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A Little Sunshine ☀️
Life has been busy and I've not been around much lately, but I wanted to drop in and sprinkle a little sunshine on this often grim situation so many of us have faced or are facing.
Last week was my 7th post RARP PSA test that came back undetectable. So far the surgery proved the right path for me and still not a single millisecond of erectile disfunction nor incontinence. I feel blessed for all three of these outcomes!
I was fortunate that most of my nerves were spared, this certainly had an impact on my ability to recover completely. But I prepared exhaustively for months before surgery by hammering my core muscles, pelvic floor muscles and doing everything within my power to have an impact on the outcome and I attribute that effort as well.
While not everyone will be as fortunate as me, the reason I come back here from time to time is to remind you that if you are just embarking on this crappy journey that it doesn't have to be the worse case scenario, you CAN come out the other side of this relatively unscathed.
For me, I had a very hard time finding the good news out there about this disease. The people most likely to stick around on help sites and forums tend to be those who are still battling, and those like me tend to move on to other things and aren't around to remind you that nothing is guaranteed.
I was diagnosed at 54 and I recently turned 56. Pretty young for this disease but as awareness spreads, it seems more and more guys my age or younger are diagnosed. At 54 I was told by 9 doctors (because I wanted lots of opinions) that the best path was RARP because I could recover easier than someone who is older, and I'm glad I did it. This is the only way they truly knew the extent of my cancer, by evaluating the entire prostate. I had a very high decipher score, so even at Gleason 3+4 - which is considered moderately aggressive - I was moved into highly aggressive diagnosis and the removed prostate showed I was worse than my biopsy indicated.
I know this is a lifetime journey, not a one time shot. This ugly monster can rear up again whenever it wants to. But, until then, I count every day as a blessing that I was one of the lucky ones.
Since my surgery, I've helped a few very worried folks that I know or who were referred to me by friends to understand that while this is scary, it's not guaranteed to be as negative as you might believe. My sex life is incredible (and in some ways improved), and I feel every bit of the man I was before all of this started, in nearly every way possible.
For everyone still struggling after surgery and treatment I pray for you all, I can't know how you feel and can only imagine it. For those just starting out, may this little ray of sunshine brighten what every one of us here knows is a very difficult situation to deal with.
💙
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Thank you for taking the time to share your outcome and congrats on your progress. I can understand why those with good outcomes want to close this chapter and move on so thanks for thinking about us still in the trenches.
I’m heading down the surgery road and wonder if you can share your pre and post excersize regiment?
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1 ReactionThanks for sharing that! 🙂 Wonderful news! 🙂 Go celebrate with Ice Cream!
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1 Reaction@ireland1964 Lots of core strength training, but with pelvic floor thrown in. Think about doing normal core exercises, such as squats, but you engage your pelvic floor on each movement, you literally hammer both groups. You blow your pelvic floor out pretty fast, before long you can't even engage it easily.
I also did kegels religiously every day, all day. And I would, as per my pelvic floor therapists advice, engage my pelvic floor doing normal day to day things like sitting and standing because those are times when you are likely to leak afterwards so she wanted me to have the muscle memory for it.
I saw a pelvic floor therapist BEFORE I needed one to see how much work I needed and, by two days before surgery, she told me I had the strongest pelvic floor of any man she'd worked with. I was pretty sure I could bend steel with it 😂.
My pelvic floor training was so thorough that I never felt any transition from using a sphincter to control my bladder to using muscles (since the sphincter goes away after surgery). Basically we end up with the same mechanism that women have to control their bladder, we just have to learn to control it.
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2 ReactionsGreat to hear about your positive attitude and your successful treatment.
Not sure if you’re really interested, but ancan.org Has a group that meets with people 60 and below. They talk about the types of issues that come up with someone who’s gotten this at a younger age. Theyv meet next on Oct 8 At 5 PM Pacific 8 PM Eastern.
@jeffmarc I'm not sure if I would be interested or not, honestly. Do they NEED someone like me? If there are already a dozen guys doing it then I'd probably just be a third (or thirteenth) wheel.
@survivor5280
I think at your age they absolutely would. For many getting diagnosed young is very devastating and thinking their life in terms of quality of life is over. Jeff could expand whether the group is similar to this group where many of the thousands who have been successfully treated move on and are not on these groups, so it is important for newly diagnosed to hear from people like you to give them some sunshine where they may be thinking everyday in the future will only bring rain.
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1 Reaction@survivor5280
It can give you a feeling for how other people with PC at a younger age are handling it. It’s more about emotional issues and how people can learn to live with something that may last decades.
Ancan.Org has a Speaking Freely meeting, where about 25 people come and talk about their thoughts and worries about prostate cancer, but not about their diagnosis or treatment. Lots of people get comfort and satisfaction from going to that meeting.
The same can be said to be true about those under 60 meeting and commiserating with each other.
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1 ReactionHere's a suggestion: I was diagnosed with stage 4 at age 56, and yesterday, as I mentioned in another thread, my family threw a 5-year cancer-versary celebration for me, to mark my official passage into long-term remission (pharmaceutical-assisted).
I thought it would just be fun, but it actually felt like more. It marks the boundary between the first 5 years, when I monitored my cancer closely, and new next (20? 30?) when it will fade more into the background. Celebrations are good for drawing lines, whether they're weddings, graduations, funerals, or christenings. We have the ritual of ringing the bell after finishing chemo or radiation; we need to introduce more markets.
So when you hit 5 years, throw a "Long-term remission" party. I didn't think of asking for gifts, but why not do that too? 😉
@northoftheborder I like it! I could do a mob-themed party where everyone brings envelopes of money that goes into a pillow case 😂
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