Prostate cancer diagnosis

My cancer journey took a hard turn last summer when I learned I had prostate cancer. Less than two years after being diagnosed with a rare cancer, a gastrointestinal stromal tumor also known as GIST, I get diagnosed with the most common and prevalent cancer among men in America. And this prostate cancer was the type that required prompt treatment, either surgery or radiation. After comparing the pros and cons of the different treatment options we decided on surgery, a robotic radical prostatectomy. “Robotic” and “radical” are both strong words. Adding to the dramatic nature of prostate cancer treatment, the name of the robot is “Da Vinci.” Fortunately, Da Vinci is only the assistant. A highly trained human surgeon controls the Da Vinci robot as it removes the prostate gland with the cancer inside it and surrounding lymph nodes.

My surgery went smoothly and after a one-night hospital stay I went home to recuperate. With the support of my family, especially my wife Jan who just happens to be a great and highly skilled nurse, recovery was uneventful though not much fun. Nine days later we returned to the doctor’s office to have the urinary catheter removed and get the full post-operative pathology report.

Having spent considerable time in different doctors’ offices, I’ve observed interesting—many obvious—characteristics about myself and fellow patients in the waiting room. The social experience of observing others and being observed in these settings fascinates me. Maybe it is one of the reasons I worked in news for so long. And the anxiety of sitting in a medical waiting room, perhaps about to receive potentially life changing test results, presents itself in ways both subtle and dramatic.

On this particular morning, in a large urology practice’s modern, minimalist waiting area there are several men in their 60s and 70s wearing loose fitting comfortable clothing accompanied by their wives or mostly female companions. I am one of them. While the sex and age range of these men are homogeneous the racial and ethnic make-up of the group is diverse. We are blacks, whites, Asians and Hispanics all here because something in our bodies needs the attention of a urologist.

After a brief wait, they call my name. The medical assistant greets me and she measures my height, weight, and blood pressure (running a little high his morning). After a short walk to an exam room we wait for the nurse practitioner—not the doctor today--who will appear shortly. When he enters the room, I am reassured; I am in good hands. The NP is someone who is a specialist in male urological cancers with a friendly, reassuring bedside manner. After the business of removing the catheter—oh what a relief it is—we get the results of the pathology of my cancer. And the news is good. The cancer was all within the prostate, no spread detected outside the gland itself. Ninety percent of the cancer was classified as low grade, the least aggressive form. The remaining ten percent of the cancer was in the moderate range. In the parlance of those who understand Gleason scores it was a (3+4) 7, generally considered to have a good prognosis.

Relieved by the favorable pathology and catheter removal, we head home. The cancer journey is a relentless marathon. More tests and follow-up in the weeks, months, and years ahead. We are grateful for love and support and a manageable prognosis.

With two different cancer diagnoses in under two years, my first reaction to the prostate diagnosis was “I’m tired.” That passed quickly and determination to get treated and healthy took over. I am one of the lucky ones. So much pain and sadness for those whose illness, be it cancer or something else, has harsher consequences. With that in mind this holiday season, I hope and pray for the health and healing of those who need it. I thank those of you following my journey for your love and support.

To be continued.

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Don't let "managed care" manage your care!

I was playing tennis with my friend David on a beautiful San Diego summer morning when the phone rang. We usually ignore our phones on the tennis court, but with medical appointments pending and the need to get treatment scheduled, I decided to stop and take the call. A nurse from our health plan was calling to tell me the HMO had turned down my request for an “out of network” second opinion. Instead, they scheduled an appointment with a surgical oncologist within their own group. Disappointed, I explained that the surgeon I found for a second opinion was a nationally known expert in the type of rare cancer the HMO’s own top gastrointestinal cancer surgeon believed I had, a GIST or gastrointestinal stromal tumor. We had already scheduled an appointment for the following week with the out of network GIST expert.

Before I go further a disclosure, a confession of sorts. For some reason being turned down for an appropriate second opinion upset me out of proportion to the real effect of the denial. Until the HMO informed me it would not pay for a second opinion outside of its network I had been doing pretty well. I was managing my emotions and staying focused and positive. The cost of the second opinion was just under four hundred dollars. We could pay for it if we had to. But that was not the point.

When I went home and checked on the HMO’s in-network choice for a second opinion I found out he was, indeed, a board certified oncology surgeon. But his principal expertise, experience, and practice were in treating breast and thyroid cancers. So I called the HMO’s nurse back and asked who was responsible for denying the outside second opinion. I asked if it would it be possible to speak with that person. She told me it was a physician and gave me her name. The nurse said she would set up a phone call for me to talk directly to the person responsible for the denial.

Doctor “no” and I spoke later that week. It was a conference call that included the doctor herself, and other members of the HMO staff. My wife, Jan, also joined the call. It became clear quickly that the HMO would not change its decision. If I wanted a second opinion out of network I’d have to pay for it. My emotion and indignation grew more intense during this short phone call. How could they not see the absurdity of referring me to a breast and thyroid surgeon for a GI tumor? And I asked repeatedly, why didn’t they want me to see a doctor with expertise in the cancer I likely had? The conversation was going nowhere fast. My wife wisely suggested we end the call. I was informed I could appeal the decision but the doctor who turned me down would not change her mind.

I appealed the denial through the HMO’s own system and was turned down twice. I wrote emails to the CEO of the healthcare organization of which the HMO is a part. Although gracious in his replies, the CEO would not intervene. He said it was a clinical decision and that he, who is not a doctor, did not get involved in clinical matters. I told him I respectfully disagreed; it was not purely a clinical decision but was also a business decision. In the end, the HMO did pick up the bill for the second opinion with the doctor who would wind up taking over my care. But it took an appeal to the California Department of Managed Health Care to get the HMO to do what it should have done from the start. Now it was clear, time to change insurance.

To be continued.

My experiences are in many ways different from what others with cancer endure. This is one patient’s experience, nothing more.

Finding the right surgeon

The radiologist’s report described the “mass” in my belly as “well-circumscribed,” possibly a benign tumor but it also said “malignancy” could not be excluded. Our next move, visit the respected gastrointestinal cancer surgeon affiliated with our HMO. My wife Jan, a nurse with nearly 30 years experience in the same healthcare group as the surgeon, had checked around. We heard good things. Consistent with those reports, we found  Dr. B to be a gentleman with good bedside manners, knowledgeable, and by all accounts a fine surgeon. After a thorough physical exam we walked over to the doctor’s computer and looked at the CT scan pictures. He showed us where the tumor was attached to the outside of my stomach and told us he was quite sure it was a gastrointestinal stromal tumor or GIST. The surgeon’s assessment was more definitive than the radiologist’s and contradicted the radiologist who had indicated the tumor was between the stomach and liver not attached to the stomach. We would still need a biopsy to confirm the diagnosis but we were ready to hear the surgeon’s treatment plan based on his belief we were dealing with a GIST.

Because the tumor was about five centimeters in size, the doctor told us I would need to take a pill everyday for about three to six months in order to shrink the tumor. When the tumor was smaller, he said, it could be removed using a laparoscope. That’s a minimally invasive procedure with a speedier recovery than getting cut open. But he wouldn’t do the surgery himself. Instead, he would supervise a younger doctor with more experience doing laparoscopic operations. And, trying to reassure us, he said if the minimally invasive approach weren’t going smoothly, he would step in and switch to the open procedure. This was not what we wanted to hear. And we still needed to get a biopsy. Time for a second opinion.

I talked to an old friend who is a highly regarded oncologist at the University of California in San Diego. My conversation with her was eye opening. First, because I had a benign spinal tumor 19 years earlier and that type of tumor—a schwannoma—was mentioned as a possibility for this tumor, I was deluding myself thinking this one must be benign too. After all, some GISTs are also “low risk” or benign. Wrong approach. Our friend the oncologist told me in no uncertain terms to get moving on surgery. She gave me the names of three doctors to contact for a second opinion. And, she told me to get a surgeon with specific experience treating tumors in the upper GI area where mine was located.

We often use bellicose language when talking about cancer. It is a fight, a battle, war. And based on my own experiences and those of many we know who’ve fought the fight and continue to do battle, the terminology is appropriate. But it’s not just the bio-medical combat with the disease; there are financial and administrative skirmishes that are another front in the war on cancer. We had our first encounter on that front when we went for a second opinion outside our HMO network.

To be continued.

My experiences are in many ways different from what others with cancer endure. This is one patient’s experience, nothing more.

Living with cancer

I have a rare cancer described by doctors as “high risk.” As bad as that sounds, it’s not as bad as it sounds. Thanks to a targeted cancer drug called Gleevec (generic name is imatinib) my “high risk gastrointestinal stromal tumor”--or GIST--has a pretty good prognosis. A very expensive pill I take every day is designed to keep the cancer away.

Small indolent GISTs are considered benign. Not mine. Based on a number of criteria, including size of the tumor and mitotic rate (check your old biology text or follow the link), my GIST was cancer. Diagnosed almost two years ago, surgeons at the University of California Moores Cancer Center in San Diego removed the tumor along with part of my stomach in September of 2017. It’s taken me this long to report about my experiences living with cancer because it’s been difficult to write about. I keep asking myself, will what I have to say be meaningful to readers? With that in mind and the passage of time I believe I have enough experiences and insight to share my observations. I hope by telling this story it will contribute to better understanding the dreaded diagnosis of cancer.    

The first question I’m often asked is what led to my diagnosis. The short answer is Mexican food. I started having chest pains one evening after attending an afternoon charity fundraiser where they served some of the most delicious tacos I’d ever eaten. So, in the words of one my doctor’s notes, “After dosing with tacos (patient) experienced chest pains and went to the emergency department for evaluation.”

When you show up at the emergency room complaining of chest pains they don’t make you wait. I was rushed immediately to the treatment area and hooked up to an EKG. After four hours that included a chest x-ray, blood tests, a thorough examination and medical history, the ER doctor told me my heart is not the problem. “Follow up with your internist,” he added. So, over the course of the next two weeks I was referred to a gastroenterologist who ordered an abdominal ultrasound that revealed a “mass” growing somewhere in the neighborhood of my pancreas, liver, and stomach. Needing a clearer picture of what was growing inside me, the doctor ordered a CT scan of the area for a better look.

A few hours after my date with the scanner, the doctor called to tell me what the scan showed. The most encouraging words on the radiologist’s report were that it did not appear the mass was on or within the pancreas. But an actual diagnosis would require more tests, specifically a biopsy to find out what type of tumor was growing in my gut.

To be continued?

If you find this interesting and want to read more about my experiences with cancer please let me know. If you think this will be helpful to others, share it widely. Based on your responses I will decide whether or not to continue reporting my cancer chronicles. Topics I hope to cover include the psychological, physical, and financial demands on cancer patients and their families. Of course, my experiences are in many ways different from what others with cancer endure. This is one patient’s experience, nothing more.

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2019, off and running!

New beginnings for the New Year, 2017 ended with twin grandsons—joy of joys—and the realization that as a newly diagnosed cancer patient some things would be different. 2018 was adjusting to new realities in grand parenting and health care. Now adjusted, we begin 2019 refreshed. Grandsons are one year old and the lights of our lives. Cancer treatment is going well and tolerated so far with minimal side effects.

The state of the nation and world are another matter. Living 15 minutes from the world’s busiest land border crossing we see the effects of mean-spirited and destructive immigration policies first hand. Many we know have been volunteering to help the asylum seekers navigate their way during a difficult time. There are no easy answers, but have the hardline policies of the current administration really helped anyone? Your answer to that question may depend on your politics. But the judgments of history will not be kind to those who fail to support the most vulnerable in their time of need.

I post this (originally on Facebook) reluctantly because we’ve learned over the last ten years that political postings on social media tend to upset people. Some choose to ignore the political posts; others challenge or just “like”. Promoting respectful dialogue is a positive value and my wish. Inspiring hostile reactions is disappointing but an integral part of social media. If the medium is the message as McLuhan asserted, social media is a bar fight interrupted by savoring the “friendships” whether deeply rooted or just a passing good feeling.

So that’s it for now from the lower left corner of America’s map. Wishing everyone a good year ahead. Stay focused.

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