I come back here now and then, and see what cooking. Some interesting posts as of late. I posted this recently on another forum that I pop in and out of periodically. Thought I'd copy it and post it here as the timing seems right and help the new guys to trust their instincts and throw away the rear view mirrior once they're moving forward. We talk alot about our life changing event, things like plant based diets, cutting out sugar, eating tumeric, no eggs, all sorts of stuff that means little to me, and for sure good for you because it helps you. I try to focus on the postive moving forward. I never thought for a moment I would have anything but a succcessful outcome to my procedure. Did that thinking help me, or was it purely the surgeon? Who knows.... I've had my ups n downs, every down has made me a better man, eventually. Here's the copy:
Tomorrow is my two year anniversary of RRP, August 30. Which means my fourth post-PSA was just completed, and continues to be undetectable at <.04. I don’t share much, but thought I would today.
My story if you’re interested follows. I was diagnosed 4+3, at age 56. Almost zero family history of cancer. Not just prostate, but cancer in general. In my family research of grandparents, a dozen uncles/aunts and dozens of cousins, there was one aunt with cancer, and the rest have lived long healthy lives. I did four and a half years of PSA testing with a very good urologist who kept me motivated coming back. Great guy. As a matter of fact, on this journey, never run across a bad nurse, doctor, receptionist. Not one. Every one, fantastic. I’ve treated every one of those I met along the way as you would expect to treat someone who may be the one to save your life. Call me crazy, but I think every one of them deserve that respect. I think you receive back more than what you give in respect.
On the day I got the news I had PC, I felt some relief. Years of testing and wondering if I was wasting my time with some silly little thing that didn’t matter much at all. (are those lyrics? sounds familiar) During the drive home from his office, I knew I was doing surgery even though I was told of other options. Zero research at that point in time, for four and half years. Never seriously thought in that time that I could actually have cancer. Somewhere along the way I told myself that some people can have higher PSA results and it’s just “normal”. I have no idea if I read that out of context, heard it on TV, or I just made it up and believed it. Head in the sand, apparently. …had my head been elsewhere, I would have seen the cancer myself. (Figured I beat all of you to that punchline)
I met with two other surgeons, recommended by my urologist, who both told me of non-surgical options as well. I told the second he didn’t need to tell me about radiation, he told me it was his responsibility to discuss it, I let him continue. I researched radiation mainly after my surgery, as I was intrigued by the concept of it. There are a lot of fantastic forums out there, with people willing to share all sorts of experiences. Some are very technical, others like this forum, more personal. Amazing to me, even to this day how generous people are sharing their experiences. You are all wonderful people for sharing.
I learned in person too, as I suddenly found of friends whose fathers had this disease. One man Tom, his experience with surgery failed the expected hopeful results, he let me know what lay ahead for him, as I awaited my own surgery. Tom passed from this disease within the last few weeks. And he just a few years older than I.
So what happened after my surgery? Pathology downgraded to 3+4, and positive margin <.1cm. Uro and I agreed radiation would be over treatment. No leakage once catheter was removed. Nurse sent me home from hospital with three baby Pampers to use as pads for anticipated leakage. Two stayed completely dry after 36 hours. So I tossed the other one. I gave back the adult diaper package someone had given me from his personal supply. He had shared his challenges post-surgery with me prior to my surgery.
Good erections came back almost immediately. However, I just developed a unique little upward kink in Mr.Springboard. A little character to it now. Turns out to be a case of Peyronies. It can happen to all of us men as we age but mine related to conditions after surgery I’m certain. Apparently when an erection isn’t 100%, trauma may occur, and cause some internal scar tissue. As the Uro told me this week, “No more cowgirl. You need to be 100% in control of penetration”. So the learning process continues. Just a little tip for the rest of you all. (pun intended)
When I do talk to others I tell each to research all of their options before making a decision. But most importantly, once that research is complete, simply trust their gut and follow it. I would never suggest anyone to follow my path of deciding their treatment, within a day, without waiver. Never.
Once a treatment decision is made and you stick to it, don’t look back. Some treatments may fail, most treatments will succeed. Levels of success and failure will be a grey area for many of us, based on expectations of life after treatment and of course, things may change with time better and worse.
The worst thing that could happen to me is not just the recurrence of cancer.
For me, the worst thing that could happen is recurrence and I didn't trust my instincts and I allowed someone else plant seeds of doubt and changed my mind about treatment. For that reason I won’t question someone’s treatment option. So, the worst case, can’t happen to me. Lucky.
Sometimes when I’m on these sites it’s hard to share my good fortune, but I know I shouldn’t be bashful to do so.
In summary, I’ve lived a charmed life for 58 years. Here’s to the next 40. I doubt many people are luckier than me. But I hope you feel you are, and hot damn, good for you!!
ufknkidding Member Posts: 47 Memberedited September 2019 #2Great and Promising Story!
Thanks for sharing. I hope I have a similar outcome as you. I get the cath removed tomorrow and am so glad because it has kicked my butt. It still hurts on my right side when I cough and I hope it's not a hernia but I'll find out tomorrow. Damn coughing anyway. But your story gives me hope and a possibility for a bright future.0
Gleason score 3+3 ... Watchful Waiting
My doctor says only one of 14 samples shows cancer in 20 percent of sample taken and minimal chance has spread but I am good candidate for surgical removal But she recommends complete removal including seminal vessel removal. I’d prefer less invasive surgery but think I need to see a doctor who has the skill to do this.0
lighterwood67 Member Posts: 351 MemberBest Stories
Keep posting. It is always good to hear from folks who have had the surgery with little or no side effects. This is both a mental and physical journey for us. Wish you continued good health on your journey.0
- 120.1K All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 120.3K Cancer specific
- 2.8K Anal Cancer
- 437 Bladder Cancer
- 302 Bone Cancers
- 1.6K Brain Cancer
- 28.3K Breast Cancer
- 384 Childhood Cancers
- 27.8K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.1K Gynecological Cancers (other than ovarian and uterine)
- 12.7K Head and Neck Cancer
- 6.3K Kidney Cancer
- 654 Leukemia
- 772 Liver Cancer
- 4.1K Lung Cancer
- 5K Lymphoma (Hodgkin and Non-Hodgkin)
- 228 Multiple Myeloma
- 7.1K Ovarian Cancer
- 39 Pancreatic Cancer
- 481 Peritoneal Cancer
- 5.1K Prostate Cancer
- 1.2K Rare and Other Cancers
- 528 Sarcoma
- 699 Skin Cancer
- 640 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.7K Uterine Cancer
- 6.2K Other Discussion Boards