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New info - decision time

somemomojo
Posts: 21
Joined: Jun 2012

Hi again - Am quite new to the board and have only posted once before. I was diagnosed about a week and a half ago and was stunned at the appointment - I didn't process a lot of the info provided and consequently provided some incorrect info here. Here is my situation. 55 years old - relatively healthy - 10 cores sampled - one w/cancer present (11%) - Gleason score 7 (3+4) PSA 7 - stage 2 (as well as I can determine from info online). Have VA insurance so treatment options limited to open RP, robotic ROP, radiation, seeds or hormone therapy. Dr says watchful waiting is option - but w/my family history (father died at 64 from PC) she believes it is the least attractive option.

Discussed open and robotic RP w/surgeon - he was only recently certified for robotic and VA does not have own equipment - uses robot at Roswell Park Cancer Center ONLY 1 day per month. It is booked until January 2013. I'm a big guy (not side show big) and do have some belly fat. Surgeon said it does not happen often, but occasionally once surgery has begun is determined can't safely remove surgically because of restricted access so they stop and patient has option of radiation after he heals) If this happened would there be a chance that the cancer would spread more quickly if it has been exposed to air?

I am interested in knowing how well people have recovered from open RP - particularly w/ re-occurance, incontenance and erectile disfunction. I do not want to do radiation or hormone therapy and both Docs I have spoken to said they don't think either of those options is the best for me.

Thank you all in advance - i am alone in this decision and would REALLY appreciate the input.

Kurt

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Sorry about your condition, But there is hope. The doctor might be right, and watchful waiting. I know by my condition age 58, vietnam veteran, Gleason score 9,4+5 in 7 of 12 and psa 6.8, stage 4, it was a right decision to remove my prostate with open RP. That was four years ago and 2 years ago VA said it was cause by the condition of my service in Vietnam from agent orange. Since your a veteran, where and what service we're you in? As you talk about your weight in the belly, I was too! I think it made my recovery time longer. I had the choice between open RP or robotic. My choice was the correct one, because the monster was out side prostate. This help the doctor get good margin. my recovery was about 3-4 months and incontenance has been a problem since then. In trying to get clean margins, they had to take a lot nerves and muscles in which cause ED. Sex is not the same and will never be again. I have a very loving wife.

You have two choice's, one waiting and worrying or go head remove the prostate by open RP, but saying that you might keep a close EYE on your psa and wait.

There is a lot smart people on this site to help you

Samsungtech1
Posts: 350
Joined: Jan 2011

If only one core is positive I would wAit. You could go along time before you need treatment. If PSA rises you will need another biopsy, but how long u til that happens, who knows.
I chose not to use the VA and went with civilian docs. The ones here, in Hampton Roads, VA told me that they tested and operated on vets all the time. Usually VA is too busy for this. Not sure where you are, but never heard of VA docs saying they would do all of it.

Hate to say this, but you need to start exercising, and change your diet. No matter how it turns out your survival is dependent upon it.

Read the posts to see about the diets offered, and how exercise has helped. Look at it like basic again. Food you do not like, and exercise that is nuts, at the beginning.

Good luck,

Mike

Samsungtech1
Posts: 350
Joined: Jan 2011

If only one core is positive I would wAit. You could go along time before you need treatment. If PSA rises you will need another biopsy, but how long u til that happens, who knows.
I chose not to use the VA and went with civilian docs. The ones here, in Hampton Roads, VA told me that they tested and operated on vets all the time. Usually VA is too busy for this. Not sure where you are, but never heard of VA docs saying they would do all of it.

Hate to say this, but you need to start exercising, and change your diet. No matter how it turns out your survival is dependent upon it.

Read the posts to see about the diets offered, and how exercise has helped. Look at it like basic again. Food you do not like, and exercise that is nuts, at the beginning.

Good luck,

Mike

hopeful and opt...
Posts: 1359
Joined: Apr 2009

Gleason 3+4=7 is a mid-aggressive cancer so active surveillance is not an option at your age.
I strongly recommend that you have a second opinion of the pathology, since determining a Gleason score is very subjective. This is very important in cases of 6 and 7 that involve treatment decision.
You are not specific about your weight. What is your total weight and body mass index. There is a weight limit for proton therapy and also other radiation treatments.
You mention that your doc was just qualified in robotic therapy. Was this thru fellowship training, or a weekend type course? At any rate it takes at least 250 to 300 for a surgeon to be qualified to robotic surgery since there is a step learning curve. In your case there is a surgical complication disadvantage due to weight.
Jan 1 2013 is a long way away. Are there other VA locations that can do a competent job more quickly? Are you able to change providers or self pay?

VascodaGama's picture
VascodaGama
Posts: 1594
Joined: Nov 2010

Kurt

I wonder why you have made a decision in rejecting radiation or hormone therapies.
Surely nobody can assure you that one particular treatment would cure you, however, the decision on a treatment is made according to one’s diagnosis. Rates of success in treatments differ and in some cases certain treatments are not recommended because they would not bring any benefit. Any decision, therefore, should be done after considering rates of success, the risks and side effects and the differences and consequences it will bring to oneself and into the family.

What cause you to go through a biopsy, was it any symptom?
Have you done any image study? Any colour Doppler?

Surgery is usually recommended to contained cases (the whole cancer is found within the prostate gland). However, if any spread exists then radiation got better results. The case is that a spread will cause recurrence and one would need to follow with a salvage treatment, which is usually radiation of confirmed targets (other than prostate gland).
Hormonal therapy does not provide cure but the treatment is administered with the intent in controlling the advance of the cancer and in some cases it has proven success of effectiveness over 20 year period.

I do not know your physio profile but surgery can be done in two incision ways;
The Radical Perineal prostatectomy (RPP), and the Radical Retropubic prostatectomy (RRP).
Both procedures are good but the RRP is preferred for the possibility it gives in the dissection of lymph nodes. RPP is better for patients who are obese.
Here is a link about the differences on the procedures;

http://emedicine.medscape.com/article/447239-overview

Robotic surgery is more limited but not inferior. You need to do researches on all types before deciding. With regards to the side effects, open has lesser probabilities in incontinence.

In this forum you can find in back threads reports of survivors and their experiences post prostatectomy. You can also read the stories of survivors who have chosen other treatments, though with similar diagnosis as that of yours. Here is the link (You Are Not Alone Now);
http://www.yananow.org/choices.htm

Welcome to board.

VGama

somemomojo
Posts: 21
Joined: Jun 2012

I am in an odd position with this. I closed my busniess for 2 months in 1995 to care for my father for the last 2 years of his life. He did of this disease at 64 - diagnosed at 57. I don't want to be negative in this forum - but I did not like what I saw him go through and don't want to go through the same things if I can avoid them.

My Oncologist is a radiologist and she said she believed an RP was probably the best choice for me. I am a worrier by nature and she said she believes that many men like me have a diminished quality of life because they spend too much time worrying if the cancer will return (seeing the prostrate is still there) - and even though she tries to assure her patients that different treatments have similar outcomes worriers tend not to accept this.

I have researched treatment options and do see that my treatment choices do have similar outcomes - but I would feel more confident in a recovery if the prostrate was gone. The surgeon who will do the surgery (if that is the final decision) said that with a open radical I will be in the lowest point of my recovery right after proceedure is done - but with radiation - unpleasant side-effects/complications can and do often occur months or even years into recovery. I am a very goal oriented person and tend to do well if I have the mountain I have to climb right in front of me - I know I will be diligent in trying to make a recovery from surgery as good as I can possiblly make it - but do have concerns that if I experience adverse outcomes father away from the end of any treatment I won't have my game face on quite so vigorously.

I do fear incontenance and erectile disfunction and being divorced and not real happy with single life these potential problems loom very large. I imagine my status as a "good catch" will go down significantly when the BIG C is mentioned. I have 2 beautiful, wonderful teen-aged daughters who mean everything to me. If I have to choose between feeling more confident I will be around to walk them down the asile someday and being a desirable sexual man I'll choose that short walk every time. I don't want to give up these aspects of my life at all - but sometimes life dosen't allow you to choose what thing might have to be left behind. This surly is no picnic I ever wanted to attend - but like the rest all us on here facing these life changing decisions, I must choose. I only hope my decision will be the best one I can make - this sucks...

Again, thank you for the reply - I do appreciate all you shared.

Samsungtech1
Posts: 350
Joined: Jan 2011

Have you tried pressuring the VA? Telling them they are responsible for your survival and waiting until January is not an option? You want to do something go meet with the director of the VA hosp. If they shine you go to the local tv stations and say viet vet neglected again. Younshould get action.
Still not sure why with only one core positive you want to do this. Sure your dad died from it so it is passed on by genetics, maybe. If it is bothering you that much by all means let them take it out. Hopefully the surgery will be successful.

As I posted the other day, you need to start working out. My doc told me before surgery that it was great to work on someone like me. I am 6'2" and weigh 180. That was at the start. Now I weigh 176. He said fat people were always a problem and the surgery was way more difficult. No offense, but you need to get ready for this. What you put into it is what you will get out. You go in fit your recovery time will be minimal. Ask about this with others onthis board

Good luck,

Mike

hopeful and opt...
Posts: 1359
Joined: Apr 2009

"being divorced and not real happy with single life these potential problems loom very large. I imagine my status as a "good catch" will go down significantly when the BIG C is mentioned"

As a single person older than you, the two questions that I get from women are, "Are you breathing" and "Can you drive a car".....prostate cancer is not an issue

There is a very good chance that the cancer that you have is contained within the prostate and very treatable, however as Vasco pointed out there are other diagnstic tests. One is an MRI with a Sprectorscopy which will indicate if there is extra capsular extension, if there are suspecious lesions in one lobe or two, where in the lobe, and stage the cancer.

I suggest that you attend a face to face support group....If you goggle" US TOO" you will probably find one in your area that you can attend.

Beau2
Posts: 246
Joined: Sep 2010

Jeez Ira, I laughed so hard at this comment that I blew my Irish Coffee out my nose! Are you sure your not Carl Reiner?

It'll definitely be a line in a Betty White movie. Maybe Woody Allen can play the PCa survivor.

Thanks for the laugh ... You made my day.

As usual, your advice was spot on.

hopeful and opt...
Posts: 1359
Joined: Apr 2009

Now that's very, very funny .....maybe we can go on the road, if you wipe your nose.

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

This surgery is not for everyone, my doctor expalined to me that before they can do this surgery they perform a pre surgery screening. They are looking at your over all health. Weight is a big factor and some doctors will not perform the surgery if there are weight concerns. I had to go thru a physical at the hospital before surgery. I am 6 foot and weigh around 160 lbs. I am active in my job so I walk a lot on the average of about 4 to 5 miles a day. So my doctor was happy to see this. It helps to be in shape before the surgery because it will slow you down afterward. Your quality of life will change from this surgery. You might want to research other treatment methods. Question is has your doctor ordered a pre surgery screening yet. This surgery left me in tough shape for about 6 months, it took time to get back on my feet. The incontenance and ed vary from person to person. There are exercises you can do for incontenance issues. I have a minor problem with the leaks. The ed is treated with other methods. My doctor has prescribed the Happy pills and they work to soem extent. Now the other area to look at is that of diet, I changed my diet completely and am not missing the western junk food diet at this time. By the way I am also a viet nam vet and I donot give in to a lot of things. For the most part I tackle problems straight on. This so far has been a big problem for me, but I will keep fighting. Take care

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