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prostate cancer options

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Prostate Cancer
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italbeok
New Member
Joined : Nov 2006
Posts : 6
Posted 11/12/2006 7:08 AM (GMT -6)
Hello all of You :-) -I really did not want to join this forum but I need to--I do not have to many of the details yet but My biopsy showed that I do have prostate cancer--No numbers yet but it is heavy in one lobe and light in the other--PSA was in the 4.6 area--I will get a copy of the biopsy during this coming week and post the numbers--Any thoughts on treatment methods will be welcomed. (radiation versus surgery)--Am waiting now for an appointment date for a bone scan and a MRI--I am sixty eight--Had five heart bypass graphs about nine years ago--Physically I am pretty good--Not over weight and walk a couple of miles several times a week--I am being theated at the VA hospital in Gainsville Florida--I am a Christian but do not want to go live with the Lord for while yet--Thanks for Your time and help--italbeok

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GreenAcres
Regular Member
Joined : Jul 2006
Posts : 474
Posted 11/12/2006 8:23 AM (GMT -6)
Hi, italbeok. And, we certainly welcome you to a place none of us want to be! Now that you're here, you'll meet many new friends who are in different stages of dealing with prostate cancer. I know a few (one or two?) others here have gong through the VA and your options may be guided by the VA policies and recommendations?

If you have time, sift back through as many old threads as you can - there's a wealth of information on different treatment options and outcomes. I know that we discovered more facts on forums and the Internet than we did from some of our doctors.

Agree with you - while we all appreciate having that angel on our shoulder, there's plenty of time later on to meet up personally! ;-)
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Tamu
Veteran Member
Joined : Oct 2006
Posts : 626
Posted 11/12/2006 10:44 AM (GMT -6)
Hello Italbeok,

All of us know how you feel about joining up on this forum. For a place that no one wants to be this is about as good as it gets. When you read the threads there will be several key points that will come out. The first and most important is that PCa is curable. The second is that if you stage and Gleason are in the norm range then you have plenty of time to make a treatment decision. The third is there are several treatment choices and these will be confusing so you have to do your research. The fourth is that the treatment choice has got to be the one you decide not one that is biasly influenced by a doctor. If your choice is surgery then you will find that most of us on this forum that have had surgery or is scheduled for it have opted to seek out experienced surgeons. I am not a veteran so i do not know how the VA benefits may limiy you. Know that your faith will be the most powerful weapon in your arsenal in the fight ahead. Ask plenty of questions for there are freinds here that will provide information and answers to our best ability.

Welcome abroad and good luck!

Tamu
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italbeok
New Member
Joined : Nov 2006
Posts : 6
Posted 11/12/2006 8:03 PM (GMT -6)
Thanks a lot for the comments--italbeok

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M. Kat
Veteran Member
Joined : Jul 2006
Posts : 715
Posted 11/13/2006 7:03 AM (GMT -6)
hi Italbeok,

it is unfortunate to be here, but it's a great place to be to win the battle against this disease. Jeff decided to have surgery instead of radiation because he wanted the cancer gone immediately and did not want to wait for the PSA level to go down. ask all the questions you want. someone here has probably had that same question as some time. take care, kat
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italbeok
New Member
Joined : Nov 2006
Posts : 6
Posted 11/13/2006 6:10 PM (GMT -6)
Hello again  :-) Boy! there sure is a lot to learn and think about--I have some numbers from My biopsy to share--fourteen samples taken--5 of 7 positive on right side--average 25%--1of 7 positive on left side--20%--T1cnxmx--GL 3+4=7--PSA 4.51--one sample is close to a nerve or bundle--I still have no date for the bone scan or MRI--I sure need that info to make a decision--

I guess that as all situations are, it could be a lot better or worse. to steal a phrase from My favorite sailor--I am what I am or in this case it is what it is--thanks for listening to My ramblings and I pray that all is well with ALL OF YOU---italbeok

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bluebird
Veteran Member
Joined : May 2006
Posts : 2543
Posted 11/16/2006 9:26 PM (GMT -6)
Hi ~ italbeok       Just wanted to say hi and let you know we’re glad you joined us.     This is a wonderful forum where true feelings can be shared and understood.   And you can ramble all you want…. That’s what we are all here for!!!   For ~ each other through good, bad, and ugly!!   Sharing lets one know there’s others who have traveled this path….. and it is a path best traveled with friends.     The answers are out there and as JustJulie responded on your other thread Radiation Treatment…..   ya can’t beat first hand experience.   It adds to your foundation that you must build in order to understand so you can make the best choice for you!!!   That’s why this forum is so powerful….   KNOWLEDGE IS POWER... and POWER conquers FEAR!!!!!   My boss who was 71 at the time of treatment choose to have the seed implants.   He’s done extremely well.   Since then he’s had bypass surgery and gall bladder surgery.     I hope you stay with us and share your journey…. We’ll be there for you to help you cross each stepping-stone ahead.   Take care and know we will keep you in our thoughts and prayers.   In Friendship ~ Lee & Buddy   "GOD Bless You"   It's a little prayer "GOD Bless You"... but it means so much each day, It means may angels guard you and guide you on your way.                                   ~ author unknown ~
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Tim G
Veteran Member
Joined : Jul 2006
Posts : 2957
Posted 11/16/2006 10:12 PM (GMT -6)
This is a forum no one wants to join unless they have prostate cancer, and then it is a wonderfully supportive and highly informational place to come to share your journey with others who have been exactly where you are. 

You are among friends here--men diagnosed with prostate cancer and their loved ones.  I can be.  I can remember how dumbstruck I was when first informed by my physician that I had prostate cancer.  I thought for a time that life was over.  While I would not wish prostate cancer on anyone, having it and surviving it has brought some unlooked for benefits.  My dearly beloved and I are closer than ever, walking this journey hand-in-hand, heart-to-heart. 

My own history is summarized in the signature line.  If we can be of additional help to you in your own journey,  just ask. I am here less frequently now that I have returned to full-time work responsbilities, but check in as I can. 

Take care and hang in there!

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floridarobert
New Member
Joined : Dec 2006
Posts : 11
Posted 12/26/2006 2:50 PM (GMT -6)

What your doctor does not tell you.

 

In December 2005 I was diagnosed with prostate cancer. The urologist game me a pamphlet which spelled out the choices for treatment.   After reading the pamphlet I started to read via the Internet and found more treatment option than the pamphlet recommended.

 

In the U.S. the treatments are typically 1. watchful waiting; 2. radiation (several kinds) and 3. surgery to remove the prostate.  

 

  1. Watchful waiting capitalizes on the usual slow growing nature of prostate cancer.  If one is over age 70 or 75 one might die of something else before prostate cancer kills.  The operative word is “might” as the available information is statistcaly based. If  a high percentage of people with prostate cancer will experience slow growth of the cancer, that does not rule out the small percentage that might have cancer that is spreading to other parts of the body.  It is not easy to distinguish slow growing from fast growing cancer.  In addition men are living longer these days; waiting is risky.               

 

 

  1. Radiation either by beam or by wire of one source or another tend to kill the cancer but also carry some unwanted side effects: impotence and incontinence (fecal and/or urinary).

 

  1. Radical prostatectomy carries similar side effects as radiation.

 

After reading about the above options I was not happy with any.    I  kept reading and found hormonal treatment, freezing,  and ultrasound. Hormonal treatment and freezing (cryo surgery) which  both carry significant levels of unwanted side effects.  High intensity focused ultrasound(HIFU) appeared most promising.

 

HIFU

 

Hifu has been used in Europe and Asia more than a decade to treat benignly enlarged prostate.  More than a half dozen years ago this method has been used for treating prostate cancer. This is the least invasive treatment for prostate cancer that carries the possibility of a cure.  There is no incision and side effects appear to be less than other methods.  Since this is experimental one is engaging in a degree of risk since large numbers of patients over many years have not yet been studied. 

 

From my amateurish reading of literature on the internet, it appeared to me that HIFU offered similar survival rates to someone in my situation (T1C; psa 4.6; Gleason score of 6) with less likelihood of  such side effects as impotence, incontinence, and  fistula.  Perhaps radical prostatectomy has a slightly better cure rate.

 

 

Among HIFU machines, I chose Sonablate over Ablatherm largely because Sonablate gives the physician a live image.

 

I emailed a number of different practitioners and researchers  who use Sonablate in Italy, England, Germany, U.S.A. and Japan. Most responded quickly and were willing to answer my questions.

 

I asked each physician about price and how much experience they had.   The American physicians were the most expensive($20,000 for treatment in Dominican Republic or Mexico), followed by the English, Japanese and finally two  Italians.   Dr. Durso in Torino, Italy was willing to do the procedure for about $7800. With my love for Italy and a good price, I nearly chose him. I then learned there was an “upgrade” to the machine; when I asked him about the upgrade, he did not respond.  I finally chose Dr. Uchida who not only has the most up to date equipment, but he has more experience than any other person working with Sonablate.  For $10,000 I could employ the services of one of the most respected researchers and practitioners in the field.  

 

We arranged for the procedure and I flew to Tokyo on my spring break.  I took my wife and daughter so we could have a little tour of Tokyo, a welcome distraction.  Dr. Uchida met me in the lobby of his hospital, Tokai University Hachioji Hospital.  Hachioji is a suburb of the sprawling city of Tokyo.  I felt as though I was taking the subway to Queens from Manhattan. 

 

Dr. Uchida gave me a room in which my wife and daughter could spend the night.  He spend two hours working on me with the Sonablate from approximately 5- 7 p.m.    I felt very little except the insertion of the catheter through the abdominal wall into by bladder. That felt like someone was trying to jam a screwdriver through my belly.  The next day I was ready to leave the hospital and continue my tour of nearby parks, museums, and temples.  Unfortunately the tube of the catheter prevented me from closing my pants! I was walking around Tokyo with my pants unbuttoned and my shirt tails out covering my front. 

 

The catheter was the most uncomfortable part of this experience, though I never doubted that it was a worthwhile trade off.  I complained to Dr. Uchida who gave me a more flexible tube. It was still irritating but tolerable.  Over the next 3 weeks, increasingly more urine was coming out of my penis than the plastic tube. 

 

I returned to Florida after about 10 days in Tokyo and sought a way to remove the catheter. I had made an appointment with the local urologist who had called for a biopsy.  When I showed up for my appointment to remove the catheter, he refused to see me since I had gone to another doctor.  However annoying that was I called a number of other doctors and found two urologists willing to work with me. 

 

I had my psa tested every 3 months, and it went from 4.6 biopsy, to 5.2 at time of treatment to 1.2  two months after.  Two more tests a few months later yielded 1.3.  I had a biopsy 12 months after the first and 9 months after the HIFU, and all 12 samples were benign.  Such a biopsy does not guarantee that I am cancer free, but I am in pretty good shape to face the future.  Erections have been weaker than prior to the treatment, but I can attain and maintain an erection. There is no ejaculate, but I can climax. Climaxes are slightly weaker than before. I tried the three drugs for erectile dysfunction: Cialis, Levitra, and Viagra each for daily dosage for several weeks.  Levitra worked best for me. I have no other side effects. 

 

I would be happy to talk to anyone interested in HIFU. I am not an expert but I have acquired valuable experience. 

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