“There’s a very high probability that your cancer will return.”  

My 3-month checkup with my oncologist, Dr. Stewart had just ended. Jodie and I were waiting for what hopefully would be my last shot of Lupron before going on a hormone therapy “vacation” and I couldn’t get Dr. Stewart’s voice out of my head. 

“What are the odds of …(pause)… you know what? Never mind. I don’t think I want to know.”, I responded.

And I really don’t.  If someone told you that it would be nearly impossible to succeed at something, how hard would you try? I need hope and it’s friend, optimism on my side – even if it’s unfounded in reality. 

To quote Jim Carrey’s character, Lloyd, in the movie, Dumb and Dumber: “So you’re telling me there’s a chance.”

But Dr. Stewart is right. Statistics don’t lie. So,  for the rest of the appointment I refocused on what treatments I could expect if I were to relapse after being taken off of hormone therapy. Unsurprisingly, I would be put back on hormone therapy immediately. If my PSA level, a blood marker used to detect prostate cancer, were to exceed .5 ng/mL, a PSMA Scan would be performed on me. If the acronym PSMA sounds familiar it’s because Dr. Stewart wanted me to undergo one two years ago at UCLA when I was newly diagnosed. At the time the scan was going through FDA approval. Recently approved, UCSD had one installed just days before my appointment. The upsides of FDA approval are that insurance would probably cover it ( it was $3000 out-of-pocket two years ago ). The downsides are that I might not want to see what the scan has to show me. It’s incredibly precise and has the potential to pick up metastasis missed in my prior CT and MRI scans. Ignorance is bliss, right?

“And if my PSA were to rise and the PSMA scan were to pick up something? Then what?”, I asked Dr. Stewart.

“If there’s not too many spots we’d radiate them.”

“…and if it’s in a place that has already been radiated?”, I pushed.

“Then we’d have a longer conversation with your radiation oncologist. Dr. Rose.”, he replied.

“It’s like ‘whack-a-mole’.”, he continued, using an analogy.

“And we’d just keep hitting the new spots over and over?”, I asked.

“Yes, as long as the cancer responds.”

“And if it doesn’t?”

“Then we look at other therapies.”, he replied.

Dr. Stewart also told me that I had the option of staying on hormone therapy. I quickly dismissed the idea. 

First off, my body needs a break. In my last post I wrote about how hormone therapy can cause bone loss. Well it can also cause muscle loss, fatigue, and liver problems. In addition to 3-month Lupron shots I’m also on Zytiga, another pill-based form of hormone therapy used for advanced prostate cancer, and a steroid, Prednisone – both of which require monthly blood panels. A month hasn’t gone by where I haven’t seen an abnormal reading. 

Second, by staying on hormone therapy I’d never know if I was really in remission, or if the hormone therapy was just suppressing the cancer. No, it was time to pull the blocks and take the prostatectomy-ied, radiated, and “hormone-therapy-ed” “car” out for a drive and see what happens.

Third, hormone therapy becomes less effective over time. Hormone therapy works by stopping your body from producing testosterone. Initially, prostate cancer requires testosterone to thrive, but eventually the cancer adapts and starts producing it on its own. The clinical term for this is “Castrate Resistant Prostate Cancer”, or CRPCa. CRPCa is much more difficult to treat and the longer I’m on hormone therapy, the greater the chance my cancer will become resistant to hormone therapy. 

( Knock! Knock! )

“Ready for your shot?”, my nurse asked from behind the exam room door.

“Yup! Come’on in!”, I replied, grimacing.

While my nurse donned her protective gear and prepared the shot I fumbled with the exam table’s foot pedal to raise it up to white-knuckled-grabbing-position. 

“This is my last shot!”, I said, and then stumbled a little, “…. hopefully…”

“I hope so, too.”, she replied, smiling.

It was my seventh time getting stabbed in the ass with a horse needle full of Lupron. My first injection, a different but similar medication called Degarelix, was administered to both sides of my belly almost two years ago. This time I barely felt it at all. 

The Lupron will remain in my system for three months. In December, for the first time in two years, I won’t receive a follow-up shot. I will stop taking Zytiga, too. A week or two later I will go off of the steroid, Prednisone, and then my hormone therapy “vacation” will begin. I am looking forward to the vacation, but I’m more than a little scared. too. Currently my PSA is .01 ng/mL, or undetectable. If my PSA were to increase it would indicate a recurrence; that somewhere inside of me the cancer is still alive and growing. It would also imply that, until there’s a cure, I’ll likely be fighting it for the rest of my life. 

In the past I’ve referred to the whole cancer journey as a trip down a dark tunnel. It’s scary. It’s dark. And it seems to go on forever. As with any tunnel there is light at the end. Those are your family, your friends, and your supporters waving flashlights and urging you forward. The thing is there’s light in the tunnel, too. You just need to look harder for it. This light is from cancer survivors who continue to fight. Although they haven’t made it out yet themselves, they, too, urge you forward. They’ve been down the same path. The path forward is possible. It’s been done. You just need to follow the light to find your way. 

So wave those flashlights, people – and tell you what, I’ll wave mine, too.

Take care. Stay healthy. Live life.

-Scott

Previous: Walk the Walk

Next: The last pills ( almost )

#prostatecancer #cancer #prostatitis #psa #prostate #urology #oncology #radiationtherapy #radiation #ebrt #proton #radicalprostatectomy #chemotherapy #hormonetherapy #surgery #lupron #leuprolide #radiationtherapy #radiation #ebrt #photon #hormonetherapyvacation #psma # #drawnandcoded #iwillbeatthis

A few months ago my oncologist, Dr. Stewart, scheduled me for a bone density scan to check me for osteoporosis, a potential side effect of hormone therapy. The procedure was non-invasive, painless, and produced so little radiation that the technicians administering the scan were able to sit in the same room with me. It was a novelty for me given the precautions taken for CT and MRI scans and radiation therapy. It took about ten minutes to scan my hips, upper legs, and lower back…

“Can I talk?”, I asked the technician seated across from me.

“Sure, just don’t move too much.”, the technician replied.

“Okay. Sure.”

“Hey … so you’re not just scanning my butt to fax to your co-workers, are you?…”

“…because this thing you have me laying on really doesn’t look much different than a larger version of the copy machine at my office.”, I joked.

“No ( laugh ), of course not!”, the tech replied.

“I’m not sure I believe you…..”, I laughed, trying not to move.

A few days later I got the initial report : I had mild osteoporosis. The results warranted a visit with Dr. Hofflich, an orthopedic doctor, to go over the results in more detail and discuss potential treatments. It was a very educational meeting.

Hormone therapy weakens bones

Leuprolide ( or, “Lupron” ) and other types of hormone therapy can weaken bones over time. In addition some steroids can also weaken bones, particularly Prednisone, a steroid which is prescribed along with Abiraterone Acetate ( also known by the brand name “Zytiga” ). Dr. Hofflich told me that given my test results she would have, in retrospect, started me on a medication to strengthen my bones at the outset of my hormone therapy. However, as my therapy would be paused ( hopefully indefinitely) towards the end of the year, it wouldn’t make sense to do so so late in the game. I got the impression that, for older patients, a preliminary bone density scan would have been standard procedure prior to starting treatment for cancer. However, for a 43 year old in otherwise good shape I don’t think it ever crossed anyone’s minds – including mine.

The good news is that bones can recover

It’s a slow process that can take years, but bones can recover on their own. Dr. Hofflich emphasized doing “impact” exercises. These are exercises that stress the bones and force them to become tougher and stronger. Running, jogging, hiking … even walking helps. Weight training, too.  In general alI exercise is good, however I was a little surprised to hear that Dr. Hofflich wasn’t a big fan of bicycling or swimming…

“Swimming and bicycling are great for building muscle and losing weight, but not so much for building bone.”, she told me. “These exercises don’t stress the bones enough.”

I mentioned to her that I was on a Whole Food Plant Based (WFPB) Diet and she wasn’t perturbed. She told me that as long as I take calcium and magnesium supplements along with my normal diet, I would be getting more than enough calcium. She did, however, emphasize that I shouldn’t take all of the supplements at the same time and that, instead, I should stagger the dosage throughout the day to improve absorption. 

As part of my monthly blood panel, Dr. Hofflich ran some additional tests to see if there are any other explanations for my osteoporosis. The tests all came back negative. In a year she plans on running another bone density scan to reevaluate my bone density. In the meantime it’s more walking, more impact, and …  bubble wrap.

Take care. Stay healthy. Live life.
-Scott

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Next : Walk the Walk

#osteoporosis #bonedensityscan #prednisone #prostatecancer #cancer #prostatitis #psa #prostate #urology #oncology #radiationtherapy #radiation #ebrt #proton #radicalprostatectomy #chemotherapy #hormonetherapy #surgery #lupron #leuprolide #drawnandcoded #iwillbeatthis