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Posted Yesterday 1:46 AM (GMT 0)
Well that sucks--I'm sorry to hear about this. Keep us posted about the scans, but as has been pointed out they're unlikely to show anything. I would also urge you to look at treatments other than surgery--you may indeed choose to have surgery, but it would be good to know all your options first and you'd need to talk to a radiation oncologist about radiation. Most important, the vast majority of us do very well and you can too. Good luck to you!
Posted Yesterday 2:03 AM (GMT 0)
Hi Mayor, Not much to add given all the good advice provided by others. It also sounds like you have a good plan -- and now you know what you're up against. I'm also 52, had no symptoms, and my whole journey started just a few months ago too. We were all new to this forum at some point.

It is a shock at first, but time helps us make sense of it. Your own mileage may vary, but my RALP really wasn't too bad, and if it wasn't for the lymph nodes that were missed I'd be a happy man with no regrets or material side effects (ok, my plumbing isn't quite as good as before surgery but its definitely close).

Anyway, good luck and keep us posted.
Posted Yesterday 2:52 AM (GMT 0)
Sorry you got those results. But you know it could be a lot worse. While you are lining up your tests I urge you to have your slides read by Dr Epstein at Johns Hopkins. Someone may post the contact info later but just search it on this site. You are about to make a major decision-surgery or maybe some form of radiation. Get yourself as much knowledge as you can. And the first knowledge is to have your slides reviewed by the best. It could direct your decision making. And listen to what Todd1963 says. He's my hero & a lot of others here too. I want to be him when I grow up. You can too. Good luck.
Posted Yesterday 3:53 AM (GMT 0)
What is your location? Are you anywhere near a university hospital or major cancer center? Waiting 30 days for biopsy results and URO pushing surgery within the next month has me scared for you. Others here are probably tired of my speech but!!here it is. I was rushed into (nerve sparing RARP) aka bullcrap. My URO said I may need Cialis to get a hard on after RARP. He removed ALL my nerves to be sure I had clean margins. He said he could tell the cancer had spread but now I am finding from others in town that he removes all the nerves from every case he works on. Do you know all the ramifications of not having erections? Do you know your penis will shrink to a tiny dump above your scrotum? If hung large like me you may have 1 inch. Daily vacuuming to pull blood into your penis will be required. For the rest of your life. You could do injections. Stick a needle where??? OH darn the injections caused scare tissue and now your penis points to the right with a 90 degree bend in the middle. There is always an implant. Whoops you are only 52. Better have a gold plated health plan to cover the $27,000.00 bill for that. NOW that I have slapped you in the head with reality, LOOK into ALL options and their recovery record before RARP. PS: I had mine out and I know it is all gone because he removed everything. darn at 1 year my PSA is rising and I will probably be needing salvage radiation next year. Waiting and watching it rising. Sorry I could not say it gently.
Posted Yesterday 11:50 AM (GMT 0)
Yeah, this is a shock--it always is. However, some of the others have already said it....but I'll reiterate:

First, please tell us where you're located. You owe it to yourself to get to a high end center for evaluation and treatment. If you don't know where to look, google "NCCN centers of excellence", and find the one closest to where you are. Call 'em and get in to the real experts.

Second, have your slides sent to Johns Hopkins for second read. It probably won't change, but it might.

Third, get a written copy of the pathology report, and copy it here. We'll help you interpret it.

Fourth, before you schedule surgery, please talk to one or more radiation oncologists. You do have time to do that, and make sure you're making a thoughtful, reasoned treatment decision, not a gut driven one. You do have time: what the heck, they took a month to get you the biopsy report. A few weeks or even a month or two won't make much difference.

And, it's unlikely the scans will show anything other than early arthritis. Do them anyway because a baseline is always a good thing.
Posted Yesterday 1:32 PM (GMT 0)
Mayor, sorry for the diagnosis but it's also time for you to take a deep breath. Besides prostate cancer you are now suffering from the dreaded "get it out" disease. This is frequently caused by over eager urologists who need to make a boat payment or over enthusiastic spouses who panic at the word cancer. It is WAY too early for you to be making any decisions about your treatment. At this point I would recommend the following:

1. Get your biopsy slides to Dr. Epstein at JHU so you really know what you are dealing with.
2. Let us know about the details of your biopsy so educated members can comment and suggest.
3. Get yourself educated. Read the sticky thread at the top of our forum. Read Dr. Walsh's latest edition and also Dr. Scholz' new book, "The Key to Prostate Cancer" and perhaps his previous book, "Invasion of the Prostate Snatchers".
4. See some other specialists for additional opinions. Especially talk with experts in HDR Brachy and SBRT. Also seek out a surgeon who has great experience in RALP. As others have pointed out, there are red flags with your current urologist who made you wait a month for biopsy results and now is rushing you into surgery.

Please, please please...take some time and process this as well as doing your due diligence. You get one chance to do this right the first time so don't be rushed into anything. At this point you do not have a plan, you have a knee jerk reaction...

Jim
Posted Yesterday 1:48 PM (GMT 0)
Mayor, this forum will provide you with first hand experiences of guys who are going thru the fight against Pca. I will just tell you as a GS9, who's urologist was a friend that urged me to have it cut out right away, take some time to do your research. This is a major decision involving your life. I took that time and found the best hospital and doctors in my general area. It was an hour and a half away from me, but after visiting with both surgical and radiation doctors at Memorial Sloan Kettering in Manhattan, they, as a team decided on which treatment would benefit me most. And after I did my research, I fully agreed. You see, my urologist friend, being a surgeon, pushed surgery and knows nothing about radiation. To this day, he still gives me looks because I chose radiation. It's MY life and I had no plans to contribute to his multi-million dollar house and his kids college education. But yet, there he was. Pushing me in the wrong direction. He had me set up for surgery right after reading me my biopsy report. Don't go blindly into this. Get your slides read by Epstein at JHU. It's possible it may be downgraded which would change everything. Research, ask questions, speak to surgeons and radiation docs. Find the best facility near you. The people on this site are here for you. Just ask. Someone is always around.
Best of luck in your treatment choice.
Posted Yesterday 3:49 PM (GMT 0)
To answer the location question. I am in Sumter, South Carolina. (According to the NCCN website, the closest facility in in Durham, N.C.) I will most definitely get a copy of the pathology report. Yesterday I was, as to be expected, not 100% clear and caught in the moment. I will most likely go through with the CT and Bone Scans since they are pretty much standard practice, and can do no harm. I have an appointment to do both on Monday.

Until I get the actual numbers, I remember that there are 10 out of 12 cores positive. He made a note to say that all were either 6 or 7, all less aggressive, went on to mention something about the cores ranging between 90% down to 10%, but I really need to put that into Gleason terms for it to make sense. I asked him about brachytherapy, but he seemed to think it would be less effective and make any future surgery more difficult. Plus, being in the intermediate group with a PSA of 12.44, I'm not sure I would be the ideal candidate. So we moved on to the radical prostatectomy. I asked about sparing the nerve bundle, and he said this was his goal...unless the nerves were intertwined with the cancer cells and would not release easily, at which time he would elect to remove everything.

Again, these are all semi-educated thoughts combined with controlled shock and anxiety at this point. Honestly, with the amount of cancer present, I am indeed sufferring from the "get it out" disease Tudpock18 mentioned. From a financial/insurance standpoint, I was hoping to get something done by the end of the year. Other than the anxiety caused by the thought of cancer, my biggest fear is bankrupting my family. And dying, of course. That's a little nerve racking, lol.
Posted Yesterday 4:07 PM (GMT 0)
Sorry, this is just wacky and wrong: "I asked him about brachytherapy, but he seemed to think it would be less effective and make any future surgery more difficult."

If you do brachy as a mono-therapy, and it fails you followup with EBRT as a salvage treatment - surgery is rarely used as salvage for RT. Don't ask surgeons about radiation and don't ask ROs about surgery.

Keep doing your research.
Posted Yesterday 4:16 PM (GMT 0)

DaMayor said...
Other than the anxiety caused by the thought of cancer, my biggest fear is bankrupting my family. And dying, of course. That's a little nerve racking, lol.

But other than that...... smile Just look at some of the posters here. We have way worse numbers than you and are doing fine. You aren't dying this month. As for bankruptcy I have been a bankruptcy attorney for 38 years. If you are seriously concerned about that, feel free to contact me and I will give you a primer. Good luck on your tests. Study hard.
Posted Yesterday 4:43 PM (GMT 0)
Mayor,

First off, Duke has a great facility...I think there are one or more guys here who sought treatment there.

You've already heard one of the most pervasive half-truths of the PC biz: That you can't have surgery after radiation (more or less true), which therefore means you shouldn't have primary radiation (totally false). The whole point, with low-intermediate risk disease, is that you go for cure with low side effects as primary. Your chances of ever needing secondary treatment are pretty low (like less than 5% within 10 years). Plus, with primary radiation, there are secondary treatments available--just not surgery.

Get to duke. Get the consults there. Make a thoughtful decision. Get on with life.
Posted Yesterday 5:06 PM (GMT 0)
Mayor,

There is NO good reason this has to handled by the end of the year. I’m not discounting financial pressures you may be experiencing, but that cannot be allowed to be your driving force. Your treatment choice may be the biggest decision you ever make in your life. I feel like we’re all shouting at you right now, but it’s for a reason. I’m happy to see from your last post, you seem to be more composed. The next little while you’re going to be feeling raw. Take some time to make levelheaded decisions.

If you were a family member I would be dragging you away from this surgeon, or at least getting an opinion from another surgeon. Surgery could be a good choice, but how do you know at this point if it’s the best choice? PLEASE, slow her down and get some opinions from great doctors who specialize in RT before you sign up for anything. Our greatest regrets are often embedded in the things we didn’t do.

Post Edited (mattamx) : 11/28/2018 10:11:38 AM (GMT-7)

Posted Yesterday 5:56 PM (GMT 0)
Mayor, I'm also glad to see you have settled down a bit. I obviously don't know your insurance or financial situation but would continue to advise you to slow down and get this right. I think you are seeing a very common approach from most of us, whether we had surgery or radiation, and that is to suggest you get educated and get multiple opinions before doing anything rash.

Beyond this, even if you do ultimately decide upon surgery, have you determined that your surgeon is highly qualified? Do you know how many RALP's he has performed? Has he shared with you the statistics of his patients re urinary or sexual side effects? Does he know that brachytherapy comes in more than one variation and did he discuss that with you? Did he even mention SBRT? Did he suggest another reading on your biopsy slides from an expert pathologist? Did he explain to you why you had such an unnecessary delay in giving you your biopsy results? Did he tell you that your PCa is likely slow growing and that you have time to make an educated decision or did you feel rushed? Etc, etc, etc???

Jim
Posted Yesterday 7:31 PM (GMT 0)
Besides my other rant, can you tell that I am mad about the decision I made?? IF I had found this group before I was rushed into RARP, they would have given me the exact advise they are giving you. Follow their advice. I live within 100 miles of some of the finest specialists in all fields of pc care in the US and I screwed it up.
Posted Today 3:03 PM (GMT 0)

DaMayor said...
Until I get the actual numbers, I remember that there are 10 out of 12 cores positive. He made a note to say that all were either 6 or 7, all less aggressive, went on to mention something about the cores ranging between 90% down to 10%, but I really need to put that into Gleason terms for it to make sense. I asked him about brachytherapy, but he seemed to think it would be less effective and make any future surgery more difficult. Plus, being in the intermediate group with a PSA of 12.44, I'm not sure I would be the ideal candidate. So we moved on to the radical prostatectomy.

Just think about this for a second. You have 10 out of 12 cores positive. I had 10 of 12 positive. You have possibly GS 6 and 7, less aggressive. I had GS 8 and 9, very aggressive. Your amounts were between 90 down to 10%. Mine were mostly 90 down to 10%.. Your PSA is 12.44. Mine was 12.4. And two of the top doctors at Memorial Sloan Kettering felt that a combination of brachy, SBRT and ADT may be my cure. So why would a surgeon, the only oncologist you have seen I believe, tell you brachy would not be a good fit for you, or maybe even SBRT.
You owe it to yourself to first take a deep breath. Get the slides sent for a second opinion. It's possible it all may be downgraded to 6. That would change your options immensely. Don't rush to make a treatment decision. I took 7 months before deciding. But in the meantime, research. We have no skin in this game. We don't make anything from offering you advice. You get our real life experiences. Support, a shoulder to lean on, someplace to vent. That's what this brotherhood is about.
Speak to surgeons, speak to radiation docs and then make your decision after you find out all the facts. Don't be nervous to ask question here. Like I said, you'll get real life experiences back in return. Not any type of Doctor pushing their agenda. No matter what you decide on, we are with you 100%.
Posted Today 4:03 PM (GMT 0)
I haven't been on this forum in 4+ years. I saw DaMayor's post and I couldn't stop reading.

I'll say this, DaMayor... This is a MONUMENTAL decision. There are no takebacks. I live everyday with the decision I made and I would've done it differently if I had to do it over again. Like you, like most everyone, you feel pressured and panicked to make a quick decision. That is the wrong way to go especially in your case. I was Gleason 7 and told my cancer was "aggressive". Out of fear of death and leaving my wife and kids behind I chose RALP.

Today, I live with some side-effects that are maddening and huge quality of life killers. I wanted to do watchful waiting and I should've but was "too afraid" as the uro said I'd be dead in two years if I didn't act. I had the procedure and then my post op pathology revealed quite the surprise. A tame Gleason 6 cancer down from an aggressive 7 from biopsy. I could've and should've waited. I felt fantastic and as a strong person of faith believed I should've waited but for ....fear....and fear is a liar.

You are a person of faith. Breathe, brother. It should comfort you to know this experience of yours has been repeated millions of times by guys just like you, however, this experience is yours and yours alone. Advice is great but ultimately NOBODYS cancer experience is yours and you have to watch out for those who try to take you by the hand and tell you that you're just like them. You're not. Everyone's experience and journey while similar in some regards is never the same.

I spoke to a few guys on this forum when I was last active here. It was a great experience for me and for them. If you need to talk, I'd be more than happy to talk with you. If you want to email questions, and I mean ANYTHING, you should've seen the questions I got from people about the experience and post surgery things.

Only here to post about something bothering me 5 years later and I happened to be captivated by you and your story. I'll not claim God put me here this day for your sake but I wouldn't say that's not a possibility.

You can find me at: (personal info deleted by moderator) My name is John. You're on my prayer list now.

This will consume your thoughts and every waking second. I lived it like we all did here. Again, I can't stress enough the perspective from today looking back vs. just being diagnosed is beyond a 180 difference but you'll never know this until you experience it yourself. God bless. Rely on your faith and use this as a wakeup call for a lot of things.

Have tears in my eyes as I type because I can feel your "pain".

John, I had to delete your email address because the site owner asks that we not include such personal info in the body of posts due to spammers/scammers. Please make sure your email address is current in your profile - I noticed it was different from the one you posted - then DaMayor can contact you. BTW, great and very helpful post for any new member. Hope you will stop by more frequently since your first hand experience can be a great help to others. Jim

Hey Jim...I remember you from my initial visit here. What a blessing you are to this site. Glad you're still here.

Sorry, about that. I probably shouldn't have posted it. I looked and had forgotten I'd created a special email address to interact with folks from the site. I couldn't access that email today as it has been years. Google wouldn't allow me back in with several hoops.

Post Edited (Inchoation) : 11/29/2018 12:22:58 PM (GMT-7)

Posted Today 5:23 PM (GMT 0)
Sorry Mayor. I just went thru that same feeling on Nov. 1. It was a blow at the time. I am actually doing better with knowing than I was without knowing, but knowing my family history.

As far as the signature goes, just follow someone else's pattern and add your numbers. That is what I did.

Keep doing research and do what is best for you.

larry
Posted Today 5:45 PM (GMT 0)
Mayor,

I just remembered one thing my URO said to me the first day. I am a G6 still waiting my 2nd opinion, but he mentioned surgery and put a caveat on the end. he stated if he did surgery and i got hit by a bus in 10 years and it killed me it would have been a waste of a surgery. That statement slowed me down and I think my wife a tiny bit. I knew I had time to think and do my research, which seems to never stop. When I went back in he was impressed with the research I did and he stated that with my research he felt comfortable with doing AS.

I am praying your 2nd opinion comes back as ooops we did someone else instead of yours. If that isn't the case I hope it comes back as a G6 so you can have all options available.

You can reach me at [email protected] if you want to ask anything in my limited time on here.
Posted 11/30/2018 12:35 AM (GMT 0)
Quick update...because I know you've all been waiting anxiously, lol.

I requested my pathology report yesterday, signed a release, etc. and should have that tomorrow. (I caught them at lunch, only one staffer there at the time, so there's no problem with the wait)
Bloodwork done today for CT and Bone Scan on Monday.

Today, I was able to have conversations with people in person instead of phone calls or hiding behind text messages. This is much welcomed progress, considering I am a Realtor, and speaking with people is just a tad important, lol. I have only shared my diagnosis with a select few at this point, but am somehow grateful that the men I've spoken with, my brothers in hard-headedness, "if it ain't broke don't fix it", "I don't need Doctors" types are now considering routine bloodwork if for no other reason than to establish a baseline for future PSA readings.

Now on to my Urologist. Again, in my haste, and anxious ramblings, I think I may have inadvertently misrepresented this Doc. While we are not best friends, I know of his reputation, which is very, very good. He has been very relaxed and positive since the very beginning. In all honesty, while he mentioned and recommended surgery (as is to be expected based on the Uro vs. RO data here) he hasn't pushed me at all....I have to OWN that part. I think my "Let's get after this thing" attitude may have been the culprit there, along with my sense of urgency to avoid another deductible or cost. I'm over that. Heck, I've already gotten knee deep in out of pocket costs, but you know what? Debt can't kill me. So that part is now secondary in this process.

My next appointment will be on the 18th of December. Yes, another two-week wait for findings. However, I now think that this may not be such a bad thing, because the odds of my being scheduled for surgery by the end of December will be slim at best...which may just be the drift anchor I need to steady my emotional ship enough for me to make rational decisions. Again, I thank you all for helping me bail this thing out... when I was ready to run it aground full speed ahead, lol.

And by the way, Inchoation, I'm not sure if God sent you here on my behalf. But I will say this....I don't normally "do" support groups and forums on-line. I usually fix things and fight things and deal with things myself...its our nature as men. We're "fixers". This was the first and only website I decided to poke my head into, and I am certainly glad I did. Everyone here has been honest and direct, yet understanding at a time when even a hard-headed guy like myself felt like he'd been punched in the stomach....I think God hand something to do with that.

And I said "Quick Update", lol.
Posted 11/30/2018 2:06 AM (GMT 0)
Mayor,

You’re experiencing a lot of stuff right now, but I can see that your compass is working again. Good job. We’ve all pretty much experienced the same things you are feeling right now.

I think the overarching thing right now is that you’re realizing you have plenty of breathing room, and time, to get this figured out so that your treatment works best for you.

Post Edited (mattamx) : 11/29/2018 7:09:36 PM (GMT-7)

Posted 11/30/2018 2:56 AM (GMT 0)
Hi Mayor
One thing that has helped me along the way - see if the medical center near you has a Prostate Support group. The one that I've been to a few times is held at the medical center. Guys were super helpful, many had surgery by the Dr that did mine and were extremely gracious to share their experiences, good if you are a face to face person.
Posted 11/30/2018 10:56 AM (GMT 0)
Mr. Mayor,

Sounds like you've taken the first deep breath--good! Now, like it or not, it's time to get to work. Ask your uro for referrals to a good radiation oncology center, one that has experts in the alphabet soup of radiation therapy--LDBT, HDBT, SBRT, EBRT, etc. Talk to those experts, then make your decision.

It may be, after all that, that you choose surgery anyway--lots of us here did that. Some of us did, and haven't looked back. As far as surgical side effects go, there really isn't a good way to predict how it will go. It depends on a stew of things--your personal health and probably anatomical variables, the skill of the surgeon, his opinion of what he sees when he gets in there, and other things we know less about.

The key point is make the decision that works for you. The combination of recovery time, treatment time needed, side effect assumptions, life style needs, personal comfort levels with the treatment groups, all of these roll into it for each of us. Our commitment to you is to share information, what we did or failed to do, and how it worked out. We will support you through it and hang with you through the long haul that comes next.
Posted 11/30/2018 5:52 PM (GMT 0)

DaMayor said...


And by the way, Inchoation, I'm not sure if God sent you here on my behalf. But I will say this....I don't normally "do" support groups and forums on-line. I usually fix things and fight things and deal with things myself...its our nature as men. We're "fixers". This was the first and only website I decided to poke my head into, and I am certainly glad I did.


DaMayer,

Sorry to welcome you to the club. I'd bet the vast majority of us here never sought out much help let alone a support group before. I'm a psychologist and have recommended or referred people to support groups for 25 years, yet would never have imagined that I would need to take that advice myself one day. I've found it to be invaluable. My advice is to look out for others here at about the same place in the process as you are. Interact with, and follow them so that you have a connection with someone going through it with you. Aside from Healing Well (where I've made connections and actually met some of the guys in person), also check out local prostate cancer support groups meetings that you can attend. I really found it helpful and comforting to be able to talk with guys that were going through the same decisions and treatments.

Take care,
Bill
Posted 11/30/2018 10:06 PM (GMT 0)
Thank you, Bill! I was actually able to, or made myself get around to, talking with the Father of my previous employee, now friend, who went through this 6 years ago. At the time, he elected to have the (open) radical prostatectomy, as was the advice of his Urologist then.....who was assisted by my current Urologist. Other than the fact that he was 46 when diagnosed, his numbers/stats are very close to my own. In his case, he went through the surgery without much trouble. Incontinence and ED were minimal, (i.e., required a reasonable recovery period without too much negative impact on QOL) and while everyone's case may vary, he did very well.

Now, before everyone tells me to slow down, lol, this doesn't mean that I have decided on anything just yet. It was just encouraging to hear a success story regarding that particular procedure. I am still doing my due diligence, researching, and after a conversation with my wife last night, have decided to get through the scans, talk to my current Urologist at length, ask him more difficult questions (for him) and see what input (or reactions) he has to offer. The way I see it, while he is a very kind man and a reputable Doctor, his responses and reactions will better define his commitment to MY well being, or his. I am also seeking a second opinion, but am not quite sure whether to interview another Uro/Surgeon, a Uro/oncologist, or both...But like you have all said, I have time. Plenty of time.

Now, if you would all like to send my wife an e-mail reiterating this, I would be very appreciative, lol. No, she's been great through all of this. She is just concerned, as am I.

Post Edited (DaMayor) : 11/30/2018 3:09:34 PM (GMT-7)

Posted 11/30/2018 10:40 PM (GMT 0)
Mayor, please remember to select "include signature" so members don't have to scroll back thru the posts to get your numbers. Also -- while you're waiting on scans and appointments you should really get those slides sent off to Dr. Epstein at JHU for a second (expert) opinion on your pathology. Finally, while you may be seeking second opinions from urologists please remember that they are not likely to be totally up to date on the various radiation protocols. For that you will need to visit doctors in several specialties. Getting this right is hard work...

Jim
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