SEEKING BEST TREATMENT OPTION AND BEST PROVIDER

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JWH
New Member


Date Joined Jan 2007
Total Posts : 14
   Posted 1/14/2007 2:30 PM (GMT -7)   
 
I am about 4 months into this.  PSA 7.4, Gleason score 6 (3+3),Clinical level T1C.  I'm 49 years old,the bone scan and CT are negative.  Two cores positive, 2 mm and 8 mm. 2% Left side, right side 19%. I've been reading, and am considering IMRT, HDR BRACHYTHERAPY and HIFU.  I am seeking input from those of you with similar clinical levels.  What treatments did you choose and what were your experiences.

Post Edited (JWH) : 1/17/2007 8:46:43 PM (GMT-7)


BenEcho10
Regular Member


Date Joined Jan 2007
Total Posts : 133
   Posted 1/14/2007 4:16 PM (GMT -7)   
Hi JWH,
 
Welcome to this web site. It is an excellent one. None of us are happy for the reason that we need this web site but I think that we are all happy to have found it.
 
I don't know much about the treatments that you are considering so I will let people with more knowledge respond to your questions.
 
I would encourage you to also also consider surgery (unless there is some medical reason that this is a bad idea for you.) With your low T1C stage, I would think that you would be an excellent candidate for surgery. The surgery can be pretty scary but it is not as tough as it used to be, particularly the less invasive Robotic Laproscopic technique. Surgery offers a pretty high liklihood of a cure compared to the other treatment options which cannot be as certain that they have killed all the cancer since they are not actually removing and checking the prostate. This is just my opinion and others may disagree. If you haven't already read Dr. Patrick Walsh's book on PCa I would encourage you to obtain a copy.
 
Good luck whatever you decide. Keep us all posted.
 
Ben


DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage 2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: First post op PSA was 0.00 in 12/06.

Post Edited (BenEcho10) : 1/14/2007 4:21:22 PM (GMT-7)


parson
Regular Member


Date Joined Dec 2006
Total Posts : 55
   Posted 1/14/2007 4:27 PM (GMT -7)   
Sorry to welcome you to this site but it is great and loads of information and supp Others, much better than I, can add to the advise. The good thing about it is that your CT and scan were negative. You did not list your PSA or gleason . I am in the process this wek of interviewing doctors and deciding on procedure. Each one of us must make their own decision but I am leaning toward surgery and robotic. Barrister
Age 64, PSA 3.4, 3 of 12 cores positive 12/14/06,gleason 3+3=6
CT of ab,chest and pelvis and Bone scan all clear 1/8/07


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 1/14/2007 4:36 PM (GMT -7)   
JWH,

You did not give your age or Gleason score which would be good to know for those of us that are here to help. I was T1C and you can see the other details below my signature. I was 56 when diagnosed. The reasons that I chose surgery were two fold. First, at my age and family history I have an expectation of living well into my 80's. In looking at the statistics the chances of reoccurrance of the cancer over the long term are higher with radiation types of treatment versus surgery. The second reason is that once you have radiation surgery in general is not second option as the radiation damage to the tissue in the pelvic area of the prostate impacts the complications of surgery. With surgery as the first treatment radiation can and is used as a secondary treatment if the cancer is not taken care of by the surgery. While these are the key reasons for my choice the other contributing factor was my mental state. With surgery the post op path report confirms whether or not the cancer was confined to the prostate and whether or not additional treatment is required. Wtih radiation your only benchmark is the PSA test. I did not feel that I could live a quality life always wondering what that next PSA test was going to be. I am not against a radiation approach and I actually considered proton beam treatment and I had been in my 70's I would have most likely gone in that direction. That is my story. There are many others. This is your life and you have to make your own decision and feel good about it. Good luck!!

Tamu
Diagnosed 7/6/06
1 of 10 core samples, 40%
Stage T1c, Gleason 3+3
Da Vinci on 11/01/06
56 Years Old
Post Op Path
Gleason 3+3
Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06


aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 1/14/2007 4:55 PM (GMT -7)   

The website www.yananow.net has details from many men grouped under the various treatment they have chosen, including the ones you are considering. Look under mentors section.

Johns Hopkins newsletters are also interesting. Their winter 2003 newsletter has an article on "insignificant cancers" www.urology.jhu.edu/newsletter

Previous suggestion on reading a good book on PC is a sound one. Another good publication is "Prostate Cancer Prevention and Cure" by Lee Nelson, which is very comprehensive. He covers various treatment options, selecting your doctor, lifestyle changes etc.

Many have a treatment they prefer, but everyone is different, and one size does not fit all.

Regardless of the treatment you choose, most important aspect is choice of doctor which will have a huge influence on long term prognosis.

 

John

 


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 1/14/2007 6:32 PM (GMT -7)   
Hello JWH,

Sorry you have to be here but welcome to the forum.

I had RRP because I wanted the doc to be able to see and apply his skill directly to my problem without going through technology to get there. I chose surgery because I wanted the cancer removed as soon as possible. I considered radiation seeds but could not have stood the waiting to see the results. Also I wanted to have as many follow-up options as possible in case that the cancer comes back or spreads.

I did not for one moment consider 72 to be "to old" for surgery!

Those were my choices and I am sure you will be satisfied with whatever options you choose.

Keep us posted....

Jim
Age 72. 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.  Next PSA on 4/4/07.
 
            "I have cancer but cancer does NOT have me!"


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 1/14/2007 6:33 PM (GMT -7)   
Hello JWH - like everyone else I am sorry to welcome you, but since you have the same disease as the rest of us, this is a good place to be. My urologist has done about 3500 RRP's and recommended the same for me. I have chosen IGRT/IMRT for myself and my uro was and is very supportive of my decision. He assured me that the cure rate for me (my numbers, etc.) was equal for both. It seems that for locally contained cancer, IGRT/IMRT radiotherapy is as successful as surgery. The is, however, longer term information for surgery compared to the latest radiation stuff.

Regards,

Bill
Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!


not me!
Regular Member


Date Joined Jan 2007
Total Posts : 30
   Posted 1/16/2007 5:19 PM (GMT -7)   
Welcome-
Here is my story to this point - 
I chose Da Vinci for some of the reasons that the others chose open surgery. My research indicated that da vinci caused less bleeding which actually allows  improved visual inspection for the surgeon. I also chose because of recovery time. I own a business and needed the quickest possible recovery. I went back to work the day following my surgery. I urge you to find a clinic that offers and is experienced with all treatments that are available. I did not consider the radiation option as I was told that the options later were reduced if cancer reoccured. Regarding surgery, older statistics that I have seen indicate little or no difference in results (meaning being cancer free) in the two main types of surgery. The daVinci procedure is a newer procedure so there are not as many long term results available. My original doctor was a highly respected urologist, but his hospital had not invested in the 1 Million dollar robat and so he did not offer or even advise me about the Da Vinci option. Once I told him I was aware of it and asked about, he actually tried to convince me against it- remember its just business to them  - Once I chose the Da Vinci procedure I searched for the right doc. The Henry Ford clinic in Detroit is considered by many to be one of the top Prostate Clinics in the country and offer cutting edge protate treatment . Their  recently published results show better results with Da Vinci than with conventional open surgery.I encourage you to visit :http://www.henryfordhealth.org/19085.cfm

I actually ended up selecting a doc in Kansas City David Emmott. He had experience at the Ford clinic and had completed several hundred Da Vinci procedures prior to my operation. In selecting the doc I talked with my personal doc, who is a social friend and he stressed experience as you have seen on this site.  He said there's an old saying about selecting a doc and a procedure - "you never want to be a doctors first first or the last patient". 

Wishing you well in your research 


56 year old male. 02/06 PSA 5.5  Subsequent Gleason 3+3=6 DaVinci Surgery 7/06 fully contained, returned to work (desk) the following afternoon, clear at 3 month check up, no pad 1 week after cath removal, but still occas. leaks after long day. No ED prior to surgery. ED since without improvement. Able to orgasm with help from wife and vibrator, but no sense that erection is returning. Drugs, no effect. Going to try the pump.

 


JustJulie
Regular Member


Date Joined Mar 2006
Total Posts : 355
   Posted 1/17/2007 1:04 PM (GMT -7)   
My husband underwent Brachytherapy treatment in April of 2006.  We are very pleased with the results.  We used the Princess Margaret Hospital in Toronto and opted for the newest treatment of "stranded" seeding whereby the seeds are stranded together so there is less chance of "migration" from the prostate.
 
If you have any questions about what to expect from Brachytherapy post them here, I'd be happy to answer them for you.  We looked at all the options and Brachytherapy was the best one for him.  He has since completed his treatment and is progressing well.
 
Best wishes to you, you've found a great group of friends here - they've certainly helped me through ...
 

djhouston
Regular Member


Date Joined Jan 2007
Total Posts : 68
   Posted 1/19/2007 6:10 PM (GMT -7)   

Hello JWH,

May I add my welcome to you, also.  As the others say, sorry you had to join us, but this is a very informative and supportive network. I want to add my "me, too" to the posting of Tamu, an old friend of mine, as I came to find out.  As you may see from my "signature" below, my clinical stats at the start of the journey for me were not so different from you, except that your "tip-off" PSA was a bit higher than mine, but my Gleason was worse, and the size of the largest area of cancer in one of the samples was 40%.  At three months, after my robotic surgery, my PSA was < 0.008, so as of now, I am a satisfied customer of the robot.

This whole prostate cancer thing is such a crapshoot.  On my first follow-up visit after the biopsy, when we were making plans about what I should do, my doctor gave me the odds of cure with the different treatment modalities.  Surgery of either kind (open or robot) was 91%, any external beam radiation and brachytherapy were 75%, as was cryosurgery (75%).  He did not mention HIFU because it was not done in this country at that point (4 months ago), and I don't know if it is here yet. I would bet that it has the same cure rate as cryotherapy, because they are somewhat alike (with HIFU you cook the gland and dissolve it so it can be sucked out of the body, and with cryotherapy you freeze and then thaw it and extract it similarly).

I am a worrier, and was relatively young at the time (56), and91% vs. 75% was a slam dunk for me.  Read Dr. Walsh's book on surviving PCa or Dr. Peter Scardino's book The Prostate Book.  Admittedly, they are both surgeons and might have a bias towards cutting the problem out.  However, I have been told that prostate cancer is such a thing that you cannot just take out the bad part and expect to be cured. The entire thing has to come out, or remaining normal cells may give rise to malignant ones.  That is why when they remove the prostate, they even shave off part of the bladder neck, as well, because they don't want one prostate cell remaining that could go bad.  Additionally, only prostate cells make PSA, and the way they currently tell if one is cancer-free is to have a PSA less than 0.1.  If any cells are remaining, they will make PSA which will confuse the issue on if and how much cancer remains.  The modalities other than radical surgery do not get all of the cells. 

The books give the probabilities of side effects with all the treatments. With surgery, your side effects are up front -- incontinence and erectile dysfunction.  I was about 95% continent two days after the catheter came out; the other matter is another matter.  I had nerve involvement on one side, and the doctor did a plastic surgery on it so that there would be chance after several months that I could get function back.  With any form of radiation, I believe that these side effects can come on little by little over time, because the radiation is not going to be confined to the capsule. It can injure the nerves controlling continence and erections over time, and thus one may be no better off in those regards. Additionally, the radiation may injure the colon in that area, with consequences for bowel function.  Like Tamu and the lay counsellor that I talked to said, you can have surgery and then radiation (if necessary), but you rarely have the chance to have radiation and then surgery.  Not only does the radiation make the tissue to be operated on fragile, but in the case that surgery is needed (the cancer got out after the radiation effects failed to limit it), many doctors do not like to operate for cancer extended outside of the gland. 

Another part of the crapshoot is that the biopsy may not tell the whole story. My clinical stage was T1c (cancer found by biopsy only, but confined to the capsule), and the biopsy revealed cancer on only one side with no neurovascular bundle invasion.  Only two months later, after the surgey, my final surgical pathology report gave a stage of T2c, cancer on both sides of the gland, with "definite neurovascular bundle invasion."  The neurovascular bundle is the route for badness to get out of Pandora's box.  They wouldn't have known about this if it hadn't been taken out and looked at.  Nevertheless, the rest of the report said negative surgical margins, negative lymph nodes, and negative seminal vesicle involvement (all good prognostic signs that, again, one wouldn't know anything about unless they were taken out in surgery).
 
For my money, I would also consider surgery, in addition to the options you mentioned. In prostate cancer, it is a good sign if they offer you surgery (that means it can be cured). And if one is going to have surgery, robotic surgery is something to ask for.  It is not just a case of losing less blood, or having less trauma, or your belly looking nicer afterwards, or going back to work sooner.  The new techniques associated with it allow better visibility of the area-- the viewer is a 3-D microscope-- and, if the doc is very experienced at it, the feel is just as good as open.  My doc told me that with the smaller size instruments and better control of them, he can make a continuous suturing around the free end of the urethra (that is left after taking out the section that goes through the prostate) as it is attached to the newly made bladder neck.  He told me there would only be room to do about six sutures around this tube the old way.  The particulars of who does it in your area, and all the stuff that it can do, are on their website www.davinciprostatectomy.com.  I am not a stockholder in Intuitive Surgical, the people who make the thing, so I am hopefully not afoul of the code of ethics for this website. I am just a happy customer.
 
A thing about prostate cancer that is so weird is that all these highly educated and experienced specialists leave the strategizing and decision making to the average man.  That's what makes these forums so important, in order to get others' experiences and outcomes.
 
Just a thought, and
All the best,
dj 
dj's stats:
PSA (10/04): 2.9; PSA (2/06):4.4, on Androgel (serum T about 450) at age 56; negative DRE, no symptoms.
PSA (5/06):5.7 with a free PSA% of 8, OFF Androgel (serum T 163). 
Biopsy (5/06): 4/12 samples positive; postitive samples only on right side; max Gleason 4+3=7 (in 2 of the 4 -from area nearest bladder.
DaVinci robotic-assisted laparoscopic radical prostatectomy + bladder lift + Right nerve plastic surgery (8/23/06).
Catheter out 4 weeks postop, due to internal pinhole leak at bladder-urethra junction.
Final pathology report:T2c-both sides,but in capsule; neg. margins, neg. lymph nodes, neg. seminal vesicles; final max Gleason still 4+3=7.
Follow-up PSA (11/06): <0.008; serum T: 195 OFF Androgel (at present).


JWH
New Member


Date Joined Jan 2007
Total Posts : 14
   Posted 1/20/2007 7:24 PM (GMT -7)   

 

Thank's Everyone for the Input

We are encouraged by your positive outcome with da Vinci. We are leaning toward surgery, now, after another week of research. The challenge we face is finding the best most talented, most experienced practitioner. As Dr. Scardino says, "The success of all prostate-cancer therapies hinges on the expertise of the person delivering them and the quality of the technology and facilities available to that expert." We can go anywhere within the United States. We really don't want to go outside the US. In your research, who is the best da Vinci doctor available?

Has anyone heard about Mani Menon at Henry Ford Hospital?

I would greatly appreciate anyone’s advice on there experiences and or knowledge on the subject of da Vinci.

JWH Age 49, T1c, PSA 7.4, Gleason 3+3-6, 2 positive cores (2 mm and 8 mm) 2 % Left - 19 % right. Believed to be organ confined. Bone scan and Cat scan negative.


Post Edited (JWH) : 1/21/2007 1:37:19 PM (GMT-7)


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 1/20/2007 7:42 PM (GMT -7)   
JWH,

There are several well estblished Doc's to choose from all over the country. Any ideas as to where you would want to go? Savatta, Menon, Mc Ginnis, Tewari....there are so many good ones now. The Divinci web site has a lot of names that have been dropped by happy customers. Paul had his done at U of M by David Wood. He's had good such good results, I'd be comfortable saying he's a very good choice too. Paul was 48 at the time and the one thing Wood didn't hesitiate to say was, at his age, incontinence would not be his problem. He was right...not a problem from day one. Good luck in what ever decision you make.

Swim

JWH
New Member


Date Joined Jan 2007
Total Posts : 14
   Posted 1/20/2007 10:12 PM (GMT -7)   

 

Thank you swimom.  I have been on the computer for the last several hours.  I am leaning toward Dr. Mani Menon at Henry Ford Hospital.  What do you think.


ed from pa
Regular Member


Date Joined Dec 2006
Total Posts : 42
   Posted 1/21/2007 3:25 AM (GMT -7)   

Thanks djhouston, that was a great post, there is not much to say after that one, thankyou.

When the urologist gave me my diagnosis, and then he gave me my options, i wanted the cancer totally out of my body period!! He wanted to know if i wanted to go to John Hopkins for the surgey, only because they have some of the top surgeons. I asked him if he could do the job. He responded, why certainly, he also said that you could have a great surgeon do the surgery and still mess up. He said that he has already seen this while practicing. He told me it would be my choice of doctors. I told him that he was the man for job. He did a great job!!!!!!!! I had the open surgery, no pain what so ever, none period. I just cannot believe it. He spared the nerve bundles. And I will be total continent by next friday. Which will be my first visit back to him since my surgey that was on Nov.30th of 2006.

So I feel it is a crap shoot for doctors. If you feel confident in your doctor, and the doctor feels confident and honest with you. Then you make the choice, we are all human and tend to make mistakes. Even the best of the best make mistakes. Remember this, whatever and whoever you choose will be the right choice. God Bless you, you will be just fine.

Ed from Pa

Jesus Christ big C

cancer small c


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 1/25/2007 12:20 PM (GMT -7)   
Hi JWH

Please see the posting under my name elsewhere on this website:

http://www.healingwell.com/community/default.aspx?f=35&m=709462&g=709962#m709962

Good luck to you!

Dave

68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in one area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/07.

pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 1/27/2007 9:02 PM (GMT -7)   
Hi JWH

At your young age of 49 I think you have made the wise decision to have robotic surgery. Also, you are having surgery by one of the best surgeons you can find. Younger men seem to do much better with surgery and the risk of impotence and incontinence are substantially less, especially in a early stage of PC. I almost had surgery with Dr. Tewari at NY-Presbyterian Hospital, but decided against it considering my age and the greater potential for impotence and incontinence side effects. Dr. Menon and Dr. Tweari worked closely together at the Henry Ford Hospital before Dr. Tewari moved to NY-Presbyterian to implement and head up their robotic surgery a few years ago. Both doctors were pioneers in robotic surgery. Dr. Tewari is also top notch and highly respected. Good Luck to you!

Dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in one area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/07.

Post Edited (pcdave) : 1/27/2007 9:05:37 PM (GMT-7)

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