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Newly Diagnosed

Manh
Posts: 1
Joined: Aug 2014

I am a 50 year old and my urologist has just told me that I have prostate cancer.  I started having the typical symptoms about 4 months ago: frequent need to urinate, difficult to start or maintain urine flow, and pain when urinating and immediately after.  My PSA was 18, my DRE showed enlargement of the prostate.  Biopsy results were positive for CA in 18 of 18 samples, with Gleason score of 9.  I just had a CT scan and bone scan over the last two days to determine the extent/spread of the cancer. 

My doctor has already suggested the best option will be a complete prostectomy, and he is recommending he do it with Da Vinci robot assisted surgery.  He discussed possible side effects such as difficulty urinating (that sounds exactly like what I have now) and possible loss of bladder and bowel control.  He also mentioned that he would most likely remove the nerves to the penis as well rather than try to cut around them just to ensure he removes all of the cancer. 

Has anyone else had a complete prostate removal with this Da Vinci machine?  If so, what has been your experience?  

Also appreciate any advice on what exactly I should be asking my doctor at the next visit when we review the CT and bone scan results to help me make the best informed decision on what to do.  I have been reading extensively about Gleason scores and staging, so I realize that it's probably still too early for the doc to tell me a statistical probability for survival or quality of life.  But at this point, I feel overwhelmed and really don't know what I should be asking to get the information I really need to know.

Thank you for any insight you can provide.

 

 

 

hopeful and opt...
Posts: 2331
Joined: Apr 2009

Dear Manh,

I am sorry that you need to be here with this diagnosis.

A Gleason score of 9 indicates an advanced disease.

With 18 of 18 cores with this Gleason score, the cancer is within the total prostate, and to be honest it is now outside the prostate. So even if the prostate is removed the cancer will still exist.

The side ffects of multiple treatments is cummulative. Having surgery to remove the prostate is redundent, that is you will simply suffer the side effects from surgery and still require other treatment. The only person who will gain from this surgery is the surgeon who will gain financially.

It is imperative that you find a medical oncologist, the best that you can afford to be the lead member of your medcal team. This person is an expert on hormone therapy. During the last few years many high tech drugs have been developed that fight the "beast" The medical oncologist is an expert to administer these drugs.

Where do you live, hopefully one of us posters can recommend a medical oncologist for you.

Sometimes one get radiation (radiation has a wider range outside the prostate than surgery ) in conjuntion with hormone treatment, however sophisticated diagnostic tests to include but not limited to bone and pet scans are required to determine if is an  an option, 

Here is a thread that was done last year that will give you information.http://csn.cancer.org/node/258414

We are here for you

 

VascodaGama's picture
VascodaGama
Posts: 3371
Joined: Nov 2010

Manh

Welcome to the board.

Your description of the diagnosis places your case at a high probability for having metastases. I would say that the PSA and the voluminous cancer are “high” enough to assure detection by the scans. In fact, locating the cancer is the best we could wish from those exams because we could choose the best attack, but (unfortunately) current CT or bone scintigraphy scans are not that good and provide many false negatives.

My first recommendation is for you to abstain from accepting a therapy without knowing the pros & cons of each one. You should get second opinions from various doctors (not just from your present surgeon), read about the benefits, risks and the side effects in each treatment and then discuss with your family about all options (PCa affects everyone in the family).

At 50 years old you got a lot to lose. Prostate cancer and their treatments will be there for a long time and it will affect your present way of living (at work and at home). The good thing is that it is a kind of disease that gives us time to educate and look for the best. Even Gleason scores of 9 do not spread overnight. It builds up along the years. Its aggressivity leads patients to anxious moments leading us to become blind of the real facts. Hopeful is giving you good advice above.

Here are links that may help you in your process of education and journey. Read them all. It is the best you can do at this time;

http://csn.cancer.org/node/247821#comment-1290680

http://csn.cancer.org/node/213559#comment-1017931

http://csn.cancer.org/node/224280

http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-talking-with-doctor

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

http://prostate-cancer.org/decision-aide/where-to-start/prostate-basics/

http://www.cancer.gov/cancertopics/factsheet/Therapy/hormone-therapy-prostate

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

Best wishes.

VGama

Yank31's picture
Yank31
Posts: 46
Joined: Dec 2013

Here is a good place for you to start your research:

http://yananow.org/StrangePlace/index.shtml

Terry Herbert covers many of the basic questions that were going through my mind when I was in your position several months ago. With careful reading, and taking notes, you should be able to get through it in about 3 hours. I am sure VGama's links above are also excellent, so get busy. PCa is so different from other types of cancers in that you have so many choices to make on your own. 

Good luck, and stay connected.

 

Rico1
Posts: 4
Joined: Jul 2014

Manh: I'm with the rest of the people - get a second opinion and be sure to talk to an oncologist. My wife and I did a lot of homework before we decided on radiation treatments followed by seed implants. That was approximately three months ago, so I don't know what the future holds but I'm at peace with my decision. I think it is very important to look at all options but be at peace with the final decision.

Good luck!

hunter49
Posts: 210
Joined: Oct 2011

Manh I was 49 when I was diagnosed I had really no sypmtoms but a urinating at night and a little difficulty starting. My blood test during my physical jumped to a 4.1 so i did a biopsy and was posative for a 3=4 3 of 15 cores.  I hoepan RP 2 months later and path report upgraded me to a T2C gleason 4+3 but no posative margins or spread.  1st PSA test after surgery showed nothing <.1 and have been clean going on 3 years.  The surgery was not bad.  I was home in a day uncomfortable for 3 or 4 days back to work part-time in a wekk full in 2.  no urinary incontinence a some ED but nothing Vigra and porn  cannot fix.  However, I had a 70% it was contatined you most likely had it break out of the gland at which point the RP is really not going to help.  How are your scans?  I would get a second opinion and go to a multi diagnostic clinic at Hopkins in MD for a seconde opinion.  I can get u the info if you want.  My e-mail is dougrotella@gmail.com.  Please contatc me and do not rush this

BLUEpac6
Posts: 43
Joined: Jun 2012

I Jan.2009 Iwas told my psa was 110 after biopsy was told I had protrate cancer aggressive carcinoma.A robotic surgeon would not even talk to me as he said it had to be out of prostrate and woud be to danerous.the uncolgist said I was stage 4 and would need to have seeds and radiatin both.This was in may 2009 and het up to do prcedure aug. 2009 because you have to take hormone shot to reduce size of prostrate.In the mean time I went to tulsa oklahoma cancer treatnent of america fo r another opinion.I had already had a bone scan and it was negetive.They did a mri and cat scan that were all negitive except for a hump extending out of prostrate.they said surgery was to dangerous and would only do radiation but no seeds.Iwas left thinking I was going to have radiation.A friend of mine whose daddy died with prostrate cancer was talking to his urologist about me,a 70 year old doctor who has seen about everything, called me and said you nnd to have the prostrate removed because after radiation and cancer returns there is not any cure left.He put me in touch with Dr.Seth Lerner Baylor Clinic Houston and after looking at all my records said he would open me up but if camcer was in my lymph nodes he would close mee back up .He did and lymph nodes were clear and he removed the prostrate.I never really had any pain or even took pain pills Ihad no side effects or incntinince but have not had a erection.My psa stayed close to 0 till 2011 and rose to .06 and was told I needed salvage radiaton.So injune 2011I had 35 radiation treatments.Inever new I was recieving radiation with no side effects at all.My psa dropped to cloe to 0 and has stayed that way.A checkup Aug.2014 psa less than .01 and testerone 500.I feel fine except for still not being able to have a erection and I do leak aminor amount when exerting excessive energy.All cases are different but thats mine and I think I made the right decesion.I am sure peoples prayers helped me to.Pray you will be fne.

BLUEpac6
Posts: 43
Joined: Jun 2012

Go down page to dad newly diagnosed feb.27 to my post by BLUEpac6 as to long to write again.Pray you do fine.

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