HealingWell
Search Close Search
☰

Low Grade PCa Survivors, need some advice

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/21/2014 8:41 PM (GMT 0)
Age 51.Diagnosed 10/14 after sat biopsy. PSA of 6.0 but rising quickly. Gleason 6 (3+3) 6 of 24 cores. AS not an option due to the rate of rise on PSA.

Have great options for RP or brachytherapy so quality of treatment is not really a consideration. I travel a lot for my job so worried more about incontinence issues and fewer doctor visits post treatment as I'm out of town frequently. Obviously health comes first but any thoughts on which option I should lean toward?

Most importantly, thanks to all who contribute to this forum. The lives you have helped and likely saved are far too numerous to count.
Posted 12/21/2014 9:45 PM (GMT 0)
riceman3: There will be many who will respond with many different treatment options. Ultimately it will be your decision. My journey, with input from some very wise and compassionate HW folks was LDR BT. I had very few and relatively mild SEs, no Ed, no incontinence, no penile shrinkage, and have nearly the same amount of ejaculate a before BT. I have been told that ED could become an issue a well as a small chance of bladder or bowl issues down the line.

You may also want to cosider getting a second opinion on your biopsy from Epstien at JH. Take a good look at SBRT, HDR BT, as well as EBRT. Some folks do not speak highly about Cryothearpy but with your low G6 you might want to research this avenue as well.

Know that we will all have your back no matter which thearPy you chose. I wish you the very best and please keep us updated,

Post Edited (browntrout) : 12/22/2014 10:49:30 AM (GMT-7)

Posted 12/21/2014 9:56 PM (GMT 0)
I'm five days out from my second, and final, HDR Brachytherapy procedure and don't show signs of any urinary issues.

I have a follow up with my RO in a month. I'm taking Flomax but I can't tell if that has any side effects. I've felt a little fatigued and have purposefully taken it easy the past few days to recover. I stayed out of work two days and have noticed soreness when sitting. It's getting better though.

It even seems I got up at night to urinate more before the procedure than now.
Posted 12/21/2014 10:04 PM (GMT 0)
Rate of rise of PSA is not prognostic of outcomes. By your stats, you are certainly a good candidate for AS by NCCN standards. Get a second opinion on your slides. Slow it down.
Posted 12/21/2014 10:36 PM (GMT 0)
Focal Laser Ablation may be an option?

You can google Dr. Walser at UTMB.

Post Edited (akai) : 12/21/2014 3:44:36 PM (GMT-7)

Posted 12/21/2014 11:28 PM (GMT 0)
Welcome to HW, sorry you need to be here.

Kind of a shock to get that sort of news.

So what to do? First at G6 you've got plenty of time to make an informed decision. Learn all you can.

First thing you should do is to get a second opinion. hard for me to believe that AS is off the table so fast.

If are considering treatment, brachy is likely you best bet. Least invasive with the least amount of time. LDR brachy is a couple days out of your life. Beam radiation is a possible choice, but then you're stuck going to a clinic every day for 6-8 weeks. With travel that might not be possible.

The thing that will be difficult for you is that all the choices will be just fine and likely will all lead to a cure (how ever you define that).

But now, I'd suggest getting some doctors lined up to talk to - a surgeon, radiation oncologist and maybe even check out a couple of the places that have AS programs and talk to them.

Hang in there and keep us updated on your progress.
Andrew
Posted 12/22/2014 12:40 AM (GMT 0)
Hello riceman3
No fun to get the news, with G6 you are in no immediate danger so take the time to choose options that are best for you. I was a G6 that had RALP. I started traveling again for work 7 weeks after surgery. Start your kegals now, and get educated.

Best of luck

Pat
Posted 12/22/2014 6:25 AM (GMT 0)
I was a g6, rp in sept, 2010.

For a long time I felt I made the best decision and took umbrage at those that thought a g6 probably did not need to be treated because it would never metastasize or threaten anyone.

Four and a half years out, I am totally cynical and have no meaningful opinions except to see as many specialists as possible and to educate yourself. interrogate your doctors and make them explain and justify every suggestion.

By all measures, I had an excellent rp, one possible positive margin, totally nerve sparing and my psa dropped rapidly to .01.

HOWEVER: 4.5 years out, I still have total ED, serious shrinkage. No pill helps at all. I was totally incontinent for several months, finally got out of diapers but was in pads for at least a year. I finally got pretty dry but would still leak, always at the worse of moments and would regress to the point f almost needing pads again. it was up and down. 2013 got damper and I gave up and had a sling installed on December 13, 2013. the surgery was nothing at al and I was completely dry until 3 or 4 months ago when I started having exertion leakage, it continues to get worse. The uro says my bladder is over active and gave me meds that seem to help but have their own bad SE. My PSA stayed at .01 until it as .02 a couple of months ago. All my genius doctors assured me it was a meaningless increase. As of Friday it is .04, I am still assured it is a meaningless increase; I think the assurances are meaningless.

At this point, I think by summer I will be impotent, in diapers and in recurrence.

I have no point except to educate yourself as best you can. I scoff at everything written and said about PCa and the various treatments now. If I could go back to sept 2010 with the knowledge and experiences I have had, I would do nothing at all. No surgery, no pellets, no AS, no nothing. If my psa continues to rise, I will do nothing also. Sorry to be a buzz kill, that is why I don't post much now, I have little positive to add. I did just shift in my chair a little and pissed in my pants but at least it is bed time. good luck, trust yourself and no one else.
Posted 12/22/2014 11:27 AM (GMT 0)
Riceman, I was diagnosed at age 53 with similiar stats to yours. Take your time and investigate all options. I went the SBRT route and have no side effects so far. Do your homework and learn as much as you can. Get the second opinion on the slides. Talk to a surgeon, an RO that knows about brachy and other forms of radiation treatments as well as a medical oncologist for an overview of all. See if you're a good canidate for AS.  Be advised that each specialist will tell you that thier treatment is best, so have an open mind and don't get pushed into anything. You have time. This is your body and your decision. It's the hardest part of the journey in my opinion, but once you decide what to do still with it and do all the right things for a sucessful outcome. CVome here and ask questions. We have all been patients, not all doctors can say that. Good luck, slow down, and learn.
Mike
Posted 12/22/2014 12:23 PM (GMT 0)
Riceman,
I chose LDR brachy mainly to lessen the chance of ed. That worked great, but I also enjoyed the quick recovery and, of course, the overall effectiveness of the treatment. I would recommend it to anyone who appears to be a good candidate as you do. I admit that I know very little about HDR brachy, but those guys appear to be very pleased as well. I liked the fact that mine was a one-shot deal.
Best to you.
Posted 12/22/2014 2:02 PM (GMT 0)
i was in a similar place as you, i went for the robot with a brilliant guy running it and have had a very successful outcome. i have zero incontinence and can get a natural wood no problem. i`m now at 5 years since diag and still pulling zeros even with a pos margin. i cannot stress to you the importance of getting your head right on this stuff and using your force of will. quite frankly some guys let this thing run their life even if it doesnt have to. don`t freak and keep your wits about you. if you have problems theres plenty of help out there including here but the majority of people simply go on with life.
Posted 12/22/2014 2:30 PM (GMT 0)

questionaboutit said...
I was a g6, rp in sept, 2010.

For a long time I felt I made the best decision and took umbrage at those that thought a g6 probably did not need to be treated because it would never metastasize or threaten anyone.

Four and a half years out, I am totally cynical and have no meaningful opinions except to see as many specialists as possible and to educate yourself. interrogate your doctors and make them explain and justify every suggestion.

By all measures, I had an excellent rp, one possible positive margin, totally nerve sparing and my psa dropped rapidly to .01.

HOWEVER: 4.5 years out, I still have total ED, serious shrinkage. No pill helps at all. I was totally incontinent for several months, finally got out of diapers but was in pads for at least a year. I finally got pretty dry but would still leak, always at the worse of moments and would regress to the point f almost needing pads again. it was up and down. 2013 got damper and I gave up and had a sling installed on December 13, 2013. the surgery was nothing at al and I was completely dry until 3 or 4 months ago when I started having exertion leakage, it continues to get worse. The uro says my bladder is over active and gave me meds that seem to help but have their own bad SE. My PSA stayed at .01 until it as .02 a couple of months ago. All my genius doctors assured me it was a meaningless increase. As of Friday it is .04, I am still assured it is a meaningless increase; I think the assurances are meaningless.

At this point, I think by summer I will be impotent, in diapers and in recurrence.

I have no point except to educate yourself as best you can. I scoff at everything written and said about PCa and the various treatments now. If I could go back to sept 2010 with the knowledge and experiences I have had, I would do nothing at all. No surgery, no pellets, no AS, no nothing. If my psa continues to rise, I will do nothing also. Sorry to be a buzz kill, that is why I don't post much now, I have little positive to add. I did just shift in my chair a little and pissed in my pants but at least it is bed time. good luck, trust yourself and no one else.

I can relate to everything you wrote... what I did is choose not to get follow up PSA's because I've chosen not to get further treatment. I was a pre-op G7 and a post op G6. Oh, how I would've chosen to do nothing had I known about the dip to G6. QoL has been decreased for me, but not overwhelmingly so. Continence is good. ED is okay...I can live without sex much better than I can without continence.

My surgical team told me my ED would correct itself in a few months as my nerve bundles were "very robust". Nerves spared but told they were bruised and would take a few months. It's 16+ months out from surgery and I'm not like I was before... but I don't take anything for it...I can find stimulation through thought. Natural erections don't happen, though.

At my pathology report, I was told I would live as this never happened. That is what I'm trying to do. I read so many reports that say intervention has little impact on death rates. What will be will be is how I feel about it now.

My faith is what keeps me sane in all this and assures me that I'm well. My last PSA test was .082 and I was assured there was absolutely nothing to worry about with the jump up from below .06. One very comforting thought is knowing I've had 46 years of life...I've seen, felt and done so much. If tomorrow is the end, it is the end. What could I ever do about it other than be thankful I had as long as I did. There are kids and parents in St. Jude's right now. 5 year olds that don't know if they'll see tomorrow. We got a life in America. Spin a globe sometime, close your eyes, and stop it with your finger and realize how blessed you were to draw a birthplace with food, water and countless amenities and freedoms not afforded in other geographies.

Do I ever get down? Not really...not since I made peace with my decision not to live in the limbo world that being a cancer patient requires by the healthcare industry. That is their plan for you...it doesn't have to be yours. Fear is such a strong motivator...I guess some could allege my fear is why I no longer seek PSA tests. Maybe, but if it is, it's a subconscious fear and one that is not relevant because of my decision to live like it never happened with the knowledge I could go at any second. That is one of cancer's greatest gifts... knowing you're mortal and your time is terribly short. The non cancer crowd doesn't get that gift. They may say it but they don't feel it like we do.

Mentally, cancer takes what you allow it to take from you. It's taken far too much from me and I won't allow it to take anymore.
Posted 12/22/2014 4:22 PM (GMT 0)
I not as negative as I sounded last night. Cancer has made me accept that life is short, uncertain and wonderful. I waste no time being angry. the normal aggravations of daily life that used to occupy my time or infuriate me go unnoticed now. nothing ruffles me.

That said, I just cannot help the feeling of frustration that I will have when I finish this post, stand up and pee on myself. I know that most of the world would be happy to have such a minor problem but it still gets to me.
Posted 12/22/2014 4:40 PM (GMT 0)
Greetings riceman, and welcome to our little corner of the world. You have come to a good place with immeasurable help and knowledge from those that have "been there, done that" with respect to being told we have PCa, learning about the beast, deciding on a treatment path (if necessary) and moving on. Please keep in mind that with your statistics you do have time - time to learn about PCa and the various treatment options - so don't panic!

I would also echo Tall Allen's comments, first and foremost get a 2nd read on your biopsy slides. Labs such as Bostwick and Epstein are two of the best, and before even beginning to weigh out the options you should know more about your slides from someone that does this well.

I'll welcome you back after your 2nd read!!!!
Posted 12/22/2014 4:48 PM (GMT 0)
I echo the comment about the second reading of your slides. Assuming you still come back as a G6 (and you probably will), the treatment that will least affect your travels is AS. I know that everyone is not wired for AS, but I do think you should do your due diligence there.

As for a non-AS treatment, pretty much everything should work for you. Brachy and surgery have different sets of SEs, so I urge you to read up on them. Brachy would typically have less issues with incontinence than surgery, in terms of your specific questions.

While it's a bummer you have to be here, as a G6 you have the luxury of time. Take that time to get smart on different treatments, including AS, and ask as many questions here as you'd like. We're here to help.
Posted 12/22/2014 6:51 PM (GMT 0)

riceman3 said...
any thoughts on which option I should lean toward?

Hello, Riceman and welcome. You have already received some excellent advice namely take your time, get a second reading on your biopsy slides and investigate all of the options.

Re your specific question, most of us here have our biases but probably our biggest bias is to push you toward a THOROUGH due diligence of the different treatments. Read the sticky thread at the top of our forum, www.healingwell.com/community/default.aspx?f=35&m=2652250 Read Walsh's, "Guide to Surviving Prostate Cancer" and Scholz', "Invasion of the Prostate Snatchers". Visit with expert doctors who do surgery, LDR Brachy, HDR Brachy and SBRT. And continue to reach out to us with your questions.

Good luck and let us know how you are doing.

Jim

P. S. to questionsaboutit: Glad to see you back with us but sorry you are having such a hard time. Your message from last night was heart felt and serves as as excellent reminder for guys to not rush into anything and to consider the potential results....hope your issues improve.
Posted 12/22/2014 11:14 PM (GMT 0)
Hello Riceman3,

Sorry you got the news that is common to this group, but you are with kindred spirits here. You will find a very wide spread of opinion, outlook, information and values.

My advise is similar to the above. Definitely get the 3rd Edition of Walshs' book and read the majority of the book. You can skip the advance disease chapters if you like.

You have G6, this is good. A second opinion on the pathology is a great idea (I did not follow this advice for reasons I will discuss). The point of having your slides read by one of the two big labs listed above is that most all pathology departments have pathologists (MDs) reading all kinds of slides, not just PC. The Gleason score is a bit subjective and the PC pathology specialists can go deeper than the generalists.

You do have time, don't rush your decision. Please do not micro-optimize your decision to fit your current work schedule. Your decision must be macro-optimized for YOU, YOUR LOVED ONES and YOUR life in the long run. You have a bunch of good advice on radiation therapy in all its forms. Please do be sure to understand ALL options including robotic surgery. Of course, surgeons recommend surgery, ROs recommend radiation etc.

It is also critical to understand your family history. PC has strong genetic causality. In my case, I went for a biopsy at age 55 with a PSA of 1 with a negative DRE. I was totally asymptomatic. However, I watched my Dad die after 9 years of fighting metastasized PC. Dad was diagnosed at age 55 in stage T4. My younger brother was diagnosed with PSA=2.95 and a positive DRE at T2; he had a Lap Radical Prost operation and today is fine-100%. On learning more about family history, all men in my paternal line died of PC at age 62-64, most all were diagnosed late in T3 or T4.

So for me, I chose RALP surgery to remove all the prostate cancer cells and all the prostate cells. There are many paths, this was the best for me. I know the risks of Urinary Incontinence and ED. I accept those risks. There are lots of treatments for ED, many different ways.

The priorities are clear:
1) kill the cancer
2) maintain urinary continence
3) maintain sexual function
Individuals can re-adjust this list if they have educated themselves enough to make informed choices that they will be happy with in the long run.

You are in the drivers seat. Please make sure you make the best decision for you for the rest of your life. Many (including the doctors) will try to sway you. You have the time to do the homework and research and find the solution that fits you best. I will be praying for you as I pray for all the men on this list.

Best Regards, ScientificLifestyle
Posted 12/23/2014 4:11 AM (GMT 0)
To everyone who responded, thank you for your honesty and support. In 36 hours I have more advice and insight than what I could have gotten in weeks of reading. I am truly in your debt. Questionaboutit no need to apologize for your honesty we all have our dark days, it's great to have an online brotherhood to listen.

I go for a second opinion in mid January. I will remain active and contribute and update as I go through this journey. To everyone, have a wonderful holiday season and a happy new year.
✚ New Topic ✚ Reply