Just Diagnosed, what do I do?

I am 51 and just diagnosed with aggressive PCa. PSA was 5.5 last month, after biopsy it went to 13 in under a month. Gleason score is 8 on both the left and the right side. Met with a surgeon that is suggesting a radical prostatectomy with a wide cut of the left side, nerve sparing on the right with a retropubic cut and most likely radiation after surgery. Also suggested participating in a study called Provenge. Met with a radiologist oncologist who is suggesting beam radiation, hormone therapy for four months and then have radioactive threads inserted into the prostate.

There are pros and cons of both and they both sound like they have a similar outcome except maybe with the radiation, incontinence isn't so bad.

My world has been turned upside down as you all have experienced. I need your input as to what you would recommend. I really appreciate the valuable information I have received reading many of the threads on this website and look forward to your valuable insight, experience and recommendations. Thank you in advance.

Devastated1

Sorry to hear about your diagnosis. Plenty of guys here have gone through the same as you, so I think you'll get a lot of helpful comments.

It is a good strategy to talk to a number of specialists about treatment options, like you have done. You may also want to do some reading, for example the book by Patrick Walsh about surviving prostate cancer is a good starting point. If you take the surgery route, you should also find out about the surgeon. Experienced surgeons generally do a much better job.

Two suggestions I would offer........

First, find an excellent medical oncologist that specializes in PCa for a better overview. Provenge is not the field for an urologist in my opinion. It is not a primary treatment and is not yet proven to be a cure all. My med-onc says it will be usefull, but not untill following proven therapies first.

Second, investigate High Dose Radiation Brachytherapy. It is a more refined and accurate version of seed implants that does a better job with less side effects. The best and most complete information I have found is at www.cetmc.com. It is by Dr Jeffrey Demanes at UCLA. He is the pioneer with HDR.

I used HDR along with IMRT as my primary therapy and added hormone deprivation as an adjuvant. I was a G 7, T2b, and PNI. My urologist would not operate as he expected he would have to leave cancer behind and didn't want to put me through the risk and side effects of surgery and then add the risk and side effects of radiation. He said at my stage the HDR and IMRT is more effective and less invasive.

With the people here and internet you can do a lot of research in a week or so. Take your time and relax as much as possible and read and search. I found it usefull to see different doctors and I met with 2 urologists (one did open and the other robotic), 2 rad-oncs (one was HDR and the other at the best seed operation in the country), and two med-oncs. I also read several books and searched the internet before deciding on the treatment. I was diagnosed in early September and started treatment in mid October only 5 weeks and a couple of days after the diagnosis.

Best wishes and keep the questions coming. The guys on this board have been through it all.

Devastated1.

Sorry to hear about your condition.

As others have mentioned, having a psa drawn soon after a biopsy may be misleading. The gland as just been invaded and it is generally thought that eight weeks (correct me if I'm mistaken, anybody) is the minimum time for re-test after biopsy.

You are young enough where if you decided on treatment, I'd do surgery first, and have radiation as a back up in the event of a re-occurance later. As you poke around the forums, you'll find that doing radiation 1st could make surgery a challenge if you go that route.

In addition, if you talk to a surgeon, they will want to do surgery. If you talk with a radiation person, they would want to do radiation therapy. Part of the maddening process of trying to figure out what to do.

All stuff you need to talk with your uro about. I'd also recommend a second opinion.

Just know that you are not alone and have good company here. This forum has been a very excelent coping mechanism for me.

W-O

I was in a very similar space as you when I was diagnosed in November 2008 at age 64.  I have never been as freighted as the day I was told I had PC.  My PSA was a 3, but a year before it was only 1.5.  My biopsy showed gleason scores of 6 and 7’s and I opted for robotic surgery to remove my prostate. 

 

After my surgery the pathology report showed I had a tumor with a gleason of 8 but it didn’t seem like anything escaped out of the prostate gland to the margin areas.  My first post surgery PSA showed a 0.02 where it remained for over a year.  My doctor suggested as a precaution I should get radiation treatments because of the high gleason score even though my PSA remained low and unchanged.  I did have the radiation treatments a few months back and my last two PSA’s have been undetectable.

 

I understand your fears and confusion as I walked in a daze for weeks.  My wife was instrumental in helping with my decision making process as my advocate.  The first place I came in the beginning was at this very forum which helped calm me down and also provided excellent comments of various procedures.  Everyone one told me things would get better and clearer after I crossed the metaphorical bridge after my surgery.  

 

Things will work out for you and it is helpful to find an advocate to discuss things with.

English Alf said...
Welcome to the forum, (Sorry you find yourself here too)

The immediate thing you need to do it nothing. That sounds like a crazy notion, but what I really mean is that you need to take a deep breath and realise that even with Gleason 8 you can take a while to work out what to do next.
Provenge is meant to be the big hope so that could be a good option, but you'll have to ask a lot of questions about that.
Combination of surgery and RT can sort out a lot.

(Oh and by the way, having a jump in PSA level soon after a biopsy has more to do with the effect of the biopsy on the prostate than the cancer. My second uro completely ignored the PSA test my first uro did soon after he'd done a biopsy)

Alf

 

Some great points IMO. Never even allow a PSA test for at least a week after a digital exam. I saw someone here recommend a book, 'A Primer On Prostate Cancer' by a Dr. Strum, that helped me to at least better understand the terms.

Devasted1

Welcome aboard to HW, glad you decided to join us. You have already been given some good suggestions and ideas in your situation, so I won't duplicate them here. Good luck to you, ask away all the questions you need, no such thing as a stupid question among us. If you ever need or feel the urge to vent, this is a great place to do that too.

A Gleason 8 is a serious dx, wont deny that, but its not a hopeless one either for many men. We have plenty of brothers here holding their own and doing quite well with your numbers.

Please stay with us and keep us well posted of your personal journey

David in SC

Thanks,

read the book and still reread it but why would a drug like casodex be something to try first before sugury or radiation? I do like the idea of targeted needle biopyses tha Mr. J. T. said above. that makes sense to this new guy.

Thanks, still learning.

I have a question that maybe one or more of you can answer. My urologists oncologist is experienced with both the open retropubic cut and davinci robotic technique and had great experience doing both. He is willing to do the operation with either approach but based on his experience he is recommending the retropubic open cut because as he says he can do a better wide cut than if he used the Davinci approach.

Does his suggestion and approach make sense to anyone?

i am trying to figure out how to do my signature like many of you have and need some guidance as to how to set it up.

Thank you in advance for your insight, comments and suggestions. It is very informative and helpful.

Devasted, also, after you make your sig., you must click the 'add sigh' box each time you post to make it show. It is set for a default off position. Most guys will post their sig on the first post of a thread, then leave it blank the rest of that thread. Oh, welcome, by the way...

devasted:

The conversation of open vs. Robotic goes on and on. The most important part of the surgery is the surgeon. My surgeon does open only, and he had nearly 30 years of experience doing then when he did mine. His practice has now beein doing robotic as well, for about 2 1/2 years now. Not sure how many they have done.

My guy still likes the hands on approach, and the tactile feel of having his hands inside. Some argue about the magnification advantage about robotic, and that is basically true, but open surgeons use other magnification means like screens by the operating table and lit and magnified hoods. Hospital time is all over the place, I needed a full 4 1/2 days myself, as there were some complications, yet we have had men here leave after an open surgery in less than 36 hours. While most robotic guys are home in 24 hours or less, some to complications have been in the hospital 4-5 days. If you have good insurance, I think the hospital part is a mute point.

Whether you have one larger incsision from open, or 5 from robotic, they still can hurt and need healing. Regardless of open or robotic, its a very complex and difficult surgery, one of the tough ones my surgeon said. So it still comes down to the surgeon's skill and expertise.

Some guys opt for the nationally known surgeons, and I have no issues with that, but I am one that feels there are hundreds, if not thousands of great local surgeons, who will be there to care for you after the fact, if you have complications or side issues. No one more than 50 miles or so away from where I live probably would have any reason to hear of my surgeon or my hospital, but I receieved excellent care at the hands of both of them.

Your overall healing curve depends on too many factors to answer. I.e, your overall health and physical condition to start, other medical conditions you may have currently, past medical factors, etc. Some guys jump back into their lives within a handful of weeks, and others, a year later still having issues.

Its important to know, despite a doctor's fame, there are no guarantees in PC surgery. There is no re-set button, no way to undo it once it is over. When you look at incontinence issues and ED issues, the results are inconsistent and all over the board.
So have realistic expectations about how you will or might end up.

I know you have a lot to think about

David in SC

If your surgeon is ALREADY talking about followup radiation treatment, ask him what benefit the surgery will provide? Most radiation oncologists will tell you they can get you to the same place without the surgery...

As a Gleason 9 with a PSA around 10, I chose surgery KNOWING the chances were 50-50 at best. But 50-50 is better than nothing...In my case, the surgery failed and I have just completed salvage radiation and HT is ongoing..So over a four month period, I have endured all three primary treatments..At this point I am continent, impotent and my PSA is undetectable..After 3 months on ADT, the only noticeable side effect are the hot flashes which are annoying, especially at night..

There have been studies that have shown with high risk (that's you and me and all the G-8 and up guys) doing surgery + radiation + HT gives the best chance of long-term survival...But the brachytherapy + IMRT combined treatment does just as well if not better without the risks and side-effects of surgery..Finding an R-doc who is competent in doing brachytherapy is not as easy as it sounds.. Best of luck to you..

I just finished Dr. Walsh's Guide to Surviving PCa. I would like to ask my fellow brothers that went down the wide beam radiation, brachytherapy and hormone treatment to get your viewpoints on how the procedures went, side effects, fatigue, incontinence, impotence, bladder and intestines,impact. etc. Do they do the 3D for the wide beam to only radiate only the prostate or did they kill good cells at the same time of destroying the PCa cells?

I know radiation has greatly improved over the last ten years but I am a little skeptical and would appreciate any and all of your comments, experiences, sideeffects, etc.

Thankyou.