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bedamed
Regular Member


Date Joined Mar 2010
Total Posts : 31
   Posted 4/4/2010 3:47 AM (GMT -6)   
my question is and i have so many of them how do u at the end of the day decide wat the best treatment is even afta al the medical advice and tests which can be endless by the look of things im in a position where that decision is a wee way away but it doesnt mean im not considering al the options being the main income earner to a certain degree it comes down to recovery time and back to work this is a road i feel no matter wat i do it wont be the  rite thing  never ben so unsure or scared in al my life guess it could be worse as know a lot of people in here have ben to hell and back smhair idea guess maybe need to go with the flow so to spesk sort wish never had the blood test done in the first place  cheers room
psa at 12.g gleason 4+4  bio positive waiting for scan age46


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4848
   Posted 4/4/2010 5:12 AM (GMT -6)   
Please consider using punctuation so that others don’t have to struggle reading what you wrote.
 
Robotic surgery seemed like the best route for me.
 
The 40+ trips to the hospital for radiation was a major drawback for me. And when that is added to the downside of the side affects from the treatment I went with surgery.

Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 4/4/2010 5:14 AM (GMT -6)   
It's not easy, so don't worry about the fact that it's not easy, just try and concentrate on the big picture.

The intro at
www.prostatecancerfoundation.org/site/c.itIWK2OSG/b.46638/k.82C4/Prostate_Cancer_Treatment.htm
tries to get the balance right.

There is no "one size fits all" treatment for prostate cancer, so each man must learn as much as he can about various treatment options and, in conjunction with his physicians, make his own decision about what is best for him.

For most men, the decision will rest on a combination of clinical and psychological factors. Men diagnosed with localized prostate cancer today will likely live for many years, so any decision that is made now will likely reverberate for a long time. Careful consideration of the different options is an important first step in deciding on the best treatment course.

Consultation with all three types of prostate cancer specialists—a urologist, a radiation oncologist and a medical oncologist—will offer the most comprehensive assessment of the available treatments and expected outcomes.


Why not click on the link on the website I just quoted that is labelled:
Chapter 2: Initial Treatment: Weighing the Pros and Cons of Each Option
and try working you way through.

what we choose to do depends on a combination of our age, our PSA level, the rate of change of our PSA level, our Gleason score, the DRE, scans etc that all help tell us how big the problem is, where it is and give an indication of how nasty it is. So for a start I think in your case the doctors would suggest you do not consider Active surveillance so you can narrow it down from there. etc

Your doc will also be able to advise you about starting work after treatment etc

All the best

Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc.
Nov 17th 2009 PSA = 0.1
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist

Post Edited (English Alf) : 4/4/2010 4:20:24 AM (GMT-6)


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/4/2010 6:35 AM (GMT -6)   
Why don't you seek multiple opinions from various types of docs, that are not friends as a good ol boy network, get various angled look at what they say and contemplate thereafter. If you have real decent insurance it will pay for hiring and firing and muliple opinions...how would I know? Got 8 face to face opinions with appt's, (more outside of that), fired a doc or two along the way...all paid for by Big Blues Ins...exceeded my expectations and glad I put myself through the efforts, the education was priceless.  EnglishAlf gave you a heads up to this, that was good, too.

I would have my own bias of what you might do, but why bother...do not base your decision upon anyone particular persons journey, weigh it all. You don't want to question yourself the rest of your life.


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 4/4/2010 5:42:05 AM (GMT-6)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 4/4/2010 6:51 AM (GMT -6)   
Bedamed, your situation has been felt by millions of people of all walks of life. When you hear the words "you have cancer," no matter what type it is - it is only human to feel that word to the very core of your being. You want to make the right decisions and you want to be as sure as possible of the best outcome. Sadly, since none of us has a crystal ball - and neither does any doctor - you don't know if the treatment you choose is the best. Being unsure and scared is part of the package, and you are not alone.


You are a young man and need to think long term...you also need to look at your personal statistics: PSA of 12 with a Gleason 4+4.

In your earlier posts, you mentioned surgery. Has something happened to change your mind? I'm not saying that surgery is the way to go for you - only you and your doctor can make that decision.

I can't remember if you've met with a radiation oncologist to discuss the pros and cons of this type of treatment. Zufus is right in that you need to explore your options but, at some point, you must make a decision about how you are going to attack the beast.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 4/4/2010 7:12 AM (GMT -6)   
Bedamed.
Certainly getting educated, as you're doing now, is the best start. I think for me, it was a pretty easy decision once I got all the info I could. I was young too, at DX. For me, surgery was the only way to go. I have a good buddy who is a doctor and he told me that if it were he, he would want it the hell out! LOL. But once a radiologist told me that they could kill this cancer for sure, but in the next 40 years, I was probably going to get another prostate cancer and if that happened, after radiation, my options were limited. But, ya know, for each guy...when you make the decision, it will feel right. Still scary of course, but you know it the best for you.
email me if you wanna talk.
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3741
   Posted 4/4/2010 8:10 AM (GMT -6)   
Hey BD,
Everyone's PCa is different. Everyone's body is different and everyone has an opinion. I'm not a doc and can only explain what happened in my case.
You can see from my stats that things were happening quickly. I was in great shape, perfect BMI, active for my age so I felt I would recover quickly. I wanted the PCa out of me - now and "liked" the idea of radiation as back up. HT scared me.
There are no good alternatives only less bad.
I had Robotic surgery 8 months ago.
So with all my planning how did it work out for me in the four key areas: Cancer, Incontinence, Potency and Overall health? At 8 months:
Cancer: My PSA at 6 month was 0.05. Great.
Incontinence: I'm a total leaker. about 300 ml, 10 oz, per day. It is getting better very slowly.
Potency: Nothing. Pill and Pump don't work either. Trimix injection works.
Overall Health: Excellent. I feel great both physically and mentally.

My email is here if you want to talk. (Sorry Pal, I'm not calling you in NZ.)
Good Luck,
Jeff
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 6=3+3. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (Try cutting down on fluids. Bad idea. I know.)
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. There must be another issue. Uro mtg 4/23. Did I waste 6 months?
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05.

Post Edited (Worried Guy) : 4/4/2010 8:23:19 AM (GMT-6)


Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 4/4/2010 9:44 AM (GMT -6)   
First, let me clarify before my opinion to be respectful of all decisions, that each of us had to draw our own conclusions and take our own action. Hence each guy's/ couple's decision for them was the right one.

From my preliminary results before surgery, at your age, the decision is all but a no brainer. At 46, if you have radiation, and it fails, then you do not have the recourse for surgery, as your prostate will be too badly damaged. The oncologists I saw per cyber knife and brachy therapy both said that surgery would be the way to go for me due to age and gleason 8. With the prostate removed, you will have a definitive pathology as you will know beyond a doubt if the cancer has gotten outside the margins. With radiation, you have to wait for each 3 mos result of your psa and hope it doesn't move the wrong way. With surgery, you then have the option for radiation if it has gotten outside. I was among the fortunate, as the tumor, albeit aggressive, was caught early enough where it was completely contained.

Your age imho is the deciding factor. If you were in your 60's and gleason was showing a more passive form, then that's a whole other set of variables. Big issues would be the nature of the cancer as revealed via the biopsy and your age.

No matter what you decide, your decision will be the right one, as you are the one who decided.

Good luck.
Age 54
PSA 8/2009 5.6 Gleason 8
DaVinci surgery 11/2009
Pathology - totally contained in margins -one bundle spared
PSA now undetectable at < .05
Continance: 1 pad and almost normal
Doing 3 P's and now using trimix


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/4/2010 10:25 AM (GMT -6)   
bedamed,

we all understand the fear part, and the not wanting to make the wrong decision part, each of us ahead of you have had those very same fights in our head and hearts.

when its all said and done, you just have to go with what you feel right for you. you don't do what your dr. is telling you to do if you know its not right for you or in your best interest.

you do what you have been doing, asking questions, researching, getting medical opinions. then at the appropriate time, you make your decision, and you just go for it. for many, you can actually feel a sense of relief and a wave of calm when that is done. many have reported that here.

i am not telling you to rush any decision, but reality says, you are 46 years old, you have confirmed PCa with a Gleason 8, something needs to be done, as you can't afford to let it grow and spread more. It is your body, your cancer, and your life we are talking about here. While thinking through possible side effect issues and so forth, you have an agressive cancer at work inside you, please don't loose track of that thought.

In the end, you just have to decide what is right for you. Everyone else will rally around you. There is no magic answer, and in the end, each and every man here had to make his own choice for his own reason.

Good luck, and still the best way to shake some of that fear out of you, is to continue to educate your self. The prime goal with your numbers, is to eradicate the cancer you do have, and hopefully contain the beast before he decides to spread elsewhere. Incontinence and ED possibilities should be playing a distant second and third on your list of priorities. Get the cancer, my friend, get the cancer.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 4/4/2010 11:36 AM (GMT -6)   
Bedarned,
With a G8 and a psa of 12 it is highly likely that surgery will not work. You can go to the PCRI website and download PC tools and plug in your stats and get an idea of the probability of the PC being organ confined. What you need is EXPERT help in proper staging of the cancer as this will guide you to the proper treatment. You can also post your stats on prostate pointers P2P and have an expert give you an opinion. There are many more tests than can be run to give a better idea if it is organ confined. Having any local treatment before the tumor volume is reduced in high psa, high gleason cases insures a high probability of failure.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 4/4/2010 2:48 PM (GMT -6)   
bedamed

You have come to a great support place.

Hang in their friend. Do your research, decide what is best for you, make a decision and don't look back.

My advice and contact point is contained in my story and journal at www.gleasonscore10.com

I wish you the best

Richard
Biopsy 1998 = Neg Bio 2000 = Neg with PIN Bio 1/10/08 Gleason 10, Stage T1C 8 of 12 samples positive all < Than 5%
Bone Scan, CTs and MRI Negative early 2008
March 2008 MD Anderson - No Surgery or Proton = No Action
Feb & Mar PET (Possilbe Lymph Node Involvement & Prostacint Scan Negative
March 2008 U of Florida Proton Therapty Lupron & Casodek May 08 for 2 years
Completed 25 IMRT and 17 PBRT U of Florida Proton Therapy Institute 7/24/08
Latest CT June 08) showed no trace of tumor in lymph node area
PSA .08, Percent free PSA 38.1, testosterone 14.6
12/11/08 MRI Suspicious for Metastic disease L5 & S1 -- Bone Scan 12/19/08 Indicates No Bone Mets Spinal Stenosis and Neropathy in my legs
March 2008 Continue ADT Quarterly Lupron+Daily Casodex+Proscar PSA continues <0.1
Our Journey is on www.GLEASONSCORE10.COM


bedamed
Regular Member


Date Joined Mar 2010
Total Posts : 31
   Posted 4/4/2010 5:31 PM (GMT -6)   
thank u all for the info find each day is differrent mentally wise some the option in the usa and canada are not avaible here or if they are they are dam costly and one has to got private to get them ,however i have time on my side
i am seriously lokin at the seed inplants as may being the most suitable option for with the least amount of side effects my partner also likes that option as less invasive that some of the others and sounds as one can be up and running so to speak quite quickly which is wat i need
will know a lot more afta the scan and with any luck it will just be pc and not taken a detour to any other destination
got to admit this room as been a god send to me
today may be the last day im on line for a bit got to head up north for a bit to cart the kiwi fruit in to the packhouses be good to be busy for a bit
psa at 12.g gleason 4+4  bio positive waiting for scan age46


bedamed
Regular Member


Date Joined Mar 2010
Total Posts : 31
   Posted 4/4/2010 5:31 PM (GMT -6)   
thank u all for the info find each day is differrent mentally wise some the option in the usa and canada are not avaible here or if they are they are dam costly and one has to got private to get them ,however i have time on my side
i am seriously lokin at the seed inplants as may being the most suitable option for with the least amount of side effects my partner also likes that option as less invasive that some of the others and sounds as one can be up and running so to speak quite quickly which is wat i need
will know a lot more afta the scan and with any luck it will just be pc and not taken a detour to any other destination
got to admit this room as been a god send to me
today may be the last day im on line for a bit got to head up north for a bit to cart the kiwi fruit in to the packhouses be good to be busy for a bit
psa at 12.g gleason 4+4  bio positive waiting for scan age46


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7082
   Posted 4/4/2010 5:59 PM (GMT -6)   
I would say that until the biopsy report "sank in" and I realized how completely involved the prostate was, I really wanted seeds to be the answer. None of my doctors even considered it as viable - the majority said surgery, with just one wanting to do radiation.

Surgery is always a frightening thought, and yes, it does hand you a visible answer as to exactly what was there, which leaves a hard decision.

We all have good days, bad days, and worse days. Maybe a few days "disconnected" from the medical world will help. We will be looking for the arrival of the kiwi fruit imports. I just saw an article talking about the new benefits for our specific affliction.

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 4/5/2010 8:21 AM (GMT -6)   
BD, sounds like you have a plan in place, and that's a good thing. As already stated, you definitely need to take action on your disease. Good luck with your scans, and hope they come back nice and clean!
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


JoeyG
Regular Member


Date Joined Jul 2009
Total Posts : 162
   Posted 4/5/2010 8:51 AM (GMT -6)   
Bedamed,
 
One thing that you said needs to be addressed: "sorta wished I never had the blood test in the first place."
 
I know that the diagnosis and the treatments and everything else will be life-altering. It has been for each and every one of us. But I will say that most of us have this inate ability to cope - to take one day at a time and to appreciate the life that we have been given. It will work out for you too.
 
As to wishing that you never got that blood test in the first place---realize that in a few years when you likely would get metastatic symptons, all of the treatments available now, would not be available then. At that point, you would only be buying time in treating what would then be much more advanced cancer. You made the right decision to get the blood test, believe me. Its time not to look back but instead, to look ahead.
 
Best of luck to you!
Age -57; Diagnosed 10/05 PSA 13.4 GS 7 (4+3) Organ confined (T2B)
Cryoablation 4/06 Allegheny Hosp-Dr Ralph Miller (Cohen/Miller)
Post Cryo Nadir 8/06 0.2
Rising steadily to 0.7 4/09 :-(
Steady at 0.7 (7/09)
Doubled to 1.5 (2/10) YUCH!
Hoping to qualify for salvage cryo or radiation

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