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Posted 12/1/2016 5:02 PM (GMT -5)
Hello everyone, I am new here and I am needing to make a decision on what to do, whether take my prostate out completely or do the radiation treatment. From what I have read, with my Gleason score at 7, the radiation is very successful. I am 54 and in good health. I am hoping to hear from some of you and your experiences with either. I would appreciate anything.

Thank you

Post Edited By Moderator (Tudpock18) : 12/1/2016 3:58:31 PM (GMT-7)

Posted 12/1/2016 5:15 PM (GMT -5)
Welcome to HW, sorry you need to be here.

What is your PSA?

Generally, guys at G7 have trouble selecting which treatment because they all do about the same thing with varying side effects and little scientific proof that one is better than another. Likely you'd do just fine with either radiation or surgery. Pros and cons both ways.

Sometimes it come down to what you'd prefer.

I went the RT route and now 5 years later, everything is fine. The SEs are manageable, my PSA remains low.

Do you have concerns about surgery? Radiation is a big subject as it comes in many forms - beam, seeds (brachy), SBRT, IMRT, etc.

Andrew
Posted 12/1/2016 5:37 PM (GMT -5)
Thank you very much, In appreciate your help..... I am not sure what my PSA is now. I have a couple concerns with either I guess. The surgery sounds like I may never have sex again and possible loss of bowels, leaking etc. The radiation sounds less evasive but I'm not sure it will be enough. My doctor mentioned that once someone gets the radiation that doing surgery is much more difficult because of the ability for the body to heal.
Posted 12/1/2016 5:40 PM (GMT -5)
Also my brother just past away in March 2016 after fighting Leukemia for over a year. It was brutal, and then I find out this. Unreal last couple of years. Not sure if that has any bearing on this. The amount of stress I have been under has been very intense, though it has been getting a bit better lately.
Posted 12/1/2016 6:03 PM (GMT -5)
Hello, Elk and welcome. I edited your post to give it a subject which will gather more responses than a "no subject" thread. I'm heading out to dinner right now and will respond more later. For the time being let me just suggest that you read the "sticky" thread at the top of our forum that is designed for newly diagnosed patients. Also, you should seek out an expert second opinion on your biopsy slides from Epstein or Bostwick Labs. Finally, please construct a "signature" that tells us details about your case, e.g. PSA, number of positive cores, etc.

You have multiple options for cure. Stick with us; we are here to help. More later.

Jim
Posted 12/1/2016 6:04 PM (GMT -5)
Hello Elkcaller , I`m a radiation guy ...getting the straight 45 fractions,81grs...With HT (6-mom. Lupron before I started the rads.) Markers in prostate ....for the IGRT ..Tomotherapy. Like ITShop said there are a variety of treatments that can be combined to get the best results for your situation.....with me having a very weak stream to start with , I opted to go with the Tomotherapy ( computerized with scans on each visit to line up precisely). I`m thinking less SE`s in the end with about the same results. SO far 31 fractions down with VERY little to complain about. If it works , I`m going to feel pretty good about my decision ....problem is , this PC ---- is so awful..never know for sure after your chosen treatment it`s over .......you can e-mail me if you want more details about the radiation I chose ....Good Luck....David
Posted 12/1/2016 6:12 PM (GMT -5)
Thank you guys, I only have VA to work with. I will try to get as much information from them as possible. Looks like this information will tell you more about my situation. I am supposed to make a decision tomorrow but I think I need a little more time to make the right decision. I believe with all your help I will feel much better about whatever is chosen. I have no idea all of the codes you guys give. But I will learn them asap.

Again, I very much appreciate your help.....

Mike
Posted 12/1/2016 6:12 PM (GMT -5)
The traditional wisdom is that if surgery fails you can always do salvage radiation. If radiation fails, there are salvage options and more than just follow up surgery. I wouldn't worry about that at the moment.

Have you talked to a radiation oncologist (RO) yet? There are a number of delivery methods that minimize SEs. SBRT (cyberKnife) is a great option as well as brachy seed implants.

both surgery and RT have effects on sex, leakage, bowel issues, and so on. Post surgery all of those hit right away but for most men they resolve in time. Some will need pills/shots for sex and a few need pads long term. Most do just fine and with in a few months are back to doing everything they were before.

After RT, the SEs tend to come on more slowly and things like ED might not show up for awhile. Bowel issues can be a result of RT (likely more than from surgery). You don't hear about much leaking post RT.

Personally I went with RT because the surgeon had concerns about my heart/lungs and that made me not the best surgery candidate so I went with external beam which was offered by my local hospital.

I'd suggest you get a second opinion or two from other specialists.

Ask all the questions you want, we're here most days,
Andrew
Posted 12/1/2016 6:14 PM (GMT -5)
FI Drifter, I am leaning towards the radiation for now. It is just much more difficult than I had thought...

Thanks again and good luck with your situation and please keep us updated.
Posted 12/1/2016 6:22 PM (GMT -5)
Andrew, I will find out if I can go see other specialists tomorrow. Since I only have VA I may be limited as to what I can do. If they won't allow it then I will try to get the reports and pay from one myself.

I have one important question, if I am at a Gleason score of 7, do I have much time to get this done? Should I just make a decision quickly? Or do I have months before I need to get it done? I know its not a crystal ball but any insight as to what is normally needed would be helpful. I am kind of in a panic but probably don't need to feel that way.

Thanks again,

Mike
Posted 12/1/2016 6:30 PM (GMT -5)
It's a tough decision. I went back and forth like a ping pong ball trying to decide. Finally settled on brachy and it has been almost four years. No side effects and the cancer is beaten back.

To your question: I don't think you need to rush it and get treated super-fast. You can take your time to research it, see doctors, etc. (within reason). I took a few months.
Posted 12/1/2016 6:34 PM (GMT -5)
Elkcaller,

First off, you have time to make an intelligent decision on treatment.

I had robotic surgery and I can tell you that I suffered zero ED and very slight incontinence (stress incontinence when I lift something very heavy.) Sex and orgasms are still good, except without a prostate there are no ejaculations. I went in surgery at 2:30 pm and when home the next morning after eating a large breakfast. Now the disclaimer. Everybody is different, there are no guarantees on the outcome.

I did have to get salvage radiation (IGRT/IMRT) 2 years latter which again was a non-event (39 treatments for 70.2 grays). Again zero side effects. If I had radiation first off and it failed the prospect of salvage therapy is pretty dismal.
Posted 12/1/2016 6:54 PM (GMT -5)
Thanks guys, what is the "brachy"? Never heard of that one.

I will be looking into the robotic surgery and the radiation a lot more now thanks to you guys. I was about ready to flip a coin to make the decision since it seems like there is really no right or wrong answers to this....

Now the doctor said that I could choose to do nothing and be checked every 3 to 6 months to monitor it. Is that wise given my 7 Gleason score?

Thanks again
Mike
Posted 12/1/2016 6:57 PM (GMT -5)

elkcaller said...
I am supposed to make a decision tomorrow
Mike

Mike, NO! NO! NO! NO! NO!

Rushing off to a quick decision before you are educated and before you have multiple opinions is the worst thing you can do. You get one chance to get this right the first time...take some time and get the appropriate information and understand your alternatives before rushing.

Jim

P.S. Did I say that a decision tomorrow is a bad idea? nono
Posted 12/1/2016 7:08 PM (GMT -5)
Mike

we're close in age and Gleason score - my choice was surgery. I had a cancer inside of me and I wanted it out. I am young, strong and in good health. I felt I could heal well.

I chose an experienced surgeon with a great record. My surgery was open - I'm just 2 weeks out and feel great. Obviously leaking some, but I expect that to get better

Take the time to make a decision you are comfortable with - knowledge is power!
Posted 12/1/2016 7:11 PM (GMT -5)
Thank you Jim, after listening to you guys I will be going to my appointment tomorrow more for a little more information but really for all the test results I have so far. Then I will find someone for a second opinion... You guys are awesome and its a beautiful thing what you're doing.....

I will NOT be making that decision tomorrow. :-)

Thank you.
Posted 12/1/2016 7:12 PM (GMT -5)
Mike... I 2nd and 3rd the quick decision thought. Why do you HAVE to make that decision so quickly? Tell any doctor that you want to discuss options in consultations with doctors. Do some research and make a decision you can live with. I wish you luck with your research and decision. Take care and keep us posted. -JR
Posted 12/1/2016 7:19 PM (GMT -5)
Thank you JR, I have only been going by what the doctor at the VA mentioned to me. And he said he wanted me to read up and come back to him with my decision. I can put that decision off now and feel good about it thanks to you guys....
Posted 12/1/2016 7:34 PM (GMT -5)
Elk, You stated that your doctor mentioned that you might choose to defer treatment, and come back for more tests in six months. Well, that is a form of Active Surveillance, and it is certainly a great choice for many guys with Gleason 6 cases. It MAY also be appropriate for men with only a small amount of G4 within that G7 score. So, could you please add a signature with more specifics from your biopsy?

How many cores were sampled? How many were positive for cancer? What were the Gleason combinations for each of them? Finally, what percentages of the cores were cancerous?

Having this data will be very helpful to us in offering you our opinions. In any case, please don't be rushed into making a decision while you are still gathering information.
Posted 12/1/2016 7:35 PM (GMT -5)
I went for surgery as you can have radiation as a secondary treatment (I did, as well as hormonal). If you have radiation you cannot have surgery as the radiation messes up your insides to the point that they can not operate.
Posted 12/1/2016 8:52 PM (GMT -5)
Hi elkcaller and sorry about your diagnosis. I'm about your age and coincidentally, I also lost my brother to leukemia last year when he died of complications from a bone marrow transplant.

I echo what everyone else is saying about taking your time to make a decision. Prostate cancer is a slow grower and you generally have months to decide what to do. If you have an appointment tomorrow, try to get more information on your biopsy--how many samples were positive and what percent of the cores were cancerous? Also, if you are a Gleason 7, there's a significant difference between being a 3+4, then a 4+3--the first combo being more favorable than the latter combo.

Then you want to start investigating your treatment options, which will mean talking to several specialists. Urologists are surgeons and they can give you the best info on that. (And if you choose surgery, you want someone that has done 1000s of surgeries.) Radiation oncologists can talk to you about radiation, but I'd urge you to specifically look at brachy therapy (radiation inserted directly into the prostate) or SBRT, which is an external radiation process. You can't count on every RO to practice those so you'll need to do some investigative work. We can be helpful in guiding you as you work through that.

Good luck to you--you have every chance of doing very well!
Posted 12/2/2016 7:44 AM (GMT -5)

elkcaller said...
Thank you guys, I only have VA to work with. I will try to get as much information from them as possible...


Before I decided to go outside the VA for my PCa treatment, I was going to have an appointment with the head of Urology at Audie Murphy in San Antonio. Suggest you talk to your head doc at whatever center you use.
Posted 12/2/2016 8:37 AM (GMT -5)
I'm surprised nobody mentioned this point, elkcaller -- Urologists are surgeons. As such they will almost always speak much more about surgery than any radiation options. Although they may know the names of the various radiation choices, they usually do not have complete or up-to-date knowledge about radiation treatments. If you want to learn about radiation, see a radiation oncologist (we call them RO's). Even within radiation oncology, though, many doctors know and can speak well about the therapies they can offer, but say little about other, possibly more attractive, options.

Early on, I decided I did not want "another" major surgery. Make no mistake, prostatectomy is major surgery. I have had open-heart surgery, several other heart procedures and a couple of other abdominal surgeries. I did not want to risk the side effects and/or morbidity of yet another surgery, so I chose radiation.

I then met with two radiation oncologists to discuss what they could offer. We spoke about brachytherapy (implanted radioactive "seeds"), traditional external beam radiation and SBRT (CyberKnife). A lot of the choice, for you, may depend upon what options your VA center has available. It probably makes sense if you could find out what options you will be offered, then come on back here to see what experience and knowledge the guys here have about those options. I wouldn't try to tell you why I made the choice I made, unless that option is available to you, so once we know what your choices are to be, we can help more specifically.

Above all, learn all you can handle, and realize that with a Gleason 7 biopsy report (is yours 3+4 or 4+3?), you don't need to rush right out and start treatment. Research shows that modest delays of even several months really don't make any meaningful difference in your chance for cure, so use your time wisely to get used to the fact that you "have cancer" and to understand the strengths and weaknesses of the treatment options you have available.
Posted 12/2/2016 8:46 AM (GMT -5)

Dr WHO said...
I went for surgery as you can have radiation as a secondary treatment (I did, as well as hormonal). If you have radiation you cannot have surgery as the radiation messes up your insides to the point that they can not operate.

Well, this is generally true but is misleading without an added comment and is NOT a good reason to choose surgery. What is left out of this statement is the fact that there are good salvage options after a failed radiation treatment that are just as effective as salvage radiation after failed surgery. Many urologists will use this "backup" statement as persuasion to have surgery and it's a bogus argument in my opinion.

Re Active Surveillance, there are some programs that will accept you as a G7. But that would be a 3 +4 and not a 4 + 3 and would require few cancerous cores with small percentages of cancer. Mike you need to give us fuller details re your diagnosis for us to give you better advice. I will also repeat my advice about getting a second opinion on your biopsy slides from Bostwick or Epstein (details on how to do so are in the sticky thread). Once you get the EXPERT opinion you will have real knowledge about your case and can move forward to decision making.

You are likely to be cured with either surgery or radiation. Re radiation there are multiple types, LDR Brachytherapy (seeds), HDR Brachy, SBRT and IMRT. You need to talk with experts in each of these in order to get a full understanding of your options.

In my mind, the differences in choosing surgery vs. radiation comes down to value propositions. Both will cure you in all likelihood. The main value proposition of surgery is that you get immediate knowledge of your exact pathology. The main value proposition of radiation is that you have a better chance of avoiding the bad side effects of ED and incontinence. You have to decide which is more important to you.

Jim
Posted 12/2/2016 9:11 AM (GMT -5)
Good morning everyone, I am going to get all the information you requested today when I go see the Urologist at the VA. I want to thank you all again for everything. I do believe my diagnosis was a 3+4 not 4+3. So I see that is better. Makes me feel alot more hopeful for sure. I will post later this evening when I get everything together.

Thanks again and I hope everyone has a great day!!!!!!

Mike
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