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HELLO- Sorry for the long post, just got the news.

Feb2010
Posts: 51
Joined: Mar 2010

Hi! Had an escalating PSA starting middle part of last year. From 2.8 to 4.34 last month. 2 biopsies, 24 core samples later, still zero cancerous cells but lots of high grade PIN. J. Hopkin recommended a third one.
My urologist did a "saturated" biopsy, 30 samples! Got the news yesterday-hence my user name.
3 of the cores had 1% each cancerous cells with other "suspicious" tissue on some. I'm 45 years old, otherwise of good health. Pissed off, frustrated, confused, and really more worried about the side effects of the treatment than the treatment itself, (I think, it's part of the roller coaster of emotions and feelings after receiving the news). Prostatectomy seems ideal at this time, just because I want to get rid of this @3$% gland! Please give me your thoughts. ED, incontinence bothers me so much. I need to have a good process to guide my decision. Thank you everyone!

Trew
Posts: 892
Joined: Jan 2010

Why think of surgery as your first option? I would encourage you to save your sexuality and consider proton therapy. By save, I meanonce you have sugery you will no longer be shooting bullets- only blanks. And there is no guarentees you won't have ED problems. Don't jump to the surgery option without a good look at the proton therapy option. You have lots of time to act on this- no rush. Take your time and consider very crefully.

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

Trew....Not to take offence but just because someone has surgery does not equate to loosing your sexuality. A male is still a male.. Many have good success following surgery and are able to still have intercourse and some women like the 'blank' bullets with no mess.

Larry having good results at 7 months post Davinci

Feb2010
Posts: 51
Joined: Mar 2010

Thank you both. Discussing the different options helps out a lot.

Trew
Posts: 892
Joined: Jan 2010

Larry, I am just a strong proton advocate. I do not like what sugery has done to me, and looking back I would have skipped it, just taken The shot and radiation. BD is extremely fortunate his surgery has gone so well. Many do not turn out that way and wearing pads and Depends for the rest on one's life is nothing to look forward to.

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

One man's perspective,
Please do not rush into surgery. That @#$% gland has incredible influence on your sex life. I've been there. A Davinci failure....then 37 IMRT radiation treatments. Still don't know if radiation got it all. Yes, surgery works for some.....but getting rid of the gland does not absolutely mean the big C is all going with it. And when you read about shrinkage, dry ejaculations, need for ED pills..believe it. Bladder control is less an issue for most.....but is a fact of life for a few weeks for most post surgery.

My aim here is not to instill fear, but to encourage you to step back, take a deep breath, & explore your options. There is pro-ton, IMRT, seeds, & HIFU (which I found after surgery) is available in my area on a clinical trial basis. My gleason was too high anyway @7, for the HIFU treatment. You cannot be over 6. You are a young guy....and I believe these treatments are less severe on your future life. That being said, I am no doctor, but I am a guy who got the terrible news 1 year ago & rushed to the surgeon so he could rid my body of the culprit. I don't know all your numbers, but you should have time to really think it through, ask all the questions, read all the forums, say all the prayers until your comfortable with your dicision. Remember, prostate cancer is slow growing...some even have success with watchful waiting. PSA doubling time is a important indicator. Whatever your treatment, you will find lots of good information & support on this fine site.

Regards,
George

Feb2010
Posts: 51
Joined: Mar 2010

Thanks George. I really appreciate it.
I have Gleason 3+3=6 on the right mid;right apex, and right transitional (don't have an idea where that is).
Right base has chronic inflammationa and atypical small acinar proliferation (need to find out what this means)
Left base has High Grade PIN.
Left mid has chronic inflammation and HGPIN. Current PSA 4.0, down from 4.34 last month.
Just trying to educate myself right now with everything that I could. I have a radiation oncology appointment on Monday. I'm interested in the Proton Treatment.

Trew
Posts: 892
Joined: Jan 2010

What George is telling you is, the prostate is a nice gland to have around, don't give it up too easily. If my cancer was found at the stage your's is I would never have had surgery. I would have had proton and been out the door happy! And whole! The percentage of happy proton patients, I bet, is higher than the percentage of happy surgery patients.

hopeful and opt...
Posts: 1317
Joined: Apr 2009

Proton therapy has proven to be no better tan IMRT/3D-RT but better than the treatment radiation options of the early 90's and before. In fact there are many that feel that ImRT is a better option because of the curve of the xray.

Both form of radiation, radiate the tissue so future operations are very difficult or impossible. On the other hand one can have surgery, and if not successful go for a radiation type.

Radiation to include proton beam therapy has major side effects, generally after two years that include but not limited to impotence.

Ira

Trew
Posts: 892
Joined: Jan 2010

Reading the many testimonials on the LLU site there are many men who had proton therapy many years ago and they are still very happy men, all systems working well.

On the post I started on Proton Sites there is a good discussion on the benefits of proton therapy over other types of radiation by a doctor at the U of Florida. Well worth the 70 minutes listen.

hopeful and opt...
Posts: 1317
Joined: Apr 2009

the results of any studies done by unbiased organizations.......this would be very valuable to help those making a decision, proton or not.......thanks,,,,,,Ira

DJ7
Posts: 4
Joined: Feb 2010

djspl2000@yahoo.com
would be glad to talk

bdhilton
Posts: 758
Joined: Jan 2010

Sorry to hear and 45 is young I will be 55 this week. I am 13 days out of Open Surgery at Northwestern. I am not a doctor but at your age I would not consider radiation as an option (unless you are not in good health) and you should figure this out on your own during your investigation. You apparently are being seen at one of the best hospitals in the USA for Prostate Cancer (J. Hopkin);;;so if you are thinking surgery you are at a great place… It took me a number of weeks to make my final treatment decision (and the folks posting here where great supporting in this journey) and it was 3 months from my biopsy to surgery but my point is take the time to understand your treatment options and whatever your decision is make sure you use someone with experience, experience experience and great great stats…DO NOT GET HUNG UP ON MARKETING HPYE…..BE SMART....

Best to all

Feb2010
Posts: 51
Joined: Mar 2010

Thank you for all your comments/suggestions. I'm actually being seen at a Naval Hospital.
My urologist has been great. I'm exploring all possibilities at this time,even considering referral to specialists outside the Navy structure. Hopkins reviewed my second biopsy report and they're the ones who recommended the third biopsy. It's hard to be so optimistic, but I am trying. Thank you for all your support.

bdhilton
Posts: 758
Joined: Jan 2010

This cancer sucks and I would not wish it on anyone…but it is what it is and I believe understanding the reality of your options and attempting to be as positive as you can will benefit you in this journey…The positives are you know and now you can treat this cancer…take the necessary time and selected what is your best fit treatment and no one here can make that decision but you…god bless in the journey
From my perspective and my perspective only-
You say you are in good health so get in the best shape of your life right now.
Change your diet right now (the easiest to follow IMHO is a “healthy heart diet”)
It is my belief that the better health you are in the better off you will be for and after your treatment….
If you are interested in open surgery as an option and traveling is not an issue I would suggest you look at my surgeon (if not the best one of the 2 in the world) http://www.drcatalona.com/ take some time and read his articles et al on this site… He could be the best fit or the worse I do not know this only you can determine this. We also have many folks here on this site that can suggest other experts in their fields (Robotics, Proton, HIFU, etc….) but at the end of the day if you choose active surveillance, surgery, HIFU or Proton treatments believe in yourself and the treatment you have choose…but do not get sucked into to MARKETING HYPE and get the best you can get with experience, experience, experience and great, great, great stats…
Best of luck and I am sure everyone here is hoping and praying for the best for you in this journey in this reluctant brotherhood

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

Once you decided on the treatment that will fit...work to find the best possible person to do the job within the constraints of your life...it may be you find the expert first and then that leads you to the treatment...or the other way around. One thing I can say about my own situation is that I probably did go to fast on choosing the treatment and should have more carefully and thoroughly researched the various options for treatment. At the time I was in the decision process I felt like I did research everything but now in hindsight I could have spent more time on a couple of other treatment choices...I say this because I am still learning more now...yet I have already completed my treatment...perhaps I might have gone a different route...but sure glad mine turned out the way it did. Maybe I was just lucky...I don't really know...maybe there is yet another challenge lying in wait for me down the road...who knows..but for several reasons I just felt strongly about why I choose my treatment and person to do the treatment...it just felt right...I was comfortable with it and right now...I certainly do not regret it one ioda. 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

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

Check out this discussion, if you haven't already:
http://csn.cancer.org/node/187174
"A million overdiagnosed and counting"

Then it's up to you to decide if you are one of the overdiagnosed or not, because apparently no one in the medical profession has any idea how to tell. If they had, then these overdiagnoses wouldn't be happening.

Also important to know: The PSA doubling time is a more important indicator of disease progression than the absolute number. So just because you are a little above the "normal" range is not, by itself, an indication of an aggressive cancer. If you haven't discussed your PSA doubling time and its meaning with your urologist, do so.

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