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Newly Diagnosed With PC Questions

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Posted 4/25/2016 11:13 PM (GMT 0)
I just received news that I've been diagnosed with prostate cancer. From reading the posts in this forum it looks like there's a lot of information people have about their condition that I don't have at this time (or was told and forgot at my appointment).

Age: 61
PSA: 4 in February 2016. Yearly PSA tests that have ranged from +/-1 (tests from 2010 to 2014). And a 2.5 (2/2015 test result)

Recent Biopsy Results: 12 samples taken. One came back at a Gleason score of 6 (out of 10). Two came back as questionable (the doc had a better term and explanation of what that meant. I don't remember). The rest showed nothing.

We discussed three options. Radiation seed implants. A type of radiation therapy and Da Vinci Robotic Surgery.

I'm opting for the Da Vinci procedure. Given my age and health (good except for this) we felt this was a good path and one I'm comfortable with at this time. He indicated the other two options "could" impact other organs, etc etc etc

I've been having pelvic/lower back/hip pain for a few weeks. I went to a ortho surgeon last week and he diagnosed stenosis and arthritis. I've had back issues for 20 years so what he told me was no surprise. Nor was his diagnosis. I'm reading now that that hip pain is symptom of PC as well (hopefully not my case).

What else should I be doing at this point?

Should I discuss a bone scan or is it too early at this point?

And, what else should I be asking about with my test results (as what I posted is not as informative as what I've read in some posts).

Thank you!
Posted 4/25/2016 11:30 PM (GMT 0)
Welcome to HW, sorry you need to be here.

Do checkout the sticky threads at the top of the forum for more great information. Other things you should do is to get a second opinion on the biopsy and treatment choices. You've got plenty, including active surveillance (AS). G6 PC cells don't spread and you could avoid treatment for many years on a good AS program.

Next thing, don't panic, you're going to be fine. It won't be fun, but you'll make it.

You might want to reconsider the radiation options, they are less invasive and at your age might be a good choice. Consult with a radiation oncologist for an opinion.

Bone pain in PC only happens in advanced cases. That's not you. You're hip/back pain is more likely due to what the ortho doc said, stenosis and arthritis. Well, and being 61 can cause a lot of back/joint pain. Doubt PC is playing a role there.

Hang in there and keep us updated on your progress.

Andrew
Posted 4/26/2016 12:49 AM (GMT 0)
Hey Elgin...

The amount of cancer you have is what I would call..."minuscule". But it is there and that's not meant to minimize how you must feel. Also...it's not meant to imply it makes no difference.

You need to find out...how much cancer is in the one core that has cancer (the Gleason 6 core)? That information is on your pathology report. Of you don't have a copy of it you can ask for it. You can probably just call the office and the nurse will call you back with that info. (But, get a copy anyway).


We're all scared "it's spread because I have back pain" when we get here. In the year and a half I've been around I've yet to see any of these back pains be cancer...with the amount you've got.

What I tell people is that prostate cancer and back and other sorts.of aches and pains tends to hit a man at about the same time in a man's lifetime. It's coincidental but natural we would be worried because we've been pain free for most of our lives. Bone scans are not recommended for people with your pathology. ...but usually many of us are so scared we have one anyway and.when we see the shape our old backs are in it scares us even more!! I'm no doctor...but I feel 100% confidant you do not have metastasized cancer.

You do have enough to keep an eye on. Active Surveillance should have been one of the options that was presented to you as a treatment option.. You might ask why it wasnt.

2 books that were recommended to me when I first arrived and found especially helpful are...

1) Dr. Patrick Walsh's Guide to surviving Prostate cancer (don't let the name scare you. This disease is not going to be your demise).

2) Invasion of the Prostate Snatchers by Ralph Blum and Mark Scholz.

More will be along with more information, questions and suggestions. You'll find a wealth of information on this site. Lots of knowledgeable men here.

Stay cool....as silly as it sounds...you really do need to try and not worry too much about this. But It's going to be an inconvenience...no doubt.

Hang in man.
Posted 4/26/2016 1:25 AM (GMT 0)
Thanks for the reply. Active maintenance was also offered by the doc and left off of my earlier post. I'll get a copy of my report and post up. Thanks for reply.
Posted 4/26/2016 1:29 AM (GMT 0)
Elgin...

Do not make any decisions yet. You should have discussed a 4th option with your doc and that is AS (Active Surveillance).

The very first thing you need to do is get a second opinion on your biopsy slides by Bostwick Labs or Dr. Epstein at Johns Hopkins. Please do not make any decisions until you at least do that. You have plenty of time, do not rush into anything, especially any radical treatment. And even after you get that second opinion, I would wait 3 months and get another PSA test before making a decision.

Please look at my stats, almost the same as what you are reporting and I opted for AS. My PSA has returned to normal levels after the biopsy. I have been on AS for over two years now and I am so, so glad I went with that option.
Posted 4/26/2016 1:43 AM (GMT 0)
Elgin ,

Hearing the word "cancer" is always scary, and because of what we know about other cancers, there is always an initial rush to get treated. I hope you will resist that emotional response - if instead you take your time to make this decision, you will probably be glad you did, even if you circle back to the same place. Your "very low risk" diagnosis gives you plenty of time to gather more info before you decide.

First, I hope you send your biopsy slides to Epstein or Bostwick for a second opinion. It's something you want to be sure about and they are the experts.

And, speaking of experts, that's what you really should do first, and you apparently have not yet done. You discussed 3 options with one doctor who, I'd wager, is only an expert in one of them and knows little about the others. You have to take the initiative to seek out experts in each therapy and find out about it. The first thing you will want to know more about is called Active Surveillance. In the longest running test of Active Surveillance, about half the men needed no treatment 20 years later, and those that did did no worse than if they got treated immediately - enjoying symptom-free living in the meantime. I'm sure that U of C and Northwestern have good AS programs.

There is absolutely no need for a bone scan or any other imaging right now - it will only drive you crazy and send you on a wild goose chase. If you think you are unnecessarily worried by every little ache now, bone scans will make that worse. If a doctor needs imaging for his treatment, he will tell you which he needs.

You have many great treatment options in the Chicago area. You have:
• Dr Catalona at Northwestern for surgery,
• Brian Moran at the Chicago Prostate Center for LDR brachytherapy (seeds)
• one of our members, 0311, gave Arica Hirsch at Advocate Lutheran glowing reviews for SBRT
• Alvaro Martinez in Detroit for HDR brachytherapy

You even have the possibility of focal ablation. Lots of excellent options available to you for you to learn about.

- Allen
Posted 4/26/2016 1:47 AM (GMT 0)
Elgin, welcome, as always, sorry you had to find us, but it's a great group.
I concur with the others. I think the first step is to get the second opinion on the slides. And make sure that they send not only the positive slide, but the two questionable ones.

I'm guessing your Dr might have referred to the questionable slides as High Grade PIN?
Take your time, be deliberate about your decision making. You get one shot at getting this right. So far from what you've said, you seem to not have a serious case, and may well be a great candidate for active surveillance,

Oh yeah, and get the books that Island Time mentioned. Easy reading and very informative.
Keep us posted
Posted 4/26/2016 1:58 AM (GMT 0)
Elgin, I'll add my welcome. My biopsy came back with 3 cores at G6, and my diagnosing Uro told me I had 6 months to make a decision. You're in a similar situation. USE that time to gather information, see experts, and try to get some perspective.

You're hearing some great information, and Mr. Tall Allen has given you some great references to go for information. One thing I have found to be true, is that PC is truthfully unlike other cancers, and the best results are found with the real experts. We're talking about doctors and teams who have treated thousands of patients. And those experts are found at the major centers.

Slow down, study, relax if you can. You are definitely in the 'curable' group, yes, cure is a real word for PC. Get it right, and you'll be fine.
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