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41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 7/11/2007 5:31 PM (GMT -6)   
Hi, I'm 41 and will be 42 this month.  Just diagnosed with PCa.  Feeling so low.
 
Am most worried if I do surgery scheduled Sept. 12 (DaVinci) that I will have incontinence.  I guess impotence is a terrible by-product of all this as well.  I have almost lost my libido since my diagnosis.
 
I'm also considering Loma Linda and Proton Therapy.  But I've gotten 100% advise from doctors, friends who are doctors, and from doctors's friends who are doctors to have the surgery.  It feels like I'm flying in the face of reason to do other than have the surgery.
 
But I go to sleep and wake up wondering how my life will be post surgery.  My wife is supportive and I know will be there for me.  She is the most youthful 51 year old woman I have ever known. 
 
I don't think anyone can provide the right answer, but ones self.  It's just such a darn hard decision to make.  I wish my scores were better since I'm so young, but I wish more I am able to beat this thing since they are what they are.
 
It's hard to find data for younger guys.
 
2/12 biopsies positive.
PSA 4.65
Prostate Right Base gleason grade 3+3=6 or 3+4=7, depending on which pathology report you believe.  4mm tumor @ 25%.  Perineural invasion present.
Prostate Left Apex (apparently a weak area of the prostate) gleason grade 3+4=7.  6mm tumor @ 30%.
 

 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 

Post Edited (41diagnosed) : 10/16/2007 10:21:26 PM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/11/2007 5:34 PM (GMT -6)   

Hi  ~ 41 Diagnosed &  Loved Ones,

 

A   “Special”  Warm Welcome  to  You!  yeah   

 

We know ~ we can “all” make “Your Journey” smoother just by being here for you! 

This is truly a great forum!!! ~ You have joined!  You are now part our forum family ~ a group of wonderful individuals who are so willing to share...  It helps “all of us” ~ to help you ~ if we know where you are on your path. So ~ Please stay with us and take our hand when you need it!  Keep posting.... OKAY!!

  

KNOWLEDGE    IS    POWER  ...  and  POWER conquers  fear

 

YOU MAKE THE DECISIONS… YOU HAVE OPTIONS…

~ and ~

Your decision will be the right decision for you!!!

 

Keeping you close in thoughts and prayers as you move forward in your search for answers…

 

In Friendship ~ Lee & Buddy

 

“God Bless You”

It's a little prayer  ~  "God Bless You" ...but it means so much each day,

It means may angels guard you and guide you on your  way.

 

(Direct Links ~ just clicks on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

We hope this link helps you!! Scroll down to the 3rd posting when you get there for some quick links..

Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :) 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/11/2007 5:45 PM (GMT -6)   

  tongue   Hi ~ New Friends,

 

You’ve already been blessed by finding HealingWell.  Continue reaching out to all of us because “Your Journey” will now start to help others.  And we are here to help you….. Support and Friendship is what we are all about.

 

Yes ~ 41 is young… and we are so thankful they found it now….. not later! 

 

As you move forward… you will find yourself on overload with information. 

Stop ~ take a deep breathe… and continue forward.  The stepping-stones that you are on and have recently traveled are all stones we have traversed.  We are now here to help shore up any wobbly ones for you.

 

All of our experiences will help to give you personal knowledge from our travels.  Pull what you need from each of us and you will find your way much easier.

 

Buddy & I invite you to visit our personal thread listed in our signature below.  It will give you a glimpse into “Our Journey”.  Make sure you visit the threads in the Helpful Hints link in your Welcome Letter… Also ~ please take time to go back page after page…… because there is so much here to help educate you from “all of our” personal travels.

 

We have extra strength to share…. So plan on pulling some if for you!!!

Keeping you close in thoughts and prayers as you move forward.  This journey is best traveled with friends.

 

In New Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

J  We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)

 


aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 7/11/2007 6:22 PM (GMT -6)   

Most here will advise that selection of your surgeon is more important than the type of surgery. As you indicated Perineural Invasion, the surgeon becomes more important still. With PNI (if I selected surgery) I'd go with a top surgeon using open surgery. 

Dr Klein from Cleveland Clinic briefly discusses Robotic, selection of surgeon and positive margins in an interview at www.prostatecancerupdate.com

Previous patients certainly speak very highly of Loma Linda. You could ask their advice on the PNI aspect. Disadvantage there might be the cost factor.


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 7/11/2007 7:01 PM (GMT -6)   
Hi 41,

Sorry you have to be here but this is the right place for hope, info and support. You are the only one who can decide on the right treatment for you. That's because you have to live with the outcome. Aus's advice about choosing the best possible doctor is what most of us believe is the most important factor in you decision. You have to live with the outcome and the after effects so do all the research you can on the various options. Don't get all involved with the statistics either. The numbers look pretty much the same when all is said and done. Talk it over with those close to you, do your research then make a decision and don't look back.

Good luck and please stay with us...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  T level - 48  Restarted T therapy.
Next PSA on 7/18/07.
 
 "I have cancer but cancer does not have me."


ldoun
New Member


Date Joined Jun 2007
Total Posts : 19
   Posted 7/11/2007 7:18 PM (GMT -6)   
41 Diagnosed,

I second the selection of surgeon advise. Whatever procedure you choose look for the best available. Everyone is different and you will never get guaranteed outcomes. The YANANOW.NET site may help. I choose surgery and do not regret it.

As far as incontinence is concerned, with surgery you will likely have at least a period of incontinence. It seems to last forever but in most cases it will resolve itself over time. I had a problem for two months and then a sudden improvement to the point of almost dry. Over 95% of surgery patients regain continence. Most other treatments also involve some incontinence.

ED is usually a longer term recovery and can be frustrating but over half of all patients have a nearly full recovery even it takes a couple years. It of course it will depend on the nerve sparing that is possible with your case. ED is a side effect with all PC treatments to various extents.

Knowledge of Prostate Cancer and the treatments is a powerful thing to reduce anxiety. Thank God for the internet and the resources available.

Jim
Age 64
5'8" 145#
PSA pre-op 5.2 (12% free)
Gleason 3+4=7
Robotic RP 4/24/07 Dr. Albala, Duke
Post-op- Organ confined Gleason 7
6/18/07 PSA <0.1
1 pad per day
ED Cialis and VED prescribed


Jayadub
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 7/11/2007 8:12 PM (GMT -6)   
This may help with the issue of PNI. It is not as big an issue in most cases as it may sound.

http://www.diagnosis.prostate-help.org/perineu.htm

If you would like to know more about Loma Linda post again and I would be glad to help with information about Protons. I am starting treatment on 7/26/2007 and have just returned from there after doing a final consult and treatment planning. Completely satisfied with the care I have received so far from LL.

54 years old

PSA 5.6 on 3/20/07

DRE: Negative

Biopsy on 4/20/07 

Results 4/25/07:

3 out of 12 cores positive, 2 on the right lobe with 5% adenocarcinoma Gleason 3+3, 1 on the left lobe 10% adenocarcinoma Gleason 3+4, overall Gleason graded 7 Cancer T1C. 2nd Pathology opinion concurs.

No scans recommended as seminal vesicle and lymph involvement is shown on nomograph as less than 1-2%. All physicians have agreed with this.

Dr. recommended Da Vinci Laproscopic RP, asked for 2nd opinion. Seattle Cancer Care recommended same. Asked for Radiation referral. Recommended IMRT. Scheduled Surgery for July 9th, 2007. Had 2nd thoughts about surgery and IMRT due to potential side effects. After web research discovered Proton Beam Therapy and called Loma Linda. Completed consultation with Dr. Luu on 7/5/2007 and will start Proton treatment on 7/26/2007 at Loma Linda. Now a full fledged BOB member. If you need to know ask and I will explain BOB to you.


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 7/11/2007 8:12 PM (GMT -6)   
Thanks for the concern and input. I have heard many say that your surgeon's experience is the most important.

I've talked to several surgeons. The two seeming most talked about in Chicago are Catelona at Northwestern who does open and Zagaja at University of Chicago that does DaVinci. Already talked to one and need to schedule time with the other. It's interesting, but when I discussed these names with my Urologist and one other very senior Urologist who seemed really caring and nice, both were definitely humble about offering their own services.

It occurred to me that either they felt intimidated or assumed that I was pre-disposed to "big name" surgeons. But I was hoping one would say, "I hear you on the big names, but my outcomes are just as good and I will take more of a personal interest in you." But that didn't happen.

The hard part for me is I have no history with ANY Urologist. I went for one PSA test with my primary doc who sent me to a Urologist who did a biopsy and gave me my diagnosis. I didn't go to him thinking he'd doing major surgery that would have major impact on my life. It was a simple biopsy.

I'm fortunate that there are lots of docs in Chicago with great educations and experience. People say go with someone you like. I say, I don't care if I like 'em as long as they are good at what they do and do an amazing job on me! As far as bed-side manner, it's a tough job and I can imagine if a doc has lots of experience, it's because he/she? (they do all seem to be men...anyone ever hear of a female Urologist?) is doing a lot of surgery. The more surgery a doc does, the harder I suppose it would be to have more personal interaction with each patient.

I guess if I want someone to talk to, I'd go see a Psychologist or Psychiatrist rather than my Urologist. Does that sound totally cynical? Just seems logical to me.

41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 7/11/2007 8:41 PM (GMT -6)   
Thx Jayadub

I'm registered at ProtonBOB and have Bob's book. He's been very helpful and supportive. I've talked to some of the guys on the ProtonBOB Young Man's List. They have been encouraging, but the overwhelming medical community does not seem to embrace Proton Therapy. That is what is confusing and troubling to me.

I have two VERY close friends who are physicians (one an Anesthesiologist and the other an ER Doc) and both listen to their colleagues' advise. I don't believe physicians to be the self-serving community that they are often portrayed as. These friends of mine are both getting input from their colleagues that surgery is my best option. One even said to me, "when I asked for their advice I told them to think of the patient as me." I have not gotten one vote for Proton Therapy.

One of my friends has even offered to go with me to Loma Linda to hear what the docs have to say and help me interpret their input with the other info I've got.

I admire your resolve to go with Proton Therapy. I wish my age factor didn't seem such a strong point to everyone. I look at my kids (in grade school) and wife and think, I have to make the right decision so I can be there for them long term.

Anyway, I'll look for you on ProtonBOB, or look for me. My number is posted there and I would be happy to talk.

sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 7/11/2007 9:35 PM (GMT -6)   

Can't help you too much on the surgeon/treatment discussion...others here are much better versed--- My local uro was well-trained and well experienced, and AVAILABLE QUICK --- which for me, was the deciding factor...

I was 45 when first diagnosed, and my numbers REALLY sucked...Don't worry too much about the after effects--- the goal here is to get CURED.  Incontinence is a drag, but goes away almost all the time.   ED sucks --- but can be dealt with a number of ways...  you'll surprise yourself with what you can deal with when you have to--- good luck!


Sterd82
Age 47
Initial PSA march of 2006: 28
PSA May of 2006: 39
8 of 12 cores malignant
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
Post surgury PSA fluctuated between .04 and .09
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sessions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undetectable
Next PSA November, 2007


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 7/11/2007 9:36 PM (GMT -6)   

Hey 41:

I hate to have to welcome you young guys to this forum, but early detection means the best possible chance for a complete cure, so glad you found your Pca and this forum.

I have only two points to make: "the overwhelming medical community does not seem to embrace Proton Therapy" - that's because very few of them know anything about proton therapy and, as a surgeon,  would you recommend a treatment that will take dollars out of your pocket??

Secondly, for the most part, doctors will recommend their modality as best because that is what they are familiar with and it is their livlihood.

The best treatment for you is the one YOU feel the most comfortable with and the one that has the side effects YOU are willing to accept.

Wishing you all the best in your research and keep us posted.

Dutch



Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001
Have had no side effects.
6yr PSA - 0.19
 
 
 


Jayadub
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 7/11/2007 9:42 PM (GMT -6)   
41,
 
If you would like to talk with me about some of the issues and concerns you are expressing please contact me at (Jayadub) and I would be happy to talk with you in person, not just about protons but PCa in general.
 
The bottom line for treatment is that you have to decide what is best for you. 
 
I seriously doubt that any urologist practicing today is going to recommend Protons. It is just the way it is. They are trained in surgery and that is what they will prefer to do to treat you. My urologist who did my biopsy is a fairly young guy (late 30's) and basically touched on surgery, IMRT, brachytherapy and cryo as treatment for myself. I have no animosity toward him, never felt he was self-serving, he has agreed to follow-up as I move past the treatment phase, partly I think from professional curiosity. He had no thoughts at all about protons or the efficacy of the treatment compared to the ones I mentioned. This IS going to change in the near future as the proton treatment gains momentum and more facilities open around the world.
 
I am sending an email to you at the address I think you are using at the BOB site so look for that from the email address above. Take care and hope to talk soon.
 
John
 

 

Edit **** ( e-mail address masked for security click on Jayadub)

 

Click Here and Refresh…once page is opened.>>>>  ****E-Mail Addresses for Members Only

 

Post Edited By Moderator (bluebird) : 7/24/2007 6:17:17 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/11/2007 10:53 PM (GMT -6)   
Hi 41,
This disease is very beatable and you have to throw away the cynicism. It will be of no use living with cancer. I too was stricken young, 44 but it had it there be quite some time, like many others here. After surgery it was confirmed that I am late stage III. But I won't let it get me down. I can't. I am very glad that I chose surgery because my fear of radiation was that it would leave unanswered questions about how bad I had the disease. It proved correct that the clinical staging and the surgical staging were quite different. Radiation would have killed the prostate, and likely the cancer in it, but I would have had to wait until recurrance to see what my stage was. And that answer could only be stage IV if it recurred. I am able now to apply my own control on what treatments happen next. And I didn't have to wait for recurrance. I am glad the prostate is gone, and I am glad that my PSA went undetectable after the surgery. And I am also strangely glad that I know I have pT3b cancer and can do something about it before it gets worse. I am not by any means knocking proton or IMRT as I believe both have value in treating me into the future. In fact I have had surgery, hormone treatment, and I am currently undergoing my 23rd IMRT treatment at 7:00am tomorrow. I heavily agree with your friends. At our age and Gleason, recurrance likely won't be prevented with proton treatment alone. I will complete 38 "hits" at the prostate bed where the surgery detected positive margins and local metastasis.

Enough about my story. You are welcome here at any time. You are our friend and comrad. But you need to shake the fear and be positive. There is a thread here about "Positive Thoughts" by veteran1. Vet raises hope for all. Once you are done with the initial shock, get tough about it and apply the same skills you used to find this site, and find what treatment you trust. There is no simple answer, but there is peace of mind. Good luck and hang in here. You'll find some excellent advice. And by the way, I was fully continent in just days after surgery, and viagra is helping. Not bad after the above treatments all in the last 5 months. My surgeon was Dr. W.i.l.s.o.n at City of Hope, not far from Loma Linda. 1,500 and counting just on robotic procedures alone. He directs the PC program their at CoH and one of his surgeons, is also one of the best, Dr. K.a.w.a.c.h.i.

Tony

In remission at pT3b, pre-op PSA 19.8, Gleason 4+3=7, 4 positive margins.

Post Edited (TC-LasVegas) : 7/12/2007 2:26:10 AM (GMT-6)


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 7/12/2007 1:48 AM (GMT -6)   
Hi 41,

We felt similiar fears and doubts, and found this forum was one of the best places to get informed. You can always find others with more experience thinking more clearly about the range of questions you may have, although sometimes the views differ, which is necessary (and good) due to the range of treatment options. We found it helped to stay very busy with organising the details of how we would firstly research it, and then treat it, according to our situation etc.

Your wife is also most welcome here at any time. All the best.
Creed_three
Lana posting for husband CJ (49 years). First PSA 3.5 (Nov 06). Open Radical Prostatectomy on Tuesday 17th April 2007. Gleeson 3 + 4 = 7. Confined to prostate. PSA 0.01 (June 07)


spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 7/12/2007 2:31 AM (GMT -6)   
Hello 41diagnosed,

Like the rest of the members; I wish you didn't need to be here, but we will give you all the support we can. As you have said most of the medical community see DaVinci surgery as the new "Gold Standard" for PCa treatment. All of the different types of surgery and radiation yield the same high percentage of success. The difference seems to be what each person wants to deal with. Radiation is a minimum-invasive theropy, and is for those people who would rather spend the time to under go the regiment of treatments then the prospect of a surgery. Surgery offers a "get the PCa out now" solution. It may take some time for your body to recover, but it does seem that the stronger younger guys heal quickly. In a few cases here the guys have reported no incontenence, little if any ED problems, and were back to work in just a couple of weeks.

This was not the case for me, but I was 60 when diagnosed. It took 5-6 weeks for me to feel that I was getting back to normal, and about 10 weeks to regain continence. Would I still choose surgery? Yes, because the most important thing to me was knowing that the PCa was out of my body.

What ever treatment you finally sellect; make sure the doctor has experience. I wish you good luck, and hope you will continue to post your progress updates.

Glen


Diagnosed at age 60
PSA went from 2.2 to 3.8 in 14 months
2 of 14 cores positive at 10%
Gleason 6(3+3), negative DRE, neg. boundaries
DaVinci surgery on 02/23/06
 

Post Edited (spinbiscuit) : 7/12/2007 2:37:31 AM (GMT-6)


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 7/12/2007 5:43 AM (GMT -6)   
Thanks for all your replies. Today is a better day and I'm feeling less down.

Busy day at work and no time to be down...that helps!

We'll all get through it...it's what people do. We humans overcome adversity and continue on for as long as we can. It's built into our psyche.

I feel for everyone in this forum. It's a bummer to get a lousy diagnosis and have it become the center of your universe, even if only for a short time.

My fight now is to do what I have to do to claim my life back from this disease so I can go back to being worried about typical issues...kids' homework, house projects, work challenges, etc.

I am now part of this crowd and will support anyone who needs it. It's great to hear about people moving on post treatment. That's what is most important to me.
 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 

Post Edited (41diagnosed) : 10/16/2007 10:21:54 PM (GMT-6)


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 7/12/2007 5:56 AM (GMT -6)   
hi 41 - I think the shock of your diagnosis is about gone now and you will be able to think clearer. yes, it's a hard decision to make on what course to take. my husband asked his urologist (who he first met at the biopsy) what he would do, and the answer was "I had PCa 3 years ago and I had surgery." Jeff decided right then to have a radical prostatecomy whereas I wanted to research other options. as you can see from below, recovery is moving along. yes, ED is a nuisance and frustrating, but something that we continue to work on. incontinence was fortunately not a problem for long. soon you won't be obsessed with PCa and life will go on. take care, kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 7/12/2007 7:23 AM (GMT -6)   
Hi, 41 - like all of us, the first shock of this diagnosis is wondering about impotence and incontinence, then the cancer. As you get closer to making a decision, those concerns will reverse themselves. I think a lot of folks will agree that ultimately it's getting rid of the cancer that becomes the priority. Your age gives you an edge in recovery in the other areas!

It pays to do a lot of research on all the options available. Good luck on that. And don't worry too much about the ups and downs emotionally. That, too, is part of this awful process. Sometimes, it will hit you like a brick all over again, then you pick yourself up and concentrate on the good things in life. Sounds like you plenty of that, too!
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/3/06 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now - Next one: 4/17/07
 


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 7/12/2007 5:36 PM (GMT -6)   
Hi 41. When you learned you had PC your life changed forever. How you deal with it is up to you. Educate yourself on all the treatments, get second 3rd or more opinions about the treatments if you have too. Make your informed decision and don't look back. My gleason score and PSA are near the same as yours. I had open surgery. Don't let that scare you. They will not fillet you as one radiation oncologist told me. I had no pain meds after I woke up in the recovery room none as of the date of this message and don't think I'll need them ever. No bladder spasms either. I have friends who have had all kinds of treatments. Decide on what you can live with. Getting rid of the cancer is the most improtant issue. Take care and keep the faith.

Mika-mvesr

El Tigre
Regular Member


Date Joined May 2007
Total Posts : 58
   Posted 7/12/2007 8:41 PM (GMT -6)   
Hi 41, The folks posting before me have pretty much summed up all the things I would normally say to a newly diagnosed person so I won't repeat. I will give you a little pre-surgery/beam/radiation etc. therapy advice. Post treatment incontinence is affected by many factors, only one of which you have any input/control over. The strength of your lower abdominal musculature. The stronger you are, the more likely the recovery and resumption of urinary control will be short. I strongly recommend exercising and strengthening regimes.
I was 44 when diagnosed But didn't have positive margins so am not in exactly the same boat but close enough to know what you are going through. My Doc talked to me about ALL the options including beam therapy. My choice of surgery was both financial and practical. Fact is there simply isn't any real long term data on survival rates for young men undergoing the beam. I just wasn't willing to take any chances. As for erectile dysfunction (ED) post surgery..... there are several ways to deal with it. please don't let ED OR incontinence make the choice. It is far better to be alive and dealing with those issues than the alternative.
I sure do wish I had found this site pre-surgery!! RRP 10/25/05 I don't remember all the scores. Have had clean checks ever since. Never had to use the pads!!


Jayadub
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 7/16/2007 12:42 PM (GMT -6)   
Just want to bump this to say that 41 and I had a great phone conversation this morning regarding his thoughts of treatment and his concerns re: an all eggs in one basket treatment approach. Protons are not that.

Thanks for taking the time to discuss your thoughts with me and please post here when you are able to update this thread.

In friendship
John

54 years old

PSA 5.6 on 3/20/07

DRE: Negative

Biopsy on 4/20/07 

Results 4/25/07:

3 out of 12 cores positive, 2 on the right lobe with 5% adenocarcinoma Gleason 3+3, 1 on the left lobe 10% adenocarcinoma Gleason 3+4, overall Gleason graded 7 Cancer T1C. 2nd Pathology opinion concurs.

No scans recommended as seminal vesicle and lymph involvement is shown on nomograph as less than 1-2%. All physicians have agreed with this.

Dr. recommended Da Vinci Laproscopic RP, asked for 2nd opinion. Seattle Cancer Care recommended same. Asked for Radiation referral. Recommended IMRT. Scheduled Surgery for July 9th, 2007. Had 2nd thoughts about surgery and IMRT due to potential side effects. After web research discovered Proton Beam Therapy and called Loma Linda. Completed consultation with Dr. Luu on 7/5/2007 and will start Proton treatment on 7/26/2007 at Loma Linda. Now a full fledged BOB member. If you need to know ask and I will explain BOB to you.


wamba2000
Regular Member


Date Joined Jul 2007
Total Posts : 25
   Posted 7/16/2007 4:16 PM (GMT -6)   

41, my prayers are with you as you choose your options.  Know that the worrying over having been detected weighs on everything you do....once the procedure is done, it's about moving forward and recovering.

As many have said: you are very young, your cancer was found early, removal seems like the best alternative for long term recovery.  Be comfortable with your doctor, talk with other patients that have been through it ( I asked for references-- he was annoyed, but provided them-- and I went forward.)

 

Good luck


Age: 56
PSA: 4.1 (first test) 4.2 (second test)
Gleason: 6, cancer found in both sections of prostate
Surgery: Open RP on 5/1/07
Pathology: All contined with the gland, no spread
Catheter out: 5/15/07
Incontinence: at 10 weeks to one pad per day
ED: slowly getting better
First Post-Surgery PSA: set for 8/6/07
 
 
Spread the word to men you know or meet: See your doctor. Have a PSA test early.


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 7/22/2007 10:54 PM (GMT -6)   
Dear 41

My heart goes out especially to the guys who have to face PCa at a young age and make the agonizing treatment decision. As you can see I selected Proton Therapy, but my much older age made that decision much easier. If I were your age, my decision would more likely have been surgery for all of the reasons given above by other members. While Proton has a great track record of success, there are really no definitive longer term studies tracking its success versus surgery, especially for younger guy like you at your particular stage of PCa. In my case, I was told that I had about an equal chance of success whether I chose surgery or some form of radiation. I chose Proton because I perceived, based on my research, that any side effects would be easier to deal with than surgery, at my age. Nevertheless, after surgery, younger guys have a better chance of overcoming incontinence and ED than older guys, and on a more rapid basis. Once we get PCa, we have to move forward, accept our fate and believe that we can lick this nasty disease. Being strong in the face of adversity and keeping a positive attitude is so important. Go with your heart in your final treatment decision, as tough as it may be. God Bless!

Dave
68, 29-core biopsy 9/27/06, PSA 7.1, Stage T1c, Gleason 7 (3+4) [less than 20% in one area],  Gleason 6 [less than 5% in two other areas], negative DRE, bone scan and Endorectal MRI. Completed 39 Proton radiation treatments 2/22/07-4/18/07.
First PSA test to be taken 7/07.

Post Edited (pcdave) : 7/22/2007 10:55:17 PM (GMT-6)


JustJulie
Regular Member


Date Joined Mar 2006
Total Posts : 355
   Posted 7/23/2007 2:21 PM (GMT -6)   

Dear 41:

Please take some time to investigate all your options - there is one for you, you just have to decide which one.  My husband chose Brachytherapy (seed implant) because he simply felt more comfortable with it.  It was his decision and I support him - the only decision I would not have support would have been watchful waiting.

Good luck to you.

JustJulie


broker59
Regular Member


Date Joined Apr 2007
Total Posts : 88
   Posted 7/24/2007 8:49 AM (GMT -6)   

Hi 41

I to am sorry you have to be here but this is a WONDERFUL place to share feeling, thoughts, and ideas.

I battled with what was the BEST treatment, even went to a cancer center in Illinios for a second opinion.  The radiologist there was very objective, and told me surgery was a very good choice for me.  Also keep in mind if you select radiation as your treatment, surgery is not a second option.  There is a procedure called salvage surgery, but even the sound of that sounds less than hopful.

I had the open radicial procedure just about 5 weeks ago.  No pain, just annoyance from the catheter.  This procedure enabled the surgeon to GET IN THERE, and feel around for any other suspicious organs.  I am using only 1 pad a day, and should be pad free soon.  Had my first PSA test yesterday, and am waiting on the results today or morrow.

Take care, and keep your spirits HIGH!!!


Broker 59


Date of Dx 3/20/07

PSA: 2.5

Gleeson: 3+4

Stage: T2

Bone Scan Clean

Date of Surgery: 6/21/07  Open RP
 
Post Opp: ALL NEGATIVE margins & L/N, S/V.
Cath out after 18 days = BIG RELIEF!!!

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