59 Yr Old recently diagnosed with Pro... - Prostate Cancer N...

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59 Yr Old recently diagnosed with Prostate Cancer, seeking advice on treatment options.

jazz2cool
jazz2cool

Hi, I am 59 years old, married 40 years, two children and three grands. I was diagnosed two days ago with localized Prostate Cancer. My Gleason Score is 6, Prognostic Grade Group 1 on the right side of the prostate. I am trying to educate myself on treatment options. My number one personal value is not to have to live with incontinence (quality of life would be zero for me if I had to wear a diaper the rest of my life). Second value is to avoid ED and loss of sexuality. Some of these symptoms may be unavoidable at least temporarily. Some of you have been through this process and have recommendations. I would appreciate any advice based on your experiences. I live in Central Florida.

27 Replies
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Your story is my story, except I turn 66 in November. My Gleason was a 7 revised to 6 by John's Hopkins. MRI shows the growth is localized. I too live in Central Florida over by Daytona Beach. My urologist recommended I see Dr. Vipul Patel over in Celebration, you might want to check him out. I have the same concerns you do as I am still working at a physically active job. Robotic prostatectomy scheduled for Nov 6. Process to get scheduled started back in March. Sounds like you have some time yet. I've accepted my condition, working on getting in best shape for the operation. Incontinence is my greatest concern. Good luck to you. I'll be posting progress, this is a great place to read up!

I am slightly ahead of you on this journey - Gleason 7 (3+4) on blind biopsy, mpMRI shows tumor on left posterior with possible extracapsular extension. Genomic Decipher test shows an aggressive cancer. I will have RALP in October and it has taken me about 3 months to arrive at this decision. For me, having the cancer removed (I hope) and available for pathology analysis are important. At the same time, I respect everyone's treatment decision. I found it helpful to find a medical oncologist in addition to surgeons and rad onc. Med onc is focused on overall cancer diagnosis and treatment. He is also the one that set up mpMRI and Decipher test - the more you know, the better. These additional tests provide good information if you are considering active surveillance. Keep researching, speaking to others, take advantage of the experience you find here. Good luck and good health.

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So far Jazz with a 3+3 =6, you may not need treatment. My advice is once you get a good idea on your Gleason score with a second opinion and it remains a 3+3=6 you might follow up with a T3-MRI. You don't necessarily need it with a 3+3=6 but if your insurance will cover it it might give you more confidence. The MRI will look for lesions that may have been missed with the biopsy. If you are clear, you will be on the road to Active Surveillance. This is a conservative management approach, for patients with "low-risk" or "favorable-risk" disease, which avoids long-term adverse effects on the patient's quality of life. ncbi.nlm.nih.gov/pubmed/285... I didn't qualify for it, but wanted too. The most conservative active surveillance program is with John Hopkins. If you end up with a higher Gleason, I would also get some genetic testing done to determine how aggressive the cancer is. See what I did below. Good Luck!

68 yr old marathon runner, PSA .12 August 15, 2018, 1.42 June 18, 2018 (Lupron), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid with additional Gleason 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center. T3 MRI 1.8 lesion left side, Negative Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father had PC at age 78 now 93. Neurogenic bladder due to lumbar disk disease and recurrent bladder neck contracture with urinary retention man. 20 years doing catheterizations. Finasteride 5 milligrams daily since 2002.💖

As already said:

. . . With a small Gleason 6 tumor,

. . . . . "active surveillance" may be a reasonable option.

What was your PSA? If you have a PSA history, that would be worth knowing.

. Charles

jazz2cool
jazz2cool in reply to cpcohen

I was PSA of 1.9 in September of 2014. July of 2018 I was 3.4. August was 4.79, but I went back two weeks later and it was closer to 4.3.

cpcohen
cpcohen in reply to jazz2cool

That's a rather low PSA, and suggests that the tumor isn't very large. The PSA doubling time is around 4 years, so it's not fast-growing (= "aggressive", in doctorish).

FWIW, I suggest investigating "active surveillance". You may need treatment eventually, but that doesn't mean that you need treatment _now_.

If "focal therapy" -- destroying the tumor, without removing the prostate -- is available, you might be a good candidate for it. "Focal laser ablation" (FLA) is one acronym that pops up. You'd need someone who does it, and you'd have to figure out how to pay him/her for it.

Take this as a summary, that leaves out a lot:

The good thing about "focal therapy" is that (usually) it doesn't have the intense side-effects of "whole-gland" treatment (prostatectomy, radiation). The bad thing about it, is that its "cure rate" is lower than "whole-gland" treatment. But it may postpone whole-gland treatment by years, even if it's not "curative".

. Charles

jazz2cool
jazz2cool in reply to cpcohen

Thank you. I was wondering what FLA stood for. :) Not covered was implied in the earlier threads. I realize now that I need to start compiling a meaningful list of options. I may have to put it in my mind map software before it is over.

cpcohen
cpcohen in reply to jazz2cool

After the initial shock of diagnosis -- it's prostate CANCER! -- I spent a lot of time studying, and organizing what I was learning. My urologist offered me a spot on his surgery schedule, my wife said "Take it!", and I refused. I didn't want to bias my decision about treatment.

If you have access to a hospital library (since you have a cancer diagnosis, you might qualify), see what they have for PCa "layman's advice" books. Some of those are biased, some are really useful. And some just keep repeating "Ask your doctor for his opinion . . . ".

. charles

jazz2cool
jazz2cool in reply to cpcohen

So I learned I have a Prolaris score of 4.2 which makes my cancer in the more aggressive category. There is only one step above this one in terms of growth rate and risk. I spoke with a surgeon and he recommend treatment (radiation or RALP). Interesting he also recommended dr Patil in Celebration and I happen to be consulting with them now and got the same recommendation from a Florida Hospital employee today. Florida Hospital surgeons gave my Granddaughters life back to her. No decision yet but I think treatment is in my future.

Gleason 6 is not considered aggressive. Both invasive treatments result in ED (half the time) and some incontinence. I would think in your case, and considering your relative youth, active surveillance would be best. I wouldn't go headlong into surgery or radiation--at least with the information you have shared. In my case, I was 67 at diagnosis, with Gleason 3+4. This is semi-aggressive, so, after getting second opinions from a medical oncologist specializing in prostate Ca and a radiation oncologist, I chose "nerve sparing" robot-assisted laparoscopic prostatectomy. It killed any erectile function I had and left me with a temporary incontinence. That was 1.5 years ago. Still have the ED and some minor drips here and there. I don't regret the choice, but surgery can certainly deaden response and even libido. What does your urologist recommend? Anyway, do the research. My urologist gave me a nice book, "100 Questions & Answers About Prostate Cancer," which is excellent. Best wishes. Don't rush into anything.

Well I am 67. Diagnosed at 59. Did watchful waiting for 7 years with only minor changes. When it took off I got brachi and 26 radiation treatments. I am now clear and testing once a year. My testosterone is 3.3. Problems, still have sex drive but difficulty maintaining erection. Always tired, but still able to ride x bike 20 miles daily. The radiation didn’t get to me until after treatment. As far as leakage, I have never worn diaper. I have had close calls but I work hard at holding pee. After sitting in car for long ride I try to plan parking close to restroom. If necessary I carry Gatorade bottle. But diaper, no. Overall, ED seems inevitable, a little pee leakage manageable and the tiredness is a good excuse for a nap. Just don’t sweat the potential issues cause worrying about em is probably worse than the actual issues.

Thanks for your candid reply. Do you feel like you had less options when it finally "took off" vs. taking steps at 59? Are you glad you waited? And did your urologist insist on quarterly PSA checks and yearly biopsy? The yearly biopsy seems excessive. Someone else has expressed concern over that option.

With a Gleason 6, I would actively watch. Doubling time is a key. Test every 6 months and enjoy life until it gets to 12. I know one gentleman whose PSA is 18-24 and has been for over 6 years...he manages it with a strict diet and exercise routine. I unfortunately was a Gleason 7 and my doubling time turned out to be 8 months from initial diagnosis, so I did Proton Beam therapy as my goal was the same as yours, no incontinence and no ED. ED did start to show up around year 5 post Proton and I ended up with a re-occurance that required HIFU treatment at year 7. Lots of treatment options available but none is the best one. Hope you never have to have treatment.

Try these educational courses: coursera.org/learn/prostate... and coursera.org/learn/cancer. They are free.

HIFU is the way to go I am trying to get this for my husband here in UK

I had P.C. 10 years ago, PSA of 7, Gleason score of 7. It was stage 2. I was 52. Had my prostrate surgically removed. PSA at 5 years after surgery ............basically zero.

Surgeon was quite skilled and tried his best to minimize the nerve and blood vessel damage.

Incontinence.............first month.......had to be careful.....wear women's pads. Now...not a problem at all......unless I lean back to get something out of the back seat of my car. Day to day.......no worries........rarely any leaks. As to ED......its hard to say......as I am not sure how hard I would be......as its natural to get ED to some degree, with age. I am married, and use 50 Milligrams of Viagra to get the job done. The orgasm is I guess slightly reduced from the time I was 40.......and of course I shoot blanks (which the wife likes).....and all in all I am satisfied that way. Looking back I am glad its all history. Glad I dealt with it, and had the tests done at age 50. Hope it all works out ok.

12 cores taken. and the 3 on the right side (lateral apex, mid, and base) contained the cancer. One core on the left was pre-cancerous (High Grade PIN). No MRI yet. Since I have been dieting to lose weight I am not sure I am not already where I need to be diet-wise. When you are 1700 cals or less daily and adult male, you are losing 1.5 lbs/week even without much activity, and there is not much wiggle room on what you then eat and maintain protein. I track closely, and am consistently meeting targets for cholesterol, fat, and generally below on sugar and low on protein, and for some reason typically high on Sodium despite never salting anything. I am usually on target for fiber, and under for Potassium. I take a mens' multivitamin which has saw palmetto, and I take vitamin D for a deficiency, Niacin for cholesterol. I take nothing that is known to be hormone reducing yet. I take Beta Sitosterol because it is supposed to be good for inflammation and a friend takes it for his prostate. I am getting a lot of advise to monitor. I also received some very good information from ConsumerMedical which is funded at no cost to me through my health plan. Based on my values I may lean toward active surveillance. My only concern is that this might be my only opportunity to truly become cancer free. Once the cancer spreads your options become more limited. Even Brachy is limited to a certain size prostate. But I am asymptomatic now and almost sure to be symptomatic in terms of adverse side effects the moment I choose any treatment option available to me. Everyone here has had wonderful advice and viewpoints, and I am thankful for all of you.

New information. Just received my Prolaris score, which is 4.2 That makes my cancer in the "more aggressive" category for the lower risk group that I am in. The doctor had the nurse call me to tell me the result and recommend surgery. Not Brachy, not radiation,...surgery. I have my first appointment with an actual surgeon on Wednesday. It is my intent to get a second look at the slides and still not rush into a decision. But I was leaning toward active surveillance and now I at least need to absorb this new information.

You might want to research HIFU. This is the route I took and I know it is available in FL. It is advertised as avoiding the quality of life issues you, and any man, would be concerned with. I had this surgery in 2016 and I have no issues with ED or incontinence. Your mileage may vary. Just find a very qualified practitioner. Good luck with what ever choice you make, it is tough finding yourself in this spot and being forced to make tough choices.

I am 49 yers old (Central Florida Daytona Beach area) and I was also diagnosed with PC in Feb 18 with G6 (1 core 8% of 12), 3T mri found lesion in left apex and mid left side (T2A). Took some time to educate myself and read 5 books, the best 2 books I recommend to everybody before making any decision are "Prostate cancer a new approach to treatment and healing" for introduction and Dr. Patrick Walsh's Guide to Surviving Prostate Cancer for in-depth knowledge. I read many posts on several PC forums, as well have my Dad done radiation treatment 8 years ago. My original decision was AS but since I am self employed, I depend on Obama Care insurance which may change drastically next year due to number of participating insurance companies and services they cover. Do not want to end up without reasonable insurance and PC in the body, so I decided to go with the treatment. There are 2 options that are available for me (covered by insurance): surgery and IGRT. I wish I could do SBRT with Dr. Debra Freeman but she is our of insurance service area. My second choice would be HDR Brachy but Dr. Matthew Biagioli is our of insurance network. I personally do not want to do surgery due to incontinence SE (leaking) and high probability of SRT for cancer located in Apex area. I decided to go with local IGRT facility specializing in PC treatment.

Hi jazz2cool My situation is very similar. I just got done having a robotic radical prostatectomy and am at home recovering. My Urologist indicated to me that given my age, surgery was the best option and that it left me with a multitude of treatment options. While not for everyone, it was the option I chose. Hope this helps.

Thanks!

Just echoing here:. G6 merits AS; second set of eyes to review the biopsy slides; read Scholz; look deep inside yourself to see if you can tolerate AS. Some can't. You need to know if you can. The anxiety may be too much for you. Or being continent and having erections + libido may outweigh the anxiety of yourself and your family. Ultimately only you can decide.

Two weeks after Robotic assisted Laproscopic Prostatectomy surgery I am happy with the results so far. I had two Gleason 6's (3+3) and two Gleason 7's (3+4) lesions. Pathology indicates ZERO metastatic spread. Incontinence gets better every day, now an occasional dribble with an indication from the bladder that it's time to void (using Depends just in case) I will probably switch to just pads in a few weeks . Am almost sleeping thru the night with an occasional dribble (like twice per night) getting me up to void. Now ED is a problem, the little guy has feeling when I "fondle" but so far hasn't sat up yet. I am hopeful!

I recommend to Jazz2cool to do massive research, get a few opinions on treatment, I personally recommend surgery, but you appear to be very early as was I. BUT, my decision was finalized when i was made to understand that the nasty prostate does not die during EBRET or Brachy and can grow new tumors which are then limited to "alternate" treatments.

jazz2cool
jazz2cool in reply to grampie

I had surgery with Dr. Vipul Patel in Dec2018. Absolutely no incontinence and ED is not an issue with a generic Viagra. I had a bit of an erection after two weeks. Didn’t even use my first full bag of pads. The guy has amazing technique and has done more of these than anyone in the world. I was localized on my cancer and my PSA has remained non detectable. I did go to pelvic rehab and use a vacuum erection device daily and viagra 3 days per week for a year. It keeps the tumescence and health of the tissue until nighttime erections resume, which appears to have been this week for me.

i am exactly as you on diagnosis... been on AS for a year now.... good luck....

you are so right i had 3 opinions on my pathologist report all 3 different

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