Prostate Cancer Diagnosed Jan 2

Looking for any advice as a newly diagnosed prostate cancer patient troubled with decisions.

Diagnosed with Prostatic Adenocarcinoma Jan 2, 2018 at age 47 yrs.

PSA levels monitored since turning age 40

• 08/30/2011 - 2.7
  
• 08/11/2012 - 3.0
  
• 08/13/2013 - 2.7
  
• 07/17/2014 - 3.37
  
• 2015 - skipped annual physical that year
  
• 06/16/2016 - 3.5
  
• 11/02/2017 - 4.9 - primary doctor suggested now is time to see urologist
  
• 11/15/2017 - 6.19 (had sex day of, was not aware could affect score, DRE was done before blood draw)
  

DRE - revealed normal prostate as described by initial doctor and a doctor seen for 2nd opinion

12 Core Biopsy performed Dec 22 with results Jan 2:
6 showing positive for cancer

• 3+3, 5mm, right base, 35% of total biopsy
  
• 3+3, 3mm, right mid, 25% of total biopsy
  
• 3+3, 10mm, right base lateral, 55% of total biopsy
  
• 3+3, 1mm, right mid lateral, 10% of total biopsy
  
• 3+4, 10mm, right apex lateral, 40% of total biopsy
  
• 3+4, 2mm, left apex lateral, 15% of total biopsy
  

Prostate gland size - 19cc

Initial Urologist who did exam and biopsy has recommended having the prostate removed and does the robotic type.
2nd opinion from Urologist who does the prostate removal as open surgery has also advised best option is removal.

Both have stated I am NOT an ideal candidate for AS. Both are steering me away from the other treatment options suggesting my number of cores detected makes me an unlikely candidate for success. I believe they covered all of the other options during my visits. After researching I can pretty much confirm they covered accepted alternatives. Both suggest radiation would be a bad long term outcome for me as a first treatment option and I should definitely avoid it before doing some other option whether it be removal or not.

Have had no physical symptoms. Father diagnosed at 69 (5 years ago) when experienced trouble trying to urinate, had cancer confirmed and had prostate removed. No cancer seen since.

I'm sorry about your diagnosis. When it is so recent it can be impossible to cool your mind down. Prostate cancer, even high risk prostate cancer, progresses slowly at first, so you have plenty of time to let your emotional temperature cool. Do yourself a favor and take that time. Decide not to decide anything for several months.

In the meantime, it's a good idea to get a second opinion from Epstein's lab at Johns Hopkins. It may cost you $250, but is worth it for the assurance that will provide.

AtomAnt said...
Both suggest radiation would be a bad long term outcome for me as a first treatment option and I should definitely avoid it before doing some other option whether it be removal or not.

That's because you were talking to urologists who know next to nothing about radiation. Don't blame them for being woefully ignorant - it's not their job; it's your job to go out and talk to experts in each kind of therapy.

I think surgery (either open or robotic) should work fine on your borderline "favorable intermediate risk" prostate cancer. Your young age is prognostic for a good recovery. But that is true of SBRT and brachytherapy also, but with a lot less potential side effects. All of those therapies have a 90+% chance of curing you, and they all have salvage therapies in case they don't work. Remember that the downside of being diagnosed at a young age is that you will have more time to live with any lasting side effects of treatment.

There is a myth that radiation side effects occur later. That has been disproven:

/pcnrv.blogspot.com/2016/09/patient-reported-outcomes-from-protect.html

If you tell us where you are located, we might be able to recommend appropriate specialists.

I am located in the Chicago land area.

So far I have seen:
Michael Milani DO - UroPartners
William J. Catalona, MD - Northwestern Medicine

I am going to have my biopsy slides sent to Northwestern to Jimmy Yang. Dr. Catalona informed me that Jimmy had studied under Jon Epstein as I understood it.

Catalona is certainly among the tops in his field. He has been a big advocate for open surgery because he likes the haptic feedback.

In the Chicago area you also have some excellent radiation oncologists:

• Brian Moran for LDR brachytherapy (seeds) at the Chicago Prostate Cancer Center
• Arica Hirsch for SBRT at Advocate Lutheran General Hospital

If you can travel to Detroit, you can be treated by one of the top HDR brachytherapists (temporary implants), Alvaro Martinez.

Atom, I too am in the Chicago area, and would be happy to share my experience, and offer my input for whatever its worth. I too was diagnosed at an early age...48, and probably had the same concerns you are now having. Three years into this, and still learning my body. I dont know how to send a private message here, but if you do, and send me one, I will be happy to have you give me a call. I have seen both of the doctors mentioned in other replies. I am currently cancer free, and can tell you for certain to take your time, and do not blindly trust what the doctors tell you. Drop a line if you feel like it.

Too bad you weren't able to post yesterday, AtomAnt. My PCa support group had a good session viewing a presentation from the PCRI annual conference about selection of initial treatment (or were you there and I didn't connect the dots? Meeting was in Lincolnshire.).

Take a few minutes to read some of the stickies at the top of the forum, addressed to the newly diagnosed. Lots of good, solid information there. Above all, for now, the best decision you can make is not to decide on treatment yet.

I do agree that your biopsy results seem to indicate that treatment is in your future, but with your pathology you don't have to rush. It has been shown that even if you take a couple or few months to decide, it will have no impact on your ultimate outcome. Your odds for a cure are quite good.

If you were one of the two new guys at last night's meeting, let me know - maybe we can get together. If you weren't, let me know how to reach you and I can fill you in on the group. I guess we don't post those data in open forum, but if you let me know how to reach you, I can bring you up to speed.

I recently moved to the Chicago area as well. When I was researching surgeons at Northwesten - I found that Dr. Edward Schaeffer is one of the best at NW for Robotic. He is famous for have done Actor Ben Stillers Robotic Surgery a few years back and was trained at Johns Hopkins. Although I chose surgery, mine was a hurried “get it out” kind of decision- it’s working so far but the important question is for how long it’s going to work. I don’t care much of the SE but the chance of recurrence is high as you and I have similar ages and pathologies. The cloud of recurrence is always hanging and I have seen many cases with our situation see a recurrence on this forum.
It seems that radiation gets to cancer outside the prostrate capsule(you may have a slight risk on that front as you have a smaller prostrate vol 19cc ). Although everyone says with surgery you always have a second chance as radiation to fall back upon - it’s not the same as if you get radiation as the first line of therapy when you have a prostrate.
For me the two advantages of surgery is that I got to pee freely after surgery and I had the pathology report.
It’s not an easy decision- all the best.

Welcome to the club. I was heading the surgery route based on similar advice you are getting from surgeons. I even had an appointment with a world renown surgeon, done over 1100o. But got to meet the head of the radiation oncology unit at Florida hospital and was briefed on High Dose Rate Brachytherapy. I had my first of two, two days ago, play 18 holes of golf yesterday. had one day of burning while peeing and my perineum is a bit sore. I go back in two weeks for the second treatment and I am done.

I would take time (took me 7 months to get to treatment decision) to ensure you are fully informed of the options, the side effects and the post-treatment recovery difference between options.

Good luck. Denis

I was going back to one of earlier discussions where TA had pointed this out and it makes sense to me that RT after RP is much more difficult as you don’t have the prostrate to shield the surrounding organs and hence is more complicated than if it were given as the first line. So not sure how it is misleading.

ddyss said...
I was going back to one of earlier discussions where TA had pointed this out and it makes sense to me that RT after RP is much more difficult as you don’t have the prostrate to shield the surrounding organs and hence is more complicated than if it were given as the first line. So not sure how it is misleading.

Think you and ASAdvocate are arguing two separate issues? ASad was stating there is treatment options after initial RT. I think you were making a comment about RT after RP?? Please confirm?

Dbell, you got it right.

You are wise to have legitimate concerns regarding the long term effects of radiation treatment, especially at your young age and are very likely to live another thirty years or so. However, as has been mentioned earlier, cancer at the apex has a higher possibility of resulting in positive surgical margins, which could result in the need for salvage radiation in the years following prostatectomy. But with your father's history of cancer and the grade 4 component of your biopsy, you do need to take action in the near future.

So if I may capsule summarize, you face surgery with the possibility of requiring radiation anyway, probably within five years or so thereafter... I'm not sure what the stats are regarding how far in the future after RP one is still at risk for biological recurrence. OR undergoing "some form" of radiation now and hoping that there are no radiation induced problems 20-30 years in the future... or at least the likelihood of always being concerned about that possibility, or developing other pelvic or blood disorders and wondering/not knowing if it was brought about or facilitated by the radiation.

The general rule is that men under 70 get surgery and men over 70 get radiation. Some here (perhaps many) will refute that. It is not my rule. Also many here will tout the 'recent advances' in radiation treatment as well as the 'many' options for post radiation salvage procedures. Things are a bit different when it is YOUR body they are talking about. Some of the proponents have never had surgery nor radiation, and some who had favorable results from radiation had an entirely different set of circumstances from your own.

In my own defense, I had surgery AND radiation and seemed to have suffered some of the more unfavorable side effects of both. Just my two cents. Be sure that you speak with several men who have actually undergone any procedure you may be considering.

RobLee said...

The general rule is that men under 70 get surgery and men over 70 get radiation. .

I think this is very "old school" philosophy and current treatment options do not general follow this ideology. I was recently diagnosed and this is similar to what my URO said which is outdated and not the current trend of MSKCC and other top institutions. Conversely, when you are young (under 70) why would you want all the potential SE (ED) of surgery when RO can give you similar results with usually limited SE?? Sure some RO guys will also chime in here more eloquently!