Concerned: I just got the results of a... - Advanced Prostate...

Advanced Prostate Cancer

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Concerned

LuJuice profile image
12 Replies

I just got the results of a prostate biopsy when the previous PSA was 5.25. This hit me hard when my urologist informed me I have prostate cancer. I am 59 years old and I am at a lost. Did not think of this prior. I was informed I have a Gleason Score 7. Still not too sure about all of it. My urologist informed me active surveillance was not an option and the two options I got was Robotic Surgery to remove my prostate or radiation ( I believe seeds ). He also have sent me for Cat Scan, Bone Scan and MRI. He is recommending Robotic Surgery over Radiation but he set me up an appointment to confer with a radiation spec also. For me to decide. I will be awaiting the results of those scans and MRI but he suggested Surgery with a month time. I am concern if I opt with Surgery, the side effects. Where would be the best place to go for this Surgery. I want to try and salvage me sexual and urinary functions. I am new to this site and I need help.

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LuJuice profile image
LuJuice
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12 Replies
Tall_Allen profile image
Tall_Allen

Slow it down. With a Gleason 7, you have plenty of time (at least 6 months) to make a calm, well-considered decision. Was it Gleason 3+4 or 4+3? What percent of the biopsy cores were positive? It makes a difference in which therapy is most appropriate for you.

It's also a good idea to get Epstein's lab at Johns Hopkins to confirm your biopsy results. He wrote the book. Just tell your urologist to send him the slides (it costs $250).

Appropriate therapies include surgery, low dose rate brachytherapy, high dose rate brachytherapy (monotherapy), and SBRT. You have to meet with experts in each of those. Where are you located? I and others may know of experts in your area.

LuJuice profile image
LuJuice in reply toTall_Allen

Thank you so very much! I am located at State College Area in Pennsylvania by Penn State University. The report I receive has it in segments A,B,C,D,E,F,G,H. Some have 3+4 (A,B,E) 4+3 (B,D) F,G, H Benign Prostate Tissue. I’m having a little hard time determining the percentages. I’m trying to educate myself as much and as soon as I can.

Tall_Allen profile image
Tall_Allen in reply toLuJuice

No rush. Ok - that tells me what you need to know. Your highest Gleason score is 4+3 and 5 of 8 cores (63%) have cancer. That puts you in a category often called "unfavorable intermediate risk." That means that there is a good chance of extracapsular extension (66%), which means that surgery might have a hard time getting it all. Brachytherapy with external beam radiation has very high cure rates (10 year PSA recurrence-free survival of 92%) for men in your situation:

pcnrv.blogspot.com/2017/05/...

I suggest you talk to Gregory Merrick at Wheeling Hospital in West Virginia. He is one of the country's foremost experts in this type of therapy.

You can talk to Alvaro Martinez in Detroit about HDR brachytherapy (another kind of brachytherapy where nothing is left inside). For SBRT, the closest expert I know would be Kevin Stephans at Cleveland Clinic.

Here are questions to ask experts at each of these therapies:

pcnrv.blogspot.com/2017/12/...

pcnrv.blogspot.com/2017/12/...

pcnrv.blogspot.com/2017/12/...

pcnrv.blogspot.com/2017/12/...

pcnrv.blogspot.com/2017/12/...

Here are a couple of articles about finding and dealing with doctors:

pcnrv.blogspot.com/2017/12/...

pcnrv.blogspot.com/2017/12/...

Take your time - if you do you will be prepared to make a decision that's right for you.

Schwah profile image
Schwah in reply toTall_Allen

Listen to Tall Allen. He’s incredibly knowledgeable and kind enough to share that knowledge.

Schwah.

glenf profile image
glenf

One month is NOT long enough for you to investigate all of your options! Take your time and look at every option available. Read books on the subject. Search on the internet. I did and I ultimately chose proton radiation back in 2011.

LuJuice profile image
LuJuice in reply toglenf

How has that worked for you?

glenf profile image
glenf

I had PSA of 5.8 and Gleason of hard 7, and my PSA has been 0.3 for the past several years. Yes, I would do it again!

LuJuice profile image
LuJuice in reply toglenf

Were you able to regain sexual activity and urinary normality

If CT and bone scans are clear, implying containment within the prostate, you might want to consider HIFU. Research it.

Beermaker profile image
Beermaker

Your story is very similar to mine. Slow rise in PSA to 5.4, referral to Uro, his DRE was positive. After trying antibiotics, PSA 6.2. Biopsy showed all 6 cores positive. I asked the Uro about time frame, he said 2 months was ok. He was a seeds specialist, and said he would not recommend that therapy. I talked to a good robotic surgeon, and a good radiotherapy specialist. Talked with a very good specialist at UCLA. Read a lot. Went the surgery route. Lost sex ability, but all else was good. Recovered my urinary continence very quickly. (Do your kegels!!) Oh, this was almost 7 years ago, have been on/off vacation (it went poorly) and am now PSA <0.1. ADT for almost all of the 7 years (started it right after surgery) and now Xtandi for about a year along with the ADT. Doing 2 pills a day has been better for SEs than 4 or 3. YMMV

Take some time. Study. Get multiple inputs. Good luck!!

j-o-h-n profile image
j-o-h-n

S L O W D O W N.... don't get all juiced up....

Good Luck and Good Health.

j-o-h-n Wednesday 10/03/2018 6:28 PM EDT

LuJuice profile image
LuJuice

I have met with all my medical prerequisite. Had CT Scan, MRI and Bone Scan. I am happy to inform they came out good. Has not spread and my urologist and my oncologist ( whom I’ve met with and interviewed for hours) have given me very care and attention. I have come down to two options. Nerve Sparing Robotic Surgery or Seeds and internal and external radiation with hormone decreasing injection. I was torn between both because both sounded quite promising. After a long self reflection, I have decided with the Surgery. Have a great urologist (as well as a great oncologist) but I believe after careful consideration I believe it’s best for me. I am going through Pre-Surgery and I will have surgery on Dec 6 2018. (Please wish me well). At first I was worried about sex and urination, but now all I think about is having a successful surgery. All those things are secondary to me now. I just want, hope and pray to be cancer free. I hope everyone here does well with your desease. We are all in it together.

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