The upside of early morning appointments is that, if you’re lucky, your doctor is on schedule. The downside is that if you live in Southern California you hit traffic, lots of it. As Jodie and I crawled along the 56 West towards La Jolla, we sipped green tea from matching insulated bottles that we had bought from Costco earlier that week. Green tea has become our therapeutic drink of choice lately. I add ginger to mine as I’ve heard it has anticancer properties. Jodie prefers pomegranate.
After parking I walked over to a kiosk, paid for a parking ticket, walked back to the car and slapped it on top of a large stack of prior tickets.
“This is getting expensive”, I told her.
“Did the code work?”
The “code” in question is a department code that, if you’re lucky, is provided by your doctor for your appointment that grants you free parking. When given such codes I have milked them to expiration. Five dollars per appointment adds up over time.
After arriving at the urology suite in UCSD’s Koman Outpatient Pavilion we were quickly checked in and shown to my exam room.
My eyes immediately focused on a tube of lube resting casually on the exam table.
As soon as the nurse left and closed the door I extricated the tube to the safety of the back of the room, hiding it as best as I could behind the sink faucet. Just in time, too.
Dr. Kane’s resident entered, introduced himself, and quickly rattled off the entire history of my prostate in incredible detail.
“So, we typically do rectal exams for our appointments…”, he said with a smile.
There it is.
Now, at this point in my treatment I’ve had six prior DRE’s, three CT Scans, three MRI’s, a bone scan, and a prostate biopsy. As much as I would enjoy having another finger stu….
“Is another DRE absolutely necessary? Will it help his treatment?”, Jodie asked, interrupting my thoughts.
My wife, through all of this, has been acutely aware of my ever-growing aversion to anything stuck up my ass and has been very vocal in its protection. God bless her.
“No, it’s unlikely. You can choose to defer if you’d like.”, he responded.
Tough choice, right?
After deferring, Dr. Kane’s intern quickly finished up with me and left the room with what I felt was just a hint of dejection.
Dr. Christopher Kane entered a few minutes later. I immediately liked him. He had a kind smile and even though he knew my history, he wanted to hear it from me. After introductions we got down to business.
Dr. Kane told me that, after reviewing my latest CT and MRI scans from last week, he was able to more accurately stage my cancer as T3N1.
Letters, numbers …. wha?
“What does that mean? Is that better?”, I asked hopefully, “My prostate cancer was Stage 4 before.”
Dr. Kane gave me a brief overview of the TNM Staging System. TNM stands for (T)umor, (N)ode, (M)etastasis. The TNM System is used when staging metastasized cancer to describe where it has spread. He told me that my cancer is not clinically localized as it had escaped the prostate. He also reiterated that it is high risk because of the high Gleason grade and high PSA at diagnosis, making it T3. It had also spread to one nearby lymph node, making it N1. If two lymph nodes were involved it would be N2, and so on. Dr. Kane didn’t include an M because there is no evidence of metastasis to other organs or bones.
Next, Dr. Kane told me that the hormone therapy is working. It’s working so well in fact that my latest MRI, performed on January 24th, measured my prostate at 25 cc.
To put it in perspective a normal prostate for a man my age is 25 – 30 cc. The last time it was measured, prior to starting hormone therapy on November 6th, it was 46.6cc. That’s a 46% reduction in size in less than three months! Dr. Kane told me that the smaller size would make surgery easier. He also told me that I could stop taking Flowmax as well.
I have been on Flowmax since April, 2019. It was initially prescribed to me for urinary pain and retention caused by, what my doctors at the time thought, was Prostatitis. Flowmax works by relaxing the muscles of the bladder neck, allowing things to ( for lack of a better term ) “flow” better. I never liked being on the stuff. It worked, but it was one more pill that I had to schedule around meals and came with its own side effects . Then, of course, there was the stigmatism of being on the same prostate medication as men twice my age. Needless to say, I was more than happy to be told I could stop taking it.
“So, now that my prostate is normal-sized and my PSA is in a normal range, what would happen if I stopped hormone therapy?”, I asked out of curiosity.
Dr. Kane told me that hormone therapy is only effective against roughly 90% of prostate cancer cells. If I stopped the hormone therapy, the resistant cancer would keep growing and I’d be right back where I started.
“Your cancer is no longer localized.”, Dr. Kane told me, “In the ‘Old Days’, which were 20 years ago ( chuckles ), once the cancer had left the prostate we’d just do hormone therapy. We didn’t treat it as a curable disease.”
“And now?”, I asked.
“Now we’ve found that when prostate cancer has spread to a nearby lymph node and we treat it with hormone therapy and either radiation or surgery, the cancer can potentially be cured.”, Dr. Kane said.
Boom! So there’s a chance! Dr. Stewart hinted at the possibility. Hearing it from Dr. Kane was even more encouraging.
“We have lots of data on other men with disease similar to yours.”, Dr. Kane said, “The studies indicate that, even though the cancer has spread to a lymph node, it might be cureable. What we don’t have a lot of information on is which local treatment works better with hormone therapy – radiation or surgery.”
Dr. Kane, being a surgeon, proceeded to tell me the benefits of surgery. He started by telling me that his goal wasn’t to sway me either way, but it didn’t matter, I had made up my mind after talking to Dr. Stewart, my oncologist, a few weeks prior.
“With surgery”, Dr. Kane told me, “we physically remove the tumor and hand it over to the pathologists for further analysis. This analysis will show them exactly where the cancer is and isn’t, how many nodes are involved, how the cancer has responded to hormone therapy and it may help with future treatments as well. Surgery also ‘de-bulks’ the tumor by removing the majority of it, and gives your immune system and other therapies a better chance at fighting off any residual cells.”
“And”, he said, “we can do radiation later if needed.”
Anticipating my next question Dr. Kane told me that he does 3-4 surgeries per week, totaling around 2,000. His first 500 or 600 were non-robotic, “open” surgeries.
“And”, Jodie asked, “how many men have you operated on that were under 45?”
“I’ve operated on about 100 men under 45; the youngest being 29.”, he replied.
He continued to tell me that during the surgery he will do a lymph node dissection and remove the ones that are most high-risk, probably 45-60 total. The lymph nodes would then be biopsied by pathologists to check for metastasis. He told me that he typically did this for men whose PSA scores were ten or above. I’ve talked about lymph nodes in a prior post. To summarize, lymph nodes are part of our immune system. They help our bodies fight viruses, colds, and diseases – such as cancer.
“Will the removal of these lymph nodes cause any problems? Swelling? Infection?”, I asked.
“No.”, he said flatly, “the human body has hundreds of lymph nodes, many of which are located in the thighs and legs. The remaining lymph nodes will take up the slack. There is, however, an increased chance of blot clots, so we might put you on blood thinners in the hospital”.
“How do you remove the prostate from the urethra? I mean, you can’t just slide it off like a bead on a piece of yarn”, I asked, “they’re kind of attached, right?”.
Dr. Kane then demonstrated with his hands how the urethra is cut and ‘precisely’ sutured back onto the bladder after the prostate is removed. Then, he told me that everything is carefully pressure tested.
“Wait, pressure tested? Like, as in plumbing?”. I interrupted.
“Yes. To check for leaks.”
I hope Dr. Kane is better at plumbing than I am. I had a flashback of one of my first DIY projects, a bathroom renovation. I had just replaced a bunch of shutoff valves and copper pipe. After turning the water back on I casually walked back to the bathroom to find water spraying everywhere and a small lake on the floor.
“Now, let’s talk about side effects”, Dr. Kane said.
First, he told me that surgery causes temporary urinary incontinence, but the risk for permanent incontinence is very low for a young, healthy patient and an experienced surgeon. Although the incontinence usually resolves itself within 6 weeks, prior to that I’ll probably need to wear a pad, or ( shudder ) diapers. The prostate acts as a very efficient “valve” to the bladder. It’s why men can go longer than women without peeing. Without a prostate, men, like women, need to rely solely upon their pelvic muscles to maintain continence. However, whereas men tend to be more muscular than women, this advantage ends with their underutilized pelvic muscles. Kegel exercises, exercises designed to strengthen the pelvic muscles, help with the incontinence. I have been doing them for the last couple of weeks after my last appointment with Dr. Stewart.
“And then there are the sexual side effects.”, Dr. Kane began.
Here we go…
Dr. Kane told me that the nerve bundle that controls erections is, unfortunately, attached to the prostate. Removing the prostate and sparing the nerve bundle is tricky and not always possible.
“After your surgery, when you take a break from hormone therapy, we can talk about injections and medications to help with erections,” he told me.
My brain quickly visualized where said injections might be administered and urgently wanted to switch to a different topic.
“Look, I just want to live. Right now erections are the furthest from my mind. I’m more concerned with wearing diapers for the rest of my life. Does the nerve bundle also control incontinence?”, I interrupted.
“No, the nerves that control your bladder will remain intact. You might change your mind about sex once this cancer is behind you…”
Behind me. Strong, reassuring words – I was really beginning to like this guy! However, for this “Casanova”, the thought of popping libido pills and whipping out a syringe during sex were concerns for another day. If I can’t control my own bladder I sure as hell wasn’t going to be interested in sex.
So, what is the recovery like after surgery?”, I asked in an attempt to change topics.
The recovery wasn’t as bad as I imagined. As usual I “primed” my expectations by scouring the internet for articles and forum posts. Dr. Kane burst these expectations one by one like the overinflated balloons that they were. He told me that I would need to stay overnight in the hospital. A catheter would be inserted and would have to stay there for one, maybe two weeks. He said that it could come out as early as three days, but swelling would make it difficult to pee. He told me that I’d be up and walking after surgery. After two weeks I could resume yoga and using elliptical exercise machines. Weight lifting, however, would have to wait at least six weeks. Bad, but not nearly as bad as I had read.
The restrictions on weight lifting was my biggest concern. One of the side effects of hormone therapy is a reduction in muscle and bone mass. I’ve been told by multiple doctors and nurses how important weight lifting is in order to counteract its effects. A six weeks hiatus is long, but still shorter than the two to four months than I read about on the Internet.
“Do you have any experience with your patients using Pulsed Electromagnetic Field Therapy before or after surgery to help with healing?”, Jodie asked.The therapy, also known as PEMF, has helped our friend, Lora, with her back pain tremendously. I was curious, too. When I was suffering from Prostatitis I had read several articles on how PEMF reduces inflammation.
“I have patients that have tried it and I don’t know how much it helped but if you want to try it go ahead.”, he said.
Finishing up he said, “The goal is to remove all of the cancer or at least 99% of it, which would give the immune system a fighting chance.”
And that’s really it, right? Our immune systems are responsible for keeping cancer in check. Everyone has cancer cells at some point, it’s up to the immune system to step up and kill off the cancer cells before they become a tumor. My immune system was apparently not up to the task. This failure is one of the reasons why I advocate a plant-based, low-sugar diet. In addition to the health benefits, I wanted to give my immune system the best “tools” for the job. It’s also one of the reasons why I’ve worked on reducing the amount of stress and anxiety in my life through exercise and meditation. The fact of the matter is, if hormone therapy and surgery leave even a speck of cancer alive in my system, I want my immune system to be in the best shape possible to stop it.
Dr. Kane struck me as experienced and confident, two qualities that you want in a person who will be responsible for tearing out your manhood. While he was getting up to leave to see his next patient I asked him one more thing.
“Dr. Kane. Before you go, can you hold your right hand out in front of you, palm down”
He looked at me with a puzzled look, but complied.
I waited ten seconds before responding.
“Good. Nice and steady. You’ll do fine!”, I said chuckling, “Thank you for meeting with my wife and I today”.
He smiled, gave a slight laugh, and told me to expect a call from his scheduler.
I guess the only thing left to do now, is wait and, well … kegels. Sh*t, I can’t believe I just wrote that.
Take care. Stay healthy. Live life.
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Next : Surgery is over a month away, today is now
#prostatecancer #cancer #prostatitis #psa #prostate #urology #oncology #radicalprostatectomy #chemotherapy #hormonetherapy #surgery #lupron #leuprolide #firmagon #degarelix #docetaxel #drawnandcoded #iwillbeatthis
7 thoughts on “Cut out the “crap””
What can I say that hasn’t been said before. I believe your candor will help so many people that are scared of this prognosis. I don’t know why I have been so fortunate to have met you, but boy am I glad I did.
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Your writing is amazing. I feel so honored to accompany your journey. The future sounds extremely promising! You’ve got this Scott! ❤️
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Your writing as usual is extremely informative. The humor makes it usual. Sound like a great surgeon. You’re on your way to getting better. Your surgeon was patient at answering your questions and giving you reassuring information. Glad you’re spending at least one night. It will make the procedure easier for you. Plus your cancer level improved! ❤️👍
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Hi S cott You have done a remarkable job of learning and fighting this disease!!! I stay in touch with your mom about your journey It has not been that long ago to me that you and Todd were playing when you were in my backyard for somebody’s birthday. You have this 😂
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It’s so wonderful that you’re sharing your journey, I hope everyone is sharing your story as inspiration to others!
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