Just found out I have PC...Now what?

My name is Ed and I live in Central VA. I found out on Monday prior to Christmas that I have stage 1 PC. I'm 59 years old and turn 60 in March.

 I had the usual 12 needle biopsy and only one sample came back showing 5% Adenocarcinoma, Gleason 3+3=6. There was one other sample which was labeled suspicion, High grade prostatic intraepithelial neoplasia. All other samples were benign, which I guess is pretty good.

I knew hardly anything about PC prior to the biopsy. I've had to learn a lot over the past ten days and am glad I found this site.

 My PSA was around 3.1 during the summer of 2012. During my check up with the UR this past summer, it was 4. He put me on finasteride 5mg during the first of Sept and scheduled a follow up apt and PSA test for the latter part of November. PSA was 4.8 and so he scheduled the biopsy for 16-Dec.

I've been visiting the UR since May-09. My prostate was a bit enlarged and during that time he put me on Uroxatral/Alfusosin 10mg, which I still am taking daily. It helps with the night time trips to the bathroom, but I still don't have a good stream.

Well, for you guys who've heard your UR tell you the bad news, you know what it feels like. I asked him what I should do and all he could tell me was I'd have to decide that for myself. He did say that AS would be something for me to consider since the cancer was at the very early stage. Considering the money I've spent in his office, I would have thought he'd pass out the Walsh book to each new PC patient. More or less, I was left in a state of shock as I exited the building in the dark pouring cold rain.

I started my research the same evening and it's been an emotional roller coaster for sure. I believe I don't have to make any quick decisions to treatment, but I don't like the fact of knowing I have cancer and not doing anything except AS. I've read all the side effects of surgery and the risks involved. I'm highly leaning towards Johns Hopkins, (three hours north), and either open surgery with nerve sparing, or the Di Vinci robot.

I really don't know any other info pertaining to the cancer. I am interested to see what other guys with similar stage cancer have done. Are there surgeons as good as Hopkins nearer to where I live? Possibly UVA? Surely someone in my area has used both hospitals.

Funny thing is, I've been suffering from bell's palsy since July. I was so looking forward to being normal from that disease before another one came along. It's doing better, although my right eye still waters a lot and I can't close it easily. At least the side of my face has returned to mostly normal and I'm thankful for that.

Any help you can provide is greatly appreciated. I just don't want to have to look back one day and say, "I should have done something sooner." All the best...Ed.

 

Post Edited (foxbo54) : 1/2/2014 10:57:37 AM (GMT-7)

Ed, I would never presume to tell you what you should or shouldn't do.  All I can tell you is what I would probably do under similar circumstances.

Statistics show that the likelihood of a man having cancer in his prostate is roughly equivalent to the decade of life he finds himself in.  At 50, there's a 50 percent chance; at 60, there's a 60 percent chance; at 70, a 70 percent chance, and so on.  Thus, it's not surprising that a small bit of Gleason 6 cancer was found during your biopsy at your present age.

Until someone convinced me that there was some Gleason 7 cancer in my prostate, or a number of Gleason 4 cells present, Active Surveillance would be my choice. 

"Cancer" is perhaps the scariest word in the English language, but with your stats there's a strong likelihood that you have an "indolent" variety that will never cause a problem, or at least not for quite a while.  I would explore further the AS option with your urologist.  But, at the same time, I would never allow myself to become complacent, and I would follow the AS program scrupulously and to the letter.  It's a tough decision, and AS requires a certain mindset that just doesn't work for a lot of guys.  Good luck.  I'm sure other guys will offer their thoughts.

Thanks Jim and clocknut for the responses. This is the only direct interaction I've had since no one I know has ever had PC, with the exception of an older guy at work who had radiation and seeds, probably twelve years ago. He's now 84 years old. So, that was surely the best course for him. Havn't seen him at work yet to speak with him, but will on Monday.

I did read the sticky at the top of the page and it surely holds lots of good info. I read it a couple of days ago. I've also watched various videos pertaining to the various treatments.

My UR has me scheduled to return to his office and another PSA test on 24-March. If I stay with the AS, I'll do the PSA every three months with another biopsy in December. It wasn't as bad as I expected, but I didn't want another helping either! :)

I have an appointment in the morning with my "gut" doctor. I've been having pains of diverticulosis again and only the two antibiotics taken together will get rid of it. I started having the pains right before the biopsy and haven't felt well since. I took the antibiotics last June and the pain came back in Sept. Took another round of antibiotics and the pain was gone until the first part of Dec. After learning about the PC, I'm wondering exactly what is going on. I had a CT scan last summer and it didn't show anything. So, I guess I'm pretty close to being normal for my age with the exception of frequent urination and the feeling of having to go often. It's just scary thinking that the cancer will sooner or later spread outside of the prostate.

I know we all will die one day, I just want to ensure I did what I could to stay around longer. Thanks...Ed.

Is the finasteride 5mg the same as Proscar or Avodart? When I saw the UR in November, I told him I was almost out of the finasteride and he gave me some samples of Proscar and Avodart to hold me over until the regular prescription arrived in the mail. I'm presently taking finasteride and Uroxatral. Are these two drugs the same as Proscar or Avodart? Thanks.

foxbo54,

Proscar= 5 mg finasteride. Avodart=.5 mg dutasteride. Proscar and Avodart are brand names, finasteride and dutasteride are generic names. Finasteride is now available as a generic.

Both drugs are 5-alpha-reductase inhibitors (5ARis), which means they block an enzyme that converts testosterone into dihydrotestosterone (DHT). DHT is the androgen most responsible for encouraging the overgrowth of cells in BPH.

Dutasteride blocks two versions of the enzyme, while finasteride blocks only the major version. Both work well for most guys. I would start with the cheaper one (finasteride) and switch to Avodart if that doesn't seem to be working.

- Allen

Hi Ed,

Sorry that you are here but glad you found us. HW is a great source of information and support. I highly suggest you visit the links in my signature below for folks newly diagnosed.

-Gedman

Thanks so much guys! At least I don't feel like I have to jump the gun and do something I may later regret. I've been reading everything I can get my hands on pertaining to the PC. I'm much better off now than I was a week ago. I really do appreciate the interaction on this forum. Thanks for taking the time to respond. It means so much to me and probably anyone else in our shoes.

The links are great! I will read them all. Thank you so much!....Ed.

Hi Ed... Yeah, that shock. A day one never forgets. Sorry, you experienced it but it can be a good thing.

I only wish AS was an option for me as that is what I thought about doing even with a couple of 3+4 cores.

PC is one of the most overdiagnosed and overtreated conditions out there. It's a major cash cow for the medical industry. Google some information the overdiagnosed/overtreated angle and that should help.

There are lifestyle changes one can make to slow the growth of cancer with exercise and consumption of certain foods IE: 8 oz. Pomegranate Juice, daily, can slow doubling time by a tremendous amount. Graviola kills cancer cells (even Snopes.com doesn't say it's not true) Start juicing (not steroids...rather fruits and vegetables)... I did the above and when my Gleason 7 was removed during my Davinci RRP my Gleason came back a 6. I wasn't expecting it to be a 6 and had I known it was truly a 6 and not 7 I would've done active surveillance. Body loves to heal itself if you'll work with it.

My best to you. That is the hardest aspect of the diagnosis...knowing what you should do and the pressure of not wanting to be wrong. It makes us panic and do things maybe we don't need to do. I went the surgical route and get upset when I think I was only a 6 after being told I was a 7. I can't get my old walnut (prostate) back. Old wally walnut is gone for good. I miss him. Quality of life is an issue and should be factored in your decision if you're able and it sounds like you're able.

Recover strong in 2014!

Another consideration is to use Jalyn. It combines Avodart and Flomax. You get the DHT lowering aspect of Avodart and some urinary relief from the Flomax. A study showed the combination to be better than taking the drugs separately.

This regimen is intended to shrink your prostate and should reduce your PSA. By reducing the DHT it is also removing food from the cancer with minimal side effects. It may take several months for this to occur and generally it will reduce your PSA about 35-50%.

Then while staying on the drug you can monitor your PSA and be on the lookout for the steady rise that usually indicates the cancer is growing. If the rise doesn't occur, great. If it does, it wil be more likely to be cancer and your docs can determine whether to do another biopsy and/or initiate additional treatment.

As others have said, the initial dx appears to be very low risk and indicative of active surveillance at the present. It is generally regarded that G6 rarely leaves the prostate or becomes more agressive, though you should be dilligent in monitoring the situation. As JohnT said, get additional tests to really know what you have. Most of the major labs that specialize in urologic testing offer far more than just the G score and physical amount of the tumor. For example, on Bostwick Laboratories' website there are numerous tests that can be performed that will give you more insight into the specifics of your cancer.

Do your research, take your time, and relax. There are many treatments to consider and you should examine them all. Hopefully you will never need treatment.

Hi ed

Welcome, but sorry you have had to find us. My opinion -- and only my opinion -- is that if I were in your shoes I'd seriously consider AS.

I understand that no one would look forward to annual biopsies. But I think I have read somewhere that some doctors are doing biopsies less frequently on their lower risk patients and using imaging instead. Don't remember where I saw this but maybe someone else here might know. At least it is worth asking your doctors.

Also you might want to weigh the unpleasantness of biopsies against the high risk of ED from many forms of treatment.

But whatever you decide you have no need to rush. Take your time and ask your doctors lots of questions.

Jim

Ed,

I'm a strong believer in AS and have been practicing it since I was diagnosed with PC in 2009. If you decide to go the AS route, there are three things my doctor keeps me focused on: maintaining a healthy diet, exercising to maintain a healthy weight, and reducing stress levels. (Yeah, I know. Reduce stress levels in these stress-filled times we live in? Well, reduce them as much as possible. )

Good luck with whatever course you choose to take on your journey. Take your time and examine them all and go with the one that feels right for you.

Ed, Welcome to the club nobody wants to join!   You've received some great advice so far, and it sounds like you've got a good urologist.  I say that because he's leaving the decision up to you as far as treatment.  many will try to push you into something without giving you all your options.

Continue your research, that's the best first step in my opinion, and as a guy with your biopsy results, you have time to do so.  John Hopkins is one of the best paces in the country, so you should be able to speak to a few people there.  Surgery is always an option, but so is brachytherapy, and the different types of radiation including SBRT.  I would speak to a specialist in each (surgeon, radiation oncologist, and a medical oncologist) to get the most info you can before you take the plunge.  You only get one shot at a primary treatment, so be comfortable with your choice.  As had been said, you've got a great chance at a cure and will die of something other than PCa. That always sounds so weird when I type that!

Come back with any questions you have.  we're not doctors, but we've all been through the different forms of treatment and can give you the patient's perspective, which a doctor seldom can.

Best of Luck!

Mike

Hey Ed... sounds like you are getting some good advice. My only comments are to research, research, research.... you have plenty of time. And be skeptical about anything you are told and read... the one thing I have found is that there is very few hard truths about this disease and the same data can be used to justify treatment or AS. If you pick AS decide on what trigger will push you to treatment and only change the trigger if data/science justifies it. I would also suggest you read the NCCN Physician Guidelines.

Your decision should be one that best suits you and your loved ones.