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Posted 1/28/2013 1:18 AM (GMT 0)

Hi All,

Fairly new to the club.  Doing a lot of reading. 

I have read: "Prostate and Cancer: A Family Guide to Diagnosis, Treatment, and Survival" by Sheldon Marks.

 

Listened to "Man to Man: Surviving Prostate Cancer" by Michael Korda - a bit dated, but interesting from the perspective of a man that had surgery in 1994, his emotions, and problems.

 

I just ordered Dr. Patrick Walsh's Guide to Surviving Prostate Cancer

I am currently waiting for a referral to a Da Vinci surgeon.

I was wondering if anyone had any experience or comments about the UC Irvine Medical center or Dr. Michael K Louie.

Thanks for any input.

Larry

Posted 1/28/2013 2:21 AM (GMT 0)
Welcome to our corner of the world. Just a note of welcome and to say I am glad to hear you're reading up on the subject.

I am sure others will chine in about the doctor.

All the best,
Andrew
Posted 1/28/2013 2:30 AM (GMT 0)
At UCI the best surgeon is Alirhign. A,so look at City of Hope.
Be sure to investigate other options such as brachytherapy for less side effects and better cure rates for certain situations.
Posted 1/28/2013 6:05 AM (GMT 0)
I'm wondering if you're in So Cal based on the question about UCI. If so, I would recommend a consultation with either Dr. Scholz or Dr. Lam at Prostate Oncology Specialists in Marina del Rey. That was some of the first advice I was given when I joined this forum and I'm very thankful for it. Dr. Lam has been my oncologist since October and it's really made me feel like I have a personal advocate while I battle this.

On a practical level, they can help you with staging your disease and give you unbiased advice about your treatment options. My initial consultation was about 90 minutes and I felt so much more knowledgable and empowered after that meeting. And since all they focus on is prostate cancer they have good insights into the various surgeons and radiation programs that you would be likely to use.

Good luck while you fight this thing!

Michael
Posted 1/28/2013 1:16 PM (GMT 0)
Hi Larry,

Welcome - I think MichaelT has provided some good guidance for those of you in your neck of the woods, Scholz and Lam are about as good as it gets in terms of understanding and treating this beast. With only 1 core positive, a G6 and 5% you have lots of options.

You will also need to know what stage your at; and, what has your history of DRE's been, and what about gland size?

There's a tremendous amount of experience and knowledge to share out here - take your time, do your research - no need to rush into a treatment. You get one shot at the "best" treatment.

Best to you.
Posted 1/28/2013 4:28 PM (GMT 0)
Thanks for the replies,   I am in So Cal - Inland Empire.   I am going to be somewhat limited on choice of doctors and facilities because a have Health Net HMO as insurance.  I think my Urologist is being a pretty good sport by trying to get me a referral to a Robotic Surgeon outside of his own medical group, as he is an experienced surgeon that does open procedures himself.  But, said he will support me in whatever treatment I choose.   John T - Brachy has better cure rates for certain situations?  I haven't heard that one, can you elaborate?   I have read Grimm, et.al, but wonder if it isn’t a bit slanted due to the relatively low number of surgery studies included in the work.   That is where I read Brachy can cause a higher incidence of bowel problems.   I'm really torn on this - I would like it out and gone of course. Then, sometimes I wonder – Do I really have CANCER?...   I am concerned about side effects with both of the major options.  Principally incontinence and ED with surgery, and blockage, ED, and possible bowel trouble with Brachy.   I am not concerned about time off work for surgery.   I like the idea of actual pathology allowed by surgery.   And, it seems to me that surgery has a longer track record.   DRE has been relative normal for my age as far as I know, with some enlargement but nothing irregular.  I don't know the measured size or volume of the gland.   I might have a bit of urinary trouble now due to enlargement, but it’s not serious.   I do wonder if Brachy would make those troubles worse, and if the gland might continue to grow or urinary blockage could get worse in the future.    I am curious as to some possible side effects of radiation in general and Brachy especially I don't hear mentioned.  Does it cause general fatigue, nausea, trouble eating etc, etc.?   My dad died from a combination of Leukemia and Lymphoma – does that put me into another risk factor that would affect a decision regarding radiation?   I knew a guy at work a year or so ago that chose Brachy, and afterwards he seemed to get older quicker, lost weight and just didn't look well.  Granted, I didn't ask him details so I don't know if he had other treatment as well or the particulars of his case.   Thanks Again for your time  Sorry if I am rambling...   Larry
Posted 1/28/2013 4:40 PM (GMT 0)
Larry, welcome to HW. Sorry you have to be here but I'm sure you will finds lots of both info and support from this site.

Your posts certainly sound like you are biased toward surgery and that is fine. But...you barely have cancer and before you choose the most aggressive and radical treatment I would encourage you to get more educated on our disease. You may want to do AS and you should learn about that protocol. If your current urinary issues are minor then brachytherapy is a good possibility for you. The cure rates are as good as surgery and the side effects are generally considerably less onerous. I would recommend that you read the recent thread on this site where there was considerable discussion about surgery vs. brachytherapy. I also would strongly recommend that you consult with an experienced brachytherapy doctor so that you fully understand that option before making judgments about it.

Finally, I certainly understand insurance issues but I echo the earlier sentiment on this thread to consult with Drs. Scholz/Lam, especially given your location. After what I have learned in four years on this site I would DEFINITELY recommend seeing an experienced prostate oncologist so that you get an unbiased picture of your disease.

Good luck,

Jim
Posted 1/28/2013 6:30 PM (GMT 0)
Larry,
Brachy has certain advantages in apex tumors, tumors around the nerves and small extra capsular extensions. I had Brachy and have no side effects at 4 years.
I would also highly recommend Scholz/Lam as they did my staging which differered significantly from UCIs and resulted in a major change in my treatment plan.
JohnT
Posted 1/29/2013 9:43 PM (GMT 0)
Thx for the info,

I do feel I am biased towards surgery (maybe unfairly). So, I do want to learn more about Brachy. I may look into at least consulting with those doctors.

I think my Dr. may have said my gland is 30 grams, not sure, I was in shock.... My wife is sure she heard or read it somewhere. I know he did ultrasound with the biopsy, but I don't have that report.

I don't have the biopsy report with me at the moment (it's at home). But, it seems to me the positive sample was at the base, I will confirm later. It also said several samples showed prostatitis. Not sure if that is significant.
Posted 1/30/2013 2:45 AM (GMT 0)
Larryect,

Welcome aboard the train to freedom! Sorry you had to find us.

I envy your numbers. I also feel you need to take a deep breath and slow down a bit before you make a life changing decision. I had surgery myself but take a look a my numbers below and compare them to yours.

If I were you, I would talk to some of the doctors mentioned here and learn more about this disease. You have it, but just barely so you have time and options.

Good luck, stay with us and we will be here for you.

Bill
Posted 1/31/2013 1:17 AM (GMT 0)
Thx for the replies.

I have updated my signature with more detailed information. My gland is 31.4 g per the Dr's notes from the biopsy procedure.

I have asked the Dr's office for referrals to both a Da Vinci surgeon and a Brachytherapy radiologist. I was told the medical group my not approve both. I told them I should be able to consult both before determining which way to go. I believe they understood that, but we agreed we should wait until I get the first referral before asking for the 2nd one.

One step at a time I guess.


I also put my numbers into the basic tool at:

http://nomograms.mskcc.org/Prostate/PreTreatment.aspx

And it predicts surgery as the better long term results for me. With 98% at 5 years and 97% at 10 years for surgery and 87% at 5 years with Brachy with no data for 10 years.

I wonder if putting in the optional information would change things.
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