Newly Diagnoised

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SL1958
New Member


Date Joined Apr 2011
Total Posts : 9
   Posted 4/5/2011 6:04 AM (GMT -6)   
Hi everyone I just turned 53 3/2/11 on March 11 I was told I have Prostate Cancer. It all started when I went to the Doctor because my right testicle was hurting.Had blood,urine test done along with PSA test.Doctors nurse called and told me I needed to get and 2nd opinion because my PSA was slightly elevated.I talked to my Doctor and my PSA went from 3.1 to 4.9 took antibiotic for 10 day and had PSA check again it went down to 4.2.The urologist said I needed to get a biopsy.Had the biopsy the results was 1 of 12 samples at 4% had cancer cells Gleason score 3+3=6 stage T1C PSA 4.5. The day I talked to the Doctor he explained everything pretty good gave me some books to read and a web site to check out and wants to see me in about 2 to 3 weeks to discuss treatment.Had ultra sound on testicle came back as something like a Varicose vein no lumps or mass Doctor said one is not related to the other. I need info on treatment oppositions for PC before I talk back with the Doctor.I've I been talking with some friends thats had PC and they had theres removed.

Gleason 6
Veteran Member


Date Joined Mar 2011
Total Posts : 876
   Posted 4/5/2011 6:30 AM (GMT -6)   
Welcome. I just found out recently that I also have PC and have been exploring my options. You will get lots of great advice and support here.
Age 61
PSA 4.3 9/10
PSA 5.5 2/11
PSA 7.1 3/11
Template Biopsy 6 pos out of 40 3/25/11 GS 6

fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 4/5/2011 8:36 AM (GMT -6)   
Welcome to HW,

Sorry you have to be here but it's a good place to learn about PC and what the options are.

One thing that can help the rest of us is to know your geographic location in general.

There is a PC support group meeting coming up tomorrow if you are in the Chicagoland area.
age 57 2/2010
PSA Feb 8.2
biopsy 2/2010 - 2 of 8 left & 2 of 8 right positive, Gleason 3+4=7
attended support group - advised to get a second opinion
second opinion on pathology from Johns Hopkins 4+4=8
PSA 15 4/2010
5 weeks IMRT 4/2010-6/2010 at Copley Hospital in Aurora, IL
91 palladium 103 seeds 7/2010 at Chicago Prostate Center, Westmont, IL
PSA Oct 3.97, Dec 2.78, 3/9/11 2.42

Post Edited (fulltlt) : 4/5/2011 8:39:55 AM (GMT-6)


davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/5/2011 10:24 AM (GMT -6)   
the good news is that you have very manageable pc and have many options, and are in no rush to decide. People here can let you know what they chose and why. It will help you a great deal. Of course you should always listen to your urologist and get a 2nd opinion.

I had numbers that were very similar to yours and chose robotic surgery. I'm better now than before. Everything went really smoothly and I basically have no side effects from surgery at all.

Feel free to email if you want more details. I'm in the NJ/NYC area.

You're going to be ok.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3634
   Posted 4/5/2011 10:59 AM (GMT -6)   
One of the books you should read is Dr. Walsh's "Guide to Surviving Prostate Cancer".. You should know that 97% of the men diagnosed Gleason 6 are still alive 15 years later if they get appropriate treatment..You PSA velocity, it's doubling time, is a key predictor of survivability..Don't ignore a rapidly rising PSA number...

Welcome to the forum and best of luck to you...
Age 68.
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5, DRE "Abnormal"
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4088
   Posted 4/5/2011 11:39 AM (GMT -6)   
Dear SL:
 
Shown below is a message I have posted before for new members you have asked about options.  I hope this is helpful...
 

First of all, I’m sorry you have to be here but I will tell you that you have found a good place for both information and support.  I am one of a few brachytherapy patients that post on this forum.  You will get lots of good advice from the surgery guys…some of it balanced, some of it clearly pro-surgery.  And you will get what I hope will be balanced advice from me, but it probably will also be a little skewed with a pro-radiation bias.  So, I’ll try to be a little bit organized and provide you with some advice from my perspective.

General

First of all, with early stage cancer you have time to research the heck out of your alternatives so you can feel comfortable that you are making an informed decision.  If you haven’t bought it yet, I advise you read “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer”.  It’s not perfect, by any means, but is an excellent primer.  Two other excellent books (in my opinion) are “A Primer on Prostate Cancer” by Dr. Strum and “Invasion of the Prostate Snatchers” by Dr. Scholz and Ralph Blum.  Secondly, either surgery or radiation will most likely cure you.  There are multiple long term studies for surgery and brachytherapy and/or IMRT that indicate they provide basically the same cure rate for early stage cancer patients.  Of course, each man is different and I suggest you plug your stats into some of the predictors available to see where you fall.

You should also make sure you consult at least three EXPERIENCED doctors to gather your options.  They are your uro-doc surgeon, a radiation oncologist and a prostate oncologist.  Many of the major cancer centers, e.g. Johns Hopkins, Duke, MSK, M.D. Anderson, etc., can provide those three in a multi-disciplinary team setting.  Otherwise, you can and should still do it on your own.  I highlighted “experienced” because there are definitive studies that demonstrate better outcomes if your practitioner has done 250+ procedures…let them learn on someone else. 

You also might consider getting a color doppler biopsy to assist with your baseline.  I didn’t even know such a thing existed but would have gotten one if I had known about them.  The bottom line is to make sure you are totally comfortable with the decision.  This is huge and they are messing with pretty important real estate!

Surgery

As I said, you will likely get lots of advice here from the experienced surgery guys.  The two choices I looked at were robotic and open.  Robotic is newer but there are plenty of experienced guys now who can do it.  I would have chosen robotic if I had chosen surgery.  With surgery you get the aforementioned likelihood of cure, the immediate post-procedure knowledge of the pathology of your cancer and the psychological advantage of “having it out”, that is very important to some men (it was not to me). 

But surgery is invasive, even the robotic kind.  You have the inherent risks of major surgery, a catheter for some period of time (a week +) and some time needed to recover from the operation.  You also almost certainly will experience incontinence – typically improving over a period of months.  You will most likely experience ED.  That improves over time for many men, especially with the help of Viagra, Levitra or Cialis.  There is some clear evidence that ED is psychological as well as physical.  In other words, once you lose the ability to have erections, it’s tough to get them back because you are trying so hard to make it happen.

The things that some surgery docs don’t tell you are that you lose your ejaculate, your penis may get shorter and many men ejaculate urine.

One advantage of surgery that many surgery patients cite is the fact that, if the cancer recurs, you have salvage radiation as an option for further treatment.  I personally find this a rather specious argument, since the cure rate from this salvage radiation treatment is low, further treatment is likely to be required anyway and there are equally effective salvage treatments for failed radiation treatment.

Brachytherapy

This was my choice and 2 1/2 years out, I’m glad I made it.  I’ll let you know in 20 years if I’m still glad!  You can read my “story” if you copy and paste the link at the bottom of my signature.

A typical poster-boy candidate for brachytherapy will have Gleason 6 or less, a prostate size of 50cc or smaller, Stage T1-T2, and PSA less than 10.  With G-7, brachytherapy alone may also be used if all of the other criteria are met plus cancer found in only a few cores and with a small %.  Otherwise, the doc will typically use HT to lower the prostate size and/or supplement the brachytherapy with a 4-5 week course of additional radiation therapy.

Brachytherapy as a procedure is pretty non-invasive and is typically done on an outpatient basis.  There is very little pain involved and the patient pretty much returns to normal activities within 48 hours.  Besides the aforementioned curative power of seeds, the urinary effects are much different than surgery.  There is rarely any incontinence, but a patient may experience some frequency and/or urgency during the first couple of months.  Most docs put men on Flomax for 3 months to assure normal urinary activity.  Pre-procedure, most patients take a written test about their urinary activities.  If things are pretty normal pre-procedure, they are more likely to be normal post. 

The same can be said for ED in brachytherapy patients.  A patient performing well before seeding is more likely to perform well afterward.  In any case, most of the “performing” patients return to sexual activity within a couple of weeks of the procedure.  However, if and when ED occurs in brachytherapy patients, it is likely to be a couple of years down the road.  If that happens, the same little blue pills that help surgery guys are even more likely do the trick for seed guys.  In general, brachytherapy patients show somewhat less ED than do surgery patients when normalized for age, diagnosis, etc.

While “radiation after surgery” is generally available (but not highly successful) if the cancer returns for surgery patients, “surgery after radiation” is not usually an option for brachy patients.  There are only a few docs who will do salvage surgery after radiation and personally, I would not recommend it.  So, if cancer returns to a brachytherapy patient, the options are likely to be hormone therapy, cryosurgery, HDR radiation, re-seeding or maybe even HIFU…there ARE options…unlike what some surgeons will imply.

This got a little long, but I hope it helps.  Best of luck to you; please let us know how you progress.

Tudpock


Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

GTOdave
Regular Member


Date Joined Oct 2010
Total Posts : 175
   Posted 4/5/2011 11:44 AM (GMT -6)   
SL1958, sorry about your dx, but welcome anyway.

You and I are the same age and I had substantial testicular pain for 4-5 weeks up to my surgery last month. Not only did I have cipro resistant case of prostatitus, I had a 2.5 inch hernia that was the major contributor to the pain. My urologist sent me to a GI doc who made the diagnosis. Once my DaVince op was done, the second surgeon, using the same incisions, used his laporoscopic equipment to repair the hernia.

It was 6 months for me from initial diagnosis to my surgery in early March. You are in no hurry with a G6 (like mine) and have the time to make considered decisions.

FWIW, at 4+ weeks since surgery, I have extremely minimal leaking (when I drink beer and laugh) and no Ed issues at all. I'd nominate my surgeon for Sainthood, but I thinks he's Jewish!

Please do read all the books recommended and know there is NO embarrassing question on this forum. My favorite is Anti Cancer, a new Way of Life. By David Servan-Schreiber, Md, PhD. His writings on the contribution diet has on cancer is profound.
52 yr old, PSA 3.5, Gleason 6 with 3 of 4 top nodes (0%;1%;10%;1%) cancerous. Bottom 2 floors are clean.
PSA 7/08: 2.2; 7/09: 2.9; 7/10: 4.1; 11/10: 3.5

DaVinci surgery at Yale 3/4/11. Dr. John Coleberg THE BEST!!!

45 gram gland weight
Gl 3+3
PT2C
margins clear
no metastasis
5% of gland adenocarcinoma

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/5/2011 11:46 AM (GMT -6)   
how do you ejaculate urine? never heard of that one.

I also think that saying incontinence is an almost certainty is not accurate at all. I experienced none at all. I mean zero issues. I've spoken to a ton of people who experienced none at all. Then there are those who experience it very mildly and some more so.

ED is also somewhat overstated. There are a ton of people including myself that don't experience it.

I think it's important for a newbie to realize that with the right form going into surgery and a very skilled surgeon, these issues can be minimized greatly.

Also, these same issues and others can result from radiation anyway.

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4088
   Posted 4/5/2011 11:52 AM (GMT -6)   
P.S. to davidg:
 
As one of our moderators was quick to point out in another thread, we need to be careful when saying we have "no side effects".  I can understand and respect your enthusiasm for surgery...I feel strongly about radiation.  But on other threads you state that you are suffering from extreme fatigue, stress and mild depression".  You also have shared that you occasionally use the little pills for help with your erections...hardly a normal course of events for a 40 year old.  All I'm saying is, unlike Spamadi, please try to use truth in advertising.
 
Finally, there have been plenty of posts on this forum about ejaculating urine...that's where I learned about it...
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4188
   Posted 4/5/2011 11:58 AM (GMT -6)   
Sl,
A low psa and a 1 core <5% is an indication of indolant or clinical insignificant cancer. Prostate cancer is not one disease, but a spetrum that includes harmless PC, that which will never hurt you in your lifetime , to very agressive pc that can cause death in a few years. It appears that you are in the harmless end of the spectrum.
The best book to read is "Invasion of the Prostate Snatchers" by Dr Mark Scholz that will explain the difference in these cancers.
Many men with your stats will never have to be treated in their lifetime; but approximately 30% do have their stats progress, determined by a rising psa or a higher grade gleason on a followup biopsy. These men are treated with the exact same cure rate as if they were treated immediately. Recent studies of men in Active Survelience programs that are on a heart healthy diet and excercise program show a significant decrease in progression and taking Adovart also increases the chances that your pc will never progress beyond the harmelsss point.
Get your slides read by an expert like Epstien at Hopins or Bostwick Labs for a 2nd opinion to insure you are truely a G6. You may not even have a tumor, but insignificant cancer cluster that are common. Approximately 50% of men your age have this condition. Learn as much as you can and don't make any drastic decisions as you have months if not years to decide on a treatment if you cannot psychologically come to grips that you have a cancer that will most likely never harm you. Ask your doctor to calculate your psa density, the size of your prostate in cc divided by 10. The ultrasound given at the time of your biopsy should have this measurement. If your psa is less than 1.5 times this number your are in the very low risk catagory.
JohnT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

ralfinaz
Veteran Member


Date Joined Jan 2011
Total Posts : 735
   Posted 4/5/2011 12:02 PM (GMT -6)   
SL,
Two comments:
Check to see if the problem with the testicle is a varicocele and if it can be repaired. A varicocele could be causing back pressure and allow an influx of free testosterone from the testicle directly to the prostate gland (as per Y. Gat et al). This can promote a disproportionate growth of prostate tissue.

In reference to your diagnosis, learn as much as you can before deciding. Many men with an early prostate cancer diagnosis can (and should) consider active surveillance. This is a way to monitor the cancer closely and avoid immediate treatment without a major risk of allowing the cancer to escape. To do this you need medical help that supports active surveillance. Visit the Johns Hopkins website to learn more about their protocol at: http://tinyurl.com/2z2joy

Best regards,

RalphV
Phoenix, Arizona
Surviving prostate cancer since 1992. RP; Orchiectomy;
GS (4 + 2); bilateral seminal vesicle invasion; tumor attached to rectal wall. Last PSA September, 2010: <0.1 ng/ml
Laughter is the best medicine!

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/5/2011 12:02 PM (GMT -6)   
Tudpock18 said...
P.S. to davidg:


As one of our moderators was quick to point out in another thread, we need to be careful when saying we have "no side effects". I can understand and respect your enthusiasm for surgery...I feel strongly about radiation. But on other threads you state that you are suffering from extreme fatigue, stress and mild depression". You also have shared that you occasionally use the little pills for help with your erections...hardly a normal course of events for a 40 year old. All I'm saying is, unlike Spamadi, please try to use truth in advertising.



Finally, there have been plenty of posts on this forum about ejaculating urine...that's where I learned about it...



Tudpock (Jim)


Depression isn't unique to pc.

Source of Fatigue isn't determined. I work with INdia at night and then drive to NYC during day for full day of work here. Gym,. kids, plans for Italy ( city hall today ). So who knows what it is.

Pills and no pills. HAve sex with both methods. I prefer pills and share them with friends who had no surgery but also enjoy added benefits of pills. Share viagra ( which I don't use) even with a female friend who likes taking them.

Dr. Samadi doesn't lie and his results are evident in patients like me and many others like me. That's why he's world renowned.

That covers all your "points' i think.

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/5/2011 12:03 PM (GMT -6)   
my BIL had varisoce veins in testicles. HAd them removed and has a lump in them to this day.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 4/5/2011 12:08 PM (GMT -6)   
sl:

welcome to our group, sorry you had the need to be find us and be here. you have already been given a lot of good advice thus far, in particular (but not limited to) read tudpocks and johnt's posts carefully, together they make a good summary of where you stand. also, i too highly reccomend the Walsh book to you as well, kind of a one volume primer on the subject.

based on your biopsy, you have an extremely low grade case of PC thus it should allow you plenty of time to learn more about PC in general, and your full spectrum of choices, be sure to consider Active Surveilance in your research.

Ask all the questions you ever want, no such thing as a dumb question here.

Good luck, and keep us posted of your venture

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

Tigerfan53
Veteran Member


Date Joined Jan 2011
Total Posts : 929
   Posted 4/5/2011 3:57 PM (GMT -6)   

Sorry for your diagnosis, but I’m glad you found this forum.  I’ve gotten a lot of information and encouragement from the people here.  They are very knowledgeable and caring.

 

I would suggest when you go for a second opinion - consider going to a cancer center, perhaps a major cancer center (such as those mentioned by Tudpock).  I thought surgery was my only option, because I was told at 53 I am too young for the other treatments.  Then I went for my second and third opinions at two major cancer centers.  There I found out that surgery, brachytherapy, IMRT, and Active Surveillance are all good options for me.

 

I would also encourage you to get a second opinion on your biopsy slides, as suggested by John T.  My slides got slightly upgraded: stayed at Gleason 6, but the percentage of cancer went up.  I also heard of the pathology results being downgraded.

 

Good luck on your journey.


Age 53
Diagnosed Dec 2010
PSA 5.3
Biopsy: 50% in 1 of 12 cores, Gleason 6
PSA 5.6
RRP scheduled for 6/6/2011

GOP
Veteran Member


Date Joined Dec 2010
Total Posts : 657
   Posted 4/5/2011 6:21 PM (GMT -6)   
'A low psa and a 1 core <5% is an indication of indolant or clinical insignificant cancer. Prostate cancer is not one disease, but a spetrum that includes harmless PC, that which will never hurt you in your lifetime , to very agressive pc that can cause death in a few years. It appears that you are in the harmless end of the spectrum.'
 
I believe that John T and I are of like mind in this area. I have seen too many guys whose treatment was exponentially worse than their 'disease'. That is why I put off treatment as long as possible, and then chose a treatment (brachytherapy) that was far less invasive than surgery. I understand that sometimes surgery is the only option, but it is my opinion that too many guys are pushed into unnecessary surgery before they have a chance to explore less invasive and equally effective alternatives. I base that opinion on my experiences with my own urologist and the often quoted dr. Walsh.
Having said all of that, as John T suggests, the trick is careful monitoring that allows one or one's doctor to know when the disease has crossed the line from insignificant to significant. And again, some doctors will NOT acknowledge the concept of insignificant cancer....ergo the overtreatment.
My goal was to remain 'intact' and at the same time survive the cancer. So far so good, but I am the first to realize that my early diagnosis allowed this option. Some guys are not that fortunate, and I do not mean to suggest otherwise.

Post Edited (GOP) : 4/6/2011 4:37:28 AM (GMT-6)


SL1958
New Member


Date Joined Apr 2011
Total Posts : 9
   Posted 4/6/2011 6:29 PM (GMT -6)   
Thanks everybody for the info.I will use all info from everybody but there are 2 or 3 post that really got my attention,the ones from ralfinaz and JohnT could you guys explain more. I have requested that my biopsy slides be sent to Bostwick and I to I'm in no hurry.Is there any body on here from the Memphis Tn area. Again thanks
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