What to do, what to do.....

[Jgrabr]

Received diagnosis a few weeks ago and have been researching options. I am 65 and actively working, climbing ladders, walking roofs. Incontinence will be a big issue. Need to keep working. Live near Daytona Beach. Urologist has advised surgery with Dr. Vipul Patel in Celebration, FL. Appointment for first visit scheduled for May 30. Also wondering about Proton Beam Therapy in Jacksonville, FL. Father had prostate surgery, the old way...brutal. PSA is 9.2. Biopsy performed 3/21/18, 12 cores. Gleason Scores 2 @ 3+4, one of them at 70%, Pattern 4. Another at 3+3. 3 others suspicious. Second opinion on biopsy being requested. Looking for guidance, the second guessing I'd doing is driving me nuts.

[Hidden]

Hi Jgrabr. I recently went through the decision making process. Although you need to make the decision yourself you need lots of input and consults. I would recommend a second opinion on your biopsy, some genetic testing. a MRI T3 and consults with both urologist and radiation oncologists. I have a friend who is 70 and had surgery. He had a 4+3=7 with PSA 30. He needed some training to get continent again, but did after a couple of months. I picked Proton because of potential side effects of surgery and traditional hospital photon treatment. I had TURP that caused scarring. So I need low dose proton with 48 treatments and hormones which I am now on. The hormones aren't a problem, but I am exercising and keeping up my sexual activity, as recommended. My dad had the photon he is now 93 no complications. I have prior health issues that I have to deal with. Take your time in your research. I have a new book called The Key to Prostate Cancer Scholz that is pretty good. Also Winning the Battle Against Prostate Cancer. Other online sites for advice include Cancer Survivors Network and Healing Well. I think this site and others have been great. Good luck on your journey!

(3+4=7 <15% 2 cores one core 3+3= 6 and another suspect. MD Anderson review of biopsy images upped it to 4+3=7. Genetic Tests: Prolaris results 3.7 were consistent (their rating) for intermediate PC (0n the high side). PTEN genpath test normal. PSA 12.7 May 21, 2018 Jan. 18 PSA 13.7. I have been taking Finaseride for past 15 years it may have suppressed my PSA which MD Anderson considers and UNM Cancer doubles. MRI T3 found a focal lesion within the mid gland extending to adjacent base and apex measures 1.8 cm largest transaxial plane. Lesion involves the peripheral zone of the mid gland anteriorly extending to adjacent apex and base and into the adjacent transition zone.)

[Jgrabr in reply to Hidden]

Thank you so much for letting me into your world. This is a different place in life. I am getting a second opinion to confirm the original. I'll ask for the genetic testing and the MRI. I have an appointment with Vipul Patel, to discuss DaVinci prostate removal. I am also going to pursue Proton based on yours and a lot of other folks experience with it. Sounds like a win win if I can manage working around the schedule and the expense. Company I worked for is changing health insurance company June 1. Hoping they will open that door. I will pick up the books you mentioned as well. Thank you again and I will share what develops as I go through the process.

[MBOY1 in reply to Hidden]

Jgrabr.

Sorry for you’re having to deal with this. To echo reply above, yes you need to do a lot of your own legwork on this unlike most medical issues that arise. I was diagnosed in typical manner, slowly rising PSA over 4 years (to 5.95), referral to a urologist (and remember that many urologists are surgeons). Severe BPH issues led to cystoscope and prostate biopsy with Gleason 3 + 4 stage 1tc, intermediate aggressive in their terms.

I’ve spent 2 months seeing all types of oncologists including medical, radiation and surgical. I also visited 2 different cancer centers which offer proton. I had both genetic testing as well as Oncotype genomic testing. You might discuss with your doctor as many men get to do active surveillance for a period of time thus don’t feel rushed into making a decision while being panicked about having cancer inside them. It usually grows slowly but you need your doctor to tell you that.

The last thing I’ll mention is if there is any way you can network into an unbiased advocate that’ll be your biggest relief. Yours and many of our prostate cancers have comparable outcomes from many types of treatments. I am a perfect candidate for literally any treatment I choose.

I finally settled with proton treatment in San Diego which will begin in November for 28 sessions. Very surprising that this was my final consult and had been told everywhere that I needed 43-45. I chose proton as the treatment that would minimize side effects the most. I should mention that I also need a TURP in August and 6-8 week recovery prior to proton.

Would regular IMRT therapy work as well? Likely it would but I interviewed 30+ men over the last 2 months and while statistically they’re similar anecdotally they don’t seem to be.

That’s my story. We will all be thinking of you.my only advice is “don’t rush your decision “.

[Jgrabr in reply to MBOY1]

Thank you for taking the time and sharing your information. I am pursuing second opinions, testing, and treatments. Tomorrow morning I am meeting with Vipul Patel in Celebration FL for a surgical consult for DaVinci Robotic procedure. Kinda scarey! This site is great and the information being provided is really helping. Thank you!

[rf3rf3]

Like others have said...take the time to decide. Surgery is a good option but so is cyberknife or proton beam. Discuss the downtime and length of probable side effects with each with MULTIPLE docs

[Hidden]

There's a new option that few urologists are familiar with. It has been around for quite a while but only approved in the US in 2015. HIFU. Check it out. I see that the following organization has a surgeon in Florida. I had no problem with incontinence or ED. My cancer was confined to the prostate (ie abdominal CT and bone scans were clear). Treated a year and a half ago at age 66. My PSA remains undetectable. My surgery was in San Francisco, with this organization. It is on you to determine if the surgeon you choose has sufficient experience with this procedure, or with whatever treatment you choose.

hifuprostateservices.com/

Good luck.

[Jgrabr in reply to Hidden]

Thank you for the information. I have reached out to the organization. Watched some videos and it sound interesting, especially the short recovery. You look at HIFU and Proton therapy, they essentially do the same thing using a different medium. Again thank you very much!

[ng27868168]

Sir, whatever you decide to do, DO NOT MAKE THE CHOICE OF DOING NOTHING. You mentioned incontinence being a big issue with you job. Keep this one important fact in mind. IF YOU DO NOTHING, INCONTINENCE WON'T BE A PROBLEM BECAUSE IF AND WHEN THE CANCER LEAVES THE PROSTATE CAPSULE, INCONTINENCE WILL BE THE LEAST OF YOUR ISSUES. Cancer, even prostate cancer is not like a cold, IT AIN'T GOING AWAY AND IT WILL ONLY GET WORSE TO THE POINT WHERE IT WILL KILL YOU. I am not an expert or a doctor, but I am a 77 year old 25 year prostate cancer survivor BECAUSE I TOOK CARE OF IT. I am also a facilitator for our local PC Support Group and sadly I have seen more than a few men who were more worried about keeping their continence and their erection alive and ended up dying a slow painful death because of no action. Am I being a little harsh? Yes sir, I'm trying to save your life. Having PCa at age 65 is a young enough age to have lots of issues, none of them good. Good Luck and be smart.

[AlanMeyer Moderator]

Hello Jgraber,

In my inexpert view, the treatment that has the least impact on work may be low dose rate brachytherapy. In a few hours work the doctors insert about 115 radioactive pellets, called "seeds", into your prostate. The seeds continue radiating for a couple of months before they have done all they're going to do, but if all goes well you would likely leave the hospital the next day or even the same day as the treatment. I didn't have that treatment but did have a similar treatment with "high dose rate" brachytherapy (seed inserted, radiates like crazy, then is repeatedly pulled out and moved to another position.) I had it done on a Thursday and was back at work on Monday - though for me, work involved programming computers, not walking on roofs, and a bathroom was always easy to get to.

Now having said that, I will also point out that the success of any treatment in knocking out the cancer depends heavily on the competence and commitment of the doctor. Dr. Patel is a famous and highly experienced surgeon. If you decide on brachytherapy or other radiation treatment, you want to be sure to get a highly experienced and competent radiation oncologist.

Also, be aware that s**t happens. Even a great doctor can screw up, or your body can respond in an unexpected way, and you might wind up with unexpected side effects. So in addition to a good doctor and a good treatment, a little good luck never hurts.

I wish you the best.

Alan