My Story Consolidated

JasonB176

I have started several threads but thought I'd do a new one as a summation and then just keep this one to update going forward. A brief review:

I'm 52 and diagnosed with prostate cancer last month. Family history is bad: father and maternal grandfather died of prostate cancer; mother and her sister died of breast cancer; three first cousins also diagnosed.

In 2021 my PSA had risen to 5.1 but the DRE was negative and an MRI only showed benign enlargement with no PI-RAD scores. Subsequently, my PSA dropped to 3.6 the next year and nothing was done. It went back to 5.1 this past December and for the first time the DRE showed something was wrong. I had an MRI and this time it came back with PI-RAD 5. I had a transperineal prostate biopsy done in January with four cores coming back as cancerous. Three were 3 + 3 but one was 3 + 4 although the 4 was less than 5%. Two perineal invasions were also identified.

I met with my original urologist who recommended a robotic prostatectomy. He did mention the possibility of some AS but was hesitant. He strongly recommended against hormone and/or radiation therapy given my age and good health. He doesn't do the robotic surgeries and the surgeon at his facility who does is not that experienced (less than 1000) so I said I would not want her performing the procedure if I decided to go that route. I had my pathology slides sent to a different institution and just had my visit with another urologist today. The pathology report at the second place was almost identical to the first one except the perineural invasions were not listed.

I was impressed with the urologist I saw today. I was not rushed at all. I was actually the one who wrapped up the visit. Like the first urologist, he did not think a PET scan was necessary nor was he concerned about the perineural invasions. He also recommended against hormonal or radiation therapy. His tone was more serious though and he felt AS was really not an option given my family history. He didn't think the genetic test would be that helpful given the family history and especially because it seems the cancer took off over the last year. I asked about possibly waiting until the fall so I could have the summer without recovery but he was hesitant about that feeling like it's possible the cancer could significantly spread by then. He said he's done about 1000 of the robotic prostatectomies and has done them for the last 11 years. I read many good reviews of this urologist online although few were specific about prostate removal and the aftereffects.

I'll be meeting with a third urologist on 3/26/24. The reviews of this doctor are amazing and many specifically mention quick recovery for urinary continence and erectile function. I will no doubt be impressed with him as well. It most likely will come down to a gut decision but it would seem prostate removal is in my near future.

jc5549

I am sorry you are dealing with this at such a young age. I was diagnosed at 58 and that was young enough.

Although you have a strong family history I believe you have GG1 disease. If so AS is completely reasonable unless your MRI lesion is large and/or very peripheral near the capsule. You otherwise have reasonable numbers that can be watched and a decision made if things progress. AS does not mean you will ignore your disease, rather, you may be able to hold off intervention and enjoy your continence and erectile function as long as possible before having to work on rehabilitation.

I had GG2 disease and held off for a year of AS before pulling the trigger. Hopefully it was a good idea, I am now 6 weeks out from a robotic prostatectomy (negative margins but did have T3a disease). Dealing with recovery and will likely post for support soon if my continence doesn’t improve more rapidly.

I’m not trying to make this about me, I’m just saying I don’t agree that waiting is necessarily dangerous or a bad idea. A man of 52 yrs with your family history may inevitably need the prostate out, the question may be when. Good on you for getting multiple opinions. This really is the tougher part of dealing with this disease in my opinion. Know that I’m with you in spirit no matter what you decide to do.

jc

Clevelandguy

Hi,

Sounds like your on a good track with removal, the perineal invasions & the 3+4 don’t sound like anything you want to hang around any longer than necessary. I am surprised your Urologist is not concerned about the PNI. Sounds like the cancer is getting ready to leave the barn, nothing to mess with in my humble non medical opinion.

Dave 3+4

JasonB176

I was a little freaked out by the urgency that he was conveying to me. I was thinking that I could do some AS for a few months. This urologist has appts for surgery available next month. I'm not sure how soon the other urologist that I'll be seeing on 3/26/24 will have availability to do surgery but I'd rather wait a little longer if necessary if my gut tells me I'd be better off with him.

Clevelandguy

Hi,

I think it would be worth waiting a couple of weeks for a second opinion, good luck.

Dave 3+4

pmella

Jason, et al,

I'm new to this, as three weeks ago my path report showed GG2, Gleason 3+4=7, six cores. The Pattern 4s are all <10 percent, so, my guess is that I'm looking at radiation. I meet with the urological surgeon and radiation oncologist on 4/18, at MD Anderson, in Gilbert, AZ. I wish there were a medical oncologist on staff, but I don't believe there is.

But, I wanted to mention a book that I have found immensely helpful. Dr. Mark Scholz, The Key to Prostate Cancer. He is a highly credentialed urological surgeon with decades of experience. The book is lengthy, well-researched, and the key takeaway is to fully research your options, remembering that on balance this is a slow-growing cancer, and that 90+ percent of men survive it.

As a retired health care executive, I can attest to what Dr. Scholz counsels: surgeons have an embedded bias in favor of surgery. That is an observation, not a criticism. And, every physician can cite peer-reviewed evidence to support his/her predispositions relative to treatment options.

It's one thing to intellectually understand the post-operative complications relative to incontinence, etc., but experiencing it week after week, perhaps for months--it is highly variable in terms of individual responses--is quite another thing. The book is on Amazon and is well-worth reading for anyone with this cancer. Although it was published in 2018, the advice itself is not compromised by the passage of time.

Do keep us updated vis a vis your progress.

Phil

swl1956

Jason,

Thumbs up to Dr. Mark Scholz! If you haven't already, watch his videos too. Very informative. His knowledge is extensive and he has a manner of expression that is easy to follow. That said, he's not a big fan of Radical Prostatectomy. I agree with him totally for older men, but for younger men like you I'm not so sure? I've been vacillating between RP and RT and now seriously considering Focal ablation which I've been told I'm a candidate for. Having a 4+3 diagnosis GG3 unfavorable intermediate diagnosis last November it took me quite a while to calm down and get methodical about researching this conundrum we're in. I've had several docs tell me there's no rush. (Easy for them to say. Lols!) Of course likely not the case for very high gleason scored disease. Anyhow, I feel your pain. Hang in there.

JasonB176

I do believe that prostate cancer is overtreated in some cases. If I was only at 3 + 3, I would without question do AS despite my family history. The last urologist I saw made sense to me when he cautioned against AS due to the speed of in which the cancer moved in the last year combined with my family history. He said it's just a question of when and the evidence points to prostate cancer moving faster in patients my age given my background and what the recent tests showed.

I saw my father die an agonizing death from prostate cancer that had metastasized. He only went for treatment when symptoms developed and radiation initially helped but it came back. I have eyes wide open and know that the side effects will not be pleasant from surgery but part of my calculus is also that I want to avoid radiation and/or hormonal treatment if at all possible.

JasonB176

Wow. Was not expecting this. First urologist - active surveillance possible/PSA tests every 3 months.

Second urologist - AS not recommended; delaying surgery until the Fall not recommended; Schedule surgery soon.

Third urologist (seen today) - AS (active surveillance) highly recommended, PSA tests every 6 months. He brought in new data that the others didn't mention called PSA density which in my case was at .09% and anything under .15% is considered good. He said my amount of "4" (the concerning grade of cancer) is so small that it would be a tiny dot. He warned me EXTENSIVELY about side effects of surgery. Only a 60% chance that I would ever have penetrative sex again. He did say that due to my cycling, I may suffer no urinary incontinence at all.

I guess I'm taking this as good news but now I'm so confused my head is spinning. I was planning on booking surgery today and now I'm left in the vast unknown that is called "favorable intermediate grade prostate cancer". I watched some more Youtube videos about this and I have to say most seem to back the opinion of the third urologist I saw today. In fact one of them said the same thing - that in a few years, the official recommendation is going to change to AS for this type of patient. The urologist I saw today was extremely thorough. His dad also died of prostate cancer so he is very familiar with the effect that family history can have on decision making. He has done 2300 of the robotic prostatectomies. He even said that his bias should be to just recommend surgery but he didn't. He said even if you put off surgery for 3 years, that's 3 years of normal sex and normal everything. (Except, of course, my having to live with cancer in me.)

He, like the other two urologists, felt the perineural invasions were not a concern. He also said the family history is not a definitive reason to not seek AS. This is a break with the second urologist.

I'm going to take a few days to absorb the information. I'm thinking I might wait and get a PSA test in the summer, about six months after the January biopsy as recommended by the third urologist. If there is any kind of jump, I can just schedule the surgery. If things are holding steady, I might wait another six months to repeat the test.

centralPA

F the third Uro has done 2300 RALPs, then he has also observed 2300 post-RALP recoveries. Thats a big data set.

When I met with my urologist, after my biopsy results of 3+4 = 7, he was strongly in the active surveillance camp. He’s done thousands of prostatectomies too. I am taking his advice with an emphasis on the active in active surveillance.

JasonB176

https://csn.cancer.org/discussion/comment/1714285#Comment_1714285

I keep reminding myself that it would have been very easy for the surgeon to just recommend surgery but he didn't. There must be a good reason why he did this. In so many words, he basically told me 'listen, I know what I'm talking about as this has been my life's work' and he was pretty convincing.

Is there a certain threshold that would cause you to seek treatment? Would it be it progressing to 4 + 3 or would it perhaps be a higher percentage involvement of the 4 even if you're still at 3 + 4? I think I would personally seek treatment if the 4 part moved from the 5% it's currently at to closer to 30 or 40% involvement.

Redsoxx1918

My story is on here. You can find it if you look. I don't wanna go through all the details of my situation again. Just to say that I had a robotic prostatectomy. I had my surgery a few months back, in December. I'm a healthy 60 year old. I'm fit, eat well, and work out regularly. I was an active cyclist before my two biopsies and surgery and hope to return to it this June. I was scared as hell, nervous and confused like all of you. I debated on what to do and did so much research and saw so many doctors my head was spinning. Ultimately, I decided on the surgery. The MOST IMPORTANT thing you can do, is to pick the right surgeon. I went with a very well known and skilled surgeon that has done an estimated 4000 surgeries. He had previously performed a robotic prostatectomy on two of my co workers and they had very good results. One of my tumors was rather large and abutting the prostate capsule so there was some question as to whether all the nerves could be saved. I emphasized to my surgeon that it was very important to me for him to do his very best to preserve the nerves.

Anyway…..I had my surgery. He was able to preserve both nerve bundles. My pathology showed Gleason 7 (after biopsies only showed Gleason 6) and intraductal carcinoma, as well as perineurial invasion. I had a focal extension but my margins were clear as well as seminal vesicles, bladder neck and lymph nodes. My doctor commented that we got it just in time as it had just started to move outside the prostate.

Results….my initial PSA test after surgery showed as undetectable. For now, at least, the cancer is gone. I'm almost 4 months out and have another PSA test in April. He wants me checked every three months due to my focal extension. I have ZERO incontinence. I do have some ED issues, but those are slowly improving and I would say I'm back to about 60-70% of normal. I'm confident I'll be 100% before the year is up. My doctor has me on a daily low dose Cialis to improve blood flow and healing. Without a prostate, I'm no longer running to the bathroom every hour or getting up every 90 minutes to pee at night. I'm sleeping better than I have in years and feel great! My urine stream is now as strong as it was when I was 20!

My point of this post is that you don't have to be afraid of the surgery. Nobody wants surgery. Especially one as complicated at this. But if you are young enough and healthy enough, it's not the end of the world. So far, I've had amazing results.

What I'm telling you is to find the best surgeon available to you. Go to a major hospital and find someone at the top of their field that has the expertise and experience to do the job right. My surgeon is the head of urology. He is a professor of surgery at Harvard medical school and did his fellowship at John's Hopkins along side the doctor that helped develop the robotic prostatectomy procedure. There's really no room for error with a surgery like this. Best of luck to you, brother. I'm praying for you.

swl1956

Jason,

I empathize with your situation. The stress of deciding what to do is enough to kill us. 😁 As Doctor Mark Scholz repeats in almost all his videos, selecting the best doctor is paramount no matter which method we choose attempting to rid ourselves of this disease. BUT, he also points out that even the best most experienced surgeons leave a percentage of patients with irreversible negative urinary and sexual side effects. I too have been getting conflicting opinions from doctors and have read many anecdotal stories both pro and con regarding surgeries and radiation. I can't find much that clearly sways me one way or the other. I'm not sure if it's relevant, but using my limited brain's logic, it seems to make sense for surgery first which would still allow for salvage radiation if cancer reoccurs. Salvage surgery is not a good thing. Anyhow, I think we're basically alone in our choice and will have to live with the outcome. Hopefully we'll get lucky

JasonB176

I actually broke out in hives all over my body yesterday purely from stress. Part of me wishes the third urologist just recommended the surgery. I would already have it scheduled and my mind would be somewhat at ease knowing I chose my course of treatment.

I just don't know if I can live with this inside me and play the waiting game. I'll give it a few more days and see if my nervous system calms down. It would seem I'd be safe to wait until the summer and get a PSA test then and go from there. I'm still leaning towards doing that but if I choose to do that, I'm going to have to be able to put the whole thing mostly out of my mind until then. If I can't do that, I'll have to just go with the surgery. I do believe the third urologist with all of his experience would perform it as well as it could be done.

Thanks for the feedback and encouragement. This 3 + 4 situation can in some ways be more stressful because there are so many unknowns.

jc5549

Jason you have time on your side. Take a few months, if AS continues to be unbearable then you have your answer and can pull the trigger with virtually no difference had you been operated on today. in the meantime you follow your PSA, MRI, and biopsies
You are in charge of this and can opt in anytime you want, hang in there my brother.

jc

swl1956

Yeah, hang in there Jason. Some days are worse than others. It is almost impossible to be free from the worry. I find keeping busy helps a bit. Since my diagnosis last November it is has been all consuming. I wake up thinking about it and go to bed thinking about it. I had a PSMA PET scan yesterday and it indicated that things are about the same as they were last November confirming no metastasis. It is a very slow progressing disease in most cases. Even having a 4+3 biopsy, I'm leaning towards a focal treatment. Anyhow, I'm hoping some piece of mind will come after I pull the trigger on whichever procedure I choose. I do believe however this Pca journey is just beginning. From what I sense of others here that have been dealing with it for long periods, we'll kinda get used to it and perhaps not worry so much? Just deal with the cards we're dealt and act accordingly the best we can.

centralPA

https://csn.cancer.org/discussion/comment/1714333#Comment_1714333

Now that you’ve gotten your options figured out for the prostate, maybe it’s time to give your mind some TLC. It’s just as important as the body, especially in that each influences the other.

Consider getting a referral to talk to a therapist. Finding out you have cancer is obviously traumatic, but you don’t have PTSD, because the trauma is still ongoing! You are in the thick of it. Talking to a person who specializes in dealing with trauma can absolutely help.

Go get a really good massage. It is impossible to have a tense mind and a relaxed body. Your hives are a perfect example of how the two are interconnected. Conversely, if you can truly get your body relaxed, which a masseuse can, then it will relax your mind. it will give you a short stress holiday.

Nobody wants cancer, obviously, but perversely it can potentially help you grow as a human being. Get the book “The Power of Now” by Eckhart Tolle. Or maybe better yet get the audiobook and listen to it on a drive. The ideas in it have the potential to change your relationship with your disease, and therefore with everything else. Another good book is called “F*ck Feelings”, I forget who the author is. Yes, that’s the actual title. Both books, take a similar approach.

Try some breathwork exercises. They’re fun and relaxing. They work. This guy has a ton, I’ve actually signed up to his Patreon.

https://m.youtube.com/%40BreatheWithSandy

I was a pilot in the Navy, flying on and off of aircraft carriers. It was fun, but also high risk and stressful. Cancer, on the other hand, it’s just higher risk and stressful. It’s not fun. But all the tools I used to deal with the one work with the other. Your mind is as important as your body, take care of both!

JasonB176

Thanks for the support and suggestions. I totally agree that it's important to take care of our minds through this process. I have no symptoms so I'm still able to do my favorite physical activities like cycling and that helps a lot but the mind still needs work.

I actually have that book "The Power of Now" but had never read it through. I read some of it yesterday and the message makes sense. All we ultimately have is the now, the present, and we have to make the most of that. Past and future are important but we can't let them consume our beings and miss out on life happening at this very moment.

I think I'm at least starting to get to the point where I can have some peace of mind to just wait for a bit. I reached out to my PCP on Friday just to get his take on the situation. He kind of straddled the fence saying that if surgery is going to be done, it's important to get it done while the cancer is contained but he also said that it should not be a problem to wait until the summer to get another PSA test and take it from there.

I need to now commit to that course of action. My first urologist has already ordered a PSA test for June which is sooner than the third one recommended but in any case, somewhere in the early to mid summer I will get that test and take it from there. Until then, I need to disengage some from the process and live in the now.

pmella

Jason,

CentralPA makes some excellent points, i.e., ways to drop your emotional barometer and put some distance between yourself and the issues you're facing.

Regarding your statement: "Part of me wishes the third urologist just recommended the surgery." Having been in the health care business for decades I can attest to the comfort of having a strong consensus concerning treatment options. But, frankly, that is often not possible, in that physicians vary considerably in their approaches to the same patient's clinical profile. As a good friend, a vascular surgeon, would tell me, there is a reason they call it the "practice of medicine." Judgment so often plays a key role, and any ten physicians will often differ considerably in their recommended approach.

Another vital dimension for me as I learned of my diagnosis a few weeks ago is spiritual. My wife and I are cradle Catholics and this decidedly unpleasant development has been an opportunity for me to deepen my faith. I have always believed that this life is but a way station, and that we are spiritual beings cast in flesh. That has helped me put things in perspective which has made the process of discerning the most optimal treatment options far more tolerable.

Something else to remember is what Dr. Mark Scholz wrote about in his book, which I mentioned earlier in this thread, The Key to Prostate Cancer: to wit, some years ago surgery was deemed the proverbial gold standard; that is no longer the case as significant advancements in radiation treatment therapies have become so advanced. So, whether it is brachytherapy, cyberknife, proton, and on down the line, we have many viable options to consider. That is something we can be grateful for.

Yes, that can make the decision-making process difficult, as it encourages endless second-guessing. I have felt that myself. However, as unpleasant as this cancer is, it is not a glioblastoma, which in just four months killed one of my brothers a few years ago. Survival rates for us, on balance, are as good as they get.

So, try to work thoughtfully and diligently through this process. If you're a person of faith, ask God for guidance and support. But know that your chances of a largely favorable outcome are high. And, keep that future image of yourself, healthy and re-engaged in your life, firmly in mind.

I will keep you in my daily prayers.

Phil