to tell these stories because a discussion about cancer care for older individuals cannot take place wholly in the abstract, but only with reference to specific patient situations. I have decided to tell true stories. Even if the ages are inexact and some of the details have been changed or amalgamated, all of the medical events and treatment outcomes are factual.

Check my blog post here for a further discussion about patient privacy and the Health Insurance Portability and Accountability Act.

About the author

Dr. Mitchell has been practicing Hematology, Oncology, and Internal Medicine in Virginia since 1992. For 7 years he was Assistant Professor of Medicine at VCU and since then has been in private practice. He served on the managment team of a 20-physician single specialty group for 10 years, including 3 years as managing partner.

He has worked continuously over that time developing ways to make medical record keeping more accurate, concise, and to the point, providing benefits to all who might need to access or understand a patient's medical records.

He has participated extensively in review of a variety of cases, including standard of care, causation, and liablity questions. He is expert at analyzing complex and manifold medical issues, boiling them down, providing, whether for medical, personal, or legal purposes, a coherent and concise solution.
In 2017, Dr. Mitchell was recognized as one of the top 8 physicians in metropolitan Richmond by the readers of the Richmond Times-Dispatch.

Since finishing medical school in 1985, Dr. Mitchell has held medical licenses in Maryland, Illinois, Virginia, Montana, Wisconsin, Nebraska, and Michigan.

Support for this project

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I've intentionally kept advertising on the site to a minimum. Instead of a bunch of pop-up ads and videos that slow down the site, there are just a few unobtrusive ads. Check out the items below to show your support.


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NCI Dictionary of cancer terms                               NCI Drug Dictionary

NCI guide to cancer  (start with the patient version, then move on to the Health Professional Version for more details.

If you want to know where all the rules and pathways come from that determine if your insurer will cover your treatment, check out the NCCN Guidelines

UpToDate - a comprehensive medical source

Mrs. B: Multiple myeloma

Two months ago, Ms. B suffered a fracture of her leg. For a woman of her age, that means a 25% risk of death in one year – even without the cancer. I started a mental checklist as I reviewed her history on my way to the exam room.
She was in a wheelchair - not a good sign. Her daughter was with her – that was a very good sign, usually meaning that she was well-cared for. I hoped to get some good information about her activity level, her symptoms, how she was tolerating the therapy, and all that had happened to her since her diagnosis. Her daughter might be a reliable, sensible, and authorized decision-maker. We might make some decisions today and not have to delay or hedge. At 88 she had a steep hill to climb to reach parity with this cancer.
-The rest of the story and what happened


Mrs. P: Chronic lymphocytic leukemia

Mrs. P had very few medical problems until at 83, she passed out because of a cardiac arrhythmia. Her cardiologist placed a pacemaker, President Obama’s recommendation to “just take a pain pill” notwithstanding. She has not had a blip of trouble with her heart since.
She taught me that life in old age doesn’t have to be hell. Despite her myriad scars from skin cancer excisions, Mrs. P is still attractive at age 94. She retains her youthful shape through hard daily work, taking care of her house and her yard by herself. Her chronic lymphocytic leukemia causes leukocytosis, anemia, thrombocytopenia, enlarged lymph nodes, splenomegaly, and immunodeficiency. That immunodeficiency (plus 94 years of sun exposure) has caused her many skin cancers.
-The rest of the story and what happened


Mr. G: Kidney cancer

Mrs. P had very few medical problems until at 83, she passed out because of a cardiac arrhythmia. Her cardiologist placed a pacemaker, President Obama’s recommendation to “just take a pain pill” notwithstanding. She has not had a blip of trouble with her heart since.
She taught me that life in old age doesn’t have to be hell. Despite her myriad scars from skin cancer excisions, Mrs. P is still attractive at age 94. She retains her youthful shape through hard daily work, taking care of her house and her yard by herself. Her chronic lymphocytic leukemia causes leukocytosis, anemia, thrombocytopenia, enlarged lymph nodes, splenomegaly, and immunodeficiency. That immunodeficiency (plus 94 years of sun exposure) has caused her many skin cancers.
-The rest of the story and what happened

The glossary below is designed to help you read these cancer stories. I don't include it with the full story, so the best way to use it is to keep it open on top of your other programs. You can also use the NCI Dictionary of cancer terms.

To keep a window on top of others in Windows 10, download a free little program called DeskPins here, find it in your download directory, then double click to install it.

Next, right-click on my glossary or the NCI dictionary, open in another window, resize the window, then press Control and F12 (CTRL-F12) together to pin it to the foreground.

Now you can scroll through Cancer Stories or other sites and easily click over to look up a word. when you want to unpin the window, Press CTRL-F12 again.

Cancer Biology and Concepts specific to Cancer Stories

Send us a message

UpToDate - a comprehensive medical source

The best review of any medical topic, not just cancer, can be found on the UpToDate website.

You have to pay for quality, though. Save up your quesitons, then sign up for one week of access for $20. Keep open your NCI Dictionary of cancer terms.

Use this site if you want to know what your doctor knows. Many topics have less complicated patient education sections called: "Basic" and "Beyond the Basics".

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Mrs. P: Chronic lymphocytic leukemia

Mrs. P had very few medical problems until at 83, she passed out because of a cardiac arrhythmia. Her cardiologist placed a pacemaker, President Obama’s recommendation to “just take a pain pill” notwithstanding. She has not had a blip of trouble with her heart since.
She taught me that life in old age doesn’t have to be hell. Despite her myriad scars from skin cancer excisions, Mrs. P is still attractive at age 94. She retains her youthful shape through hard daily work, taking care of her house and her yard by herself. Her chronic lymphocytic leukemia causes leukocytosis, anemia, thrombocytopenia, enlarged lymph nodes, splenomegaly, and immunodeficiency. That immunodeficiency (plus 94 years of sun exposure) has caused her many skin cancers.
--------
Two years of oral chemotherapy caused her no side-effects, and shrank her lymph nodes from 3 cm to 1 cm. She has not required additional treatment for 3 years. The residual adenopathy in her neck and under her arms does not bother her. She comes for a checkup every three months, always by herself.
Many oncologists believe in continuous treatment for patients with chronic, incurable cancers, hoping to maximize survival time. I believe in the opposite. The art of oncology is to use as little treatment as possible. The best time for a cancer patient is that time without symptoms of the disease, without side-effects of treatment, and without the reminders of cancer: a port, pills, office visits, needle sticks, CT scans, hair loss, and incessant worry. Timing is the key: delay treatment as long as possible, but start before disaster strikes and stop before the treatment causes more misery than the disease.
Despite the immunodeficiency from her leukemia, Mrs. P has avoided infections. Just once, when she was 92, having fallen ill with fever, confusion, and weakness from a urinary tract infection (UTI), she required hospital admission for 3 days. She said it was the first time she ever felt old. She soon regained her energy and still has not moved into assisted living.
Many times I’ve seen older patients admitted to the hospital after a fall with confusion, weakness, and fever. With no make-up, dentures out, confused, and bruised, it looks like the end: time to call the hospice team and let her fade away. But the next morning, after a single dose of antibiotics, I find her sitting up in the chair with her morning coffee reading the paper. In our zeal to get the elderly to confront their infirmity and mortality, we must never forget the simple things like UTI’s

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Mr. G: Kidney cancer

“I don’t think I need any treatment right now. I feel fine.” Mr. G had a remarkable way of dispensing with worry. I wish I had that ability. His wife lacked it too. She did the worrying for both of them. Recovered from his surgery, Mr. G was eating again and back on his feet, free of pain.
Mr. G had presented to his physician with back pain, the most common reason to consult a physician in the United States. He had much more than just back pain, though: a 10 pound weight loss, anemia, and hypercalcemia. Wisely, his physician ordered an MRI, which showed a herniated disk and a 15 cm kidney mass.


The surgeon suspected that Mr. G might have disseminated cancer, so he ordered a CT and referred him to me. The CT showed 4 small nodules in the lung and some small lymph nodes in the porta hepatis. These lesions were too small to biopsy without surgery, and he was sick from his primary tumor. The kidney mass, which I could feel bulging in his side, and not the small herniated lumbar disk, was causing his pain.
Until 2005, we had two treatments for kidney cancer: surgery, for tumors confined to the kidney and highly toxic immune therapy, for advanced disease. Small kidney cancers are easily cured with surgery, often without even removing the whole kidney. But before surgery, a few wayward cells can spread throughout the body, taking from 1 to 20 years to grow large enough to cause trouble. More surgery may eliminate a troublesome metastasis and buy time before the next recurrence, but multiple metastases occurring at diagnosis or soon thereafter spells doom.
Reports that metastatic sites may shrink after removal of the primary lesion imply that the immune system might be activated in kidney cancer. Years later, it was shown not to make a difference in survival to remove a primary kidney cancer in a patient with metastatic disease, but. Back then, we believed that theory. Moreover, the primary tumor was largely responsible for making him so ill, a good reason to perform surgery. The tumor’s large size necessitated removal of the entire kidney, fortunately with no complications. Mr. G was free of cancer for about a year. His anemia and hypercalcemia resolved, as did his pain. He felt well and therefore saw no reason to embark on a toxic trip with interleukin-2 (IL-2). So we watched and waited.
Interleukin-2 stimulation of the immune system can cause cardiac, pulmonary, and renal failure. Treatment must be given in the ICU. I used to say “the immune system has a 200,000 year history of failure against cancer.” The presence of a clinically detectable cancer implies failure of the immune system to defeat it. When I was in medical school in 1985, the surgeons were testing the idea of immunotherapy by grinding up patients’ melanoma tumors and re-injecting the cells along with immune stimulators to try to create a vaccine. A clinically and commercially viable product has never been discovered. Different types of immunotherapies have been developed in the last 20 years: antibodies to certain kinds of cells or the checkpoint inhibitors, nivolumab, pembrolizumab, atezolizumab, ..., and ... For 20 years, for kidney cancer, all we had was IL-2.
In the hands of experienced physicians and nurses with standardized protocols and close monitoring, IL-2 can be given safely, as long as individuals with baseline significant cardiac, pulmonary, and renal disease are excluded. The treatment causes leakage of fluid from the blood through the capillary wall into the tissues, resulting in elevation of the creatinine, hypotension, leg swelling, pulmonary edema, and overworking of the heart with possible arrhythmias or ischemia. The treatment schedule is 5 days of treatment, repeated every 2 weeks for 3 cycles if the patient recovers from toxicity each time and does not progress. Ninety-two percent of patients with metastatic kidney cancer given high-dose interleukin-2 will relapse and die of their disease in 2 years. However, high-dose IL-2 will induce a complete remission in 8% of individuals treated. The graph shows the dramatic difference in long-term survival for complete responders compared to those who have only a partial response, stable disease, or progression. The downside is that 100 patients must be treated with this regimen to obtain a good long-term response in 7. Here is how the authors of a review of 250 patients described it:
IL-2 survival curve.png
“There were 2 treatment-related deaths during the time period of the current study. These occurred early in the course of our experience and there has not been a death related to HD IL-2 toxicity in a patient with RCC reported in 20 years. Hematologic toxicities were generally limited to Grade 1 and Grade 2 and included decreases in serum hemoglobin, leukopenia, and thrombocytopenia...Because of the capillary leak syndrome, vasodilation, and diarrhea that HD IL-2 therapy can cause, patients often experienced hypotension and oliguria. Confusion and a depressed level of consciousness were among the other major grade 3 and grade 4 toxicities.”
I talked to Mr. G at length about this treatment option over many visits early on in his course, and he always declined to go for a consultation. I may have scared him away with my description of the toxicity.
Eighteen months after Mr. G’s surgery, a CT scan disclosed a new retroperitoneal metastasis--not large enough to cause pain or pressure on an organ, but a harbinger of the fear and misery to come. The lung nodules and the porta hepatis nodes did not grow, and never have. We requested a CT-guided biopsy to prove that he had metastatic disease. We weren’t sure that the pulmonary nodules or the nodes in the porta hepatis represented cancer, so we could not rely on them as bell weathers of response. This small retroperitoneal mass would shrink or go away if systemic treatment was working well. At that time we had 4 treatments for metastatic kidney cancer: temsirolimus, a molecular inhibitor of the mTOR pathway , sorafenib, a small molecule inhibitor of vGEF, bevacizumab, an inhibitor of new blood vessel formation, and high-dose interleukin-2 (IL-2). Standard chemotherapy drugs are of no benefit in renal cell carcinoma.
We treated him for 8 weeks with temsirolimus and the disease was merely stable--no shrinkage and no growth. Because this spot was the only proven metastasis, we decided to remove it like we had the primary tumor. Recognizing this was a long shot, we did it anyway, hoping for a long disease-free interval. During the operation, the surgeon found and removed another metastasis in the abdomen. After surgery, since he had no definite response to the temsirolimus and had suffered a severe rash, we elected to observe him until progression.
Eight months later, we found cancer in his liver. The time for surgery was over. Bevacizumab, an antibody to vascular endothelial growth factor (VEGF) that inhibits new blood vessel growth, kept his cancer was stable for 8 months before it progressed. Sorafenib, an oral agent that works by different mechanism, inhibiting EGFR (?) kept his cancer stable for only 5 months, before it progressed. When cancer progresses after just 2 months of therapy, there was probably no benefit. Subsequent therapy that brings stability for 4 months or more, surely is beneficial.
Newly developed axitinib also blocks the effects of VEGF. A small molecule, rather than an antibody, it inhibits 3 types of VEGF receptors. Mr. G took this drug for 2 years, with good control of his disease and good quality of life.
After two years, his cancer spread to the right lung causing cough as it blocked his right lower lobe bronchus. The FDA had recently recommended a novel molecular agent called cabozantinib for fast-track approval in kidney cancer. Despite this, we could not get it approved, so we selected the one approved drug he had yet to receive, pazopanib. Mr. G was still going strong, up and active with a performance status of 0 and very young in my book at only 65; he remained a good candidate for treatment, though he still did not want to consider IL-2. He was having some exertional chest pain, so I ordered a stress test and cardiology consult. Before that could be accomplished, he developed severe chest pain and was hospitalized with stenosis of 3 of his coronary arteries. The cardiologist placed two stents, and his chest pain disappeared. After 5 months of treatment with pazopanib, his disease progressed and we were forced to switch therapy again.
Finally, scientists had figured out how to manipulate the immune system to fight cancer. Previous immunotherapies had proven useful in specific diseases, such as rituximab, a B-cell antibody, for lymphoma and trastuzumab, a HER-2 antibody, in breast cancer. Nivolumab, one of a new class of antibodies against the PDL-1 receptor on T-cells called checkpoint inhibitors, held the promise of activity in many cancers. These agents do not kill cancer cells directly like chemotherapy drugs, nor do they bind directly to receptors on cancer cells like rituximab and trastuzumab, but instead, they bind to a receptor on T-cells. (See the description of checkpoint inhibitors in the CS glossary). He tolerated the nivolumab without difficulty, except for hypothyroidism, easily treated with one pill per day. Side-effects (list in glossary) can be serious or even fatal, but fortunately they are rare and most patients tolerate the checkpoint inhibitors quite well. Unfortunately, he had only a brief response, and after 6 months his cancer progressed.
Cabozantinib was now approved by the FDA. It is a small-molecule tyrosine kinase inhibitor that targets VEGF. It also inhibits the MET and AXL genes, which are associated with resistance to VEGF inhibition. Though he suffered a significant rash and malaise, requiring a dose reduction for much of the time he took the drug, it controlled his cancer for 2 1/2 years. Eventually he progressed primarily in the R lung with airway blockage, chest pain, and cough, putting him at risk for post-obstructive pneumonia and progressive pulmonary compromise.
I decided to ask the radiation oncologist to treat the large mass in the right hilum in hopes of reducing his symptoms and pain and cough and preventing or delaying progressive lung collapse, shortness of breath, and pneumonia. A secondary aim was to stimulate presentation of tumor antigens to the immune system in the hopes that immunotherapy might work better. He had already failed immunotherapy, but there was a new combination that had been approved for kidney cancer that I was considering. He tolerated the radiation well with no complications. Afterwards we tried another new drug, levatinib, an inhibitor of VEGFR, RET, and fibroblast growth factor receptor kinases 1 to 4, in combination with an older drug, everolimus, a cousin of the very first drug I gave him 9 years ago. Unfortunately, he did not tolerate this combination at all, with malaise, rash, itching, and diarrhea. We tried just one of the medications and he could not tolerate that, so we stopped.
Researchers have taken immunotherapy for kidney cancer a step further by combining nivolumab plus ipilimumab, a checkpoint inhibitor that works at a different site than nivolumab. This combination is effective for melanoma and lung cancer. The combo is more toxic than nivolumab alone, but dramatically better compared with the standard drug for newly diagnosed patients, sunitinib. Indeed, even though there is potential for serious toxicity, overall the quality of life for patients receiving the (intravenous) immunotherapy was better than for patients receiving the oral sunitinib. At 18 months 75% of patients were alive with the immunotherapy versus only 60% with the sunitinib. However, this new combination is by no means a panacea for kidney cancer. By 8 months half of the patients in both groups had already progressed. Eight patients died of toxicity in the immunotherapy group versus 4 in the sunitinib group.
These results demonstrate several issues in cancer treatment. 1) progress is slow, even when a new treatment is statistically superior to an older one, the clinical benefit is usually modest--new treatments are rarely home-runs; 2) treatments always have cost in terms of quality of life, risk of death, and money; 3) clinical trials are designed to answer specific questions, but they always leave many others unanswered. For instance, is nivolumab/ipilimumab superior to nivolumab alone? What is the chance that a patient previously treated with nivolumab will respond to the combination? Might a patient for whom one drug failed 4 years ago now respond to that same drug in combination? If a treatment works for newly-diagnosed patients will it work for previously treated patients? Would the intervening treatments have any impact, positive or negative? Not knowing the answers to these questions, we nevertheless decided to proceed with nivolumab/ipilimumab combination therapy.
I saw him 3 weeks after his first cycle of immunotherapy; he was doing fine; no complaints; we decided to proceed with cycle two that day. By report he did well with the second treatment. His symptoms of cough, fatigue, and modest chest pain were stable. Eighteen days after cycle II he died suddenly at home. His wife described to me his last hour of life. He didn’t feel well; he was a little confused; he was not in great pain or terribly short of breath. By the time anyone realized just how sick he was, it was too late. He suffered a cardiac arrest, and the paramedics could not revive him.
I don’t know why he died. He had cancer. He had heart disease; he was taking a risky combination of drugs. Did he have a myocardial infarction unrelated to the cancer or its treatment? Did he have a blood clot in his lung because of the cancer? Did he bleed into his lung because of the cancer? Was he one of the very rare patients with an immunologic reaction to his heart? We’ll never know, but in retrospect, both his wife and I feel that it was his time. His cancer was progressing, and we had run short on effective therapies. He had already cheated death from cardiac causes once, having had 3 stents placed in 2015. He had cheated death from an incurable cancer for 11 years. We had done everything we could for him. He is in a better place now.

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