The big question when it comes to cancer – any cancer is if and where the cancer has spread. Localized cancer and metastasized cancer are treated very differently. As treatments are inevitably harsh on the patients’ body, a doctor wants to make sure that the treatment fits the disease. For me that meant more blood work, another CT Scan, this time of my chest, and an MRI Scan. Although I was also supposed to get either a PSMA or Axumin Scan done as well, availability and insurance approval has pushed those out to a later date.
I covered the blood work as well as CT Scans in prior posts so I’ll skip the details. MRI Scans, however, are uncharted territory and deserve some attention.
Dr. Stewart wanted an MRI Scan performed on my groin to get a better look at my prostate and nearby lymph nodes. I asked him what was wrong with the CT Scan that I had performed just a few weeks prior and was told that an MRI Scan produces more detailed images. MRI stands for “Magnetic resonance imaging”. An MRI uses a strong magnetic field to manipulate the atoms in your body. Radio waves are then used to create an image of the excited atoms. Fortunately, MRI Scans do not use radiation so they are relatively safe.
Another interesting factoid : Chemotherapy and recent tattoos (within 30 days) are a no-no for MRI. While talking to the MRI receptionist I found out that the electromagnets heat up the ink and/or chemicals. Naturally, pacemakers and any metal objects make you ineligible as well. I’m so glad I didn’t get that tattoo on my ass that says, “F*ck Cancer”.
Prior to my procedure the MRI technician guided me to the bathroom and in broken English advised me that, “Clean balls will help the machine produce a better image.” She then turned and walked away leaving my wife and I to ponder the logistics of such a task given that the bathroom had no shower. We eventually decided that the technician actually said “clean bowels”. After complying I met the technician in the MRI room.
So what’s an MRI like? If you’re slim and not claustrophobic an MRI is relatively uneventful. If the opposite is true, then God help you.
You literally lie perfectly still in a long narrow tube for about an hour with your nose mere inches from the ceiling. It would be peaceful if it weren’t for the constant loud hum and banging of the machine’s electromagnets toggling on and off.
Let’s take a step back for a moment to tally up everything. So far I’ve had :
2 CT Scans.
4 PSA Tests.
1 Genetic screening of my blood and biopsy.
1 Bacterial analysis of my semen.
1 Prostate Biopsy.
3 Digital Rectal Exams (DRE).
8 Prescriptions; 4 of which were for Antibiotics
30 Appointments with Doctors and Therapists.
That is a lot of information for an organ that started off the size of a walnut. Given all that information I’ve realized one important thing and that is :
You should always procure copies of your medical records including any procedures or scans that you have had done.
For prostate cancer, and I assume any type of chronic disease you will likely want to consult with doctors across different networks. Every single one of those doctors will want to see these records. The problem is hospitals are terrible at sharing. This is done to protect you, the patient. HIPPA, or “Health Insurance Portability and Accountability” Act of 2003 made the process a lot easier but 16 years later, hospitals are still struggling to upgrade their systems to adhere to the new regulations. Record transfers between networks typically require a faxed ( yes, fax ) request.
The images produced by CT, MRI, and Bone Scans are even more cumbersome.
In software development we have a term called “Sneaker Net”. Prior to the internet and networked computers the only way to copy a file from one computer to another was to put the file on a disk and physically walk the disk between the computers. Although hospitals are digitizing their records, they are doing it at a glacial pace. While some records can be emailed, images produced by scans must be copied to a CD. This CD must then be walked, or “Sneaker Net”’ to the requesting hospital. I spent two hours on Wednesday doing exactly this to get my original CT and Bone Scans from Scripps to UCSD.
On Thursdays UCSD has their “Tumor Board” where Dr. Stewart presented my case to 15 urologists, oncologists, and surgeons to brainstorm how to treat my cancer.
Following the dismissal of the board I met with Dr. Stewart to go over the treatment options they had discussed. My mom and my wife, Jodie joined me in an hour-and-a-half discussion.
First the good news. The CT Scan of my chest came back clear. There was no evidence of the cancer metastasizing there. In addition, the MRI scan showed my prostate and enlarged lymph node pretty much unchanged since my first CT scan from a few weeks ago.
Now the not so good news. My prostate and lymph node were still teeming with prostate cancer. Furthermore, my blood test indicated that my PSA was climbing. Prior to my biopsy it had been in the high 70’s. Now it was 103. Dr. Stewart told me that due to my young age, the aggressiveness of my cancer, and my high PSA that my situation did not fit the typical treatment protocol. He wanted to think “outside of the box” and be very aggressive with my treatment. In short, the “Tumor Board” couldn’t make a unanimous decision. Instead, they came up with three treatment options :
- Radiation treatment plus two years of hormone therapy.
- Surgery followed by radiation treatment and hormone therapy.
- Two years of hormone therapy, six cycles of chemotherapy, and 6 months of radiation treatment.
You’ll notice that the only commonality between all three treatments is hormone therapy. Hormone therapy is used in conjunction with radiation, chemotherapy, and surgery. It’s complementary and doesn’t affect the administering of the other treatments. As such it was the main topic of discussion for our meeting and the first treatment that Dr. Stewart wanted to administer.
Hormone therapy should really be called anti-hormone therapy as it is done to deprive the body of testosterone.
As I mentioned in a prior post, testosterone feeds prostate cancer. By doing away with testosterone you can starve the prostate cancer cells – at least for a while. Here’s the rub – hormone therapy doesn’t work forever. Eventually prostate cancer cells gain the ability to produce their own testosterone, or are no longer dependent on it. Hormone therapy is also known as “androgen deprivation therapy, or ADT.
The side effects of hormone therapy are the same as if you were castrated. It is also referred to as “chemical castration”.
In fact, the alternative to hormone therapy is the removal of the tesicles which is known as an “orchiectomy”. Fortunately, this is seldom done anymore but that didn’t stop Jodie and I from joking about the potential upside of prosthetics.
“Would you go larger, say the male equivalent of a DD bra?”, I joked.
“Or, would you go smaller to make everything else look larger?”, Jodie retorted.
Fortunately, Dr. Stewart and my mom had a good sense of humor throughout this discussion.
Now for the side effects. They include fatigue, muscle loss, weight gain, osteoporosis, libido, mood swings, breast tenderness, and hot flashes. I joked with Jodie that if I could of delayed my cancer for another 15 years that we could of gone through menopause together.
Yeah, so the side effects suck. It sounds like weight lifting as well as increasing my vitamin intake will help. Given that the treatment is to be administered over two years well, it’s going to be a long two years.
Lupron is the most common medication administered for ADT. It is administered as a shot every three months. However, given that my PSA is rising Dr. Stewart decided to put me on a different medication called Degarelix, also known as (ahem) Firmagon. Dr. Stewart chuckled at this and we caught on immediately.
“You’ve got to be kidding me. Who names a drug that saps your testosterone FIRMagon?”, I asked. “Someone in marketing has a sick sense of humor.”
Dr. Stewart didn’t really have much of an answer but explained that Flacidagon, unlike Lupron does not cause your testosterone levels to temporarily spike and would have a better chance of keeping my cancer in check.
It was then that Dr. Stewart told us that testosterone, in addition to being produced by the testicles is also produced by the adrenal glands. As such he also wanted to prescribe me another medication called Zytiga. Up until this point I had not asked about the cost of all of the medications but Zytiga rang a bell. I vaguely remembered coming across it while browsing the web.
“Um. So, how much does Zytiga cost?”, I asked.
When Dr. Stewart deflected by talking about insurance approval and financial assistance I knew that I had struck a chord. He eventually told me that if I had to pay more than $50 per month that I could probably work something out with financial assistance. Naturally my curiosity got the better of me. After our appointment I consulted Google and realized that Zytiga costs ( ready for this? ) roughly $10,000 per month.
Zytiga, in addition to draining the pocketbook can also affect your heart and liver. Dr. Stewart told me that while I was taking it I would need to have frequent blood screenings and monitor my blood pressure daily.
It’s going to be a long two years.
Even though there has been no evidence thus far of my cancer metastasizing outside my pelvic region I get the feeling that Dr. Stuart nor the “Tumor Board” are convinced. The deciding factor I believe, rests on the outcome of my pending PSMA or Axumin Scan. What’s the holdup? Well, the PSMA machine can only be performed at UCLA and is booked up for over a month. And then of course, there’s the approval required by my insurance company.
It’s inevitable that insurance would eventually come up in a discussion over cancer.
Cancer treatments are expensive. Because of this, I’ve realized that every medication and procedure needs explicit approval from my insurance company. Unfortunately, the approval process takes roughly three days. If an approval is requested on say, a three day weekend you’re looking at a significantly longer delay. When dealing with cancer there is a sense of unnerving urgency, too, like you’re half expecting an alien to burst through your stomach if you delay too long.
Fortunately, I have my wife, Jodie.
As soon as she realized that insurance was holding up my treatment she was on the phone with them. She doesn’t take no for an answer, either. Hopefully early next week I will get my first injection of hormone therapy and I will finally begin the initial stage of my treatment.
Take care. Stay healthy. Live life.
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