Diagnosed in August - The Journey Begins...

[jaybojammer]

After routine blood work for an annual physical my doctor informed me that my PSA was a little high for my age, 63. PSA was 7.9 which I thought was not bad, considering what I had read about some controversy about PSA testing. I'm glad he did though. I was referred to a urologist who recommended a biopsy. It came back positive on 5 out of 14 cores; two (3+3) and two (3+4) on the left side and two (3+3) on the right side, so my Gleason score is 7. No lumps found with DRE. Perineural Invasion was detected on the two 3+4 cores, left side. He also did a Cystoscopy because I complained of the typical old man urinary problems, sometimes hard to start, frequency, waking at night often. Turns out my prostate is 77 grams and is obstructing flow. He put me on the daily 5 mg ED med which helps a lot.

I visited another urologist at LSU Medical in New Orleans for a second opinion and he agreed with the original recommendation of surgery and agreed no lumps during DRE. I also visited a radiation oncologist who said he thought surgery would be better in my case, "If it were my dad or me, I would go with surgery first." Both urologists said they were not that concerned about PNI but the one who diagnosed me recommended removing more on the left side. Both would use robotics.

Like everyone I started researching and learning everything I can. I've asked a LOT of questions with each doctor and they all say to expect incontinence for 6-8 weeks though the worst "could" be over in two to three weeks. They also say ED WILL happen but there's a good chance functionality could be restored within a year. Do your Kegals, don't get discouraged, practice makes perfect. They said the first month after surgery will be focused on incontinence and once that is resolved the focus is on erections.

The only thing I find odd so far is a low PSA of 7.9 with a Gleason score of 7 with both sides positive. It seems the PSA should be higher.

Everyone tells me it's not a death sentence but I need to do something. Evidently, active surveillance is not an option with Gleason score of 7 with PNI detected but I am staying positive and hoping this will work out reasonably okay. If not we continue on to the next step.

I'm leaning towards surgery and may have it in November. Nerve sparing on the right side is in the plan but he did mention "wide excision of the ipsilateral neurovascular bundle" on the left side due to the PNI. I understand the implications. Seminal vesicles will also be removed. I like surgery because I want to see the pathology report after it's removed to see if there's any indication of metastasis.

Obviously, I don't like the thought of ED but I don't want this to come back or spread. Each doctor has told me about the drugs, injections and implants and that the other nerves are not affected during surgery so quality of life can continue.

I'm not sure if I'm looking for advice, guidance, support or what. Just wanted to share my story.

The journey begins...

[Tall_Allen]

You will notice at the bottom of this list of questions to ask urologists, are two questions that I think a patient should never ask. The reason is that no doctor is capable of putting himself in your shoes. That doctor may not care about incontinence or ED, but you might.

pcnrv.blogspot.com/2017/12/...

Here are also some questions to ask yourself:

pcnrv.blogspot.com/2017/12/...

I have no idea why the RO you spoke to didn't recommend radiation. Perhaps he is not a good RO? (I expect every specialist to recommend his own specialty to reasonable candidates - otherwise he is in the wrong field). With a Gleason 3+4 in 2 cores, this is called "favorable intermediate risk," which makes you a good candidate for any therapy - surgery, SBRT, High Dose Rate Brachytherapy or Low Dose Rate Brachytherapy. All of them have similar cure rates. They differ in side effects:

pcnrv.blogspot.com/2018/10/...

There has been a clinical trial where patients were randomized to surgery, external beam radiation or active surveillance. Out to 10 years, the oncological results were the same, but the side effects differed:

pcnrv.blogspot.com/2016/09/...

[jaybojammer in reply to Tall_Allen]

Thanks Allen. I obviously still have a lot to learn. I'm not sure why the RO recommended surgery either. Perhaps because one core was 90% and it was one where PNI was detected. I will have to ask. I don't remember the clinical terms he used but it was along the lines of "collateral damage" to surrounding tissues. He and the urologist both mentioned it's harder to do surgery after external beam than the other way around.

[Tall_Allen in reply to jaybojammer]

It is very difficult in early meetings to absorb everything, especially with the unfamiliar terminology. I remember hearing tthe word "cancer" and very little after that. It's a good idea to bring someone along with you, take notes (or record with permission), and bring written questions.

Salvage after radiation should not be with surgery - there are much better options:

pcnrv.blogspot.com/2017/09/...

As you see if you looked at the links I provided, the "collateral damage" is much less with radiation.

You have a lot of work to do finding specialists in each of those therapies I mentioned. Where are you located?

[jaybojammer in reply to Tall_Allen]

I really appreciate the advice Allen... and everyone else! It sometimes seems overwhelming. I'm in Louisiana across the lake from New Orleans. We have a few large hospitals here, Ochsners & East Jefferson Memorial and medical schools at Tulane and LSU. They are both affiliated with MD Andersen.

[Tall_Allen in reply to jaybojammer]

SBRT and HDR brachy may be hard to find in your area. I know MD Anderson in Houston offers LDR brachy (Steven Frank) but I doubt your local affiliates do. If you can travel, there are some I can recommend. You may be interested in this article:

pcnrv.blogspot.com/2017/12/...

[RA9903 in reply to Tall_Allen]

The oncologist I went to, who is very good, recommended surgery as well. He recommended that because of my age 52. That’s my experience. He thought I was a better candidate for surgery. Sometimes it’s not about someone being truthful to their patients and not just blindly offering them a treatment just because it’s their specialty. I called MD Anderson, gave them my data, and they also recommended surgery. Just my experience

[Tall_Allen in reply to RA9903]

One who is interested in curative treatment for localized prostate cancer should not be talking to a medical oncologist (MO), no matter how good he is at doing his job. MOs are not experts in providing such treatment (they are expert in maintaining life for incurable patients) and would know quite a bit less than a urologist or a radiation oncologist about their respective specialties. You spoke to a mysterious "they" at MD Anderson? I'm sure you spoke to a specialist in one discipline or another. Whom you speak to determines the "advice" you get.

[RA9903 in reply to Tall_Allen]

To be clear, I spoke to a radiation oncologist. He is indeed an expert. “They” At MD Anderson was a nurse from the specialty team. The advice is definitely related to NOT only to whom you speak, BUT also what type of treatment you’re leaning towards. I was open to both radiation or surgery. After our research and speaking to specialists on ALL sides, we made the decision that’s best for us. I’m sorry if I sound defensive but I sense a critical tone. If not, I apologize. We’ve done our due diligence. I wish everyone the best

[Tall_Allen in reply to RA9903]

Thanks for explaining. It wasn't clear to me in your earlier post. Why did the RO think that age made a difference? I was treated with SBRT at age 57. In general, younger men do better with any therapy. I advise never asking nurses questions like that.

[RA9903 in reply to Tall_Allen]

Well, in his experience, he’s seen younger guys do better with surgery. I’ve seen the data, and younger guys do better in general, yes. But this doctor is a personal friend and we had a long, no holds barred talk.

I was gonna have to go through ADT, brachytherapy and external beam.

I spoke to NOT just a nurse, but someone on the treatment team. My options were the same, no difference.

I’m happy that you and others have done well with SBRT. But for me, I felt more comfortable with RARP. Had procedure week and a half ago.

Best wishes for everyone in this fight!

[dentaltwin]

Your situation is very similar to mine last year. The only thing notable to me is that your RO recommended surgery. These guys usually stick to their own tribe. FWIW, my biopsy results were very similar to yours, as was my pre-op PSA.

[jaybojammer in reply to dentaltwin]

Thanks dentaltwin. It looks like a theme is appearing here regarding the RO recommending surgery. I may go see another RO.

[IrishDude in reply to jaybojammer]

You know when I was originally deciding between surgery and radiation I asked the RO under what circumstances they would recommend the surgery. I was really trying to see if he was just locked into his offering.

Sure enough there was a situation involving Gleason 7 under certain circumstances he said surgery would be his recommendation. Sorry I don't remember the details as that was not my situation. But just saying, there may be a good reason why he recommended what he did. It's probably a good question to just flat out ask him.

[jaybojammer in reply to IrishDude]

I will ask that question. I also take someone with me on each visit to take notes and will review those to see if I just missed it.

[dentaltwin in reply to jaybojammer]

I'd be interested to hear the reasoning esp. if another RO recommends surgery.

[pjd55d]

Welcome to the group

best to you on your journey - and quite a journey it is/will be

keep us posted

P

[jaybojammer in reply to pjd55d]

Thanks pj! I will.

[Hutchig]

Jaybojammer, thanks for sharing. I’m sixty had 3+4 gleason with Psa of 23. Has RP biopsy in March of 17 surgery June 2017. Went well. ED issues for the fist 12 months but now 27 months after surgery with Viagra ED is not an issue. Best to you with whatever treatment you decide to take. Hutch

[jaybojammer in reply to Hutchig]

Thank you Hutchig. I know I have a road a head of me regardless of the treatment I choose. It is helpful knowing there are others in my situation that I can talk to here.

[jctaylor]

Another welcome to the club. I'm 68, had RP in mid May of this year. My PSA was 6.2, 10 of 12 biopsy cores were positive with highest Gleason score 4+5 (confirmed by post-op path report). I think the 6 - 8 week incontinence estimates you're receiving are wildly optimistic. I'm at 16 weeks now and still have significant leakage, although it continues to improve... slowly... Good luck on your journey!

[dentaltwin in reply to jctaylor]

I think incontinence is very case-specific. Scardino in his book, somewhat unsurprisingly gives the surgeon's skill a lot of credit. I'm sure that's part of it. My brother had surgery by Scardino and said his incontinence only lasted a few weeks. I was improving slightly by one month, but it took until about 3 months before I could stop wearing pads. The ED has proven (you should pardon the expression) a tougher nut to crack.

[jaybojammer in reply to jctaylor]

Thank you jc. And the best of luck to you to sir. I know I'm being optimistic, but I'm looking at it as if I can play a role in my recovery - staying positive, following the doctor's orders, changing my diet and doing my exercises!

[jctaylor in reply to jaybojammer]

You absolutely do have a role in your recovery, a critical role. IMHO, attitude is half the battle no matter what challenge you face. Good luck and let us know how you're doing...

[RunnerGrl]

It sounds to me that you might be a candidate for FLA. It usually has fewer side effects. Please look into that and also please send your biopsy to Dr Epstein at John’s Hopkins and ask for a 2nd opinion. I think the website explains how to do that. If Dr Epstein lowers your 3+4 to 3+3 then that’s a big game changer for the better. Also, there are a lot of men who choose AS for 3+4. You can monitor your PCa with 3T MRI’s if you choose. Best of luck to you.

[jaybojammer in reply to RunnerGrl]

Thank you RunnerGrl! I'm going to look into all options that I can find!

[Boywonder56]

What was hystoligy....ductal.?...my psa was low 12..dre nothing.... biopsy...gl9....high grade ductal hystoligy...bone mets...welcome to the club noone wants to join...but the best place to get informed...start exercising now cus adt is in your future for 2yrs at least...ill let the brain trust here enlighten you.....prayers to good results b.w.

[jaybojammer in reply to Boywonder56]

My ignorance may show here. That path report showed three 3-3 cores - 5% & 20% pattern on the right side and a 25% on the left side. The two 3+4 cores were both on the left with 90% each and a 10% pattern 4 and 45% pattern 4. Both say perineural invasion is detected. I don't see anything in the report about ductal acendocarcinoma. I hope answered that question correctly.

[gamma909]

Sorry to hear of your diagnosis - you will get plenty of good information here. Keep in mind that incontinence can me much worse than you have been made to believe. I had RALP and still suffer from severe incontinence 11 months later - not likely to get much better. It's simply anatomy and results cannot be predicted with a lot of certainty. The primary valve is removed as part of the surgery so if your secondary valve is strong enough and you can establish the mind/body connection, incontinence may be brief in duration. If, on the other hand, etc. I find that men tend to worry about ED when it is incontinence that is the much bigger impact on their life. I am not stating my experience is typical, but there are plenty of men who deal with sever incontinence as well as men who have almost no issues at all. Good luck.

[jaybojammer in reply to gamma909]

Thanks gamma and sorry to hear about your experience. I hope it improves for you. Sometimes I feel like this is going to be a crap shoot and I'll just end up with whatever comes up on the dice. But I'm going to fight like hell! If I end up with permanent ED and incontinence I'll deal with it.

[gamma909 in reply to jaybojammer]

I agree with your priorities - deal with the cancer first and then address side effects. For me, the key has been to not let incontinence control my life. Good luck and here's hoping you are one of the men with minimal side effects.

[dadzone43]

Thank you for sharing. Your story is similar to mine except that I am 13 years older. I chose RP instead of RT. I had incontinence and ED. I overcame incontinence at the fifth month, quit using incontinence clothing and could sleep naked again with worry. The ED is still there and I am as OK with that as one can be. We have a really good penile rehabilitation program here in Providence RI through the Men's Health Program (code for getting back your boner!). I chose RP for two reasons: knowing the equivalent outcomes of the two, RT would have been a longer inconvenience to life and lifestyle for me with eventually the same chances for incontinence and ED. And, maybe irrationally, it seemed better to get the offensive tissues out of my body. I do not regret that choice.

[jaybojammer in reply to dadzone43]

Thanks dadzone, for your comments and the humor! I have the same desire to get this out of me though I know there are other treatments. Still more learning to go before I commit though. Your comment about sleeping naked struck a cord. I do the same and now realize there may be a lot of changes coming that I can't even comprehend right now. And yes, I will definitely want my wood back!

[dadzone43 in reply to jaybojammer]

Do not rush to decide. I was initially told by my Uro that I was too old for surgery. When I met the robotic-trained surgeon he said otherwise. I had two objections to RT: the RO was pushing hormonal therapy as having a "significant advantage" but he could not tell me what advantage and 44 days of showing up for RT would have a significant impact one my one-man office setting.

Just this morning got my ten month PSA: non detectable.

[GranPaSmurf]

Welcome to the club no one wants to join.

I'd add, take your focus off your PSA level for now. It's more useful if you can show trends, rising or falling.

One can develop an aggressive cancer with a normal PSA. Mine was 2.14 at dx.

In my case, I'd opt for surgery if they offered. They tell me I'm not in good enough condition to undergo surgery.

[jaybojammer in reply to GranPaSmurf]

Thanks GranPaSmurf. I agree with the PSA comment, it's just that it did confuse me at first. The reality is I have 5 positive cores so I have to do something about it. Good luck on your treatment plan whatever you decide to do.

[j-o-h-n]

Greetings jaybojammer.... Important - whatever treatment you choose NEVER NEVER look back and say "wooda - coulda - shoulda". Do your research, have someone with you to take notes, ask questions, get other opinions....and don't forget to LAUGH.... Do not let this cancer shit take control of you life....Post here, with questions, remarks and updates.... Here's one:

Doctor, how would you best describe prostate cancer?

Well it is somewhere between a dick and an asshole!

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/17/2019 7:35 PM DST

[jaybojammer]

Update: 3rd opinion from LSU Health Center where the MRI showed some invasion of the left seminal vesicle. New plan of action is RP with follow up radiation 3-4 months later. MRI showed no evidence of expansion into lymph nodes, but since it does appear to be on the move I want it out. Two cores on the left side were 3+4 with 90% in one of them so I guess it's not surprising that the tumor is expanding. Now I'm wondering if I should have a bone scan or something to see if it's metastasized. Nerve sparing on the right with a wide incision on the left. I've been referred to physical therapy to start the Kegal exercises. Surgery is scheduled for early November. Hoping for the best.