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PR advice for my case please

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Posted 6/29/2014 5:30 PM (GMT 0)
Hello guys. Could I get some in general advice from you guys concerning what options I should look at for my newly diagnosed PC?

I am 50 yrs old and physically fit and very active. My DRE and urine was clear, my PSA is 3.7 and has risen slowly to that from 2012. After biopsy, 10/12 cores were positive with 7 of those being 3+3 and three of those being 3+4.

My surgeon at Urology Centers of Alabama has suggested an RP and believes that with the numbers that I am T2c and he believes there is a high likelihood of cure with the procedure.

I read where radiation seeds are best options from those doctors and RP's are better options from those surgeons.

My question is where to turn next? my surgery is tentatively scheduled for the end of July.

Could I get opinions from each of you concerning my numbers and what maybe I should do next? I know it is my decision, but I am not even sure where to turn to for the latest and best research to make my decision.

Thanks,

Charley54

Posted 6/29/2014 6:28 PM (GMT 0)
Welcome to HW, sorry you need to be talking to us.

I'd get a second opinion and talk to a radiation oncologist. Here's the thing that is going to drive you nuts - surgery, beam radiation, and brachy (seeds) will likely all work and put in the the 'curable' zone.' Each has its side effects and there isn't any really good scientific way to choose between them. The guys who've done surgery will say that is the best, we radiation guys will say that is best.

It's going to be tough to choose between them and in the end will likely come down to what you are most comfortable with.

I have two brothers, both with PC at about your numbers. One went surgery, one brachy and I did beam radiation. Two years later we all have low PSA, about the same side effects and hope that we'll pass the five year mark and not need any more treatments.

Don't worry, folks with stronger opinions than me will weigh in soon.

Hang in there and keep us updated on your progress,
Andrew
Posted 6/29/2014 6:30 PM (GMT 0)
Charles,
You have intermediate risk PC. Either surgery of any of the forms of radiation should work at a 75% or better cure rate. Seeds wil result in the least amount of side effects, both short and long term and surgery the greatest.
The advantages of surgery are that you get post op pathology report and good feedback on post op psa. Any type of radiation will take months or years to determine a reoccurrence
The advantage of radiation is that it is more effective on positive margins and cancer around the nerves. No recovery time or catheters, and better chance of potency and continence.
Which ever option you choose find the best possible doctor for that treatment for the "artist" you choose will have a greater effect than the option you choose.
Posted 6/29/2014 7:08 PM (GMT 0)
Charles:

You can beat this and treat it using various options.

Whatever you decide on, select your "mechanic" wisely. You don't even have to like him. He just has to be someone who is very good and very experienced. You will get one shot at your first treatment attempt and hopefully your last treatment attempt so select the practitioner wisely.

Hard to predict potential side effects as they would relate to you individually because you are not a typical statistic. You are younger than the average guy seeking treatment and in your words you are very fit. In the hands of a superstar surgeon you could have no side effects at all. This was the case with me and many other men.
Posted 6/29/2014 8:01 PM (GMT 0)
I'm 45, diagnosed at 44. I'm military and went to SAMMC for everything. My doctors whether they did one RP or a thousand being military they get paid the same. So I asked my uro if I was your brother what would you have me do? He said if I was his brother go with surgery because I was 44 and had a long life to live still. Physician friends told me the same thing so I went with the surgery. In my case it seemed to be what was best. This was my experience and just wanted to share. Good luck brother.
Posted 6/29/2014 8:02 PM (GMT 0)
Charles,

You have many different options and each has its benefits and drawbacks. As you will see I selected surgery over radiation for the following reasons;1) I had a gleason 9 cancer;2) my psa was over 240 before my surgery;3)I was advised that if I had radiation, that I could not have surgery due to scar tissue formation;4) I wanted to get my prostate removed in order to get rid of most of the cancer. I was under the impression that I would receive radiation therapy post surgery but I recently found out differently. Now the radiation oncologist has declined radiation therapy until I exhbit additional symptoms. Had I known this would happen before surgery, would I still have elected it? Absolutely! I felt I did not need an agressive GS9 cancer residing in my body and sending off additional cells to distant parts of my body. At any rate, that is my take on this cancer. Just remember to ask plenty of questions so that you are comfortable with the decision you make.

Regards,

DX 10/04/2013 PSA 187.5
07/11/2013 psa 3.31
3/10/2010 psa 1.87
1/24/2006 psa .87
Biopsy 10/28/2013 4 cores positive gs 9 (4+5)
Bone Scan 12/09/2013 2 hot spots in spine
Hormone Therapy started 12/17/2013 22mg lupron, 50 mg Casodex
Bone biopsy 01/09/2013 negative
RALP 2/19/2014 Non Nerve sparing, Lymphovascular invasion
Pathology T3B NX, MX, prostate size 4.2 X 4 X 3 cm, 31 grams
Bilateral cancer found involving 6% of prostate
03/07/2013 PSA .6
05/29/2014 psa <.01
Posted 6/29/2014 11:03 PM (GMT 0)
In addition to what the others have written, please see the first threat in prostate cancer forum. It is titled "newly diagnosed...." It has some excellent data and posts.
Posted 6/29/2014 11:07 PM (GMT 0)
Thanks guys, I appreciate your input. I realize how important the surgeon is, just not sure how to find who is the best. Both RP surgeons at Urology Centers of Alabama have over 2,500 RP surgeries each. the centers itself has an 85% cure rate on RP's. With my numbers, Dr. Bugg feels confident that everything is contained and that it is curable. I guess 75% chance with my numbers is good, but I sure wish it were a little higher. I guess I am out there looking for people to tell me that I am going to be "fine", but I know in reality that no one but the Lord knows. I wonder if it is ok to seek a 2nd opinion from another surgeon at the same practice? I wish I were sure that it is all contained, and I would have that prostate yanked out in a heartbeat probably. I just don't know if there is a way that you know for sure? Wow what a week.
Posted 6/30/2014 12:03 AM (GMT 0)
Charles, not only is it okay to interview other surgeons int he same practice, but it's also often a wise choice to travel for the best surgeon. There is a famous guy in Florida, for instance, which isn't too far from you.

Also, I think it's wise to be 100% convinced of the path you have chosen and then to not look back once you've made that decision. You could even talk to a BT specialist.
Posted 6/30/2014 12:14 AM (GMT 0)

charles54 said...
T I wish I were sure that it is all contained, and I would have that prostate yanked out in a heartbeat probably. I just don't know if there is a way that you know for sure?

and there's another problem. They can do scans, and other tests but there is no 100% sure way of knowing.

I went with radiation because I have some heart/lung issues that make surgery difficult and there was a small change my PC was on the margins. The nice thing about beam radiation is that my RO was able to open the beam up a little and target the questionable areas on the edge of my prostate.

Likely you'll do just fine with surgery. It won't be fun, there will be issues and normal will change, but it will get the PC out.

Andrew
Posted 6/30/2014 9:34 AM (GMT 0)
Hi Charles

I was in a similar situation to you, probably not as fit, but I went for surgery. I still think with what I knew then the surgery was the correct option, and i guess I was just unlucky that despite all the surgical indicators being good, I have had to undergo radiation now.

Some of my thinking that went into the original decision:
1) being young (for PC) surgery seemed to offer the quickest cure, and the day after surgery would be the worst I felt with recovery happening from that point, whereas radiation would be a downhill slope which reaches its depths only after the course is ended, and then taking at ;east a similar time frame to recover
2) Radiation is available as a salvage after surgery, but surgery is not so easy after radio.
3) Surgery gets the whole thing out, and you have a full assessment of the state of play once the prostate is out.

However with 20-20 hindsight, maybe radio would have been the way to go, but then again we don't really know where the PC has got to in my body. I am still happy with the way I went.

Advice (from a non medical person) I can give is - get fit, loose weight, enjoy your sex life as whatever happens it is going to change. Research your decision, and make it for yourself. Whatever path you take, stay positive about it, as having regrets will just eat you.
Posted 6/30/2014 11:39 AM (GMT 0)
Hi Charles. We all know what you're going through. I was told last week (6/23/14). Age 68, 1 core positive out of 24, Gleason 3+4.

Currently reviewing 2 primary treatment options: proton therapy at University of Florida, and robotic surgery by Dr Patel at Global Robotics Institute in Celebration, Fl. Dr Patel is the country's leading robotic surgeon having done 7500 operations. As others have said, experience is a major factor in both cure and side effects.

My suggestion for you is to call the proton people at UF and ask them to send you a getting started package. They will overnight it to you and it will contain all the forms you need to arrange a consolation visit, but even if you think this treatment might not be something you're seriously interested in, the package will also have the book You can beat prostate cancer without surgery enclosed which is highly recommended on this forum, and a contact list of some of the men who have completed the treatment. Just talking with them is therapeutic and informative.

Good luck to you.
Posted 6/30/2014 12:47 PM (GMT 0)
Hello Charles and a belated welcome to HW. As Rob suggested, a good place for you to start is to read the sticky thread that is linked here: www.healingwell.com/community/default.aspx?f=35&m=2652250

I would also suggest getting yourself deeply educated by reading several books on the subject including "Guide to Surviving Prostate Cancer" by Dr. Walsh, "Invasion of the Prostate Snatchers" by Dr. Scholz and "A Primer on Prostate Cancer" by Dr. Strum.

Next, you should really get a second opinion on your biopsy slides. Many men use Dr. Epstein at Johns Hopkins or Dr. Bostwick at Bostwick Labs. Reading PCa pathology is art so you want the slides read by a read expert.

As to getting a second opinion from someone in the same practice, I personally don't think that's such a great idea. You are likely to get the same answer. You absolutely should get other opinions but get them from doctors who have no connection with your current doc. As JohnT said, there are a variety of options that should cure you...you owe it to yourself to pursue these options including having consults with both surgeons and RO's. You should look at both HDR and LDR brachytherapy and also consider SBRT which has shown some excellent results with minimal side effects.

It is certainly true that whomever you choose, they should be highly experienced...let them practice on someone else.

BTW, I don't personally buy the notion that one should choose surgery because then you still have radiation as a back up. That's true but only a small part of the story. Surgery after radiation is problematical but...there are MANY salvage options after a failed radiation....just as many as after a failed surgery. That is why you should talk with radiation doctors so you get the whole story.

Good luck - we are here to help.

Jim
Posted 6/30/2014 2:40 PM (GMT 0)
Thanks guys, what would be the process if I would like my biopsy read from someone like Johns Hopkins hospital or some other professional clinic?
Posted 6/30/2014 3:50 PM (GMT 0)
Charles, for Bostwick you can call them toll free at 877.865.3262 and they will walk you thru the process. Here is a link to JHU: pathology.jhu.edu/department/services/consults/urologic.cfm

Jim
Posted 6/30/2014 3:50 PM (GMT 0)
I had my urologist request a review by JH. If the doctor requests it, it's my understanding insurance will cover the cost ($300-500). I've been told that Dr. Epstein at Hopkins personally reviews the slides, but I would think that the number of tissue samples coming into his lab would require other pathologists to be part of a team. I would like to that that his eyes were on my samples, but who knows.
Posted 7/1/2014 2:17 PM (GMT 0)
Hi Charles,
I just wanted to tell you that you have time, and options, as the others have stated. So, don't rush.
I also am a patient of Urology Centers and wanted to tell you there is a support group that meets there on the 3rd Thursday of the month, maybe we can talk there.

Be well...
Posted 7/1/2014 2:29 PM (GMT 0)
Thank you DanO. If you have a contact email or facebook page, could you email me at (email removed)? I have some questions that I really believe you could help me with. Thanks so much. I am on facebook as (personal Info removed)

Chuck, I removed the personal info from the body of your post. There are so many spammers out there trolling for info that we ask that members not post those details. To facilitate correspondence between members, you can post your email address as part of your profile and then folks can select the icon to the left of any of your posts to contact you. Jim

Post Edited By Moderator (Tudpock18) : 7/1/2014 8:47:22 AM (GMT-6)

Posted 7/1/2014 6:03 PM (GMT 0)
Charles, I have made my email available. As Jim said, clik on the icon below my name to the left of this post.

be well
Posted 7/1/2014 6:30 PM (GMT 0)
Hello Charles, sorry for the late reply as I'm not here much anymore. I had similar PCa stats on my biopsy as you and would be happy to share my experience and insight. If interested you can e-mail me by clicking on the envelope icon below "A Yooper" on the top left of this post.

Best to you.
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