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recently diagnosed

Roger Patel
Posts: 1
Joined: Mar 2010

Hi, my name is Roger....I have just been recently diagnosed with prostate cancer couple days ago in its early stage. I am 53 yrs old and my psa was 7.3, with a gleason score of 6. The doctor gave me three options of either radiation, surgery, or brachytheraphy. I was just wondering if people had any feedback/suggestions for me, anything would help. I just want to know what other people in the situation have gone through for insight for myself and a peace of mind. Im also going for a second opinion, any questions i should ask the doctor that can help me out in the long run with minimal side affects?

I was also just researching prostate cancer and came accross an option for treatment called HIFU...does anyone have any information about this at all???

Thanks,
Roger

Trew
Posts: 891
Joined: Jan 2010

Roger, you have another very good option: Proton Therapy.

I would highly enouage you to look up: Proton Therapy Loma Linda

Those 4 words together will pull up the web site. there is a contact number to call or you can email and they will send you a DVD and book on one of the easiest treatments for prostate cancer going right now.

Ralphie62
Posts: 47
Joined: Feb 2010

Roger, if you search HIFU on the first page it will direct you to our previos threads. If you send HIFU gal a message, she has a ton of info and is a big fan. We are looking into it, as well as proton therapy. We are interviewing for proton in Fla, and Ralphie may be the next proton boy on the block..........whatever treatment we go for, we are going to post re: our experience and recovery for everyone. The threads with people's personal logs has really impacted us.....Good luck...explore all options: you'll know what's best for you when you find it. Best wishes!!!Ralphie and wife

hopeful and opt...
Posts: 1278
Joined: Apr 2009

Welcome to the club that no one wants to join. I know that you are going thru shock and all kinds of negative emotions like most if not all of us have, but be positive, research and these emotions will subside in the next month or two. Remember that prostate cancer is a disease that progresses very slowly so for the most part you are in no rush to make a decision, but keep busy.

Here are some questions you can answer for us, so we can help you make a better choice.

How many cores were taken
How many were positive, what was the involvement of each positive core.
Have you received a second opinion on your biopsy so that you are not under or over treated
What is your geographic location

Ira
Active Surveillance at UCLA
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
Reaching one year aniversity of diagnosis

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

You can see many posts from me in this discussion board. I had da vinci, am doing fine and was very happy with my choice. My first PSA test was a 0 so technically I am now cancer free. Here are my stats plus a nice list of good reading to help you through this process:

52 years old
PSA 9/09 7.25
PSA 10/09 6.125
Diagnosis confirmed Oct 27, 2009
8 Needle Biopsy = 5 clear , 3 postive
<20%, 10%, 10%
Gleason Score (3+3) 6 in all positive cores
11/09 Second Opinion on Biopsy slides from Dr. Koch
(4+3) = 7 5%
(3+4) = 7 10%
(3+4) = 7 10%
Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined
da Vinci 12/29/09 - Dr. Hollensbee & Scott
Post Surgery Pathology:
Prostate size 5 x 4 x 3.5 cm Weight: 27 g
Gleason: Changed to (3+4) = 7
Primary Pattern 3, 80%
Secondary Pattern 4, 18%
Tertiary Pattern 5, 2%
Tumor Quantitation:
Greatest Dimension, Largest tumor focus: 19 mm
Additional Dimension 18 x 15 mm
Location, largest tumor focus: Right posterior quadrant
Multifocality: Yes
Greatest dimension second largest focus 10 mm
Location: second largest focus: Left Posterior quadrant
Extraprostatic extension: Yes
If yes, focal or non-focal: Nonfocal
If yes: location(s) right and left antero-lateral
Seminal vesicle invasion: No
Cancer at surgical margin: No
If no, closest distance with location: less than 1 mm, right posterior quadrant
Apex involvement: No
Bladder involvement: NO
Lymph-vascular invasion: No
Perineural invasion: Yes
Lymph nodes: 9 from right pelvic 0/9 positive
Stage: pT3a, pNo, pMX
All nerves sparred - found two additional pudendal arteries

FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE

Recommend-Guide to Surviving Prostate Cancer-Second Edition
Dr Patrick Walsh
Recommend-The First Year Prostate Cancer-An Essential Guide for the Newly Diagnosed
Chris Lukas
Recommend-Saving Your Sex Life-A guide for Men with Prostate Cancer
Dr. John Mulhall
Prostate Cancer Meet The Proton Beam-Apatient's Experience
Fuller Jones
Recommend-You Can Beat Protate Cancer and you do nto need surgery to do it
Robert J. Marckini
Recommend-Surviving Protate Cancer without Surgery-The New Gold Standard that save your life and life style
Dr Michael J. Dattoli
Conquer Prostate Cancer
Rabbi Ed Weinsberg
Recommend-Eat to Beat Prostate Cancer Cookbook
Ricketts

Comprehensive Book list on Prostate Cancer - http://www.wellnessbooks.com/bookstore/

http://www.havasupaitribe.com/waterfalls.html

Randy In Indy

zakpaga
Posts: 66
Joined: Jan 2010

Dear all,

I have recently been diagnosed with Pca and I am going through the same confusions as most of people at the beginning of this journey.
I am 53 years old and had a PSA test in December on the recommendation of my Gastro. It was 10.7 (probably an error). He advised me to see the urologist who repeated the test and three weeks later, it was 4.7. By the way, I had a PSA in August 09 with a reading of 3.07.

I did the biopsy and 5 of the 12 cores came positive (3 with Gleason 6 and 2 with Gleason(3+4)). I met several doctors for second and third opinions including Dr. Samadi for surgery. I am leaning towards surgery but still have to make the final decison.

I found this discussion board very useful in many ways.

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

Sad to find out that you have joined the club.

There are so many choices for treating prostate cancer, each with its own success rates and risks depending on the stage and aggressiveness of your cancer, your physical condition and age... and the skills of your surgeon or other healthcare provider. While pondering these choices it seems that so many of us have thought about the potential of: incontinence, erectile dysfunction and a permanent cure.

Ultimately you have to make the decision that's right for you and your specific situation, but have a frank discussion with your doctor. It's the time to be really honest with him/her and with your own feelings.

By the way, my PSA dipped too after the initial test result that started my journey. I opted for surgery because I just wanted the cancer out. My logic (right or wrong) was that the cancer won't have a home to return to if I just got rid of the prostate. I'm happy I did because it was the right decision for me.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Must have missed my screen name and should have been Luckyman1 or Luckyman3....I chose robotic and just ask me at day 65 or 6..post surgery with no detectable PSA and fully continent, and no ED problems with Viagra...am I happy....OH YES!

Randy in Indy

the.wife
Posts: 20
Joined: Oct 2009

Hi Roger,

I too, am looking into HIFU as my husband was just diagnosed, I found a great cancer forum today that has a bunch of guys who have had it done, you should read there, http://cancerforums.net/about13991-0.html

There's also yananow.com (you are not alone.com), they have some very old HIFU guys and some had problems, some did great, looks like it depends on the year it was done, how experienced they were then, as here lately it looks like guys are doing good, but with anything there is a risk, sure looks low with HIFU!

I've also read the 4 threads here that talk about it, lots of real information, worth reading, I just read HIFUgals posts so it doesn't take so long to read.

If I need more info I'll start a thread so she finds us.

See you around!

zakpaga
Posts: 66
Joined: Jan 2010

Luckyman2,

Thanks for welcoming me in this "indesirable" club. Just kidding!!!. I would like to know more about your experience since it has been more than two years that you had your surgery. I presumed that you are completely continent now. What about your sex life?.
Sorry to be so specific but I think thatthe whole purpose of this support group is to learm more from peers.

I had had another intepretation of my biopsy. Three are classified Gleason 3, 1 Gleason (3+4) and 1 Gleason 4+3). The first reading from the lab was 3 cores with Gleason 6 and two cores with Gleason (3+4).
I have had a CT scan of the pelvis and abdomen,a whole bone scan, and a MRI of the prostate which all came back negative.

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

My own experience... I did watchful waiting while trying to determine what other approach I was going to take in beating this cancer. By the way watchful waiting might be the right choice for your treatment providing you have the mental strength to do it and you talk to your doctor about the risks associated with your level of cancer.

I also seriously considered HIFU which is available in Canada (where I live), but decided against it because "the jury is still out" on the long-term effectiveness of it. You must also consider that it is not yet approved in the USA. Here's another reason why I decided against it: You've got to destroy every cancer cell in the prostate, leaving not one behind, or the cancer will come back. I asked myself, "Do you feel lucky?"

You can look at my profile on this site, but I went through laparoscopy surgery to remove my prostate in November 2007.

Incontinence to Continence:
I needed a life jacket and rubber mat in bed the first couple of nights! If I was dreaming that I was peeing... yup, sure enough, I was! I needed to wear pads for six months post-op, gradually reducing from 3 to 1 pad per day. During that transition I had problems with movements like getting in or out of the car... resulting in a squirt... oops!. Do your exercises... it really helps!

Sex Life:
My wife and I enjoyed our first intercourse the very night before my 3 months post-op visit. We were pleasantly surprised to discover that I was able to obtain and to maintain an erection suitable for intercourse without the use of Cialis or Viagra. However, I noticed that I had lost sensation along the shaft of my penis. As a result, it requires much more stimulation for me to reach an orgasm... and that's something that my wife appreciates. (I like to look at the bright side!) Orgasms were weak a few months post-op, but steadily improved to the point that I am extremely pleased today.

One more thing: I wasn't prescibed anything to help with an erection until I noticed things started "going south" about a year after the surgery, only to discover that my ED was most likely caused by a statin (Crestor) that I was prescribed around that time. I got off the Crestor and all indications are that the erectile function is improving again. I will deal with the cholesterol problems through diet and more exercise. I've got my priorities!

hopeful and opt...
Posts: 1278
Joined: Apr 2009

I've heard of Dr. Samadi......he is an experienced first class surgeon.......I saw a video on the internet that he had put out showing robotic surgery. I know that he changed hospitals a year or two ago, which one is he with now?...somehow, I remember that he was with columbia presbyetarium(spelling) and he switched to another hospital in nyc.

By the way I would have second opinion on your biopsy from an expert in the field, Johns hopkins is a good choice.

Ira
so. ca.

active surveillance's picture
active surveillance
Posts: 16
Joined: Mar 2010

My specs are near identical to yours though I am 61. With the advice of 3 urologists I am in a phase of Active Surveillance with intent to cure. PSA test every 3 mo. to check for
rise velocity. It's still real crazy but if they decide your tumor is indolent with
ensuing inevitable biopsies (J. Hopkins criteria is every year) you have research and "chill time" enough for your very personal decision.
ON the other hand if the docs determine with their magical numbers that your velocity is unfavorable it will be time to act... If you have good insurance you may want to avoid
HiFu for the meantime. IMRT is noninvasive with 30-50% patients reporting ED issues.
Also avoid mentioning HIFU on this board and do your own research, Oh My God !
I have great insurance and am getting comfortable with Calypso IMRT, likely for mine.

zakpaga
Posts: 66
Joined: Jan 2010

Thanks all.

It has been a month and half since I learned my diagnostic. I am doing my research and learning more about this disease than I wanted before the journey.

Randy, I am very happy for you that that the surgery went well and you recovered your sex life with Viagra. As I am in the same age group as you, it is very important for me to continue to be sexually active after the treatment for Pca.

Hopeful, Dr samadi is now affiliated with Mount Sinai Hospital. I also met Dr Tewari.
My surgery is scheduled for March 15.

Thank you

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I am certainly happy with my recovery and feel I owe it mostly to my surgeon team...however going into it I really felt due to both my age and athletic background I would recover totally in both areas...was actually surprized it took me 65 days to be continent...although I rarely did the Keggles. I am also glad I removed the prostate with the cancer...slow growing or not...I got it out just in time before breaking through the capsle according to the post op report. Hey I don't feel I was over diagnosed especially due to the difference in biopsy results vs the post op pathology report. It's each persons own decision on how they tackle this beast but one thing is for sure never go into any treatment half heartedly...you have to believe you are doing the best option and actually feel it deep within yourself or you just may be a miserable person on the other side following the treatment.

We will be praying for you and positive thoughts for speedy and complete recovery of course following a total CURE!

SAme goes for you too ROGER!

Randy in Indy

NM
Posts: 214
Joined: Jul 2009

Roger your stats were very similar to mine. I had 6 divisions and all except 1 showed cancer.In 4 of these 5 it was 90% cancer.My doctor also gave me 3 choices as yours did.

I was 52 at the time of my surgery (last Sept.3rd)I chose Davinci and I will tell why I chose this route over others.
1- radiation- might work but if they missed even 1 cancer cell it would return.Sounded like a risk at my age maybe if I was over 60 ok but not at 52.

2-surgery- never had any and I hated the though but I realized if after surgery i still has some cancer I could still have radiation. So I liked the idea of a backup in case and again I was only 52 and I have always liked a backup plan.

3.brachytherapy-this appealed to me but after research it seemed the most risky of all with a high rate of return rate.

Please these are just 1 mans opinions and im no doctor. i read researched and made up own mind which every one of us has to do..

HIFU was not an option as insurance didnt cover and I didnt have the extra money.

So here I am had my second psa test last week and its still 0. I have had no incontinence at all, but and here comes the bad news erections have and are still a problem and viagra does little or nothing.

So I have to ask you the 1 question I asked my wife, is sex more important than me being around and bless her heart she choose my ugly ass being there as long as I could.

I have had improvement on the erection part so maybe I am too impatient and it might return.. Damn I only intended a short post and hope it helps you..you have a tough decision that only you can make so prayers,God bless and good luck whatever you decide Nick

active surveillance's picture
active surveillance
Posts: 16
Joined: Mar 2010

I just read where erections can take up to 3 years to return after surgery... whew
Your wife is wonderful , bless her for sure.
Mine is the same !

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