Prostate Cancer Network
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just got biopsy back-and prostatectomy recomended

at first ,was glad to hear gleason score was just at 3+4=7,but than after discussion with Dr Mian realized that score was intermediate risk and being only 58-'cure' was the operative word. One problem,i have read hundreds of horror stories in regard to this procedure and I am leaning towards not doing it. Any opinions or experiences? Thanks

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Hi cards - I am 52 years old and had a prostatectomy operation in May of this year. I actually found the operation no worse than expected. If you decide to go ahead with the operation I would ask your surgeon if he can 'nerve spare' for obvious reasons and also prepare yourself for the incontinence which is tough for the first two months. However none of these should get in your way I was back on my feet within a month, although not back to normal. If this gives you a chance to be cancer free its got to be the right option. Hope this helps - good luck.

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thanks ,very much appreciated--what was your gleason and psa readings? this is where I'm having some issues--what happens if another pathologist reads my biopsy as a 3+3=6 it would have been all for naught--I actually wish my readings were higher so it would force me to act.

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Hi,

My psa was 8.1 and Gleason 4+3 with perennial invasion and extra prostatic spread. I can understand your dilemma - think you need to be guided by the specialists - don't have it if you don't need it but if they say you should then you need to give yourself a chance. If I can be any help I'm here.. take care buddy.

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Hi Cards, I'm sorry about your diagnosis, we've all been there and it is scary.

I was in exactly the same place. Diagnosed in July 2010 at age 44, 3+4=7.

First: Get More Opinions! 2nd, 3rd, 4th. You didn't say your psa or how many cores were cancerous, but with a 3+4 there probably isn't a big rush. The idea of a Cure is great, but maybe you don't need to be cured.

I got 4 opinions, and primarily because of my age, got robotic RP in November. Knowing what I know now, I wish I had waited to treat. Things have changed a lot in 7 years. When my prostate was biopsied post surgery it was revised to be (probably)3+3. Surgery left me pretty incontinent and and didn't get my cancer. I've been through a lot since then.

I'm not trying to scare you, but there is new information and studies coming out every day. Take your time before deciding on your course. At least wait and see how fast your psa doubles.

Good luck, and take care. It's good you found this community, it has been great support for me. Bill

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sorry to hear,you mentioned biopsy post surgery of 3,but than said the surgery didn't get the cancer? did a 3+3 spread over the next few years without your prostate

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Yes, I had reoccurance of my cancer within the year, had salvage radiation in 2012, then reoccurance, then last year 6 mos. of taxotere chemo with Lupron(still on that). I have no sign of cancer now. I don't regret getting treatment, I just wish I had waited 6 months to see if and how fast my psa grew and then getting another biopsy. I was positive in 3 cores, no sign of margins. I got tested at 44 because of family history.

I absolutely agree with ng. Don't ignore it! Stay informed, but don't panic and rush into it. It is amazing how much our options have changed since I was diagnosed. Chemo wasn't offered at all except as last stage treatment. Now it is protocol at earlier stages.

Stay informed!

Take care

Bill

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Cards, IN CAPS!!!!!! THE #1 THING YOU NEED NOT TO DO....., IS IGNORE YOUR CANCER AND NOT DO ANYTHING!!!!! Prostate Cancer or any cancer is not like a cold, IT AIN'T GOING AWAY ON ITS OWN! I have been told (even on this site) that I come across a little harsh) but experience has shown me, doing nothing is the worst thing one can do. I am a 22 year PC survivor, diagnosed at age 52 and am also a facilitator for our local PC Support group. I had radical surgery, followed by 35 radiation treatment a year later, followed by an Orchietomy (testicles removed to stop testosterone which feeds PC) a year later. These follow-up procedures saved my life. Sadly I have seen others who chose NOT to follow accepted procedures and have suffered many more problems and death due to bone, or other cancers. Don't bury your head up your ass and do nothing. It's the worst decision you will ever make. Good Luck.

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I agree, ng.

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ng: You are not being harsh but realistic...I enjoy you comments and hope that others heed your advice and learn from your experience.

I had a RARP 23 months ago (67yo then) after a 4+3, 3+4 biopsy and an OPKO 4K 67% chance of aggressive PC after watching my PSA rise to 6.7 over a 10 year period. Current PSA is undetectable. What tipped me towards the surgery was how anxiety would begin to consume my thoughts if I continued with only WW/AS. I do have mild ED and have tried trimix with satisfactory results.

Keep voicing your experience...flax seed, pomegranate juice (etc) are DANGEROUS!

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badenough:"Keep voicing your experience...flax seed, pomegranate juice (etc) are DANGEROUS!"

I am recently diagnosed with PC, March 2018. T2bN0M0G6 ; sampled 12 spots: 3 Small tumors 0.3, 0.6 and 3.0 mm; both lobes though; Treatment plan is Active Sur. ; I don't know about flax seed but I have started drinking pomegranate juice. Tell me more about why you think pomegranate juice is dangerous.

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I was perhaps too rash issuing that assessment. Give it a try. There are learned articles that present contradictory evidence on the effectiveness of POM. My concern is that it's not used to the exclusion of objective medical information (biopsy, PSA change, MRI's).

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Good Morning Cards: This site was an important support for me earlier this year: both technical and psychological. So after reading your first note and recognizing the name of one of your doctors, here is my take.

First, read and think about the eight replies that precede mine. They reflect experience and, I believe, wisdom. Some of these people also wrote to me and I am forever thankful. My biopsy results this year, after three years of watchful waiting, were similar to yours. Indeed, after a 4:3 and an increase from 1 to 4 suspicious cores, I decided, first, to get a second opinion and paid fior an out-of-network Johns Hopkins review. It came back 3:4, but confirmed (to me) that significant change had occurred. On a second visit to local prostate-specific facility (previoulsly visited for a second opinion after my local urologist recommended treatment of some sort following some slightly rising PSAs over 2-3 years but that still had me in the low 4s), I also asked for an MRI-guided biopsy, which we did. The MRI appeared to confirm probable malignancy, but no apparant break-out from the capsule. Robotic guided radical mastetectomy seemed the most compelling option (I’m now 72 and married to my trophy wife for over 50 years, so we decided that we’d probably be able to make it without sex). The doctor declared the surgery a success, and finding that I was still alive, I did too. BUT the doctor also discovered that the cancer had (surprise!) broken out of the capsule (i.e., continuing to watch and wait for a longer period might have been a bad mistake) though the Gleason scores were revised diwnward to 3-3 (Gleason are only somebody's best guess; remember that!). Two .005 PSAs later, it appears that, for now anyhow, I am clear of prostate cancer, and back to regular follow ups and additional PSAs.

At this point, I am glad we “watched” for a couple of years and only wish that my request for an MRI-guided PSA had been fulfilled 6 months earlier (no resistance once my local urologist found a site (he was not familiar with the process), but I go to Florida in the winter and we ran out of time). With an earlier MRI and PSA, I suspect we’d have gotten rid of the cancer before the break-out.

At this point, I am still leaking a lot despite my daily Kegel exercises, but I think I am experiencing some improvement, with occasional bad days where it’s like Niagara Falls. Indeed, today is (so far) a terrific day and may requre only one diaper change! 🙂 I’m back to traveling, singing, sit-up’s, and bad golf.

In closing, I think you should listen to the doctor you mentioned (he is not a quack or an alarmist), but also to other doctors and your friends on this site. But ultimately, you must make the decisions and live with them. Any treatment will have consequences and no treatment also will have consequences. My waiting on a biopsy until I could get one guided by an MRI could have killed me—it may still do so. But my two-year’s of watching prior to the surgery meant two years of normality: no diapers, loss of fitness, and longer drives on the golf course. I’m glad for them.

My best and good luck. lgpaul

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well after a lot of due dilegance,hospital visits,reading and personal interviews I am heading for prostectomy on Wednesday. Yes ,I'm scared #@!$less of the unkown--will I ever have sex again,will I spend thousands of dollars on diapers,pumps? pills? I'm young, 58, healthy and supposedly 50% of my nerves will be saved (we will see) we are done having kids,my wife is having her own issues with the woman plumbing-so there really wasn't a better time--7 on the gleason. Diagnoses and remedy reiteriated by 3 other sources--I guess being under 60 makes you the ideal prostectomy patient. At this point, 3 months after biopsy I am happy the day is here. I will be glad to share my experiences over the next couple of months....

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Cards, GOOD LUCK!!!!!!!!

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I had the operation 2009 was 3+4 2tc struggled for 4 months with bladder control but was eventally given electrical stimulation which sorted me out.

Psa now 0.006 so still doing ok

Good luck

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>>>

well after a lot of due dilegance,hospital visits,reading and personal interviews I am heading for prostectomy on Wednesday. Yes ,I'm scared #@!$less of the unkown--will I ever have sex again,will I spend thousands of dollars on diapers,pumps? pills?

<<<

You'll spend some money on diapers, but long-term incontinence isn't a common side-effect of surgery.

As for sex:

. . . Your sex life won't be over, but it will change.

Or maybe, if you're not doing penis-in-vagina intercourse, it won't change a whole lot.

I assume that you've spoken to a radiation oncologist, and looked at brachytherapy as an alternative to surgery. If you haven't, you should.

"Nerve-sparing surgery" still leaves lots of men with ED. The surgeons don't like to admit this, and very few of them have real statistics, for their own patients. ED won't end your sex life, but it will force you to adjust it.

A booklist I put together:

inspire.com/groups/us-too-p...

IMHO, every patient should read Mulhall's book "Saving Your Sex Life", _before_ treatment.

. Charles

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Biopsy second opinion info. Our most popular webpage! malecare.org/second-opinion...

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Cards

Currently I am waiting on a second opinion from John Hopkins for biopsy slides to get read. I have been told I am a Gleeson 6, TC1 stage based on my last biopsy findings from last week.

I have been reasearching about a month in anticipation of getting the PC diagnosis. My Urolgolist has be trending me every year via PSA and DRE. Every year there has been a slow and steady rise. F.Y.I I was diagnosed on 10/1/2017.

Here is some things that I have done. I am providing this information so that you can make a knowledgeable decision on your treatment plan. I still haven't made up my mind but I am leaning towards Proton vs Surgery or Active Surveillance. Active surveillance is an option for me but from I have read it is a good option for age 65 and older. I probally shoud and will do some more reasearch on active surveillance but I do not like the thought of doing nothing while the cancer continues grow at 5 to 6 percent a year (estimate from what I read)

My goal is to kill the cancer and have the best quality of life outcomes as possible.

Disclaimer: This information here is not intended to sway you towards any particular treatment plan. It is the extent of my research up until now.

Go to Protonbob.com and check out that site and check out the top ten myths section.

Go to amazon.com and order You Can Beat Prostate And you Don't Need Surgery to Do it or better yet call Florida Proton Center and ask them to send you some information, they will send you this book for free. Authors name Robert J. Marckini.

The Author admits that he is biased towards Proton Therapy treatment because that is what he chose but I think the book does a great job in explaining all of the treatment options, pros and cons. I am leaning towards Proton but I still haven't made up my mind.

Buy book how not to die by Michael Gregger MD, interesting section about flax seeds.

Here are some interesting links

This tool calculates long term survival outcomes but it does not take into account

quality of life after treatment. I have found a couple of clinical studies that show that Proton\Radiation have similar outcomes for long term survival.

From what I have read proton therapy comes out ahead for quality of life factor see decision matrix below link below the nomogram link.

Prediction Tools (you can only select surgery as a treatment option on this link)

mskcc.org/nomograms/prostate, but I think the information about microscopic cells spreading to the lining and lymph nodes is independant.

Decision Matrix quality of life and other factors

for numerous treatment options

books.google.com/books?id=Z...

Another good tool to use based on your risk category. I noticed that Proton only shows up in the low risk category but I have read studies that they are using it for the intermmediate risk category. The applying the right amount of radiation is the key.

pctrf.org/

Henry Ford Cancer Center just came out with the worlds first MRI guided radation guided system, this is not proton but this technology is supposed to be more accurate then other forms of radiation technology

Last but not least is something that I will be investigating today is that I talked a doctor this past Saturday (He was diagnosed with PC 1 year ago, had robotic surgery, incontinence mild issues, sexual potentcy moderate issues, his surgeon had 2000 procedures under his belt)

He read that John Hopkins has something called a Unified decision making committe, I am guessing that they look at your case and then get the opinions of Urologist, Oncologist and other Doctors and then determine the best course of treament plan for you. I still have not verified that this program exists but it would sure be great if there was a program like this.

Anyways I hope this information helps in your decision making process, I have to get ready for my bone scan "Oh Joy" I guess they have to rule out that 1% before I choose my treatment plan.

Test I have already had

I requested a 3T MRI before my biopsy (not standard operating procedure), this actually helped my Urologist find the cancer.

After biopsy came back positive my doctor order a CT scan of the pelvic area and now I

have a bone scan this morning. This protocol is exactly the way Mayo does it from what I read for someone with my initial findings.

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I had the surgery nearly 6 years ago, at age 63, and I'm still cancer-free. My advice would be to go to a surgeon who has tons of experience, and also ask about penile rehab and how they'll help with that. My urologist said I could get the surgery done locally, and I said no, I wanted to go somewhere where they do this all day, every day. He referred me to Vanderbilt. My surgeon, at the time, had performed 3,000 of the procedures. Talking to other men who had it done locally, going to Vandy made a big difference. At 69, I'm having ED problems, but nothing I can't handle, excuse the pun. As far as incontinence goes, I still dribble occasionally, but again, nothing I can't hande. My Gleason was 3+4 from the biopsy, and was revised downward to 3+3 in the path report. I still have no regrets.

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Who was your surgeon at Vanderbilt?

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Dr. Smith. He was head of the department at the time, and I don't know if he's still practicing.

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day 4 into recovery- spent 1/2 day in hospital after 5 hour afternoon operation day before-guess my stiff bladder gave the surgeon some issues-supposedly everything went well still waiting on pathology-cathadar is a non event-only place I have any pain is at larger incision site-starting to get a little concerned but will wait until after weekend for consult-yylenol is the only thing I am on--bowel movements fine--of course big day will be catadar removal-I will keep you posted

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I do not know how to start a subject so I will jump on here. I had an RP July 28 2017. Operation not to bad. This is what I did not do that you should do. Get a second reading of the biopsy. Explore all treatment options. Know what the side effects are. Be ready to have NO nerves if the URO decides they need to come out. That was my HUGE mistake. No nerves means daily vacuum pumping to keep blood flow. Injections to get an erection. Been trying with that for 3 months. Have had 2 decent erections with 25 injections. No pleasurable feeling from your penis to your brain. With no erections you get no blood flow and atrophy set in. If I am wrong with these facts, someone please jump in. I am at the end of my rope.

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Hi cards

Please take your time to make a final stance. My work mate had bad experience going through prostatectomy. I did read and find out that unless you have an expert surgeon who has a 80 or 90 % success rate you are taking a big gamble. Like someone mentioned chemotherapy is a better alternative unless you like me willing to sign a death warrant and wait and see how I progress. Read my post as it might surprise you. Be in touch.

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One week out from davinci prostectomy and back to office job.Slight belly discomfort still,some blood in stool and the whole urination thing feels different-mind you I had a large prostate and cancer-maybe this is what urination is supposed to feel like. I have dribbled a little when pressing down and getting off the coach and sitting for bowel movement. Overall experience as expected ,except the cathadar did not bother me at all,enjoyed not having to get up from bed 3-4 times a night. Waiting for psa check 5 weeks out for any cancer detection.

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Sir...there are other options non invasively. I was in a similar position years ago .... I would not consider the prostatectomy at all at this point.

I have been treating my prostate cancer non invasively with a company overseas for 10 years now....with great success. Original Gleason was 6 ....my recent PSA is .5. Please please I urge you to contact this email address and tell them of your situation: choi@nutrition2000.com ..BEFORE you do anything medically invasive. ..the prostatectomy you mentioned .... including radiation ..or hormone treatment etc....etc.

THEY can help you.!! if you want to speak to me by phone I will be glad to talk to you 440 227-0344.

I am in Ohio

USA

also you can go this other associated website : nutrition2000.com/ and read about the testimonials of men they have helped in the past.

God Bless you Dave

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Cards, I am so sorry you are in this situation. It is very easy to second guess yourself. Here are my stats: 52 years of age upon diagnosis. Gleason (3+4)=7. PSA 5. 12 cores, cancer in six cores bilateral spread. I had two symptoms that made me seek out a urologist. I was getting up multiple times during the night to pee. Not once, not twice, but many times. During the day I would get urgency like you would not believe. I called it a 5 alarm pee that required getting to the bathroom as fast as possible, getting my pants down as fast as possible all the while believing I would not get there in time. 6 months of that was driving me crazy. I got my diagnosis in May 2011. Surgery was in June 2011.

Gleason 3+4=7 is nothing to ignore. My initial staging was T2c. Upon removal, it was T3a. Lucky for me, it did not exceed the margin. Yes, it took me 3 months to learn how to pee, and keep it in when I did not want to. Kegels, kegels, kegals. Do them often. Erections? What are those? I tried every method known to man to resurrect Mr. P. He's dead Jim! May you have better luck!

However, I have been cancer free for 6 and a half years and counting.

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thanks for the response--I keep forgetting--I'm hopefully cancer free now?? a little dribbling is a far cry than the other outcome--like yourself my enlarged prostate along with a 4+3 was causing me pain,forcing me to take 2 different drugs,finding where the bathroom was wherever we went,week flow,burning etcetc-im glad its gone!!! but now just waiting and hoping little johnny comes around--everything else had gone as expected-supposedly saved half my nerves--who really knows? nothing as of yet 2 months in ill start to worry

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I was in the same place and cancelled my RP and did more research, took 8 months but I finally pulled the trigger for the aggressive approach of IMRT and Chemo.

Just started the chemo last week and radiation on 23rd, I’ll post updates as I progress through this crap.

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Thanks. I'm getting a lot more info just by reading you guys' discussions. Thanks to the whole group.

J

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