I'm new here. I was recommended to the site by Jim, who I played golf with today at Little Bennett.
Post NIH Bethesda surgery biopsy:
Adenocarinoma. Gleason 8 (4+4) with tertiary pattern of 5 involving 20% of the left and 5% of the right lobes. pT2c. Perineural invasion present. No definite extracapsular or seminal invasion seen. Margins of resection are free of tumor. Benign prostatic hyperplasia. Weight 64.4 g. Size 5.0x4.0x4.0 cm. 16 lymph nodes removed - all clean. No radiation consultation required
3 month post PSA - Undetectible.
History:
PSA Log- 9.0 2013, 12 2016, 17.7 NIH 2016
Biopsy 2013, 2 cores HGPIN , No cancer
Two known bouts of prostatitus in 2010 & 2016. Not feeling well, fever, chills, Leviquin, enlarged prostate, dull pain, trouble urinating.
Urologist recommended me to clinical trial at NIH specifically for their targeted MRI where they have you in the tube for an hour with a probe/imaging up you butt. They founds two areas that appeared suspicious. NIH biopsy found cancer in those two areas. DiVinci at NIH Bethesda 5/9/17 with Dr Pinto. Removed prostate and 16 lymph nodes. Doctors said DiVinci shut down for 1/2 hr during procedure; they had to pull everything out and call manufacturer. 3 months out usually one pad a day unless golfing then two.
Written by
Steve_P
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Welcome to the group from another Gleason 8! I am sorry that they found a couple of additional cancer spots. The good news is that you have a lot of treatment options. You may want to discuss with your doctors the results from the Stampede trial that came out this June. They found that using a mixture of Lupron and Zytiga (two hormonal therapies) at the same time can extend life. A reference is listed below
My interpretation of Steve's report is that the two spots were inside the prostate and are now gone. It looks like a great outcome to me.
Hi Steve,
It seems like you've won the lottery here. Aggressive cancer (Gleason 8) removed, inflamed prostate (i.e., prostatitis) removed, no evidence of cancer spread. If you're down to one pad a day after only 3 months, you may go on to be completely dry in a year.
Don't let the sexual side effects, if you have them, get you down. I learned that great sex is possible even without an erection.
Yes, that's correct. I have been very fortunate so far but the propensity for recurrence does concern me. I'm considering a stricter diet which I understand may reduce the risk of recurrrance. I have lost 25 lbs since surgery by cutting back and watching what I eat.
I'm not sure about sex without erection. That aspect has been very slow so far. I got a little night wood last night for the first time. They have me on a low dose Viagra to help the blood flow.
Dear Steve, sorry I misread your note. I thought they found two spots after you had your prostate removed, not before the operation. But I am ecstatic that I did misread it. Going from a G8 to where you are now is great! Good luck!
No problem. I see myself as pretty fortunate, at this point, compared to many on this site. It appears to be localized and I got great care without ever showing an insurance card at NIH.
Steve, great to hear you have had a good outcome, so far. How old are you? I had RP in 2011 when I was 52. PSA undetectable since then. Recurrence is a common obsession among us on this forum. I lost 35 lbs, changed my diet and exercise as much as possible to ward off the recurrence bogeyman as much as possible.
I'm 54. It seems diet and exercise make a big difference in recurrence but definitely not a vaccine. I've lost almost 25 lbs. I feel better with less weight and maybe because my body doesn't have to fight the cancer and sick prostate any longer. I think fat and inflammation fuel the cancer
Sounds like you are fighting off recurrence. That's my #1 goal. Any diet or supplement advice is appreciated. Thanks. Steve
Sounds great Steve, I met DiVince a year ago this month. My fear was that DiVince would short circuit and make scramble eggs out of me. I've seen robotic arms go out of control and throw bags around. I was off pads around 4 and a half mnths. It was nice to drive a ball and not pee myself...lol. as for sex, for me, I've have a penetrating erection twice in the last 3 months due to viagra. I dont take anything else in between. Sometimes I wake up with a woody, more like a balsa wood y.lol. Doctor gave me a prescription for Cialas, but haven't filled it. I'm hoping it come back more naturally. Well good heath to you. From Modesto
Thanks. Im looking forward to being done with the pads. As far as erections, I'm hopeful for natural ones, but it doesn't seem to be anywhere close to achieving that yet. Take care.
Stay on it, wife helps me. It's been a year this month and last night first time with natural erection was able to penetrate, progress. Some times Viagra is used.
Yes, I ithink you won the treatment jackpot - Gleason 4+4 with tertiary 5 is very aggressive, but it looks like the MRI found it before it had spread.
Is that "undetectable" less than 0.01 on an ultrasensitive test, or just less than 0.1 (either standard test or actually showing non-zero on ultrasensitive).
Won the treatment jackpot is a good way to put it.
NIH said undetectable since < .02ng/ml by chemilluminescence assay manufactured by Roche Diagnostics performed on the Cobra 600 analyzer - whatever that means.
I realize from this site that an undetectable reading is good news but doesn't mean I'm cured. I'm relatively just starting my journey.
Yes, but a < 0.02ng/ml result puts you in the least likely to have relapse sub-group of men who've had Gleason 8 - it's substantially lower risk than 0.03 even. That's very good news. ncbi.nlm.nih.gov/pubmed/277...
Gleason 8 and higher kill lots of men quite quickly. They are not our grandfather's indolent prostate cancers.
This is a good group to check on now and then. Some good stories and some new potential treatments, western and holistic. You sound like you are on a good path (lymph node involvement or spread beyond the prostate). You didn't mention your age when you were first diagnosed. This along with your gleason score can be an indicator of how aggressive your prostate cancer is considered.
I would say to always keep abreast of new trials and treatment options that you can ask you doctor about. Remember that most doctors gravitate toward their area of expertise and this may not be the right direction for you. You and your health advocate can work together to can decide on a path forward. Your health advocate can be your wife, partner, other family member, a friend, etc. It's always better to have two people in all your consultations. They can take notes and remind you of questions or concerns.
Gleason 8 is definitely higher risk for recurrence. I haven't seen any assessments by age adjusted for Gleason. The youngest men diagnosed usually have high Gleason.
I just want to share some good news. It seems that finally 4 months after surgery I am basically dry and am no longer leaking urine. I am now only wearing a thin shield pad just in case. I was told it takes about 4 months as long as you keep doing your Kegels. This is a big deal for me. Now if I could only get the ED part functioning properly but I understand that can be up to a year. Progress is good.
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