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I'm a newbie to PC

dreamer574's picture
dreamer574
Posts: 4
Joined: Mar 2010

This whole thing is pretty overwhelming and sort of knocked me back on my heels.I've kind of been on an emotional roller coaster between denial and devistation. Anybody else in their early 50's who's dealing with their PC care to talk and help me gain some perspective?

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

I was diagnosed at age 54 and am 7 months post surgery. Would be more then willing to chat with you. Shoot me an email at lewvino@yahoo.com and we can see when will work for both of us. Can relate to that knocked back feeling!

Larry (Chattanooga, Tn area)

Swingshiftworker
Posts: 634
Joined: Mar 2010

I'm 59 and was diagnosed 2 months ago. I have an early stage PCa, which I assume you have too.

There's a overwhelming amount of information about treatment alternatives out there and, as an early stage PCa patient, all of the treatments are available to you. However, the choices change and become more limited as your cancer advances, but "fortunately" our cancer is one of those that progresses slowly and that can be regularly monitored w/PSA tests and biopsies, which is what makes "active surveillance" before treatment a reasonable approach.

Read all you can and talk to all of the people w/PCa or who know about PCa that you can directly or via the Net. Try to sort through the inherent biases of the various sources of information -- eg., surgeons recommend surgery, radiologists recommend radiation and satisfied patients (regardless of the treatment) recommend the treatment they received (whatever it was). Regarding patient reports, don't rely JUST on reported SUCCESSES -- all of them will be glowing -- but look also at reports of similar treatments that went BADLY. You can find such comparisons right here on this forum.

Just remember that only YOU can make the RIGHT treatment choice for YOU. Quality of life issues (side effects) are the main things that distinguish the various treatment options and REMEMBER that you don't have to elect ANY treatment until it is medically necessary to take action. Don't opt for treatment prematurely out of FEAR, which many men do because they just want to "get rid" of the disease ASAP. Elect a treatment only if it is really medically necessary for you and make sure that you've given your INFORMED CONSENT to the treatment based on COMPLETE disclosure of ALL of the risks of treatment.

That said, you don't need to obsess about the cancer and can go on w/your daily life without it affecting you very much until you elect to receive treatment. In the case of PCa, the cure can "seem" much worse than the disease, especially if you become impotent and incontinent as a result of treatment, which is why taking your time to select the right treatment for you is SO important.

Just do your research, monitor the course of the disease and take steps necessary to receive the treatment you've selected (eg., by changing medical carriers if possible to get the treatment you want, by choosing the "right" physician or treatment center -- which is CRITICAL, BTW, by raising money if you don't have medical insurance, etc.) before the time comes to actually undergo the treatment.

In the meantime, don't let it stress you out!

Relax, enjoy life (kiss your wife and pet your dog) and take the time to appreciate all of the things in life that you've previously taken for granted too long -- sunrises, sunsets, a walk in the forest, etc. -- which will take your mind off of your disease.

Good luck and best wishes!

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

swingshift gives some good advice as well as others here, Larry, trew, hopeful, bd, the list is extensive. Settle in and read, read, and read more. My path is well documented here...I choose robotic surgery...here's my path in a nutshell.

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

A reading list for you:

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

zakpaga
Posts: 66
Joined: Jan 2010

Dreamer,

You already got excellent advice from those who posted before me. I just want to tell you that I am 52 years old and was diagnosed with PCa in January 2010. Please don't stress yourself too much about your new situation. I know it is easier said than done. Educate your self; try to live life at the fullest and do not take any thing for granted. Get closer to your wife. She will be of good support during your new journey.

I wish you all the best.

Victor

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

Dreamer, I am 47 and was diagnosed in November. I am 2 months post surgery and so far things are going well. You have already been given a lot of great advice from Larry, Randy and the others. These guys really helped me a great deal as I started my own journey.

As Victor said educate yourself, reach out to us if you have specific questions. There are a lot of treatment options out there, don't let anyone sway you into picking a treatment you are not 100% comfortable with; being comfortable with the decision is a huge part of the healing process. Make sure to include your wife in all the discussions as she needs to understand everything you are going through. My e-mail is ghostrdr2112@yahoo.com. If you want to ask me specific questions about my experience with the robotic surgery, let me know.

Take care,
Joe

dreamer574's picture
dreamer574
Posts: 4
Joined: Mar 2010

I must be in my denial stage today. Had to work to make myself come in here and see what posts I might find. I'm glad I did. It's good to know there are those out there who are willing to help me process all this even if in this moment the best I can do is to take some of the advice I got to get out and enjoy some of the things we don't normally take the time for.

Thanks for being there. Hopefully soon I'll muster the strength and courage needed to absorb all the information out there in order to make the best choices.

Hope to talk to you guys again soon
Dave

chitown
Posts: 90
Joined: Mar 2010

Thanks for your sharing here. I am 48 and set for da vinci in july. larry is already sharing your experience and will greatly appreciate learning from your current journey. i want to specicifically know day by day for the first week..not just for my learning but fo my wife and kids. then the 2nd week onwards regarding back to normal life..recovery, pain, activities, emotion, side effects, any gotcha and do and dont..thanks in advance.

i am 48, very fit and healthy otherwise, PSA 2.1 Gleason 3:3, 6 of the 16 cores in biopsy were cancerous...no symptons of any kind before the biopsy..

am waiting 3 more months for surgery so can get my body and mind in top shape.

chitown
Posts: 90
Joined: Mar 2010

Got positive biopsy about a month ago. Am 48, fit and healthy. PSA of 2.1 but a papable nodule motivated the biopsy. Gleason at 3:3. Have decided on da vinci. The question is if I can wait 2-3 months to surgery. Or is there a inherent risk to waiting. Doctors are split on this. Also, looking of surgery and post surgery advise and inspiration..Thanks in advance.

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

You should have no problem waiting the 3 months. I had Gleason 7 and Doc told me I could wait a little (Ended up being about 5 months) But not to go over 1 year.

Inspiration post surgery....Did great. 99.9% Dry when the cath came out and still doing great.
Sex...Had success with Levitra at about day 45 post surgery. Doing well know with Levitra.

Biggest factor is getting a doctor with LOTS of experience.

Larry

chitown
Posts: 90
Joined: Mar 2010

the surgeon i have scheduled in july had done 2600 da vinci and 400 open surgery. are there any do and dont before and after surgery...i like to visualize as much so any details of what went thru your mind and body few days before surgery and then first 1 and 2 week after..and then road to recovery. that will be very helpful. right now i am mental mess :-)

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

2600 DaVinci surgeries for one surgeon seems almost like a production line. DaVinci was approved by the FDA in 2000. There are roughly 250 days a year (M-F not counting holidays) that are considered "work days." Even if the good doctor is a saint and never takes a vacation, 2600 robotic surgeries would be more than one a day every day for the past ten years, not counting the 400-odd open surgeries Larry indicates he has done. Taking into account office visits and non-surgery work this doctor must do, I just can't imagine how he was able to do that many surgeries. The number seems highly inflated to me.

chitown
Posts: 90
Joined: Mar 2010

I believe he is also counting the surgery he has participated in - in his traning and and he trains dozens of doctors now. Also, he began his own training at Henry Ford about 10 years ago. So yes, it sounds inflated but am trying to give him benefit of doubt. Samadi and Vipul Patel claim a similar number.

Where my head is that he had done lots...is that a fair thinking?

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

There are so many studies, statistics, claims, and whatnot about this disease. I would rather have too much information than not enough but it takes awhile to get your head around it all.

My approach is to get as much information as possible, complie a "rack and stack" matrix where I compare pros, cons, and impact on the quality of life factors that are important to me, and then make the best informed decision I can at the time with input from my wife, family, and doctors I trust.

Haven't finished my research yet but am getting closer.

Good luck as you sort through all this.

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

You are using a very methodical approach to determining the treatment choice for your situation and should be an example of what everyone should be doing with their situation...I can tell you many people do not delve into this that way and only take their doctor's advice and just schedule and go blindly into the treatment that they really didn't even choose....I am a very analytical person myself and it's beyond me seeing people blindly going through this process and generally life in that cavalier manner...obviously most people on here are certainly are not that way or they wouldn't have taken the step to even find this forum.

One comment I have while you are painstakenly going through this process with your "rack and stack" matrix is that this BEAST seems to have a mind of its own that treats people differently and who's outcomes may be totally different using the same treatment choices....

It's a befuddling experience to say the least.

Randy in Indy

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Kongo,
Starting in 2000 we can go with 9 years not counting 2010. Lets take an easy estimate of 100 work days a year. That is 150 days less then your estimate. 100 * 9 = 900 days. Doing just 3 surgeries a day gives you 2700. Many surgeons book and perform 4 per day. The day I had my surgery I was the second one scheduled at 10 am. Dr. Smith is chair of the Urology dept at Vanderbilt and could be counting training he took and training that he gives. I even asked Dr. Smith Since Vanderbilt is a teaching hospital if he did the entire surgery. He responded No that students in their last year of medical internship would open and close me but that he is always called in at the critical part of the surgery and takes over controls. Of course you can always call his office and ask for a rough estimate. They are located in Nashville Tn at Vanderbilt University hospital.

Larry

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Thanks for that perspective on the numbers. I hadn't imagined that surgeons were doing multiple procedures a day. My urologist indicated to me that even when everything goes smoothly, it takes 3-4 hours.

hopeful and opt...
Posts: 1316
Joined: Apr 2009

and what is the involvement of each.

Ira

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

Ok, I do not in any way want to scare anyone...but I do have to say something to you that needs to be said. Based on my personal experience with da vinci surgery the wait time after the biopsy is a minimum of 6 weeks according to my surgeon so that complete healing of the prostate from the punctures can take place for several reasons:
1. nothing open on the prostate when they are in there trying to take it out - nothing to ooze or otherwise escape during the removal and be left behind as a positive margin.
2. the swelling from the prostate being punctured in the biopsey so the surgical field will be normal and not stressed in anyway for the removal.

Now, my word of caution when thinking about waiting and again this is coming from my personal case....I waited 70 days from my biopsy or 10 weeks of which was not for any other reason but scheduling and knowing I needed to complete in 2009 to avoid having to come up with a $950 deductable that had already been meet for 2009 and had I choose a date in January I would have had to repay immediately from the surgery.

But the important part here is really none of this but rather the fact...my biopsy was 3+3=6 in all three samples of 8 samples (smaller prostate gland - only 8 samples) with a nodgle on the right side felt in DRE. Post Op pathology put the nodgle less than 1mm....find a metric ruler and 1mm is one tenth of a centimeter which is on rulers....VERY VERY tiny....well that nodgle was less than 1mm from breaking through the prostate gland. Additionally, my gleason changed to 3+4=7 not the biopsy 3+3=6.

So my advice...find someone who is good at reading MRI with Coil or spectroscopy-preferred but more rare...and have that test done to try and determine first if you have a tumor/nodgle and second see if it's broken through the prostate. Then based on that information you may be better equiped with making a decision on the date to plan whatever treatment choice you are going with. In retrospect for myself I feel if I had waited much longer I might be dealing with positive margins and further treatment.

Now in your case you have all samples with cancerous cells from the biopsy...IF you were me....I would look for more testing to determine a. if you had a nodgle/tumor...if it looked close to escaping the prostate outer capsle. Now that is if you were me...I would be doing that...now you are not me...but that is what I would do.....everyone has to make up their own minds about what treatment, tests, healthcare choices you seek or do.

Hope I helped. Here is my stats and path

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

Randy in indy

hopeful and opt...
Posts: 1316
Joined: Apr 2009

however, I notice a very few men, have in fact reported that they had the MRI coil, and none have reported that they have had the spectroscopy along with it.

You are one of the very few who have had an MRI----you listened, but you are an exception....

You would think that men would want to know where they stand, and so would their doctors.

I also notice that there are useless test prescibed for men with low volume prostate cancer, such as the bone scan. The American Urological Association does not recommend for gleasons under 8. There is also a book put out by steven strum md that discusses this along with other things........it is a very detailed book, and needs to be read many times.

Ira

chitown
Posts: 90
Joined: Mar 2010

Randy - I went for my full body bone scan and abdomen/pelvic CT stan on Friday and made the mistake of asking the big tattooed bone scan technician 'how does it look'. He said there is a light shadow in the front ribs..does looks like some trauma and not cancer'. Have been on pins and needles all weekend waiting for Monday to talk to the doc.

On the original topic the waiting part is created also is because the biopsy gave be sepis with e-coli in the blood which put me on life support in ICU for a week and on my last day there I was told that I had cancer. What a double whammy! So the goal is also for body to recover for surgery.

Hope I dont get a third whammy next week!

Please keep me advised..value every word you say

ballab11
Posts: 9
Joined: Apr 2010

Sorry to see you here, but glad you're being proactive. I went the bing, bang, boom, got the diagnosis, did a bit of research and had it removed route. My diagnosis was found purely by hunch. My PSA was 2.3, ( a low number), but was rising over the course of a few years so my doctor sent me to a urologist just to get a second opinion. The urologist sugessted a biopsy and found a 5% malignancy in one sample out of 12 with a Gleason of 3+3. While this is very small, I took it as a sign. I am 54 and was told by my doctors that if I was 10 years older to just leave it alone, but becuase of my young age it was best to have it removed. Yes, there are many treatment options and prostate cancer is the slowest growing and most survivable, however most treatment options, other than removal of the prostate, are experimental in strictly my opinion. I thought about watchful waiting, which was certainly a choice, however the thought of every once in a while thinking, "I have cancer growing inside me", was not something I wanted to deal with. I completely understand others' opinions about options, however I just wanted it out and move on. For me, a radical robotic prostatectomy using the Da Vinci was the only option and if you have the insurance, why not? There are positives and negatives to ALL treatment options, however if you go with the radiation seeds and they don't work you won't be able to have the surgery. There are holistic protocols and a few others, but my choice was to have it removed. My surgeon, Dr. David Samadi of Mount Sinai Hospital is world reknowned for his expertise in the Da Vinci method, his bedside manner and his attention to detail. If I think about his and his ENTIRE staff's attitude I well up with tears.

I had my surgery last Monday evening, was out of the hospital Tuesday afternoon and I'm having my catheter removed tomorrow morning. I am following all of his pre-and post-surgical instructions to a T and so far, everything is as he said it would be. I look forward to regaining my continence and my sexual prowess in a short period of time.

I can't say anything about any other surgeon's capabilities, however Dr. Samadi is the ONLY surgeon that performs the procedure and he has a select surgical team that works with him as well as a research staff. I believe he has a staff of about 100 doctors, nurses and others that work for him alone (clinical and research), but again, Dr. Samadi is the only one who performs the procedure. I suggest you look at his website:

http://www.roboticoncology.com

Even if you choose another surgeon should you go that route the information in "patient instructions" alone is well worth it.

Good Luck

Bruce

Macuto52
Posts: 1
Joined: Apr 2010

My husband is in his 50's and was diagnosted with PC on March 8, 2010. We panicked, I cried a lot and feel desperatated, alone and totally lost. So, you are not alone in this boat!

But, then we took action..... went on Internet... found a lot of information ... learned about any possible treatmet and finally .... we are in the process of choosing which treatment my hubby will take.

We realized that after the diagnostic, there was no way back. So, dont look back, focus in your future... take action and talk to your family, friends and doctors to get the most info possible.

Get several opinions, one or two are not enough. We went from our Family Doctor to the Urologist, to the Radiologist, to the Surgeon ...then, to another Uroligist; inclusive, we got a lot of information from the RCOA clinic in GA that permorm a ProstaRcision (radiation therapy with seed implants). We learned that my husband is not a good candidate for that procedure but the brochure (free: downloaded and/or mailed to you) has an amazing amount of data presented in the the format of Q&A. That will help you a lot to understand the PC, the treatments and their side efects. Use the American Cancer Treatment Decisions Tool, any other reliable information found in Internet and take your time to read, digest and understand it. Grab your biopsy results and make your own table with the data from your Biopsy Needle Cores.

All this work will help you to have a very Big Picture of what is going on with your PC. Also, you will have the necesary knowledge to know what questions to ask to your doctor (very, very important).

Try to get an impartial doctor to help you to understand the best treatment for you, base in your particular case (PSA, GS, Stage, etc.) because, the big problem is that every doctor will want to get you; i.e.: Radiologists will want to do radiation, surgeons will want surgery, etc, etc.

My advice? Ask your doctor to provide his/her patients ICR (Individual Cure Rate)based in your particular case. ICR is "individual", not a range of several persons with different types and stages of cancer. Then, you will see the average of patients treated, LIKE YOU, and their ICR. Finally, ask your doctor what he will do if he/she were in your shoes... look at him/her directly to his/her eyes and trust your intuition.

Hope this will help and remember that the Supreme Being (whoever you beleive in) will not get you more that you can handle.

25299
Posts: 2
Joined: Dec 2009

I have been in remission since 2005, i was 52 when i came down with prostate cancer. Ask all the questions you need to your doctor, if you would like to chat with me yopu can contact me e-mail jamessanders52@yahoo.com. I am on theman to man program with american cancer society in san diego...Jim

dreamer574's picture
dreamer574
Posts: 4
Joined: Mar 2010

It's taken me until now but I've finally mustered up the courage to begin digesting the volulmes of available information so I can make the right PCancer decisions for me and those closest to me.
Thanks for the part that you all played in getting me to this point,
Dave

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

Good luck. I think many (most) would agree that the decision-making process is the worst part.

BRONX52
Posts: 156
Joined: Apr 2010

I WAS DIAGNOSED IN DEC-09 AT AGE 57. HAD DAVINCI IN FEB-2010 AT AGE 58. AND JUST COMPLETED RADIATION THERAPY JUNE-3RD. BELIEVE ME WHEN I SAY YOUR NOT ALONE TRYING TO FIGURE OUT WHICH TREATMENT BEST SUITS YOUR SITUATION. AFTER GETTING OVER THE INITIAL SHOCK OF BEING DIAGNOSED WITH PC, I DECIDED THAT THE ONLY THING I COULD DO WAS ARM MYSELF WITH AS MUCH INFORMATION AS POSSIBLE CONCERNING TREATMENT OPTIONS. LITTLE DID I KNOW THAT THERE WERE SO MANY DIFFERENT TREATMENTS AVAILABLE. I SPOKE TO SEVERAL DOCTORS, SCOURED THE INTERNET,AND DISCUSSED THE OPTIONS WITH MY FAMILY. AFTER SOME SOUL SEARCHING I DECIDED ON DAVINCI. IT WAS THE RIGHT CHOICE FOR ME BUT EACH CASE IS DIFFERENT AND I WOULDN'T SECOND GUESS ANYONES TREATMENT DECISIONS. I WISH YOU WELL IN WHATEVER TREATMENT YOU CHOOSE AND REMEMBER, THERE ARE PLENTY OF PEOPLE HERE ON THIS SITE THAT CAN EXPLAIN DIFFERENT OPTIONS BASED ON THEIR PERSONAL EXPERIENCE. TAKE CARE AND GOOD LUCK !!!! DAN

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

I didn't realize I already posted to this...lol

Trew
Posts: 892
Joined: Jan 2010

This is June 8 so you are into it now. I am so sorry. I have wanted to go back so many times but the way back is absolutely barred, blocked, and baricaded with guards.

Sort of like dark halls ahead- nothing to do but wander down them and see where they lead. So off I go. Like the strangest backpack trip I have ever been on- cliff hangings, river crossings and everything on this one trip. It can get exciting....

But the earlier the PC is caught the easier the trip ahead will be for you. I hope you looked into proton therapy. You owe it to yourself.

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