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Please welcome new member Wall Guy

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Posted 8/21/2022 9:25 PM (GMT -5)
In another thread, Wall Guy made his first post as follows:

Wall_Guy said...
Thanks for the story. My PSA was 4.5, MRI and biopsy positive (G3 4+3). Looking at surgery or radiation, Dr. says both similar results after 10 years.

Posted 8/21/2022 9:33 PM (GMT -5)
Wall Guy,welcome,
not a lot of detail here
I would start off by saying it would be worth getting a second opinion on your pathology slides. Prostate slide readings are very subjective and most pathologists or at least many, look at many different types of cancer slides. Dr Jonathan Epstein is a leader in this field , and he and his team only look at prostate biopsy slides. They offer a second opinion service that you shouod take advantage of.
My pathology was originally Gleason 8, he downgraded it to G6 and that was later confirmed BY Memorial Sloan Kettering pathology. This changed the course of my treatement.

Also, have you fully explored both types of treatment? Take advice on surgery from a surgeon, and take advice about the various forms of Radiation from Radiation Oncologists who specialize in each type of radiation available.

Others will chime in with more detailed ideas Good luck in your decision making process, make sure you get educated before you make a final decision, so that you have no regrets no matter how it turns out.
Posted 8/22/2022 9:47 PM (GMT -5)
Wall Guy, sorry that you are here! At diagnosis, my PSA was slightly higher than yours (4.9 pre-operation), and I was a G7 (4 + 3). I had an extension near my left neural bundle, heading towards lymph nodes, which tilted me in the direction of a RALP. I had a very active lifestyle up to the operation, then followed doctors orders afterwards, and worked up to the same level of activity over 10 months or so. As of now, there basically is no change to my lifestyle, other than I keep a closer eye on where bathrooms are, since the little sphincter muscle that I now use is less robust than that removed with the prostate. Best wishes.
Posted 8/23/2022 12:05 PM (GMT -5)
Wall Guy, Your biopsy results suggest treatment is in your future. One of the challenges with a diagnosis of prostate cancer is there are so many treatment options available and it does take a little effort to understand the pluses and minuses of each treatment. Although they each have a very high degree of success they are very different in side effects. It’s important to chose the treatment that offers the least risk of side effects for your particular situation. This is great forum to ask questions and seek advice that will help you in making your best choice. Terry
Posted 8/23/2022 5:23 PM (GMT -5)
Thanks, all good information. I scheduled surgery for Oct 21st, RALP. Found out they do 7 robot surgeries a week and prostate removal is one of the most active.
I have a half marathon mid September in Maine. Hope I can keep these up after surgery, great exercise and an active vacation plan.
I'll figure out the signature later.
Posted 8/23/2022 7:37 PM (GMT -5)
Hi Wall Guy,
I had my RALP in February 2021. I was out of the hospital the same day. I imagine that it some something to do with covid, but I did fine. I stayed the first night in a nearby hotel, just to be safe. I'm sure you have been over all of this, but you will have a new best friend called a catheter for about a week to 10 days. For me this was the toughest part of recovery. It was a great relief to get it out. It took about 8 weeks to be able to lift over 10 pounds. It's frustrating but doable. I would certainly talk to your surgeon or Uro about running. There's alot of rearranged stuff down there to jar around. Personally, I walk alot. I started out slow and worked my way up to about 4 miles every morning with shorter walks throughout the day. You may have some incontinence issues to deal with. Most folks do. Do your kegels as directed by your Uro. My incontinence lasted for a couple of months. I started out going through a lot of depends and eventually got to one pad per day. I had to follow up with radiation, which brought it back, but most of my friends who had the surgery alone got over theirs or had significant improvement fairly quickly. I hope things go well for you. Hang in there. Don't get discouraged. God Bless.

Jim
Posted 8/23/2022 8:23 PM (GMT -5)

Wall_Guy said...
Thanks, all good information. I scheduled surgery for Oct 21st, RALP. Found out they do 7 robot surgeries a week and prostate removal is one of the most active.
I have a half marathon mid September in Maine. Hope I can keep these up after surgery, great exercise and an active vacation plan.
I'll figure out the signature later.


I was training for a marathon when my diagnosis came up, so I cancelled it and made my surgery my race day, continuing with the training and tapering before "race day". I think it really accelerated my recovery, since I was at peak fitness the day of the RALP. I did my first half-marathon 9 months after my RALP and had to stop twice to take a leak, but otherwise felt fine (but slow). I did my first full marathon 3 months later and felt fine (but, again, slow). Looking forward to my next half in November and full in March, to see if I can overcome the slow feeling.

I went into the hospital at 5AM, started surgery at 7 AM, and went home at 4:30 PM. Listen to your body and don't push it. Herniating your incisions is a distinct possibility, and, as my PT would tell me, the body heals from the outside in, so after the incisions have healed on the outside, they are still recovering on the inside. A year and 8 months post-RALP, I can still feel one incision when I plank or paddle my outrigger canoe.

Post Edited (patrickm) : 8/23/2022 6:26:38 PM (GMT-7)

Posted 8/23/2022 9:47 PM (GMT -5)
Welcome Wall Guy
Great advice available here. I'm so happy for this forum. It helped me with worry and gave sage advice.

Good luck

Glen
Posted 8/24/2022 8:35 AM (GMT -5)

Wall_Guy said...
Thanks, all good information. I scheduled surgery for Oct 21st, RALP. Found out they do 7 robot surgeries a week and prostate removal is one of the most active.
I have a half marathon mid September in Maine. Hope I can keep these up after surgery, great exercise and an active vacation plan.
I'll figure out the signature later.

Hello, Wall Guy and welcome. In your initial post you indicated that you were considering both radiation and surgery but now say you have decided on surgery. If that's your final decision I'll say good luck and suggest you make sure that YOUR SURGEON is highly experienced (250+ procedures) in prostate surgery, not just that the center you are using does a lot of robotic surgeries. I would also second the suggestion to get your slides read by Dr. Epstein at JHU so you have a clear picture of what you're dealing with before undergoing treatment.

I'll also suggest that, if you haven't done so already, that your due diligence should include meetings with some radiation doctors. Both SBRT and HDR Brachy would be good possibilities to cure you and perhaps leave you with milder side effects than surgery. FYI, here is a link to a couple of videos from noted prostate oncologist Dr. Marc Scholtz that may give you some perspective to consider if radiation is still on the table. https://www.youtube.com/watch?v=xorlw-cnwbk , https://www.youtube.com/watch?v=pya8n78br7s

In any case I wish you the best as you proceed.

Jim
Posted 8/24/2022 12:34 PM (GMT -5)
Welcome to HW, wall guy. It looks like you have done your research and have a plan. We have a number of runners on this forum, and when you mentioned a half marathon in September, I went back and looked at my 2009 runners journal to see if I could determine how long before I was able to run again.

And I ran up until a day before surgery and also worked out with weights. For one week after my surgery in May I recorded notes, and then my journal went blank until December. I am sure that I was able to run again within 2-3 months but I just didn’t journal it. By December I was back up to 6-7 miles on my runs. Also I noted walking up and down our driveway with a catheter after surgery.

One week before surgery I loaded up with birdseed and dog food so I wouldn’t have to do any heavy lifting for awhile.

So wishing you a positive outcome with your surgery and return to running.
Michael
Posted 8/24/2022 2:34 PM (GMT -5)
Wall Guy, I agree with the advice given by both Forum Moderators above. These are guys who really know their stuff. The interpretation of biopsy results can be subjective. I had three different evaluations of my slides including two from Cleveland Clinic who specialized only in PCa.

In addition to the second opinion on your slides it’s very important to talk with experts in radiation and if you decide surgery is appropriate for your situation to seek out a highly qualified urologist who does prostatectomy routinely. In any treatment the best can make a huge difference. Most urologists treat men, women and young people for a variety of conditions and most don’t specialize in this difficult surgery. Statistics suggest that about half of those men having prostatectomy will have reduced sexual or urinary function more than a year later. Best wishes for a successful outcome and I believe the best decision is a fully informed one. Terry
Posted 8/29/2022 11:29 PM (GMT -5)
Good informaiton. I am having a PSMA scan in mid September, right after I get back from the half marathon. Dr. wants to be sure the cancer is only in the Prostrate. The prostate is slight enlarged, so that is being considered. Based on the PSMA scan we'll see if surgery is still an option or if radiation would be the better route.

I think we are looking at a run in the spring at the Tetons. Should be beautiful. Probably a slow run so lots of time to look around. Last year I was 5th in my age group, so not too bad.
Posted 8/31/2022 9:47 PM (GMT -5)
Tudpock18, I have seen several videos from Dr. Scholtz and he has been an advocate of radiation over surgery. I followed your story with your surgery and recovery, seen may stories of men doing surgery and recovering. I "guess" he is advocating (or talking about) radiation inserts and the advancement of radiation over the past 10 years with radiation "blockers" to help protect the adjacent organs.

My urologist said the either surgery or radiation would achieve "similar results over 10 years". Research that I have done shows the same, with surgery being "marginally" better.

The RO that I spoke with was suggesting hormone theory followed up by 5 weeks of radiation. Nothing was mentioned about radioactive inserts to tarket the cancer, especially when mine seems to be toward the seminal vessels. Was I missing something or the IMRT just the standard practice?

What I know now is my prostate is slightly enlarged and the cancer is in a large percentage of the prostate (Gleason Score of 4+3). I have a PSMA Scan in a few weeks to better identify the growth of the cancer. My urologist stated depending on the PSMA, surgery may not be the best option (I am guessing he can't get enough margin in removing just the prostate).

As much as I want this cancer in someone else's petri dish, it sounds like I need to research more. One post I liked was "I would rather die WITH cancer, than die FROM cancer". I have not seen many posts from men doing only the radiation theory, but seen many with radiation theoropy "after" surgery.
Posted 8/31/2022 11:50 PM (GMT -5)

Wall_Guy said...
I have not seen many posts from men doing only the radiation theory, but seen many with radiation theoropy "after" surgery.

Primary treatment is around 60% surgery vs. 40% radiation treatment plus or minus 5% from what I recall.

A lot of men have radiation as primary treatment, a lot less have radiation as a secondary treatment. Most men who have a simple successful surgery or radiation treatment do not post on websites so the posts your read are not typical of the universe of men with treated PCa.

Radiation can be beam radiation or inserted radioactive sources or both to get radiation where it is needed. Beam radiation is very common for many cancers and inserted sources (brachytherapy) is less common. Using both together per is less common and for high risk cases.
Posted 9/1/2022 8:39 AM (GMT -5)
Wall Guy, I believe if radiation oncologists were the ones diagnosing prostate cancer more guys would have radiation as their first treatment choice. Keep investigating all your treatment options. Terry
Posted 9/1/2022 11:06 AM (GMT -5)
This transcript of a pod cast is pretty informative on brachytherapy. It would be my pick of procedure, alone or in combination.

Penn Medicine Site

Ugh, finally got it to work. Thanks, @mumbo
Posted 9/1/2022 11:04 PM (GMT -5)
https://www.pennmedicine.org/for-health-care-professionals/for-physicians/physician-education-and-resources/physician-interviews/2022/april/penn-medicine-newest-offering-high-dose-rate-brachytherapy

Corrected the double https in link.
Posted 9/8/2022 9:26 PM (GMT -5)
Thanks. Pen Medicine has an interesting approach and I agree with centralPAdude comment. The SBRT looks interesting as well, fewer treatments. I have to agree with Terry's Cellar, a very good observation, who gives you the first news.

I have watched several videos from Dr. Scholz and he definitely is an advocate of radiation. Other videos from Dr. Ahdoot comparing surgery and radiation. It appears over a 10 to 15 year period the results are close, with surgery marginally better. One thing he did show in his research was other cancers occuring after radiation treatment (1.69 x more likely).

I am thinking of talking with an Oncologist (like Dr. Scholtz) and get their option on treating cancer. It seems that would not have a dog in the race for either surgery or radiation, they want to cure the cancer.

Now the comment comes up on "younger" patients go surgery, older patients radiation. I am 68 and the average age for male deaths is 76, declining some due to covid. My father and younger brother passed from heart attacks in their mid 60s. Doing nothing the survival rate is about 96% in 10 years. Throwing in the age factor, the surgery option is hard to justify. Interesting topic to research.
Posted 9/8/2022 9:39 PM (GMT -5)
Just had to repost Tudpock's Brachy Treatment Amazing Journey, started in 2008!! Made it a Clickable link:

https://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1

Post Edited (Wings of Eagles) : 9/8/2022 7:47:24 PM (GMT-7)

Posted 9/8/2022 9:43 PM (GMT -5)
I've been a long-term patient of Prostate Oncology Specialists, which is Scholz's practice. But my initial consult was with his partner, Richard Lam. He spent considerable time with me and my wife in staging my diagnosis and assessing my treatment options and I felt like it was about as un-biased as it could be. Given Scholz's anti-surgery reputation, I had expected more of a bias towards radiation, but I really didn't experience that.
Posted 9/9/2022 9:41 AM (GMT -5)
Thanks Michael_T, this really helps, 10 years and appears no return of Cancer. I need to find such a consultant here, so far I have been talking with the surgens and RO, each with their own specialty. The one thing I found in Dr. Adhoot talk was a return of other cancers after radiation, I had not seen that before. Given my age, not sure that is that important.
Posted 9/9/2022 10:13 AM (GMT -5)
Wall Guy, I’m glad you’re doing your homework. The best treatment decision is an informed one. Today’s modern and guided radiation is effective and safe. In the past that was not always the case and it’s possible/probable that the (1.69 x more likely) number quoted by Dr. Ahdoot is no longer accurate. My urologist who suggested surgery at the time of my diagnosis was very casual about the side effects of surgery. I explored this website including the signature’s and found a lot of issues with surgery and not a single issue with radiation as a monotherapy. Radiation following surgery did identify some issues. Not very scientific; however, it did influence my decision. No matter your treatment decision I always recommend seeking out the very best treatment team. I believe the best do make a difference. Terry
Posted 9/9/2022 6:03 PM (GMT -5)
Terry's Cellar: Thanks. I have been looking at the Signatures as well and your's and Michael_T really jumped out to me as information I needed. I have a consult with radiation in a couple of weeks so now I know more what to ask. Radiation is only 4 mi. from home so very convenient.
Posted 9/9/2022 7:07 PM (GMT -5)
Wall Guy, My email is in my profile and feel free to contact me for any specific questions you may have. There are a number of radiation guys including SBRT that can offer first hand advice as well. I will always be grateful to those here that helped me my decision. SBRT is one form of EBRT and may not be available close by. For me I had to drive about 2.5 hours away. However; with only five radiation treatments it ended up saving me time in the end over IGRT. Terry
Posted 9/9/2022 8:21 PM (GMT -5)
Terry's Cellar: The SBRT center here is 16 miles away, very convenient. For 5 treatments or so, that would be nice. The IGRT radiation is 4 miles away. I will definitely have that conversation with the RO doctor.
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