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48 and just DX - resisting the inevitable?

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Posted 6/24/2015 11:29 PM (GMT 0)
Hey rob, thanks for your service. I'm a former Marine with a current Marine son. I am 47, 48 next month. I had an Mri a few weeks ago and biopsy not until July 20. I am anxiously following your path. Good luck with everything. Take care of you!!
Doug
Posted 6/25/2015 12:24 PM (GMT 0)
Thank you all again for all information and well wishes. As I continue my research, I'm left wondering;
Why all the emphasis on getting a 2nd opinion on the pathology?
To me, seems like the PSA having been high and growing since 2011, the DRE confirmation, the ultra sound, and now the biopsy results clearly show cancer. What am I hoping for with a second opinion on the biopsy? That the results will come back negative? Not likely. Or perhaps the Gleason drops from a 7 to a 6? While this might buy me some time, I don't see the relevance. I would still have cancer, and I would still need to treat it as soon as possible wouldn't I? I guess the more you know the better, but I just feel like, "ok, got cancer. Let's deal with it."
So on the dealing with it front, so far I'm leaning heavily towards getting the surgery done asap. My thoughts are that I have a strong family history with PC and with it already making an appearance I should just remove the source while I still have time. I think I'm young enough that I should recover quickly and hopefully with minimal side effects. Statistically the side effects seem to be less prevalent in younger patients, and frankly, dealing with any side effects are preferable to dealing with the cancer spreading.

I did go and get a copy of my pathology report, they were surprised that I came in asking for it. I was like, doesn't everybody?

I also found out that the Army will support me getting a second opinion, but that if the Army system offers a particular treatment (in this case the Da Vinci surgery) they will not pay for me to have the procedure performed elsewhere. That would be on me. I can see their reasoning on this, it's a great big Army, can't be shelling out big bucks to satisfy the whims of every individual.
Posted 6/25/2015 12:48 PM (GMT 0)
I guarantee that the Army at any hospital in the system does not have a Da Vinci machine! You will be referred by Tricare ( HealthNet) to the nearest civilian treatment facility that has one...and you can have that changed...I would lean towards Nashville if I was you its only an hour away from Campbell. Good luck like AI said here if you need anything just reach out. RLTW
Posted 6/25/2015 1:00 PM (GMT 0)
Rob , re the pathology -
Reading prostate slides, or rather, grading them, is a highly subjective task. You need a truly expert eye to look at them. Most local pathologist, (actually, I think ALL local pathologists,) look at many different slides daily. So before looking at yours, they may have looked at ovarian cancer, and before that, breast cells, etc.

Epstein, and Bostwick are recognized world experts, specifically in prostate cells. It's all they do.
In my case, the local pathologist called me g8(3+5), then Epstein, changed it to G6, which was confirmed by MSKCC. I WAS ULTIMATELY UPGRADED AFTER surgery to G7(3+4) after surgery, but that happens in 30% or so, of cases on surgical pathology,.

What's the relevance? If say, you are downgraded to a g6 on 2nd opinion, some urology centers, even with 4 cores, might advise you are a. Candidate for AS. Or if you are upgraded to a G8, you will at least know you have to move, but maybe should get an MRI done to determine if you are likely to be organ confined. Now, if you are not of a mind to do AS anyway, and have totally made up your mind to do surgery (you really should at least meet with an RO first) then I suppose it doesn't matter and you should just go ahead and get the surgery done after which you will know anyway what you really have.

But if I were you, and I was back in December, I would be more deliberate and get the second opinion, then explore all options.
Posted 6/25/2015 1:50 PM (GMT 0)
So sorry you have to be here. I just want to chime in on the 2nd opinions of the biopsy slides. We didn't get the 2nd opinion because we were unaware that it was needed at the time. Our slides were read by some generic lab in TX that our Uro (at the time) used. My husband's original Gleason score was 4+3=7. We opted for surgery and went to UAB (Birmingham) to get the best available in our area. All indications were that surgery would be a cure. Unfortunately, it wasn't. Post-op pathology showed lots of nasty, unexpected problems, not the least of which was an upgrade to Gleason 4+5=9. Hubby is now undergoing HT and SRT.

All that being said, I'm not trying to scare you. I don't know if the second opinion on the original biopsy would have upgraded the Gleason or not. I just know that knowledge is power. The more information you have, the better decisions you can make. Hubby's initial treatment was based solely on the initial pathology report, which either was mis-read, or didn't "pick up" the more aggressive cells.

Best wishes to you and your family.
Posted 6/25/2015 2:29 PM (GMT 0)

RobMan said...
Thank you all again for all information and well wishes. As I continue my research, I'm left wondering;
Why all the emphasis on getting a 2nd opinion on the pathology?

Rob, I think Prato explained it rather well. Studies have shown that a significant number of prostate biopsy pathology is graded incorrectly. 3 out of 200 patients are shown to have cancer when they do not. A number of other cancers are either over graded or under graded. Knowledge is power and you want to be able to make your decisions based on knowledge.

Sounds like you are knee-deep in the "get it out" syndrome that many of us experience. All I can say is that you will be better served if you explore all of the options first before making a final decision. The last thing you want is regret. You have the opportunity to do it right so you should.

Jim
Posted 6/25/2015 5:15 PM (GMT 0)
It's because your options change with the Gleason score.

Gleason score 6

• Active Surveillance (AS): In the longest running study of AS, over half the men who selected AS were still untreated 20 years later. PC is most often an indolent disease - a disease one can die with rather than of. Why risk incurring the sometimes horrific side effects of treatment if you don't have to?
• Radical treatments: surgery, SBRT, LDR brachytherapy, HDR brachytherapy
• Focal treatments: e.g., focal laser ablation, if only one or two cores

Gleason score 3+4

• Active Surveillance if you're on a program at a medical center that has mpMRI and an excellent radiologist.
• All the above radical and focal treatments.

Gleason score 4+3

• Surgery, if stage T2
• SBRT
• combination IMRT with a brachytherapy boost

Gleason score 8-10

• combination IMRT with a brachytherapy boost and hormone therapy
• Surgery, if confirmed stage T2 with advanced imaging
• SBRT (experimental)
Posted 6/25/2015 10:37 PM (GMT 0)
Rob, I"d like to add some more info about choices. As a 'surgery guy', what I learned is that there are two primary types of surgery, open surgery and robotic surgery. In open surgery, the surgeon opens a large incision and removes the prostate with traditional tools. In robotic, also called DaVinci, surgery, the surgeon is sitting at a computer work station with 3-D view capability and a couple of joysticks used to manipulate the arms of the Davinci surgical robot.

The first thoughts about robotic surgery weirded me out. And yet, the success rate is incredible. In the hands of an experienced surgeon...and we define experienced when they have a treatment count in the thousands...there is generally less blood loss, fewer surgical side effects, and just as good, if not better, outcomes.

As I said earlier, if you want to go for robotic surgery, one of the premier practitioners in the US is just down the road from you at Vanderbilt. I can't speak to how military medicine works, but if you have that option, I'd encourage you to go for it. This is not something to mess with. I've heard it commented that robotic prostate surgery is as highly skilled..if not higher skilled...than brain surgery.
Posted 6/26/2015 12:47 AM (GMT 0)
RobMan,

Sorry to hear about your diagnosis. Not at all what you wanted to hear.

There's lots of good advice in this thread. As you can see, the radiation issue is somewhat controversial, but you should get a couple medical opinions on that. A good medical oncologist who is neither a surgeon nor a radiation doc can give you an informed and objective perspective.

I think the best advice you've received has been to get second opinions and to get a second reading of your biopsy. Having a 4 in your Gleason does normally take you out of the group that qualifies for active surveillance, but maybe a second opinion on the slides could give you some piece of mind about waiting. On the other hand, it might confirm that you need to deal with this right now. Be prepared for either possibility.

The thing with these needle core biopsies is that you don't know what you don't know. These are small samples and they could easily miss a piece of cancer that's more concerning. If I were in your socks I wouldn't wait, but I understand your circumstances. I think you should at least gather some more information before you make that decision.

Best of luck whatever you decide, and let us know how you make out. There are lots of informed and caring people here. It's a good place to be for someone in your position.

Jonathan
Posted 6/26/2015 4:43 PM (GMT 0)
I was also 48 at diagnosis. My PSA was 4.2, but I did some research and learned that lots of things could elevate PSA; it's usually a disease of older men; and it's usually a slow growing cancer, so I didn't follow up. But a year and a half later, my PSA had risen to 21.4. It had spread to my lymph nodes and surgery was no longer an option. My treatment doctors (at NIH) said that the younger you are when you are diagnosed, the more likely it is to be fast growing.
Posted 7/18/2015 6:42 PM (GMT 0)
So my 2nd opinion came back and reduced my Gleason score from a 7 to a 6. I asked the doc if that means we could go to an active surveillance program and essentially put off the surgery for 6 months so I could go ahead and deploy with my unit (and make some much needed extra money, as well as help out my brothers in arms). He said that he would still recommend me getting the surgery as that would be the safest route, but that technically I was correct. At a Gleason 6 active surveillance is one of the treatment options and he would support my wishes if that is what I wanted to do. So here is my thoughts on that:

The go down range side -
While I know now that I have cancer and must address it, even though its "not as serious" as we previously thought, I feel like I could go ahead and go do my job for 6 months without too much risk. While down range I would have time to work out, eat right, and essentially get my body ready to recover from the surgery which I would pursue as soon as I returned, probably in February of 2016. This coarse of action also makes me feel as though I have more control over what is happening ( I have been feeling rather helpless against the impending surgery, currently scheduled for 14 August of this year ). Finally, this could literally be my last chance, my last hoorah so to speak.

The stay and get the surgery side-
As you all must know, cancer is scary... The benefit to going in and taking out the offending gland now would be that with the reduced Gleason, I am almost sure it has not yet spread. Getting it early seems logical. Also, with the G6 score, there is only a 2% chance it has spread to my lymph nodes so the doc said he could leave them in at the point I'm at now. Some other benefits are that I would get to stay home with my family, although who knows what kind of shape I would be in. Some of the draw backs in my mind are that I start my "life of disability" earlier than I might have to. 6 months is 6 months after all.

I have started the process of preparing for deployment, but have not canceled any of my medical appointments as of yet. The doctor was concerned about finding the source of the microscopic blood in my urine before we do the surgery, so I have a CT scan of my kidneys scheduled, as well as a scoping of my bladder, all before the surgery on 14 August. I will have to commit one way or the other by the middle of next week. I'm really on the fence, guess mostly I am scared of the surgery and the consequences there of. I know I'm going to get it, but don't want to run down the road, would rather creep up slowly.
Rob
Posted 7/18/2015 7:28 PM (GMT 0)
Congrats on the downgrade of the Gleason! I'm sure you know there's no right or wrong answer, but if it were me, with a Gleason 6 and four positive cores I would wait. (In fact, if it were me I would seriously consider AS.) Gleason 6 is a very slow growing--and arguably indolent cancer. Yes, it's possible to have some out of the box things happen and you'll find several guys here that had their G6 upgraded after surgery. But I think you have to base your decision on what's the most likely thing to happen and based on that and everything you know now, I don't see an issue with waiting six months.

This assumes that you can focus on the task at the hand...you're doing some very important work for the next six months!
Posted 7/19/2015 3:00 AM (GMT 0)
Here's my experience with PCa, hope it helps.

I am retired from the Army and used Tricare Prime for DaVinci surgery and salvage radiation therapy.

If you choose surgery, I agree with those who said go to Vanderbilt because of Dr. Smith's expertise. I would have gone there but he was going overseas. My local Urologist had a good track record and did a good job. I was incontinent until week 3 post-op but have immediate and enduring erection problems. I still need Viagra.

I was 59 at diagnosis with Gleasen 3+4 and PSA 4.91, cancer in both lobes. I chose to have a prostatectomy. The worst part was having the catheter in for 8 days. After 6 weeks post-op, I was digging post holes manually with no ill effects.

When my PSA rose from .014 to .046 two years post-op I decided to get salvage radiation. I have 3 treatments left of 45 and the worst side effects I have had are nausea from the medications during the first 3 weeks, irritation of my rectum and urgency to defecate. Piece of cake compared to surgery.

I chose to go to the best Radiation Oncologist (RO) in the world (in my opinion, based on his published record for "cures" of about 80% for intermediate and high risk PCa patients at 16 years. He only treats PCa patients and has state-of-the-art diagnostic and Image Guided radiation equipment that adjusts for your breathing. He treats patients from many countries. I invite anyone to private message me for details. The RO will consult with you by phone one time for free. I highly encourage you to do so, even if you decide to go the surgery route. And keep him in mind if you later need salvage radiation.

If the Army will refer you to a local RO, they will likely agree to refer you to him. You may have to pay for lodging. I did, but you can find lodging in someone's private home for $1800-$2500 (expensive because it is Sarasota FL). Well worth it the out of pocket expense.
Posted 7/19/2015 5:42 AM (GMT 0)
Congratulations on the downgrade! That's what we were hoping for.

Your other option is to stay on Active Surveillance. Most prostate cancer is indolent. That means it never grows much. The reason it's called active surveillance is because you are actively watching it, and if it shows signs of waking up, you'll be prepared to act with surgery, SBRT, or brachytherapy - your choice. Until that happens, if that happens, there is no need to enter into therapy.

They monitor your prostate with PSA tests a few times a year, and with at least one other follow-up biopsy within about a year. There may be another DRE in your future too. If you can get a multiparametric-targeted biopsy for the next one, that would be ideal.

I hope all goes well with your deployment and you come back safely. The GS6 gives you plenty of time to deal with it later.
Posted 7/19/2015 12:39 PM (GMT 0)
Did anyone answer the question that if you have radiation you most likely cannot have surgery if it fails?

Would like to know if this is true or not, I am led to believe that if you have surgery there is always radiation if you need it later???? 

Posted 7/19/2015 3:05 PM (GMT 0)
Hi Rob,

Not sure what you decided, but here was my experience. I chose surgery for many of the same reasons as CaptainE and couldn't be happier. Continence was never a real issue for me, and potency is already returning (with pharmaceutical help right now, but that should go away over time). I had a really great medical team here at Houston Methodist and they got it all. What I noted about your cancer was the Gleason score at dx - mine was the same but after surgery it was upgraded to 8 (4+4). Not sure if it was misdiagnosed on the biopsy, or it advanced after. My guess is the former since a biopsy in some ways can be a "luck of the draw" effect. Anyway, the doctor looked at me and said "waiting a year would have been problematic". Good luck to you on whichever course you choose (or have chosen) and just know there will be people out there praying for you who you don't even know are praying!
Posted 7/19/2015 3:14 PM (GMT 0)
whosnext--it sounds like you're questioning whether choosing surgery gives you TWO chances at a cure, while radiation only gives you ONE chance since you can't have surgery as a back-up. That is one of the biggest misconceptions surrounding treatment choices for PC.

While it's (mostly) true that you can't have surgery after radiation, there are still different radiation techniques as a back-up, depending on the type of initial radiation used. In other words, there's a back-up for both surgery or radiation as an initial treatment. Surgery does NOT give you one more chance at a cure than choosing radiation as an initial treatment.

Another thing to keep in mind: this only matters if the cancer is localized. If either surgery or radiation failed because the cancer had spread beyond the prostate bed, you need to go to systemic treatment at that point, although that would be highly unlikely based on our OP's biopsy results.

This is one of those statements that is (mostly) true but completely misleading--it comes up so much I almost wish we had a sticky to address it.

BTW, the reason I say it's "mostly" true is because while rare, there are people that have had surgery following radiation, including at least one person here that did so successfully.
Posted 7/19/2015 3:41 PM (GMT 0)
I was 47 when diagnosed. Keep in mind that after surgery, if that's what you choose, you can be upgraded or downgraded. My surgeon chose not to do any radiation after surgery, eventhough I was a T3a afterwards(T2C before). I am 4 years out and doing great(ED still an issue). Best of luck!
Posted 7/19/2015 3:48 PM (GMT 0)
I haven't read every post so I may be off, but I'd get another couple of opinions from different specialists.

Just my opinion, but you could have HDR Brachytherapy and be ready for deployment in 3-4 weeks. A treatment which has shown the same or better cure rates.

Surgery's good as well, but I'd explore everlasting more options.

Good luck either way though.
Posted 7/19/2015 4:25 PM (GMT 0)
Robman--first, thank you for your service and what you do out there. And, secondly, congratulations on the downgrade.

Going back to your first post, I noted your description of a large and asymmetrical prostate. I didn't see any information on extent of cancer in the positive cores of your biopsy, and if you have that you may want to share it. Be aware that there are data on volume being correlated with risk of escape, even at lower Gleason scores. Several of us here have or had high volume, low grade disease. I haven't been able to learn why higher resolution volume scores aren't a part of risk nomograms, though the ratio of positive cores to total scores is used.

In any event, part of your decisionmaking will be how you weigh short term benefits vs. long term...and how you will feel if you put off treatment and maybe draw the wrong card for that decision. I will share this, for whatever it may be worth--having kids makes me feel I should be aggressive with treatment. I have yet to make up my mind on treatment type, though I have RALP scheduled with an excellent surgeon.
Posted 7/19/2015 4:48 PM (GMT 0)
JockMT - 4 of my 12 cores were positive, G6 (now for all 4 cores), 3 of 4 less than 1% involved, the 1 core that was downgraded to a G6 from a G7 is less than 10% involved.
I plan to go to an active surveillance plan now and just see how it goes. Even if the Army decides I should not deploy, I am going to cancel the surgery date and just keep an eye on things. I really think my surgeon was rushing into surgery and I'm so happy I got the 2nd opinion (thanks to the advice on this forum). I still think that eventually I will need to get something done given my family history, but I would prefer to wait for now. IF and WHEN things get worse then I'll take care of business. No hurry the way I see it. I'll keep you all posted as things develop and continue my research. Thanks again to everyone!
Posted 7/19/2015 6:28 PM (GMT 0)
@Rob: It would seem you are making a wise decision and you'll get a lot of support on it. I'll simply remind you that the "A" in AS means "Active". As Allen noted you will want to continue with regular follow up PSA testing as well as an MP-MRI targeted biopsy sometime in the future. Hopefully this will just be a chronic condition requiring no treatment. But you want to monitor it properly to make sure.
And --- good luck on your deployment and God bless.

@Whosnext: You got a good answer from MichaelT. This whole idea of "you can get radiation after surgery but not surgery after radiation" is a bogus argument, IMHO. There are as many good options for salvage treatment after failed brachytherapy for example as there are options for salvage treatment after failed surgery. If you speak with experienced LDR Brachytherapists they will tell you that salvage can be via implantation of a different isotope, HDR Brachy, HIFU or Cyro. Surgery is also an option in the hands of a very experienced practitioner. The key to salvage success is whether or not the disease is still contained. If it is already metastatic then salvage treatment is pretty much useless and you are talking containment rather than cure.
In any case I would suggest you focus on the very best initial treatment with the very best doctor rather than worrying about the salvage follow up because neither surgery nor radiation has a competitive advantage.

JIm
Posted 7/19/2015 6:56 PM (GMT 0)
Best of luck to you, Rob!
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