Building My Team

On Halloween my wife, Jodie, my Mom, and I went to UCSD Moores Cancer Society to get a third second opinion. Jodie, being Jodie insisted that since it was Halloween that we should wear our costumes. When Dr. Tyler Stewart walked in to greet us he immediately started laughing. It was the perfect ice breaker. He then proceeded to spend over an hour talking with us, drawing diagrams, and discussing treatment options.

He started by explaining that prostate cancer requires a team of doctors. The team consists of a radiation oncologist, a urological oncologist, and a medical oncologist. Each plays a part in the treatment. Furthermore, at least at UCSD each case is reviewed weekly at a “tumor board”. I quickly imagined a bunch of doctors sitting at a table looking at radiology reports announcing in their best Schwarzenegger impersonation, “It’s NOT a tuma.” “It IS a tuma.” Kindergarten Cop ( 1990 ), anyone?

As the medical oncologist Dr. Stewart referred to himself as the “quarterback”, or the one that would be directly managing my care with the team. 

He then dove into the various treatments that were available and how the treatment would vary based upon if and where the cancer had spread. There’s radiation for localized cancer, or cancer that is confined to a particular area. Surgery is another option, especially if the cancer is contained within the prostate. There’s hormone therapy for depriving the cancer of testosterone. Prostate cancer as it turns out feeds off testosterone; by medically lowering testosterone you can starve and kill the cancer cells. Chemotherapy is another option that is reserved for cancer that has spread. He didn’t delve into the topic of clinical trials nor immunotherapy. My understanding is that the later is reserved as a treatment of last resort when conventional treatments stop working. 

Basically, there is a treatment for everything. But every treatment has nasty side effects.

He said that if were to stage my cancer he would give it a 4a since it has likely spread to at least one lymph node. However, he told me that he was still treating it as “cureable” based upon favorable results from additional scans that he wanted to run.

There are scans for everything, too

Dr. Stewart then ordered another CT Scan that would include my chest as well as an MRI Scan to determine the size and shape of my prostate. By verifying that the cancer is localized and has not spread too far he could start me on radiation and hormone therapy. Ideally, the hormone therapy will keep my cancer in check while the radiation wipes it out. The downside of hormone therapy is that prostate cancer eventually becomes resistant to it. 

Dr. Stewart would like to run some additional advanced scans as well. In my prior post I also talked about the Ga-PSMA PET CT Scan. Well, there’s another slightly-less-advanced scan called an Axumin Scan that delivers similar results through a completely different process. Both scans can pinpoint where prostate cancer has metastasized. An Axumin Scan does this through a radioactive tracer absorbed by the prostate cancer cells. A PSMA Scan does the same thing by detecting a protein produced by the cancer cells. A PSMA scan is more accurate and from what I read it can be used for “targeted” therapy. Aside from the technical differences the Axumin Scan is the only one of the two that is likely covered by insurance and is available at UCSD. The PSMA Scan is only available at 5 locations nationwide and the soonest availability is a month out at UCLA. Phew. Information overload, right?

Be aware that scans are not cheap and there are no customer loyalty programs or repeat discounts.

My second CT Scan was only prescribed because my first one only covered my groin area. My first CT Scan was performed just a couple of weeks ago, too. Sigh. Supposedly, limiting a scan to a particular area is standard protocol however if I knew better at the time I might have avoided some unnecessary costs and trouble. 

Jodie and I with Dr. Tyler Stuart at UCSD

As our conversation wound down Dr. Stewart said he wanted to do a quick examination. Instinctively, I reached for my belt buckle and was about to drop trough when he said, “No worries, I already know what’s going on down there. I just want to listen to your breathing and check your lymph nodes.” With a deep sigh of relief I asked him if he’d take a picture with a couple of nerds. He agreed.

Before we left UCSD Dr. Stewart had me go get blood work done at the lab in the Moores Cancer Society lab. He wanted to check my testosterone, PSA level, and blood cell counts. He also was able to expedite a genetics test. It was kind of surreal walking into that building, looking around, and realizing that the majority of the people there had cancer. There was a lot of people. The majority of them looked healthy, too. That was reassuring. The best part? The lab staff was dressed up in costumes as – vampires! So yes, I had my blood drawn by a vampire on Halloween. 

ScottJodieLabVampiresUCSDMooresCancer

Dr. Stewart called me the next day to check-in. He told me that his goal was for me to look back on all of this forty years from now as just a “blip” in my life. That’s exactly what I needed to hear.

The third time [ opinion ] is the charm. I found a good quarterback and I’m not even a football fan. 

Last but not least, everyone keeps asking me how I’m doing. The truth is I have a lot more good days than bad ones. I’m in a little pain but I’ve been managing it without medication. I could do without the urinary problems but I’ve learned to “take a seat” when using the bathroom. For now I’m not letting the cancer diagnoses slow me down. And when I do start feeling down one thing that cheers me back up is knowing that my family and friends have my back.

Previous : A Second Opinion

Next : Treatment Options

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A Second Opinion

Yesterday, while most of LA was trying to escape a fire that had broken out along the 405 near the Getty Museum my wife, Jodie and I raced towards it. I had an appointment with Dr. Stuart Holden, a urological oncologist at UCLA that had been recommended to me by a family friend.

I can best describe the UCLA Medicine complex as what would happen if a hospital building devoured several other hospital buildings and then plopped itself down in the middle of a bustling downtown. The size was bewildering! While checking in at Urology Jodie noticed that all of the doctors’ cards were arranged on a turnstile like the ones grocery stores use to display gift cards. We counted over 30 before finding and pocketing Dr. Holdens. 

It’s amazing how different doctors can have such dramatically different opinions on treatment.

Last week I talked to Dr. Carrie Costantini, an oncologist at Scripps. She gave me two options, either remove my prostate, or bombard it with radiation. Dr. Holden told me that performing surgery was premature without first determining if the cancer had spread. He said that the treatment varies considerably depending on whether or not the cancer is contained within the prostate or has spread elsewhere. Furthermore, performing surgery or treatment before getting a full picture might make me ineligible for clinical trials. 

Dr. Holden told me that out of the 60 urologists in his office that none of them would preemptively operate without running additional tests. 

These tests include a bleeding edge scan called a Ga-PSMA PET CT Scan. What a mouthful, right? In my last post I wrote about the Prostate-specific antigen ( PSA ) test for helping to detect prostate cancer. To clarify, PSA is a protein produced by the prostate. When the prostate is inflamed it produces more of it. Thus, it is commonly used as an indicator of cancer. As it turns out once prostate cancer has metastasized the PSA protein is not as accurate, particularly with aggressive cancer such as yours truly has. The Prostate-specific membrane antigen ( PSMA ) is another protein that’s prevalent in metastasized prostate cancer cells. This new PSMA scan can pinpoint exactly where prostate cancer has metastasized so that targeted drugs can be delivered. Or, at least that’s what Dr. Holden is trying to sell me on. The truth is? I believe him. The downside is that the test costs just shy of $3000, is not ( yet ) FDA approved, and I’ll have to drive UCLA to get it done. Hopefully the fires will have been extinguished by then.

Dr. Holden also wanted me to get a genetic screening done as he suspects my cancer is likely well, genetic. Whereas Scripps told me there was a 4 month lead time, Dr. Holden directed me to a company called Color Genomics. For $249 and some of your spit Color Genomics will determine if you have any known cancer genes including BRCA-1 and BRCA-2. BRCA stands for “BReast CAncer susceptibility gene”. Dr. Holden told me that my cancer treatment could vary based upon the findings produced by the genetic screening. Having the genetic screening performed will also help determine if my daughters might be at risk of cancer someday as well.

Lastly, Dr. Holden was perplexed why my initial CT Scan did not include my entire body. He told me that given my high PSA ( 78+ ) and Gleason ( 8-10 ) scores that it would be highly unlikely that the cancer would not have already metastasized. He told me that this warranted a CT Scan of my entire body – not just my groin area. He said that the CT Scan that I received was an impartial picture of the problem. Dr. Holden was just as perplexed why my prostate biopsy wasn’t guided by Magnetic Resonance Imaging ( MRI ). A urologist has the option of using an MRI machine to target specific regions of the prostate during a biopsy. My urologist removed 12 samples, or cores randomly from my prostate. In his defense however, he struck “gold” everywhere he dug. 

Then Dr. Holden gave me yet another Digital Rectal Exam.

I’m beginning to realize that Prostate Exams are to a urologist as handshakes are to everyone else. 

It’s just their way of saying, “Hi. Nice to meet you.” Fortunately, Dr. Holden admitted to having small hands before niceties were exchanged.

So what’s next? This Friday I have another second ( third? ) opinion with a Dr. Tyler Stewart a urological oncologist at UCSD’s Moores Cancer Society. After that I’ll have more than enough information to make an educated decision on what to do next. 

Not for the last time I am incredibly grateful for the outpouring of support from everyone as I work through all of this. I can’t thank you enough. I’m beginning to realize that cancer is a full-time job but at the same time it’s important not to lose sight of what is important. I love you all. Take care. Eat Healthy. Stay Healthy. 

Previous : Prostate Cancer

Next : Building My Team

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Prostate Cancer

After over 20 appointments with a variety of doctors and therapists it turns out my Prostatitis is in fact Prostate Cancer. 

Let’s rewind a little bit…

Back in May I started having some urinary issues. I was getting up several times a night to pee. I was having trouble starting and stopping. After I started peeing every half-hour I visited Urgent Care. The Urgent Care doctor diagnosed me with Prostatitis, a painful inflammation of the Prostate gland. A followup with two different urologists confirmed the diagnosis. Each urologist performed their own Digital Rectal Exam ( DRE ) and independently reported that I was sporting a “large squishy prostate with no noticeable tumors”. Sexy, right? My second urologist even went as far as to ( cough, cough ) “milk” my Prostate for bacterial analysis.

The rear end is the porthole to “everything prostate” and mine was well traveled at this point. 

Due to my age ( 43 ) and the negative DRE’s I was put through several rounds of antibiotics and physical therapy. I was given a Prostate-specific antigen ( PSA ) test to see if I was a candidate for a drug called Finasteride. Finasteride is one of several drugs that is used to shrink the prostate. It is given to men with enlarged prostates, or Benign Prostatic Hyperplasia ( BPH ) to help alleviate symptoms. A PSA test is a simple blood test that is typically performed on men over 50 to check for prostate inflammation. PSA tests are not usually administered to men suffering from Prostatitis as the inflammation can skew the numbers. A PSA under 2.5 is considered normal. Mine? 78.38. I’ve always been an overachiever.

After two more elevated PSA tests ( 80.85 and 76.81 ) and persistent pain my urologist decided that I should get a Prostate Biopsy. A Prostate Biopsy is a surgical procedure where a doctor goes through your rear end ( yes, again ) and take 6-12 “cores”, or samples from the prostate. A pathology report is then performed and a Gleason Score is attributed with each sample. The Gleason Score measures the aggressiveness of the cancer. All 12 of my samples came back with cancer. 11 of the 12 were in the 8’s and 9’s. The 12th came back as a 10. My urologist, wife, and I were all shocked.

Sometimes you win the wrong lottery. 

After a biopsy comes back positive for cancer the next thing a doctor does is prescribe scans to see if and where the cancer has spread. I spent the better part of a day with my wife, Jodie getting a Nuclear Bone Scan and a Computed Tomography ( CT ) Scan. A Nuclear Bone Scan is used to determine if the cancer has spread to your bones. It requires you to be injected with a small amount of radioactive material. After a couple of hours the material binds with the bones in your skeleton after which you are placed under a large machine resembling an automotive lift. The machine slowly moves down your body and detects where the radioactive material accumulated in your skeleton. A CT scan requires the injection of a “contrast” into your blood. This time you are placed in a large machine resembling an enormous toilet bowl. The machine takes a 3D image of your body and using the contrast, can determine if the cancer has spread to any nearby organs. After a radiologist reviews your scans you meet with an oncologist and for me, a surgeon.

Let’s fast forward to this week …

Over the last couple of days I met with a surgeon and an oncologist to go over my scans. The good news is that my cancer hasn’t spread to my bones or any distant organs. The bad news is that it has likely spread to a nearby lymph node. The oncologist that I met with couldn’t accurately stage me through the biopsy or scans but predicted that I would be a “high” Stage III or a Stage IV. The big differentiation is that a Stage III is curable whereas a Stage IV is treatable. 

The plan is to perform a Radical Prostatectomy, or the removal of my prostate and nearby lymph nodes on November 7th. The sole coolness factor is that the procedure is done robotically through two small incisions. The downsides are many. The recovery can take several months during which I will likely have incontinence, swelling, and libido issues. I imagine these are the some of the same issues a woman suffers after a C-Section without the benefit of a new baby at the end. Three months following my surgery another PSA test will be administered. If everything goes well my PSA test will be zero and I will just have to have regular tests administered to track any signs of cancer. However, if my PSA test is not zero it means that my cancer still persists and I will likely undergo radiation and hormone suppressing treatment. For good measure I am planning on getting two more second opinions from other oncologists prior to my surgery.

The cat’s out of the bag …

As of yesterday, my daughters, Ashley and Kaylee are aware of my Prostate Cancer. Their first question was obviously, “Are you going to die?”. I caught myself before responding, “…well, everyone does at some point” and told them firmly, “No. Absolutely not.” After a few more questions they happily went about their evening and promptly went across the street to the neighbors house to disseminate the news. At bedtime I read them a book my mom bought me called, “Cancer Party”. I can’t recommend this book enough for younger children. It takes a lighthearted informative approach to explaining everything cancer, radiation, and chemotherapy.

Healing foods…

In the meantime my wife, Jodie has taken it upon herself to help cure me through food. She’s read more books on healthy eating over the past few months than I can count. Together we have become superfood-eating pescatarians because God forbid we give up sushi. Our Frappuccinos have been replaced with green tea and our ice cream with dark chocolate. It would be a lot more traumatic if she weren’t such a good cook.

Moving forward I plan on posting regular updates on my progress here at DrawnAndCoded. I never ever intended this site to be used in such a manner but I am uncomfortable posting on normal social media channels such as Facebook.  My ultimate goal will be to keep everything as upbeat and informative as possible. And yes, there will still be comics and the occasional programming article as well.

Last but not least. Since my Prostate Cancer diagnoses I have received an overwhelming amount of support from my family, my friends, and complete strangers ( now, friends ). You know who you are. Thank you for your love and support. And please keep it coming. 

Next : A Second Opinion

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