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Prostate Cancer at 39

Wade39
Posts: 8
Joined: Jan 2006

I was accidentally given a DRE during a physical last year and was just told last week that I have prostate cancer. PSA went from 2.7 to 5.3 in a year, Free PSA was 8%, and the Gleason Score came in at a 3+3+6. Bone Scan was negative, so all the dogs are still in the yard. I'm leaning towards the robotic proceedure, but am having difficulty finding anyone around my age with this problem... Anyone got a similar situation?

03serk's picture
03serk
Posts: 16
Joined: Dec 2005

Sorry about your diagnosis, Wade. You're too damn young for this! Sorry about that accidental DRE, too! Sorry, The visual there just got me. I'm not your age(53) but had similar circumstances, Gleason 3+3 6 and PSA was 7.4. Bone scan and all that were clear.

I opted for the robotic laproscopy RLRP and had it done 1/11/06, two weeks ago at Tulane Univ. in N.O., LA. I understand the healing time (on outside) is much less. The insides all have the same thing done so healing there is probably the same. I can't compare it to Open surgery cause I didn't have that but I really feel good other than tired from lack of sleep. When going to remove Catheter, Tests showed I had a slight leak in resection so I have to keep cath 1 more week.

I just wanted you to know to research and make the decision that's right for you and your family. I wouldn't discount RLRP because I did have good experiences with it, if you can call major surgery good. I hope you find someone closer to your age to respond to you and best wishes and prayers for your upcoming experience.

Wade39
Posts: 8
Joined: Jan 2006

I read what the 03SERK stood for in another message and it stuck in my mind. I'm suprised that you were the one to reply. I've got a 99 Road King Classic, so I guess I'll have to change my screen name to 99FLHRCI.

I work in the aerospace industry doing electronic repairs,calibration, etc.. and I was thinking about what it takes to have a large aircraft go down. Typically, they have to have "a series of unfortunate events". That too, has stuck in my mind lately and I feel a bit off about things.
Neither of my doctors have diagnosed this at my age before, my primary even asked me last week why we even started looking for this. It was truly a series of events that without him doing followups, requesting blood tests that typically aren't required, etc.. I don't find out this early and have the chance to get it taken care of. Had I waited until they are scheduled to do the tests it all may have been too late here. I don't think they even start looking for PSA's till 45 or 50, and I couldn't guess what mine would have been in another 6-10 years since it doubled in 1.

03serk's picture
03serk
Posts: 16
Joined: Dec 2005

Wade,

Kindred spirit,eh! Ride on Bro. I guess the "series of unfortunate events" happened to both of us. Mine is mostly lifestyle or bad habits (and we'll leave it at that) that got me here but I've read webpages of Preachers and they got "Bit By the Beast" too, sooooo...

I'm having a hard time getting in your shoes cause at 53, I thought I was young for this. The life changes that everyone tells me about haven't hit me yet. I'm only 2 weeks post surgery and still in a catheter. I hope I can handle them when they get here. At 39 you have a lot more time, not to put of the inevitable but to go on with your life of the unknown.

Have you made a decision yet about what type of surgery you are having and where, when? You are very fortunate to have found out early and you'll get through this fine. Have Faith and be confident in your decision and we are all praying for you.

Keep The Shiny Side Up!

Vic

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Hi Wade,

Although I was not as young when I had my surgery (58) I, like Vic, concur that the pain during recovery was not bad. At the time of my surgery the robotics was in it's infancy, so I elected to have the conventional, incision from below navel to pubic area, surgery. I spent two nites in Hosp. and then went home. Cath out in 10 days and back to work (management) in less than a month.

Recovery for me has been TOTAL with no adverse side-effects. Shooting blanks but sensation is as good as ever. I am 5 years post op and PSA still is <0.10. I had surgery at Vanderbilt Clinic in Nashville by Dr. J. Smith. I thank God for giving him the talents he did every day.

My suggestions are:
1. Get a second opinion
2. Research the Options and possible side-effects
3. Select the surgeon you are completely comfortable with.
4. Maintain a positive attitude.
5. ASK Questions of your physician and on this site.

Best of luck,

Roger
p.s. Post your questions or e-mail me direct.

pamk
Posts: 1
Joined: Feb 2006

Hello, I am reading this because at 58 my significant other has been diagnosed with prostate cancer just today I am wondering if anyone here has heard of or knows anyone whom has tried the HIFU in Canada ? After spending all day on the internet that is an option we are considering although the surgery and/or the radiation pellets are being considered any words from anyone here will be very much appreciated unfortunatley now in this club from Seattle

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Pamk,

I'm sorry to hear of your sig. other's diagnosis. I was diagnosed at 58 and am still cancer free after 5 years. Also, I have no side-effects of the surgery. I am not familiar with HIFU. Perhaps it is a canadian thing, since I live in the US.

Please, please have your friend get a second opinion. No two men are the same and subsequently results are not. I just read a posting by a man that had Rob. surgery and he had complications. I have also read postings where the procedure went well. A close friend of mine also had Rob sur and his recovery did not go quite as well as mine from the conventional open surgery.

As you will discover in reading the postings, most of those electing surgery have done so because they want to (hopefully) be completely rid of the Cancer. They obviously felt this was the best way to attempt that.

Please feel free to e-mail me from this site with any additional questions. Best of luck on you two making the decision on which type of treatment you choose to have done.

Roger

jimpi
Posts: 2
Joined: Jan 2006

Jimpi
Re.diagnosis at 39 :I am 52 (young).Busy athletic ,Psa level jumped a point in one year,then diagnosed.with pc.
Had robotic nerve sparring surgery at Cleveland Clinic,Dr Kaouk,1/6/06.Psa levels one month later 0.Back to work 2/6/06 (Constuction.)
Watched my mother (7 kids)suffer with cancer decided to be pro-active.Beat asthma ,at 19 .Give it everything you have and say your prayers.
The right decision for me .No problems with ED.Continence way ahead of schedule.
Went into surgery as if I were training for athletic event ,physically ,mentally and spiritualy.Stay positive .Good Luck.
Jimpi.

Winchef's picture
Winchef
Posts: 13
Joined: Jun 2009

My nextdoor neighbor had HIFU and a year later his PSA was back with a vengence. He also tried cryogenic treatment and again the cancer reared it's ugly head. He finally ended up having a RP and wanted everything removed because his brother who went through the same thing ended up with lung and bone cancer later on. Hope this helps. Good luck. Will keep you in my prayers.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Thanks for the input on HIFU. I had been researching it some while I wait for my robotic surgery on August 12th. It sounded interesting, talked to a Dr. that does it offshore from the States in either mexico or the bahamas but I decided it wasn't for me since there was not a track record to really look at for success.

Larry

Paten
Posts: 1
Joined: Mar 2006

How was your experience with Dr. Smith and Vandy?

pittsburgh01
Posts: 1
Joined: Jan 2006

I was diagnosed with PC at age 44, which is way to young, but 39 is worse. My psa was 8 and Gleason 3+4. I am now 4 weeks past my nerve-sparing RP by Dr.Joel Nelson at UPMC in Pittsburgh. The first thing I would tell you is to make your decision based on ALL the information you can gather and then move forward without looking back. The more research you do the easier this will be. Keep asking questions here. Guys like us will be reading. Best luck.

Wade39
Posts: 8
Joined: Jan 2006

I talked to the Urologist on Thursday and I'm going to head up to University Hospital in Madison. Dr. David Jarrard has the robotic procedure available and I'll be talking with him soon. My wife is 31 and the thoughts of not having anymore kids (I have 1 son, 3 years old) although probably not in our plans anyway took some time to sink in since she was given a definitive "NO" after this happens. I appreciate the replies and the information. I'll get back to this when I have some more scoop. I'm glad to hear that everyone is doing well and hopefully, I'll be able to talk about the day that my tube is coming out. It's just my turn to be the rookie...

bmorris
Posts: 18
Joined: Aug 2004

I thought I was young at 41 when I joined the club in 2004. I chose the radical retropubic surgery after being diagnosed with a gleason 6, psa of 4.2. I was continent after about a month after surgery and now I am able to achieve a full erection with the aid of viagra and cialis. Unfortunately, my psa has started to rise again, 0.9, heading me down the radiation path. All I can say is keep your head up and stay positive --your life is definitely about to change and it's definitely not easy when you and your wife are young.

AuthorUnknown
Posts: 1561
Joined: May 2006

My 1 year anniversary will be coming up--Feb 4. I'm 50. I was comletely continent 7 weeks my tube came out, which was in 18 days. I'm struggling with the ED , but I'm very positiveabout things. I can only echo what has been said, research,research,research and then research some more. This in one club I don't wish anyone membership in.

Billybumps
Posts: 18
Joined: Aug 2003

I was 41 when I was diagnosed in 2003. My PSA was 5.5 and my Gleason was 7 (4+3). I had a radical prostatectomy. The margins were clear and I am still cancer free. I still have not regained the ability to get an erection on my own. Viagra didn't work but the injections do. All in all though, I'm just greatful that it was caught early. My prayers will be with you and your family. God Bless you.

Peter51's picture
Peter51
Posts: 29
Joined: Nov 2004

Wade,
Just a note regarding children after your treatment. I am a family man and have three young children. I'm 51 with a three year old, six and ten. I was told at the time of my surgery that although I would not be able to have children after surgery, I could have some of my seman frozen and stored so that my wife and I could have more children. I opted not to do this but hope you were told the same. If not, do some research and maybe this would be a good option for you. Best of luck in your treatment and recovery.
Peter Cassidy

JLaw725
Posts: 7
Joined: Nov 2005

I'm 44 Initial PSA of 6.1, had Robotic RP 12/20/05. Now cancer free, first PSA last week of 0.0. I chose surgery due to my age and much research, but it's a personal decsion. In regards to children, my wife and I were trying for more, we have 1. We were able to store sperm at a fertility clinic before surgery. I have 6 samples frozen. Soon we will have her OB start inseminating her. I reccomend this option. We had to pay the cost up front, about $400, but now our insurance company has covered it. Sorry you joined us all, but thank GOD you caught it early. God bless you as you walk down the path. Let me know if I can give you any more information from my experience.

Wade39
Posts: 8
Joined: Jan 2006

First of all, thanks to everyone for all the information. It's pretty helpful in getting some type of feel for this after reading what has come about with everyone else.
I made it up to UW yesterday and met with Dr. Jarrard. He said that he thought the robotic procedure was not the route that he wanted to go in my case. He said that he does them both and thought that he needed the ability to feel the surrounding tissue to insure that he was able to get everything removed the first time. Things then went pretty fast. I'm seeing them again on Thursday for a pre-surgery physical and then scheduled to go get it done on Valentine's Day. (The wife was really thrilled about that one..)
UW hospital has been fantastic so far. I was able to get a room for my wife and little boy at a really great rate, there's a water park for him to play in, and a shuttle for her so she won't have to drive around the maze that is Madison. Knowing that things are going to be good for them makes things alot easier for me. My son is too young to know anything about this that would make sense to him, so the only thing he really cares about is being able to swim. It's a big treat and watching him light up about it has made both of us very happy.

Wade39
Posts: 8
Joined: Jan 2006

I forgot to relay this part. I don't have web access at my house, so it may be awhile before I can write anything else. I'll get back here as soon as I can get back to work.
HAPPY VALENTINES DAY!!

Wade39
Posts: 8
Joined: Jan 2006

Sorry for the delay, but I finally got back to work at the end of March. Everything went really well, no complications, side effects, or anything else. Looks like my doc did a fine job cutting and didn't have to take anything that I find important from me, and he said that the preliminary margins are clear.
I'm onto the waiting for the quarterly blood work like alot of other guys now and watching for numbers.
Thanks to all who replied or gave advice. Surgery turned out to be the best option for me. Doc said that after removal the Gleason was readjusted to a 3+4=7 and had invaded nearly 25% of each side.
The only "odd" thing that happened so far was getting a case of Scleritis in my right eye. They tell me that it's an imflammatory disease of the eye and is usually caused from another subdisease in most cases. Typically, arthritis, gout, etc... I started with a half of my right eye turning red like I had gotten something in it, and after a couple days I started to get headaches mostly a stab in the head from that eye. I could move it all around, vision was fine, but when I tried to focus on anything closer than arms length I would get a stabbing pain in the eye.
I took some pills and bought some eye drops, but after day 10 I decided to ask the doc. He diagnosed this which he said was a good thing since untreated it can lead to blindness. I got some steroid drops for it and pop some Ibuprofen once a day and it's pretty much cleared up.
My doc said he didn't think it was related to the surgery, but anything traumatic could have resulted in that. Just wanted to pass it along in case anyone is putting up with a headache and needs to go see the doctor...
Wade

DougW
Posts: 12
Joined: Jun 2009

Resurrecting an old thread. I'm 39 and was just diagnosed with prostate cancer. Doctor said that he thinks I should have surgery within a month to remove the prostate. My insurance is changing July 1, and I don't know anything about the new provider/plan. It is through my wife. She is gonna look into this tomorrow. I do suspect that it is a crappy insurance though. I have no idea what options are out there, and no idea what this will mean for me. Any thoughts would be appreciated. Any ideas on how I can contact wade?

hopeful and opt...
Posts: 1440
Joined: Apr 2009

I'm sorry to hear of your diagnosis. I wonder, what are your scores? Gleason, PSA, how many cores involved, percent involvement, when was the diagnosis? A month sounds pretty fast to me.

Wish you the best.

Ira

DougW
Posts: 12
Joined: Jun 2009

Thanks Ira,

I didn't know what questions to ask when he told me, so don't know too much. They took 12 samples during the biopsy, and I think he said only one contained cancer cells. My PSA prior to the biopsy was 7.7. The biopsy was done June 3, I just found out yesterday. He said that he didn't believe it had spread outside of the prostate, and believes that removing the prostate will get rid of the cancer. I didn't ask about a Gleason score, and he didn't tell me. He said he won't be able to do the surgery as quickly as he thinks it should be done, because he will be out of town. He referred me to the head of Urology at the University of Pittsburgh Medical Center.

hopeful and opt...
Posts: 1440
Joined: Apr 2009

I know that you are probably in shock, like all of us have been-, but you need to be empowered, you need to be your own avocate.

First, get a copy of the pathology report, and any other medical information from your doc. Keep it in a book, and take it with you as you go from place to place to find out information...you need to have this.

Get back to us with the information.

You may have read one of the other threads, that I recently posted on. It very important to get a second opinion of the the pathology of your biopsy by an expert. An expert in your area that I used for my second opinion is J. Epstein, Johns Hopkins. Have your doc,or simply contact his office and have them send the parrafin block to Johns Hopkins for analysis. Second opinions are generally covered.

Now you had your biopsy 6/2. I think that they cannot operate for a couple of months, because of the current prostate condition.

There are support groups run by Us too, and other organizations....there must be a few in your area.......go to them all, read books, etc, etc.

One of twelve cores doesn't sound so bad to me, now I had 2 of 12 cores with less than 5 percent involvement in each which is low, my psa was 2.2. I am on active surveillance. One of the docs that I saw said that I had five weeks to make a decision( I though that I wouldn't make it out of his office)that was three months ago. I'm not saying that you should be on active surveillance, probably you should not be, but I'm saying that you want to have enough information so you feel comfortable with what ever you do.

Ira

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

Hey DougW,
I believe that the urgency may be due to other reasons unrelated to your diagnosis.
Anyway, I am 55 years old and I had an elevated PSA from 3.8 to 4.4 in December 2008. Biopsy in January 2009 2 of 12 samples had cancer, Gleason 3+3. No other symptoms. Samples went to John Hopkins for 2nd opinion.
on May 1 surgery - Radical Robotic Prostatectomy (sp) at John Hopkins. (the urologist does @150 prostate surgeries per year with a 85-87% success rate). I am slowly recovering. Back to work at 5 weeks post surgery. Continue with no urinary control and maybe a trickle of sexual arousal. I realize recovery is slow, inspite of nerve being intact. After you review all your options and assuming no other cancer involvement, surgery is the best option as you are young and healthy otherwise!

DougW
Posts: 12
Joined: Jun 2009

I would have thought that the urgency may have been something to serve the docs interest, but he most likely isn't the one who is gonna do the surgery. He will be out of town, and doesn't think I should wait till he gets back. It appeared as if the first doc he recommended wouldn't be covered by my insurance, and then the same with the second one. He said he would keep looking and find a doc that "does this often" who accepts my insurance.

DougW
Posts: 12
Joined: Jun 2009

I would have thought that the urgency may have been something to serve the docs interest, but he most likely isn't the one who is gonna do the surgery. He will be out of town, and doesn't think I should wait till he gets back. It appeared as if the first doc he recommended wouldn't be covered by my insurance, and then the same with the second one. He said he would keep looking and find a doc that "does this often" who accepts my insurance.

DougW
Posts: 12
Joined: Jun 2009

I would have thought that the urgency may have been something to serve the docs interest, but he most likely isn't the one who is gonna do the surgery. He will be out of town, and doesn't think I should wait till he gets back. It appeared as if the first doc he recommended wouldn't be covered by my insurance, and then the same with the second one. He said he would keep looking and find a doc that "does this often" who accepts my insurance.

DougW
Posts: 12
Joined: Jun 2009

My slides from the biopsy are on the way to Johns Hopkins - in fact they may already be there. My doc, Frank Costa, suggested sending them as soon as he told me I had cancer. Gleason score is 3+3=6. I'm not sure why the doc seems to be in a rush for me to have surgery. He does a lot of these and from what I have learned is well respected. I'm going back to the office on Tuesday and will get a copy of the report then.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

If you only had one core coming back with cancer cells and a score of 6 I don't think you need to rush. I had 5 of 12 cores come back as positive with them all grading as 7. My surgery is set for August 12th. Take your time and do your homework and research.

Larry

hopeful and opt...
Posts: 1440
Joined: Apr 2009

You say that this doc does a lot of surgeries, how many is a lot? Remember that you have only one operation. There are no do overs, so find the best that you can even it it means leaving your area.

analogy: When I was a boy we collected baseball cards and knew the averages of the players. Now that we are in this situation, we check these surgeons out........some are like Babe Ruth...others are minor leaguers (sp).

ON the core that you a 3+3 gleason, what was the involvement?

In my case, one of the docs that I visited told me that I had 5 weeks, (just the time that my prostate was healed and ready for a procedure, radiation in that case)now wasn't that a coincidence, just like in your case.

Ira

kevin mcpadden
Posts: 7
Joined: Jun 2009

Dr. Tewari is all you have to know..!!

DougW
Posts: 12
Joined: Jun 2009

On the 3+3 core the involvement was 5%. (doesn't sound like much to me, but what do I know). The doc I am seeing now has done several thousand of these surgeries. The one I am going to see next has done many more than that.

DougW
Posts: 12
Joined: Jun 2009

I just read the exerpt from a medical study that showed no negative consequences of performing the surgery shortly after the biopsy. Is there a reason to wait, other than taking time to do research?

hopeful and opt...
Posts: 1440
Joined: Apr 2009

I wonder can you provide the site for this study.......thanks.......Research is very important...youhave to live with the results for a long time.......also, your quality of life is generally better while you are waiting.

My numbers are very similar to yours, but I am 66. The doc told me that my cancer is probably indolent, not likely to spread. I am doing active surveillance. I've spoken to a couple of docs about taking the drug , avodart and got mixed answers.

there is a test that you might consider that I took it's an MRI with a transrectal combined with a spectocopy test. the spectroscopy test is considered investigation and is not covered by insurance. It cost me 900.00. The test shows whether or not there is nodule involvement(outside the prostate), how much cancer in the protate, where in the prostate. I had it done at ucla. Some major hospitals offer this test.

DougW
Posts: 12
Joined: Jun 2009

Here is a link to the abstract from the study:
http://linkinghub.elsevier.com/retrieve/pii/S009042950700163X

hopeful and opt...
Posts: 1440
Joined: Apr 2009

I learned something today.

Ira

DougW
Posts: 12
Joined: Jun 2009

I'm going to see Dr. Hrebinko on July 7. The results of the biopsy are:

Prostatic Adenocarcinoma, Gleason score 3+3-6, involving one of two cores (5% of core, linear extent 1.5MM, no perineural invasion).

This was reviewed by the University of Michigan, and they added:

The focus of adenocarcinoms is present at the end of one of the two cores and consists of a crowded to infiltrative group of small round glands with cytologid atypia (nuckear enlargement, variabley prominent nucleoli) and frequent blue mucin. Due to unusally young age of the patient for this diagnosos, we perfomed a cocktail of immunohistochemical stains (p63, cytokeratin K903, AMACR) to suppor the diagnisis. These stains demonstrate strong AMACR reactivity with lack of basil cell expression in atypical glands, supporting the diagnosos.

Any thoughts on all of this?

hopeful and opt...
Posts: 1440
Joined: Apr 2009

Tell us about the doctor that you are seeing? where is the doctor located, how many surgeries,what type surgery? etc.

So as I understand you have 1 core with 5 percent involvement and a 3+3 =6 gleason. I'm not a doc. but it sounds like you are in an early stage, and that you have time to make the right decision for you.

Ira

DougW
Posts: 12
Joined: Jun 2009

Here is a link to his CV:
http://www.upmc.com/Services/Urology/Experts/PhysiciansStaff/Documents/Hrebinko_CV.pdf

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