Thomas Arno, M.D., F.A.C.C.

Today I rang the bell signifying the end of chemotherapy. It felt good. With 2016 wrapping up, it’s hard to believe what a year it has been. A memorable one would be an understatement. Never in my life with my genetics did I worry about cancer. In the back of my mind, I knew my dad had prostate cancer in his young 60s, but my PSA's has always been normal. Even in June it was 3.0, which is normal.

Nevertheless, a voice in my head told me to be careful. So I saw my urologist. We talked, and he ordered a PHI, which is three tests in one. Off-the-chart abnormal. No active surveillance for me. I got a biopsy. I felt so special, but honestly with my medical luck plus a voice telling me “I will be with you” (the same voice in 1996, 2005), I knew. The rest is history, except this was an extremely aggressive tumor. Unfortunately, it had already spread to stage 4, which is incurable. That was July.

I have had dual chemotherapy with Taxotere and Lupron, and I can tell you I have been put through side effect hell. My wife, my rock, my support, my close friends, my colleagues, R.N. and M.D.-wise and former patients offered prayers...I cannot tell you how much that meant to my family. Nevertheless, I want to be honest (you can read my book 

… Amazon and Westbow press are the best deals) you will understand what I have been through since 1996. The chemotherapy gave me bone pain so severe that some days I cried and could not get out of bed. My mind took a hit with "chemo brain" where memory and cognition were adversely affected. However, the two major problems were incredible fatigue and isolation, which will affect any human. My immune system shot to hell for a few weeks, as Taxotere was on a 21-day cycle. If your sagacious, you have already figured out I get my dose just as I start to feel well, and then get knocked down again. That was depressing and very hard on me.

So today, my doctor suggested I have 35 treatments of radiotherapy. Why? On pathology, after my prostatectomy, one node was positive with a tiny bit of cancer. Chemotherapy does not attack seeded nodes. I promised him I will see our radiation oncologist, but as an M.D., I have called many of my friends who told me that I am the one in a 1,000 to one in a 100: prostate-confined disease with nodal involvement. NO ONE really knows how best to treat this.

Chemo No. 5 was terrible, as I became septic on day seven with my temp hitting 103.8 and I was somewhat disoriented. It drained me; of course it was Thanksgiving when my kids were all home. They were great and understood as all three are in the medical field.

I'm done today, and rang that bell. I will go back to a more normal life with extensive monitoring, praying that my markers say at zero, my hair comes back and I lose the weight I gained. I worry, if the markers bump, (current PSA less than 0.004) that God will not let them. I pray twice a day for my friends who have prayed for me and helped me, including ones I have known for over 30 years, 40 years and 50 years. I try to stay positive, but I'm human, and there are rare days I do cry because I’m worried about my family fending for itself. I truly believe I will be fine. My strength comes from God who tells me not to worry about anything and pray for everything. I do.

My doctor still wants me to have 35 radiation treatments, and I will see the radiation oncologist again. Here is where philosophy comes into play. When is enough, enough? It’s individual. I have had health issues since 1996, including a rare central nervous system vasculitis (305 world-reported cases) and an episode of a near-death experience from this in 2005, not to mention dozens of two-to-five-day admissions for sepsis, shingles and on the list goes from my tamped down immune system to keep the Susac syndrome in check. This is all outlined in my book, but I, Tom Arno, the human being just like you, have had enough.

I will listen and make an informed decision as I always do. There are early and late side effects, some quite serious. I have prostate confined disease with a positive lymph node. That makes me stage 4! Here we are, six months later, finished chemo, and does anyone really know if there are any cancer cells in my nodes? And if so, which nodes? No one knows, so we Chernobyl the entire pelvis! “They do not!” said several world-famous oncologists I called and talked to. There is no right. There is no wrong. The guidelines say "CONSIDER radio therapy,” not DO or MUST HAVE radiotherapy.

I have a lot to be thankful for, people that care, family, former co-workers, high school buddies, ICU and telemetry nurses that write me, most I worked with for years. If I could hug you all, I would. I will keep you posted if anything changes. I decided early on to be honest and write about very personal data because of the misinformation on prostate cancer and PSA, not for ego, not for attention. I know for a fact that many cancers have been picked up because of these articles, and for that, I am grateful.

I rang the bell today, I am in remission, but as you can see, the battle is not over.

Articles

I Rang the Bell, But the Cancer Battle Is Not Over

Editor’s Note: This piece was submitted by a contributing writer and does not represent the views of CURE Media Group.

 Sunday, 12-4-2016, I sit with my dog and write my cancer blog. I have no idea who reads these, but given the email yesterday, I'm gathering quite a few people do. People wonder how long it takes to write a page or two? My mentor, who is a professional author, can tell you how long one page takes! My book took nine to 10 months and is 140 pages. It’s on sale now and called “Self Examination.” Yes, shameless self promotion is not beneath me. When you finish reading this, you will know why this is a critical book to read for your education as a patient.

Well here we are Taxotere treatment number five day seven. Last chemo will be Dec 12. Chemo no. five had just been one big pain in the rear end! I was warned, from day two to just about day 14, I had severe side effects. As I just noted, I was cautioned by three others —  treatment five of Taxotere will be the worst. Everything felt doubled— fatigue, bone pain, no appetite, on and on one can list. To me, that made no sense. If cumulative, treatment six would be the worst.

Looking at Thanksgiving week, having family here with guests was great! Seeing my family where the youngest is near 30 it is beyond fantastic. Add my wife's cooking and I'm in heaven. Mood-wise, I am OK. Sunday morning starts off with a whimper...great, but feeling warm and a bit chilled. I grab the thermometer to see my temp is 99, which is no big deal. Day seven counts are headed south, so I'm used to this neutropenia-induced temperature. Unfortunately, this is not the case. By noon, my temp is 101, and I am chilling at 101, and by 4:00 p.m. 101.6.

So, I called the doctor. He places me on Tylenol and Levaquin, a fluoroquinolone, all by phone. This is why I wrote a book — I would have examined the patient. I felt terrible; it was disturbing as this was new. Barb, my wife, took one look at me and knew, and she called the doctor. I would insist on examining a patient like myself, but those days are gone.

So off to lie down. My dreamland was interrupted by rigors and a temp of 103, then 103.8. I call the doctor on-call who tells the nurse to tell me to see my doc in the morning (it is 11 p.m. at this time), take more Tylenol and one more Levaquin. I was not impressed. I'm going to leave it here as to be blunt what I said: it’s definitely not what I would do. As noted, I would examine the patient, given I am neutropenic. Neutrophiles are the white cells that fight infection.

I saw my oncologist at 8:15 a.m. Blood cultures were drawn, CXR taken. He commented that all of this should have been done last night at 11:30. I agree, but I could not get by the nurse. I did voice my displeasure. Welcome to 21st century medicine.

My labs showed an infection that results in most people being hospitalized! I could have had gram negative sepsis, when a certain bacteria produces toxins and lowers blood pressure; it can be fatal. My blood pressure in the docs office was 100/60 — normal, but 20 points lower than my normal. By morning, my temp was 98. I had no memory of Sunday. I did receive fluids and two IV antibiotics in doctor’s office. With one more temp spike, I would be admitted! Since my temp was 98 and after fluids blood pressure 125/75, I felt better. I did go home, but I will be taking my temperature every two hours. If I have any temp, any rigor (chill), I will be admitted, PERIOD.

My temp never went up again, but it drained me. Add company—I was so happy to see my kids, I just had zero energy. Everyone in my family is in the medical field, my son M.D. Ph.D. soon, and was aghast by the care. I'm not going to tell you what the blood cultures grew, but I'm furious at the care; my doc was frantic. For the rest of week, I just slept and woke up greeted as many people as I could. All my kids wanted me to rest, so old baldy, did that and feel asleep in a chair I think in mid-sentence. Anyhow, here it is Sunday. I have no memory of the prior Sunday or Monday, other than seeing doctor. My wife did tell me some of the words and sentences I tried to say&mdash;clearly I was delirious. This week definitely feel better, but I was warned, chemo five will be hard; they were correct. I never want to go through a temp close to 104 with delirium, loss of memory and God knows what else I did making my wife's Thanksgiving a memorable one, and not positive.

Why did I, an M.D., write my book "Self Examination" which is very hard on medical establishment? Events like Sunday and Monday should not occur and be cured by phone. I was lucky. It's why I always put my patient first, even ahead of family. Please read it if you’re a patient......it will answer many of your questions. You’re the patient; you are the boss, always remember that. I should have been more forceful to be seen, but being so ill, I did not have the energy.

What to Do When You're Sick After Hours

I often hear people ask, “How can I help my doctor” or “What can I do?” Well I have an idea. I will admit, it’s very self-serving but every penny that I get I will turn over to the American Cancer Society.

If you have read my articles, you know that I have stage 4 prostate cancer. I have had my prostate removed and I am undergoing chemotherapy.

Last year, I began to write a book about physicians and what they go through in training and in life. This plays a large part on how medicine is practiced, and is mentioned in my autobiography, “Self Examination: What You Will Never Know About Your Physician.”

The doctors are the same. I did not know when I was writing this book that I also had cancer. In fact, the book never mentions cancer until the end.

You will learn about my formative years, love of science, the eidetic memory on all science and the fact I wanted to be a physician at age 9! Yes, age 9, my book details all of this. The book also discusses my tremendous empathy for others and why I have that strong feeling.

I go into my medical school training and my residency, where the love (or at times dislike) for patients can be formed. If you read more, you will see why I picked a small town to practice in and ended up running a 16-bed ICU/CCU. Sounds very ego-serving, until you read about the rare autoimmune disease I contracted at age 45, cutting my career short and causing a near-death experience in 2005. Here, I devote an entire chapter to what I felt, saw, heard and why I deeply believe in God.

Keep reading and I will tell you about my 45-year-old patient who had a cardiac arrest and then was resuscitated, telling me he went to hell, not heaven. He description of hell was bone-chilling, much like Dante's Inferno, plus very believable.

In fact, he turned his life 180 degrees around to help others. This character had committed many mortal sins and wanted to see the priest before he left the hospital! He asked me to stay for confession (which I did not do) but explained why. He moved out of town a year later, but came by my office with a hug, and thank you for "saving his soul.” I explained to him that I did help, but he saved his own soul with God, not me.

I just hugged him back, shook his hand and went into my office. I closed the door and wept. I was overcome with emotion. Who would not be!

The book was very hard to write, as I had to remember, recount and confront my own demons, which I will not describe here. I retired at age 56, not by choice, but by illness. All this is written about in great detail. I am extremely specific and hard on my issues, illnesses and experiences, as well as being tough on my colleagues. What my profession does for money is sickening.

I hope my book explains why when you see your doctor, don't expect Marcus Welby!

How Can I Help My Oncologist?

As I told you, I had prostate cancer with a normal PSA. I began chemotherapy recently and was given all the information about side effects, including chemo brain. Sounds like something out of a sci-fi movie, doesn't it? Chemo brain is an actual diagnosis or state of mind one gets if they are on chemotherapy, hence the term. There are many other causes of this kind of fogginess, such as radiation to the cranium, hormonal manipulation, immunotherapy and even stem cell usage can cause it. To be more technical and descriptive it is cognitive dysfunction usually caused by chemotherapy in cancer patients. 

The main symptoms can include the following: being unusually disorganized, confusion, difficulty concentrating, difficulty finding the right words, difficulty learning new skills, difficulty multitasking, fatigue, feeling of mental fogginess, short attention span, short-term memory problems, taking longer than usual to complete routine tasks, trouble with verbal memory (such as remembering a conversation) and trouble with visual memory (such as recalling an image or list of words). 

Unfortunately, I speak from experience. In 1996, I developed a rare central nervous system autoimmune syndrome called Sumac's syndrome, which ended my medical career much earlier than I had planned. When this syndrome flares, one can get ADEM, or acute disseminated encephalomyelitis, similar to severe exacerbation of multiple sclerosis. To my knowledge, I never had that, but I had an episode of encephalopathy in 2005 which did end my career. I remember the brain fog, the difficulty finding the correct words and the two major ones, inability to multitask and fatigue, which I still possess. Prior to 2005, my memory was Edenic. 

Fast forward to this year. It was just another ordinary day for my general exam by my local internist. Exam, labs, blah blah blah. You know the routine. Except two days later, I was alerted to a PSA of 3.0; this was technically normal, but for me, it has always been 2.5 +/- 0.1. Given my family history and my dad having prostate cancer at 63, the doctor was concerned. My urologist intervened and prostate cancer was found. Unfortunately for me, this was a nasty aggressive tumor, one more bent on growing than producing PSA. My work-up for metastatic disease was normal, so out came the prostate. This is major surgery, not recommend for men over 70 or men in poor health who are over 60. I was in great shape at 63. 

Postoperative results from our pathologist revealed a very aggressive tumor in my lymphatic glands; I had stage 4 prostate cancer. Left untreated, this Gleason 9-10 tumor would take my life in under two years. I received two chemotherapeutic agents as soon as healing would allow. Taxotere, the main drug, I get once every three weeks, and it causes some degree of chemo brain, usually mental fog and worsening of fatigue; big whoop as Limbaugh would say. However, round three with no warning, starred out like any other day. I am an amateur radio operator. In the early afternoon, I went to look something up on solar interference when I forgot what I was doing, why I was doing it and had not a clue how to even turn on my main computer, let alone log in! 

A while later, my wife found me up stairs in my office chair but noticed I was not moving or talking. She called my name. No response. 

All I could do was nod my head no. She looked at me with tears and a look of terror. I truly felt I suffered a stroke. She took me downstairs laid me down. My temp was 99.5. I could talk, but I was so scared. I was oriented, I knew my name, wife's name all of that, and my doctor felt it was chemo brain. By midnight, it had cleared my and my wife was asleep. I got up and sat in our living room with one of our dogs following me. I hugged her and cried. I have never been so terrified in my life. I prayed to God that my family would be OK, and I asked Him, that I never have this side effect again. 

It has been two days, and I feel OK, just tired. If it happens again, I will be readily armed with knowledge from others I talked to with similar experiences. My hero is my wife, who took control and took outstanding care of me. I would lie had I not said I thought I had a stoke as it came on so rapidly. But cancer and I both learned valuable lessons, I'm not quitting and you will lose. I have eight days before my next IV therapy. I will be there. 

Chemo Brain and Prostate Cancer

I am Dr. Tom Arno, a retired 63-year-old MD. I write as not only a retired cardiologist, but also a cancer patient with the second most common cancer in the USA: prostate. First, a bit of science. Prostate cancer will occur in one out of every six men, and one out of four men who have, as I do, a positive family history. About 26,000 will die this year from this disease, making it the second most common cancer-related death (lung is the first). Most men, six out of 10, develop after age 65.  I am 63, as was my father when he was diagnosed, underwent surgery. He lived until 93, dying of an unrelated issue.

My experiences are interesting and a bit unique. I had no symptoms, other than the fact that I felt tired and it was harder to work out, but I had no urinary or prostate warning signs. My family doctor checked the usual. All was normal, including my PSA, which was 3.0. PSA, a blood test, stands for prostate-specific antigen. This “gold standard” is not so gold. In fact, I would not even give it a bronze! In conjunction with a DRE (digital rectal exam), it is the standard to diagnose prostate disease. Normal is 1.0-4.0, yet mine was 3.0 and I have stage 4 prostate cancer.

Many PSAs miss cancer. Many high PSAs also wrongly diagnose cancer. My experiences and learning as an MD told me 3.0 was normal, but for the last 10 years my PSA had been 2.6-2.5. Three did not sit well with me or my family doctor. Having a positive family history, I decided to see my urologist, Dr. Alan Fogel, who examined me and found nothing, but was still concerned. He explained that a PSA could be normal, as some tumors do NOT produce this protein. He ordered a test called a PHI (prostate health index) which is three tests in one, three times more specific than PSA, and groups you by risk. The next day, his office called and asked me to come in to talk over the test results.

I brought my wife, Barb, for moral support. She has been my rock through all of this. Dr. Fogel explained that patients with a positive family history are normally put on active surveillance. This means we watch and check PSAs every six months and check a PHI. If all is normal, we watch. Unfortunately, my PHI was literally “off the chart” for high risk. I had a normal PSA of 3.0 and a markedly abnormal PHI. Now what? Dr. Fogel explained that with the one to four risk of having cancer, I needed an ultrasonic biopsy, a procedure done under anesthesia, outpatient, where an ultrasound probe in placed in the rectum to visualize the prostate. Twelve biopsies are taken, six from the right lobe, six from the left lobe. He explained the risk was too high for surveillance and that now is the time to look at tissue. My biopsies were done and seven of 12 were positive for cancer.

Meet the Gleason score. The higher the number (it’s actually two numbers added together) the more aggressive and deadlier the cancer. The scale runs from a low of 2 to a high of 10. Gleason scores of 4 or 5 can generally be left alone, but 7 or higher is an issue. Well, just like med school, I scored a perfect 10 and multiple 9’s and all biopsies. Not only that, but some of the entire biopsy was over 90 percent cancer, a bad sign. Once again, we met with the doctor who explained that this is an aggressive cancer. The more aggressive the cancer, the less PSA the tumor produces, hence the PSA of 3.0. He explained the Gleason score and told me, “With this tumor, we can’t drag our feet.” We did the usually metastatic work-up, bone scan, TT MRI (an MRI of the prostate with a 3 Tesla magnet), which were all normal. The tumor was confined to prostate.

Great! I was the perfect candidate for taking out the prostate. On July 8, 2016, I underwent prostatectomy at a center of excellence, in Charleston, South Carolina, my hometown since 2010. Why a center of excellence? This is important if you want a high success rate of removing the prostate, a cure, preserving the nerves, remaining continent, and ability to maintain an erection. The surgery went fine. I’m young, in great shape, not obese, do not smoke or drink and work out daily. This was major surgery; it took me five weeks to recover. I feel great and I’m continent. Unfortunately, I am not living happily ever after!

Two days later, I received the bad news. The cancer was indeed confined to just my prostate, but one lymph node was positive. That took me from stage 1 cancer to stage 4. This is a rare one, as I learned from talking to my oncologist and radiation oncologist. Once cancer invades the lymphatics, it can go anywhere. My tumor is classified as T1c, N1 M0 (tumor not palpable or visible, spread to nodes, not metastatic to distant sights yet). I spoke with several oncologists who were well-known in the country, as well as our local radiation oncologist.

I’m the 1 in 100, the gray area no one really knows what to do with. I have a tumor that is totally confined to the gland where one node tested positive. What really shocked my wife, my family and me is that the mortality of this Gleason 9-10 tumor is very high. On the aggressive scale of one to five, it is a five, meaning it was highly aggressive. The literature is all over the board in this case, but standard therapy is two to three years of anti-hormonal therapy such as Lupron. This is analogous to not fertilizing a plant. When there is no food for the tumor, the tumor starves and dies. Then five to seven weeks of daily (Monday-Friday) radiation therapy to the pelvis. With no therapy, all five doctors agreed that I will be dead in 12 to 18 months. That is how aggressive prostate cancer can be. It all depends on your Gleason score determined by biopsy.

After great debate, talking to many doctor, getting second and third opinions and reading the literature for myself, I chose the less conventional root. Anti-hormonal therapy is necessary. Side effects, of course, were like male menopause: hot flashes, night sweats, watching that weight and muscle mass (so I will be at the gym daily now)! The other option, chemotherapy with docetaxel (Taxotere), is controversial. We all know those side effects. Frankly, I’ve always wanted to save money on shampoo. Why dual therapy? Once cancer in the lymphatic system, I have no idea where those cells are. One American study shows this drug is promising, one European study shows that it is not, but I do not want radiation due to the possible late-term side effects.

Why am I telling you this, putting it on Facebook, writing for 

and other publications? This is a clarion call for me, a doctor, retired or otherwise. Physicians have one, and only one, major responsibility, to help others. I took an oath to do no harm and to help. I will honor that oath until I die. I have dedicated my retirement since 2008 to do exactly that. If one person has a PSA/PHI checked because of this story, and it comes back positive, I have done my job. Many things can cause PSA to be high or low, and I will provide references for your education. Be proactive. Read. See a urologist, a good one, and insist if your family history if like mine a PHI be checked. In fact, urologists recommend PSAs beginning at 35 for my son. Needless to say, do not smoke, do not be overweight, and know that African Americans are at higher risk, as are our military veterans who were exposed to Agent Orange. As for staying active, my cancer therapy begins in August for anti-hormonal therapy, and shortly after for chemotherapy. Bring it on. I’m too busy with Ham radio, being a broadcast meteorologist for multiple radio stations, and writing and publishing a book to worry about this. My cancer has renewed my faith in humanity, and in my friends. I will see my class of 70 in 2020 at our 50th reunion.

 *Please read Dr. Patrick Walsh’s Book 

, third edition. It is an invaluable resource.

**Any money I make from my writings will be donated to the American Cancer Society.

Thomas Arno, M.D., F.A.C.C.

I Rang the Bell, But the Cancer Battle Is Not Over

What to Do When You're Sick After Hours

How Can I Help My Oncologist?

Chemo Brain and Prostate Cancer

Prostate Cancer: A Doctor Can Be a Good Patient

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