The Two Most Important Days with Prostate Cancer ~ For the Newbies!

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/18/2008 10:09 AM (GMT -6)   
After attending an UsToo meeting this week, a guy came in that was recently diagnosed.  His Gleason was 6 and his PSA barely above warning at 4.2.  His doctors within a week were trying to hustle him straight to surgery.  They gave him a week to start the scheduling and have an open surgery. 
 
I write this one as a vereran of the disease and this site.  I have literally seen hundreds of new guys here, and many treatment modalities.  I have seen some fast decisions and some guys who took their time, and carefully planned out their course.  I was somewhere in between.  Leaning towards planned out, but I still wanted the cancer out of my body as soon as possible.
 
When we are told we have cancer, we react.  And I am now smart enough to tell all the new guys that knee jerk reactions are not common sense.  The day of my diagnosis changed my life forever, thus it was important day number one.  How it was going to change my life was still undetermined.  From what I have learned in this experience is there is one advocate that will always be on your side ~ and that is you.  Your next most important day will be the day you decide on what you will do about your prostate cancer. 
 
Unless you have a Gleason 7-10 or a PSA over 20, you have plenty of time to decide.  And even with any gleason or PSA you need to educate yourself about the disease.  You need to know the treatment modalities, what their side effects are, and what you will do if they fail.  By planning your road map, you will have peace of mind.  By understanding prostate cancer you will have knowledge about what modality will best work for you. 
 
There is one action I recommend in between the diagnosis and the decision ~ a second opinion.  Any action you take will affect you for the rest of your life.  As one urologist said to me, you are always at your best before treatments.  Meaning that as well as I am with ED and incontinence today, is the best I can be after treatment and that's if things go extremely well.  And no matter your modality ~ surgery, radiation, cryo, seeds, or watchful waiting ~ anything you do should be an educated decision.
 
As for the guy above? He had plenty of time to react.  Even up to 6 months.  He could enjoy the best of where is now and time to learn about treatment options and keet a close eye on the disease progression, and still go after the cure.
 
Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 

Post Edited (TC-LasVegas) : 10/18/2008 10:42:54 AM (GMT-6)


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 10/18/2008 11:22 AM (GMT -6)   
Reading shared experiences posted to a web forum or listening to people talk in a support group can be an important learning tools. However, I believe that the best and most important advice about how prostate cancer affects us and options from which we will be required to choose to deal with the challenge comes from trained and experienced medical professionals who've reviewed the results of our testing and who have examined us. My advice to men newly diagnosed with prostate cancer is to rely upon (to ask, and require) your primary care physician to help you manage the testing and analysis process and with the selection of specialists who will provide the treatments or undertake the surgery. Each of us is different, we're not trained specialists in this field and there's no one template for dealing with this that applies to all of us uniformly. 


Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (19 days post-op)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/18/2008 12:27 PM (GMT -6)   
Great ponts, Mavica,
It is collaborative information from experts that is needed to make a decision on what to do about your prostate cancer. I do believe that many patients go with what they are first told from a doctor, however. In our meeting, a urologist was present and concurred that education was key to good decision making. And though it is ambiguous to say "experts", one must remember that they are experts only in their field of practice, usually not all modalities. And through accounts from patient testimonial you can achieve a better understanding of many things. I certainly hope that when a doctor says "90% of my patients are continent and with out ED" that patients are aware of the right questions to ask. For example, if a patient is also on heart medication that precludes his use of the big three ED drugs ~ will he have a shot at being one of the 90%? Because it's well known that "90% no ED" can be achieved through those drugs, pumps, or needles, and that it is a likely case depending on the selected modality.

In addition, specialists are great at answering technical questions about their modality only. So looking into each modality, a decision is best made on information provided by experts of each modality you are considering. And it won't hurt to get patient perspectives of that modality as well.

There is no templates. And there are many options. and none that can be fully understood in the time frame afforded to my example in my first post.

In my case I listened to everything the doctors told me about the side effects of surgery. And after surgery I quickly regained continance and slight ED. But I was not completely prepared for what followed. Because I have advanced prostate cancer, I needed hormonal therapy, and also radiation. Some doctors would argue whether I needed to do anything after surgery. Others would suggest adding chemotherapy to what I elected to go with. I was even pointed to experimentals and studies. I had to get to where I needed to be by going further than what the experts said. At that point I was reading studies and comparing notes and statistics from major institutions and payed attention to patient accounts. Now I do understand, I wrote this thread for the first phase of prostate cancer. Because of the contraversy in the medical community surrounding the stage of the disease I have, who do I trust? I do like my oncologist and I am comfortable with him.  But unfortunately, I still can only go with what makes sense to me after I review each and every option.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 

Post Edited (TC-LasVegas) : 10/18/2008 12:31:50 PM (GMT-6)


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 10/18/2008 11:15 PM (GMT -6)   
Mavica,
While you raise some good points don't know that I entirely agree with you. Look at the example given by Tony. Gleason 6, PSA 4.2-----------"get on the table boy and we'll have that out of you straight away". How many times have I seen patients told by their doc "I'll cure you" when we all know that when it comes to cancer no doctor can truthfully say this. I was given good printed information and videos on treatment pre-surgery, but to be truthful the depth of that information pales beside the collective experience and practical advice of the members here. Same with E.D. and incontinence issues-------doctors will tell you about it, explain it etc. but unless they have actually had to go through it, the information is simply technical. No doctor for example warned me that 40% of Trimix users suffer aching and discomfort......nor discussed the merits of using varying mixtures of Bi-mix to overcome this. Who supplied information on the little tricks and novel solutions to problems with the catheter, comfort post op etc. No, while I wouldn't let any of the members here either diagnose nor operate on me, the depth of understanding and practical knowledge available here runs rings around that given out by most docs. Every new patient will face a committed and dedicated surgeon who believes that his surgery will be of the greatest benefit while at the same time being told by his radiation doctor that radiation will give him the best chance with minimum side effects. Both are dedicated professionals with hopefully the best interests of the patient in mind. No, this is one disease where it pays not to allow medical professionals to dictate your future.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)

Post Edited (BillyMac) : 10/18/2008 11:33:33 PM (GMT-6)


Navy corpsman
Regular Member


Date Joined Aug 2008
Total Posts : 61
   Posted 10/19/2008 11:24 AM (GMT -6)   

I could not agree more with Tony and Bill.  After spending four years in the medical field while in the Navy I realized that not all docs are created equal.  Never forget that the person who finishes last in their medical school class is called doctor.  Even if one is fortunate to find one of the best doctors in the world the best thing a person can do for themselves is learn everything they can about their illness or disease so that you make the best decision at each step of your journey.  Doctors are like any other group of people , some are much more competent than others.  You and you alone are your best advocate.

- John


Age:  44
We have a family history of PCa.  My Dad and uncle died from it at 65 and 53. My PSA velocity increased in the last 2 years and I had to talk my GP into refering me to a urologist.
Biopsy results:  5 of 11 cores positive, all 30%. Gleason 6. T1c. PSA 2.53  Date of biopsy 15MAY08.
Open RRP at Johns Hopkins with Dr. Partin on 09JUL08.
Pathology report:  Gleason 6, pT2, neg. margins, 0 lymph node and seminal vessical, organ confined, I lost 1 nerve bundle and 22 lymph nodes.
As of today, about a month after surgery, I feel at about 80%. Urinary control seems to be improving. Little Elvis has taken a nap and has not awakened yet. I hope when he wakes up he is well rested because he is going to get one heck of a workout.
 
 

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