It’s that time again. Another four months have elapsed and I just had my blood drawn for the next lap on the PSA roller coaster.
Actually, the anxiety leading into this test has been pretty much non-existent. Not that there isn’t any concern; it’s just that I haven’t let it control me. Why get all worked up about something you don’t know the answer to, right?
I should have my results by my next monthly update on 11 April. Stay tuned.
I came across this article on one of my social media feeds and I thought it worthy of sharing. It’s a sorry indictment of where we stand in healthcare and pharmaceutical costs in the United States and the impact those high costs have on patients who are already struggling emotionally as they battle their cancer. (I’m afraid, of course, this will only get worse under Trumpcare if it’s enacted).
Sticker Shock Forces Thousands Of Cancer Patients To Skip Drugs, Skimp On Treatment
The last month has been a pretty busy month with relatives visiting from out of town and giving them the grand tour of San Diego County. There were also some transitions at work that have left us short-handed until we find a replacement for an employee who moved on to pursue his career elsewhere. Translation: Little time to think about pesky cancer.
But it’s approaching the four-month mark for my next PSA test, so those thoughts will be creeping to the front of my brain soon enough. I’ve scheduled my next PSA blood draw for 6 April 2017.
Till next month (with the latest PSA results in hand, hopefully)…
It’s good to be distracted. I’ve barely thought about prostate cancer since the holidays, and that’s been fantastic. What’s not fantastic is the reason for the distraction. One word: Trump.
I’ll not turn this into a political blog, but suffice it to say, I’m not a fan. But, seeing as the repeal of the Affordable Care Act (ACA) is on the top of the new administration’s “To-do” list, some passing thoughts on the topic here are not out of line.
When I decided to leave my job five years ago and move from Indiana to San Diego (about 15 months after my surgery), my health insurance was intact through COBRA coverage. (For those readers outside the U.S., the Consolidated Omnibus Budget Reconciliation Act (COBRA) of 1985 gave employees who left their company the right to continue their health insurance coverage through their former employer’s health plan for up to 18 months after leaving.)
My COBRA coverage ended in September 2013, just a few months before the ACA’s requirement to cover individuals with preexisting conditions kicked in on 1 January 2014. I tried to purchase insurance on my own long before the September expiration of my coverage, but was told that I was uninsurable because of my prostate cancer diagnosis or, if they would cover me, the monthly premiums would have been north of $2,500 USD per month.
I’m a veteran of the U.S. Navy, so in May or June of 2013, I turned to the Veterans Administration (VA) to see if I would be eligible for care.
For those who don’t know, there is a tiered eligibility system in place to determine your eligibility and your level of care with the VA. Not all veterans will be eligible for care. Fortunately (?) for me, I served in-theater in the Persian Gulf during Operation Desert Shield/Desert Storm during the first Gulf War. That made me eligible for coverage under the VA, and it’s where I’ve been getting my cancer care ever since.
We’ve already heard discussions of lifetime caps on coverage being reimposed; debates over preexisting conditions; and a host of other changes that scare the crap out of most people, cancer patients in particular. The administration has already imposed an across-the-board federal government hiring freeze at a time when the VA healthcare system is struggling to provide quality care to all the veterans from the Iraq and Afghanistan wars, as well as to veterans like me. It’s simply bonkers (that’s a technical term).
So I’ll climb down off my soapbox now and thank the new administration for pushing the notion of cancer recurrence pretty much completely out of my mind for the last two months. There are bigger things for me to deal with than piddly little ol’ cancer.
I came across this interesting article late tonight talking about how, if your post-treatment PSA nadir after RT or ADT is greater than 0.5 ng/ml, you’re more likely to have the prostate cancer return.
I’m going to re-read this with a fresh set of eyes tomorrow to better understand the study and its details.
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.
So it’s been 72 months since my radical prostatectomy. How am I doing?
Graphic Biology Ahead
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.
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.
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.
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).
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.
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.
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?
My visit to the doctor this afternoon to review my latest PSA results (0.06 ng/ml) went just as I expected it would:
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!
Dan's Journey through Prostate Cancer 