Newly Diagnosed

[overlook]

Diagnosed 1/21 with 2 of 12 cores 3+4=7 Gleason, 1 core 55%. MRI guided fusion biopsy. I've sent slides to Hopkins for second reading. Today MSK Urologist who did biopsy recommends RP surgery within 3 or four months. Seeing Radiologist next week. Looking for advise and help? Anxious to say the least.

[Tall_Allen]

There are many curative therapies for your favorable intermediate-risk PC. I hope you will investigate them all. Michael Zelefsky at MSK does two of the best - SBRT and low dose rate Brachytherapy (seeds).

[dentaltwin]

I was in similar situation to you (though your age could tilt things one way or another)--had RP at MSKCC 4 months ago--Dr. Touijer. Overall less awful than expected. If you have any questions, fire away.

[overlook in reply to dentaltwin]

Sorry, forgot to mention age. Just turned 65. How is recovery? Did you consider other options? Would you recommend Dr Touijer? Hope you are doing well!

[dentaltwin in reply to overlook]

I'm doing pretty well. I'm 66. My younger brother had an open RP about 6 or 7 years ago--done by Dr. Scardino. I asked for him after my diagnosis, but as it happens he's no longer doing surgery. Touijer came highly recommended--well thought of by the nursing staff, has his name on a load of literature. You should know that in this crowd, practically everyone who has a RP has it done robotically. Touijer seems to prefer non-robotic (though mine was done laparoscopically). I honestly didn't seriously consider other options, and I'll admit it was somewhat of an emotional decision--probably not the way to do it. Firstly, I'm occupationally exposed to radiation (I'm a dentist), and I've had a couple of patients who've been gotten RT for PC, then needed salvage surgery, and had very bad results. That doesn't mean everyone has bad results, but that was definitely a factor for me.

It took me close to 2 months to regain acceptable urinary continence. My brother was significantly quicker--part of that may be that he was close to 15 years younger at the time of surgery. The ED part is a work in progress--it's not great, but hopefully will improve. Can't see myself giving myself penile injections.

You'll spend a fair amount of time in the bowels of the Sidney Kimmel Center on E. 68th Street--certainly not one of the nicer areas of MSKCC, and my followup appointments have been annoying--I don't think I've ever been taken on time, and once they cancelled an appointment after I'd been waiting 1 1/2 hrs. But all in all, not terrible. The nursing staff postop was terrific.

[overlook in reply to dentaltwin]

Thanks for the info. Wishing you a speedy and successful recovery. Would you recommend your Doctor who did surgery? Is he accessible for followup?

[dentaltwin in reply to overlook]

I wouldn't NOT recommend him. Understand that I really have no frame of reference. We'll see over time if I get a recurrence. He's easy enough to talk to, and I didn't feel he was stingy with time during our visits, and answered my questions (though not always consistently, it was no big deal). As I said, followup visits (I've had only 1 after my catheter was pulled)--I had to wait quite a while. Postop I didn't speak to him, but his secretary and nurse were pretty responsive returning my calls. I had a couple of fairly minor problems in the 9 days or so after surgery that I had to call the hospital outside of office hours, and the doc on call was prompt and resolved my questions. Overall I'd say I was treated well.

[bobdc6]

Read this book for an education on treatments and outcomes.

amazon.com/Key-Prostate-Can...

[Jgrabr]

Very similar to your situation, 66, 3+4 Gleason in 2 of 12 and 2 others 3+3. DaVinci surgery by Dr. Vipul Patel in Celebration, FL on11/6/18. I am fully continent and working on erections. Can orgasm though. Results showed cancer confined to prostate and involved 40% of gland. Can't say enough about the doctors or the facility. I am from the NYC area, now living near Daytona Beach. Worked in Manhattan for 5 years. If you don't live in the city, you might consider a much calmer and more accessible facility like this. The process of recovery, dealing with incontinence, and learning to deal with the new conditions your body goes through may come easier. You could rent a place for two months and enjoy the weather, walking, etc without the city chaos. Dr. Patel has performed over 11,000 of these. His program is organized and complete. I've never waited more than 20 minutes in his office. His staff is friendly and accessible. By the way, in addition to kegals, ask about bio feedback physical therapy. It was uncomfortable but helped move the continence issue along more quickly. No pads, I'm dry. I'm back to work almost 5 weeks now. Recovery is a process but improvements come consistently and regularly. Oh, and most importantly, cancer is not the issue anymore and that was my #1 priority. I'll now be able to focus on the other health issues that aging brings. I've been blessed to be where I am!

[Bethpage in reply to Jgrabr]

Jgrabr, my husband has been a patient of Dr. Vipul Patel for 4.5 years, through two surgeries. His first surgery, August 2014, was a simple for BPH because all biopsies since 2003 had been negative, including one in March of 2014. Emerging from post surgical pathology, one 4mm tumor, graded Gleason 3+3, stage, staged pT2C, all margins clean by at least 1mm. Dr. Patel was *certain* that the tumor was contained, advised that PSA would continue to rise a little over time because the surgery was a simple, not a radical. PSA did continue to rise, but just a tiny bit too fast, so in December 2016, an MRI was done which identified a "mass" under the bladder. An MRI guided biopsy was done, 1 of 4 cores was positive, G3+4. Dr. Patel was certain that he could remove the "mass" surgically, so a second surgery was completed in July of 2017. Post surgery, there was no mass, and despite the one positive core (which Dr. Patel dismissed in light of post-surgical path), all pathology for removed prostatic tissue was negative. PSA dropped again, then began to rise, not a lot, but a little and consistently. Husband was sent for Axumin and then for C-11 acetate at Phoenix Molecular Imaging. Scans were both negative. PSA bounced around, both up and down, so in December 2018 husband completed F-18 DCFPyL and 68Ga RM2 at Stanford. The DCFPyL showed uptake in the left prostate bed. Though Dr. Patel has over 13K laparoscopic robotic surgeries under his belt, we have learned the hard way that his expertise begins and ends with surgery. In December 2017, he referred my husband to a MO. The MO recommended ADT and radiation, but Dr. Patel disagreed with him based on the results of the Axumin and C-11 Acetate. With results of the DCFPyL, Dr. Patel again referred my husband back to the MO, who this time, in light of the previous disagreement from Dr. Patel, is moving cautiously. At my husband's "exit" appointment in December 2018, the last time my husband would see Dr. Patel after 4 1/2 years as his patient, Dr. Patel no-showed the appointment. Professional and classy act - NO. Please consult an MO as early as you're willing. It could save you a lot on down the road.

[MBOY1]

Hi Overlook. Sorry about your diagnosis. I am 65 and was diagnosed with similar numbers one year ago. I explored all options and spoke with around 40 men who had been thru all treatments. For what it’s worth I settled on proton beam therapy (28 sessions) in San Diego. I finished 2 weeks ago. While still experiencing some fatigue I have resumed most of my sports activities already. No sexual issues at all so far and some urinary which are common, most,y frequency and flow, not much of a big deal. Agree with Tall Allen that you should take time to explore all options available. The cancer isn’t growing fast.

We are here for you.

[Hidden]

Of course a surgeon recommends RP surgery. Have you had bone and CT scans yet -- that is standard practice to see if it has escaped the prostate. I was steered toward external beam radiation. I chose HIFU instead. You will tend to be directed towards whatever treatment the urologist or practice is familiar and skilled at. Take your time, not something to rush into. Good that you are here collecting advice.