I was guided to this site by a family member and am grateful to all here and for your inciteful contributions. I am 62 and I was diagnosed with Gleason 6 prostate cancer three weeks ago.
A routine physical with a 5.7 PSA lead me to a urologist, a second PSA of 5.8 two months later, a DRE with no nodules found, a third PSA of 6.0 with otherwise normal bloodwork and a 3T MRI showing a prostate volume of 137 ccs measuring 7.6 x 6.3 x 6.2 cm, with a PSA density of .04 and a PIRADS 4 lesion.
A biopsy of 16 cores showed benign tissue in the Left Lateral Base, Left Base, Right Base, Right Mid, Right Lateral Mid and Left Lateral Apex.
Adenocarcinoma - Right Lat Base <5%, Left Mid 15%, Left Lat Mid 40%, Left Apex 10%, Right Apex 50% and Right Lateral Apex 15%. All with no Perineural or lymphovascular invasion.
ROI - Adenocarcinoma approx 80% of tissue with perineural invasion and no lymphovascular.
Research has left me a mental mess. My urologist and 3 MD friends have suggested prostate removal. I tend to agree with them. I can't stomach the idea of regular MRIs and biopsies only to potential find it has gotten worse and that I should have acted sooner. I feel that the potential side effects of surgery are outweighed by the peace of cancer removal .
Am I jumping the gun? If not, how do I find a vetted DaVinci Robotic surgeon? I feel lost and in fear of making the wrong choice.
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ProgFish
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Welcome and sorry for your diagnosis. Please take a deep breath and calm down. I remember being exactly where you are when my husband was diagnosed 21 years ago. He is still above ground at 78.
You have come to the right place. Lots of help from experts here will be forth coming.
You are "low risk" which means you are still a good candidate for active surveillance. However with the high volume and perineural invasion, probably treatment would be better. But you have plenty of time to decide. It wouldn't be unreasonable to take a year to decide. I took about 9 months and met with 6 specialists before I decided, with a similar diagnosis.
For now, it's best to decide NOT to decide anything.
Here's a good publication to acquaint you with everything you'll have to know:
You should speak with radiation oncologists and explore radiation, which has equal outcomes. You've already gotten the opinion of doctors encouraging surgery (and urologists are surgeons, and thus often prefer surgery). Read up on the side effects and outcomes of surgery, read the experiences here on both surgery and the various forms of radiation, and consult with other doctors. As others here have said, you have a lot of time.
North/Central New Jersey. I have been working with the Robert Wood Johnson/ Barnabas network of doctors and talking with MD friends. All reccomend removal in my case. Meeting with 1st DaVinci surgeon, Dr Dhiren Dave, in 2 weeks for consult. I am aware of great surgical talent in the northeast and will go anywhere to find the best but have a bit of analysis paralysis in everything I do.
Since you're within easy distance of NYC - don't overlook the talent available there, I doubt if there is anywhere in the world with the same concentration of talent at multiple facilities.
Two I'd suggest seeing:
- Memorial Sloan Kettering, based in NYC, has a number of NJ satellite facilities (one in Holmdel NJ right off the GSP I'm familiar with.)
MSK takes a team approach to prostate cancer care - they put together a urologist/surgeon, a radiation-oncologist, and a medical-oncologist. They do extensive testing and then talk about your case. Some people love this approach, it does relieve the patient of having to pick their MDs.
- Columbia/Presbyterian/Weill-Cancer-Center, based at Columbia University, easy commute over the GWB (1st exit off the bridge). There was a well-renowned team at Robert-Wood-Johnson who mostly moved to Columbia/Presbyterian a number of years ago. cuimc.columbia.edu/ - there is a talk being given in about an hour that you might find useful: events.columbia.edu/cal/eve... - it's a ZOOM talk on local resources for prostate-cancer patients.
Some of the very best physicians I've seen are at Columbia. It's well worth the trip for me (from the NJ shore.)
As others have pointed out - your situation isn't dire. You have time to make an informed intelligent decision. There are many options available - research them and then decide, don't be influenced by "gotta get it out" or "no RP after radiation".. both of those are basically wrong.
If you need any local help - I'm in Monmouth County (aka "down the shore.."_) and would be happy to guide you any way I can as to the local prostate scene in this corner of the Garden State.
Thank you for your insights. As I am in the New Brunswick area New York is easily within reach as is any of the Sloan Kettering satellites. Just need to get started.
I decided against MSK. In my case I was looking at Gleason-10, and MSK seemed to have a very relaxed attitude about scheduling my seeing their MDs (appointments more than a month off), and at the time I decided I wanted some immediate attention, so I ended up at Columbia thanks to a local referral from a support group.
I had asked about some of the treatments - some would have required going into NYC for tests/treatments, some could be done at the Holmdel facility.
I ended up pretty much directing my treatment myself - deciding on what MDs I'd be using. My urologists are actually 2, a local guy to do anything like ADT shots (done with) and one at Columbia for serious stuff. My radiation oncologist is local - at the cancer center at NJ Shore University Hospital in Neptune - excellent MD and it was brand new state-of-the-art equipment when I was treated. My medical oncologist was at Columbia, he's very well known/respected in the field. He's since taken a job at Janssen on PCA immunotherapy, but he retained a very limited number of patients in conjunction with Columbia, I was lucky enough to be one of those patients.
I should really point out - on the scale of seriousness for Gleason scores, you're at one end of the spectrum (where some MDs claim it shouldn't be called cancer) and I'm at the other end (rang the bell so to speak.) Your choice of treatments (or even non-treatment) is much wider than mine, and there are lots of people competent to do the treatments. If you want a no-fuss sort of solution (mine was a lot of angst) the MSK one should probably work out just fine for you. It just wasn't for me. Certainly, the RWJ solution might also be quite suitable for you.
I just want to point out that I had my treatment/visits at MSK in Manhattan very recently -- this past, fall and treatment in January. And i had no lag in getting appointments. Was all within two weeks. This might be a change from a couple of years ago, as some other have said they experienced.
Gleason 6 is the mildest prostate cancer. You have lots of choices before you, now more than ever. Take your time, get a 2nd opinion. Talk to as many people as you can for medical expertise and emotional support.
Care to read my profile and abridged Prostate disease story.
This site is a great resource. Take a few deep breaths.
Should you decide to pursue surgery, or at least get a second opinion, Dr Tewari at My Sinai in NYC is one of the most experienced surgeons in the country.
Agree with all our colleagues here. You have time to explore and understand the alternatives and side effects. You are close to NYC. I highly recommend connecting with the network at Memorial Sloan Kettering which is one of the top cancer hospitals. Main campus is in the city but they have an excellent facility in Middletown which should be close to you. They have the best docs and the staff is outstanding throughout. Personally, I am being followed by Dr. Behfar Edhaie who is one of the best for Active Surveillance.
In my decision(Gleason 7), age 64, my Family doc, two Urologists and two MD friends all suggested surgery.Through this site and finally getting to a top RO, I made the decision for radiation and 6 months of ADT.
Could have gone either route, but I am very pleased with my decision and outcome.
I think there are very few medical diagnosis that often times allow two choices-surgery or radiation, we aren’t wired initially for that decision.
The most important damage that can result from surgery is the thereafter lack of urinary continence. Its occurrence is 5% to 20% highly depending on the surgeon's skill and past experience, a gross measure of which is the number of procedures under his/her belt. A good way for determining this is to ask him/her in the face: What is the incidence of total incontinence (more than 2 pads per day) of the men you have already operated. Most surgeons will try to evade answering this tough question by stating general info like the one I gave you or conveniently switching to the number of procedures already done. Worst of all is the one that will respond 0%. It is either a lie or total lack of experience. Will give you a parallel here: If you asked someone how many computer hard disk failures has had witnessed and responds "none" it can be an honest answer from some lucky one that has a limited number of PCs in his work and home. It is definitely a lie coming from someone working at the IT department of a medium to large size company.
>>>. . . A good way for determining this is to ask him/her in the face: What is the incidence of total incontinence (more than 2 pads per day) of the men you have already operated. . . .
>>>
At least in Canada, there's a problem with this:
. . . Most surgeons don't track their own patients, post-surgery.
So the answer you get may be the surgeon's _estimate_, based on mis-remembered conversations with patients.
Many surgeons think that, when they've removed the prostate, their job is done. Follow-up care is somebody else's responsibility.
As others stated with 3+3 you have plenty of time to decide what to do if anything. You do have a very large prostate at 137cc, so in my mind when it does come time to decide on a treatment, RP has to be considered. Are you having flow issues due to BPH?
Sorry you have to be here but welcome. Great advice from everyone here. Take your time to research all your options. I think the most natural reaction is "but I just want it out". At least that was my husband's initial reaction. I wish he had taken time to really explore his options before moving forward. Keep us updated on what you decide, and ask lots of questions.
I was diagnosed with G3+4 about four years ago and had a 152cc prostate. Unlike you, I dealt with troublesome urinary symptoms for several years, urgency, frequency, etc. I visited many doctors including a couple of RO's and I came to the conclusion radiation would very likely make my urinary symptoms worse. I chose RP with a highly skilled and experienced surgeon with the goal of killing two birds with one stone. So far, it looks like I did, just received my latest uPSA results today and still undetectable. 😅 I concur with the others, you have plenty of time to make your fully informed treatment decision.
WOW lots of great responses! Take some comfort in that there have been many down this same path. I went the surgery route and 1.75 years afterwards, all is good. I will watch my PSA tests vigilantly going forward to make sure
The worse part is that first week after RP, having that bag attached to you in a very sensitive area was awkward and painful. But its needed so your body heals. Removing it was very easy and didn't require a trip to see the Doctor.
By the Second / Third week incontinence all but disappeared for me. Others say it took them longer but with Kegel exercises this should go and stay away. Same with Sex life, after a three weeks things started working and really really well with the help of Viagra which again is proabbaly quicker then average. Viagra is so good that even though I didn't need it before, knowing what I know now, I would have used it LOL. I'm serious, I had no idea that its truly a great enhancement for you and your partner.
Maybe it helped that I was 64 and in great physical shape. Plus I had a great surgeon (Pavolivich - Johns Hopkins). My post Autopsy revealed a Gleason Score of 5+4 and the lymph nodes were negative.
Unfortunately today, no pre-test exists determining if the PCa has or has not truly been contained or escaped, thus in all treatments, we keep getting PSA tests going forward for a significant time. Maybe someday they will have a 99% reliable upfront test which will make the going forward treatment decision easier.
You see if we only knew that some of the PCa escaped or was not going to be all removed with the RP procedure, then heck yeah bring on the long drawn out expensive radiation and drug therapies etc. This is all just my opinion...
Hi ProgFish. I suggest you forget your urologist and MD friends, as well-meaning as they may be, and get to a cancer specific institution like MD Anderson. I learned that my urologist was incorrect on several counts and am sure I’m doing better for making the change.
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Treatment Options
Active surveillance has ended after one year. RP now recommended.
Gleason score change from 3+4 to 3+3 with perineural invasion noted under Active Surveillance 
Advice - Surgery or Radiation?
