Month 74 – Living Life

On By DanIn Prostate Cancer14 Comments

I really don’t have much to share in the way of prostate cancer-specific information, especially after last week’s post, Life After Radical Prostatectomy: 72 Months Later, so here are some random thoughts on living life.

Since that post last week, I managed to celebrate the 30th anniversary of my 29th birthday with some long-time, close friends. Woo-hoo! Any birthday you’re around to celebrate is a great birthday, no matter how many fire trucks show up to extinguish the candles on your cake. (Although I’m really not sure how easily I’ll embrace next year’s “milestone” birthday. Ugh!)

For some inexplicable reason, I seem to be more energized at the beginning of this new year compared to new years in the past. And, interestingly, that energy seems to be zeroing in on my creative side, with my photography being the intended focal point for that energy. (Pun not intended. Honestly.) I’ve discovered a couple of contemporary photographers on YouTube who have inspired me to hone my skills. I hope I can keep the momentum going.

I also want to work more on the social side of my life, but that’s going to be far more complicated than calculating the correct exposure settings on my camera. Okay. Perhaps complicated isn’t the right word. Being the introvert that I am, it will be challenging to get me out of my comfort zone. (Yes, the guy who talks openly about bodily functions is an introvert.)

Lastly, I just wanted to take a moment to talk about you at the beginning of this new year.

When I started this blog six years ago to keep family and friends informed (I refused to join Facebook back then), I had no idea that I’d still be here blogging six years later, and that my audience would grow to over 250 people from New Zealand to Canada to the United Kingdom and places beyond. Amazing. And quite humbling, too. So thank you for your continued support, interest, and friendship over the years. For 2017, I’ll recommit to providing meaningful, relevant content that’s of value to anyone else going down this path. (And if my writing isn’t that compelling, perhaps an awesome photo or two will hold your interest.)

All the best in 2017!

P.S. Oops! As I was prepping this post for publication, I noticed that I never did publish my Month 73 post last month. Too busy living life, I guess. That, or perhaps it has something to do with the 30th anniversary of my 29th birthday.

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Arizona Sunset

 

Life After Radical Prostatectomy: 72 Months Later

On By DanIn Life After Prostatectomy, Prostate Cancer6 Comments

So it’s been 72 months since my radical prostatectomy. How am I doing?

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Graphic Biology Ahead

Status

Since my 66-month update in July, we learned that my PSA continued to play yo-yo by dropping from 0.08 ng/ml in April to 0.05 in August and 0.06 in November. So I’m still hovering well below the 0.2 ng/ml widely accepted recurrence threshold. That’s good.

Emotions

The emotional roller coaster that I was on at the beginning of my elevated PSA trip has really subsided into the kiddie version of the ride. Sure, there are things to be concerned about, but the initial panic and fear over the possibility of recurrence are gone.

Incontinence

My weight loss of 100 lbs. / 45 kg at its best point certainly helped reducing my incontinence. (I’ve sadly put about 8 lbs. / 3.6 kg back on thanks to the stress of our stupid election and the holiday feasts at Thanksgiving and Christmas).

What I find is that when I’m physically active or when my body is tired is when I’m more inclined to have small episodes of incontinence. At the beginning of December, we had an event at work where I was on my feet for 12 hours and doing a lot of lifting at the end of the day cleaning up after the event. By the end of the night, my underwear were damp from seepage that I never really felt as it was happening. (I generally don’t wear pads because 99% of the time, I’m dry.)

Knowing that I already have some incontinence when active is a concern if we ever get to the point of salvage radiation therapy, as SRT tends to worsen incontinence.

Sexual Function

Really not much has changed in the sexual function department in the last year or so. With only one nerve bundle, I’m pretty pleased with the fact that I can achieve a decent erection 80-90% of the time, but it does require some effort. (And I’m not taking any ED drugs like Cialis or Viagra.)

Earlier I talked about penile shrinkage after the surgery, and I’m happy to say that things are back to where they were before the surgery. I’m not sure if that’s the norm, but I’ll take it (even though it took years to get back here).

Summary

As I was wheeled into the operating room six years ago today, I had to have a little fun with the surgical team. I stopped them and said, “I just need to know one thing before you start.” “What’s that?” my surgeon replied. “Are all of you over your New Year’s hangovers?” When they laughed and said, “Yes,” I said, “Good. Let’s do this.”

Here I am, six years out from the surgery, still kicking and getting along fine for the most part. Sure, this elevated PSA is a concern, but I’m not going to live my life from PSA test to PSA test. It’s just too draining to do that. As I said at the beginning of this journey, I’ll just do my best to take things one test result at a time and go from there.

I’ll continue to stay plugged into the prostate cancer community to keep abreast of the latest research so that, if and when my elevated PSA ever becomes more than a nuisance, I’m educated and ready to make decisions that are right for me and my desire for quality of life.

 

Immediate radiation when PSA levels spike after prostate cancer surgery helps reduce risk of recurrence

On By DanIn Prostate Cancer, Research3 Comments

It’s funny that just 24 hours after having a discussion with my doctor about this very topic, this article appears on one of my social media news feeds.

My medical team seems reluctant to embrace some of the newer studies like this, sticking to the 0.2 ng/ml definition of biochemical recurrence that’s been the standard for years and years. That makes me wonder how long it takes before the medical community accepts the newer data and studies, and shifts treatment regimens to the new guidance.

Don’t get me wrong. I’m not ready to hop on a table and get radiated just because of this paper (or the two others earlier in the year along the same lines), but it is something that I’ll be keeping an eye on going forward.

More than anything at this point, I’m just sharing an observation of how the medical research community and the medical community at large can sometimes be at odds with each other, knowing how conflicting and confusing it can be from a patient’s perspective. It just reinforces my belief that you have to do your own research, be your own advocate, and make decisions that YOU are comfortable with based on what you’ve learned.

—Dan

For men who have had prostate cancer surgery, radiation therapy at the first sign of a rising PSA level can reduce the chances of the cancer recurring.

Source: Immediate radiation when PSA levels spike after prostate cancer surgery helps reduce risk of recurrence

I need a little help from my friends

On By DanIn Prostate Cancer3 Comments

A fellow prostate cancer blogger out of Auckland, New Zealand is looking for a little assistance getting back into music after his diagnosis and treatment have thrown him off his path. If you know of anyone who has had a similar experience, please have them check out his post below. —Dan

Do you know anyone who is a musician with cancer (or in remission) who has struggled like I have to motivate themselves and get back into it?

Source: I need a little help from my friends

Day 2,241–Doctor’s Visit

On By DanIn Prostate Cancer7 Comments

My visit to the doctor this afternoon to review my latest PSA results (0.06 ng/ml) went just as I expected it would:

  1. There’s no definitive explanation for the elevated PSA yet.
  2. The elevated PSA seems to be stable, so no need to panic about recurrence.
  3. Retesting in four-month cycles will continue for the foreseeable future.

I’m okay with all of that. I seem to have turned the corner where I’ll always be concerned about my PSA, but I’m not going to let it control my life. It’s too consuming.

He reminded me of how slowly PSA can change and that we shouldn’t even begin to think about any intervention unless the PSA starts creeping up into the 0.15–0.18 range. That’s fine by me. If we get to that point, I’m going to be much more deliberate in selecting what, if any, salvage therapy would be appropriate given where I’m at in life and the potentially debilitating side effects that impact quality of life.

So I’ll call that visit a positive end to 2016. Let’s hope for a happy, healthy 2017!

BBC News: Prostate cancer laser treatment ‘truly transformative’

On By DanIn Prostate Cancer, ResearchLeave a comment

I came across this article on BBC and found it to be an interesting development in yet another potential treatment option. It will be interesting to see how future trials pan out.

Prostate cancer laser treatment ‘truly transformative’ – http://www.bbc.co.uk/news/health-38304076

Blasting Prostate Cancer with Testosterone

On By DanIn Research4 Comments

Here’s an interesting development in the field of prostate cancer research. The headline is a bit sensationalistic, but the researchers seem to be seeing “unexpected” and “exciting” results.

Professor Sam Denmeade, from Johns Hopkins University School of Medicine in Baltimore, US, who led the study, said: “”Our goal is to shock the cancer cells by exposing them rapidly to very high followed by very low levels of testosterone in the blood. The results are unexpected and exciting.

Man ‘cured’ of prostate cancer after doctors shock tumour to death with testosterone 

Update: 3 December 2016

Here’s the link to the abstract highlighting the preliminary results:

Rapid cycling high dose testosterone (Bipolar Androgen Therapy) as therapy for men with metastatic castrate-resistant prostate cancer (mCRPC)

Day 2,212 – PSA Results

On By DanIn Prostate Cancer11 Comments

My latest PSA test on 28 November came back at 0.06 ng/ml, up slightly from the 0.05 ng/ml back on 1 August.

That could just be the difference between a new moon and a full moon or simple instrument error. It’s a concern, but certainly nothing to panic over at the moment.

I’m glad to see that I’m consistently hovering in that 0.04–0.08 range, although, if I were to lay a trendline over the data, it would certainly be moving in an upward direction towards that recurrence threshold.

The one nagging thing that hangs over my head is those recent studies that showed PSA at 0.03 ng/ml can be predictive of recurrence. I’ll press the doctor on that again at my appointment on 29 December.

Lastly, I’ve accepted the fact that this will be my new reality: Testing, waiting, and wondering every four months. Not the path I hoped to be on six years out, but it is what it is.

Thanks to everyone for your thoughts, support, and prayers.

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Day 2,210 – PSA Test Time

On By DanIn Emotional Aspects, Prostate Cancer9 Comments

Time to buckle up for the next ride on the PSAnxiety roller coaster. I had my blood drawn this morning for my next PSA test. Now we wait, typically three days before seeing the results online.

On the good news front, I’ve been completely unemotional leading up to this PSA test. I’m not sure why, but it’s been a refreshing change from the last PSA tests.

My appointment with my doctor is on 29 December, and I’ll post my results as soon as I have them (and geekily update my spiffy little PSA chart).

Six Years

On By DanIn Prostate Cancer2 Comments

Six years ago today, I was told I had prostate cancer. Guess what? It’s six years later and I’m still alive and kickin’. Woo-hoo!

PSA Trend 20160803Of course, the cancer storm clouds may be brewing as I head into my next PSA test in a few weeks. Who knows what crazy result it will yield. Remember, in the last 15 months, we’ve gone from undetectable to 0.05 to 0.04 to 0.08 to 0.05. Any bets on the results this time around??

My schedule in early December is quite hectic, so I’ll likely go for the blood draw during the week of 28 November. As usual, I’ll wait three days to get the results online, and then my appointment with the urologist is on 29 December.

Stay tuned. In the meantime, here’s wishing everyone a Happy Thanksgiving with family and friends!