Treatment options?

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LynnDix
New Member


Date Joined Sep 2006
Total Posts : 10
   Posted 10/6/2006 9:31 AM (GMT -7)   
Hi everyone,
My Dad was diagnosed a few weeks ago with PC.
Early stages, clean CAT scan, PSA 5.2, 2/12 biopsies positive for cancer.
 
He was all set on surgery (scheduled for next Friday). Now he has been talking to people suggesting hormone therapy, seeds, etc... telling him to wait on surgery. Anyone have any thoughts. Good and bad experiences of treatment they would like to share?
 
We are all very confused. Any inout would be appreciated.

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 10/6/2006 10:50 AM (GMT -7)   
Lynn,

I am guessing Dad's cancer is a low grade?

Proton is a great choice...if it's available. My money is on Proton as the up and coming gold standard for many solid cancers in the not too distant future. More centers are opening every year.

Seeds are a choice but it has its wicked side effects (just like surgery) and does not remove potentially cancerous tissue. A lot of men do very well. There just isn't 30 years data to support a 54 year old man having seeds IMHO, but it certainly is a viable choice. My opinion is just that..worth a dime really..LOL!

Radiation, seeds and hormones all cause impotence.....and other things. Hormones or radiation won't reduce the same risks as surgery. Delays some s/e's and prolongs the onset of others but, they are still there. Surgery may have it's drawbacks but it doesn't deplete bones, cause diabetes, heart desease, mental decline or increase the risk second cancers. Hormones aren't considered a first choice in low risk cancers for the average healthy man of 54. Any Doc giving a man with a low grade cancer hormones that send him into deprivation hell without a medical necessity dictating the need, should be banned from touching human beings again.

Surgery leaves second choices and third if need be in the future. Radiation leaves hormones as a second chance. It's all in how we weigh it all out. If you dad is a healthy man, he can choose any of the treatments although why he'd even consider hormone deprivation as an initial choice is beyond me. Good Luck, Swim

spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 10/6/2006 12:00 PM (GMT -7)   
Hello Lynn,

I went through the same choices that you and your Dad now face. After much talk with the family, and some considerable time spent researching; we all agreed the DaVinci Robotic procedure would be the best option for me. I was 60 at the time of diagnosis. My general physical condition was good/excellent, and my biopsy was: 2 of 14 cores positive 10% ea., Gleason of 6 (3+3), neg. boundries, no bone scan required, no irregularities in DRE, PSA 3.8 from 2.2 in 1 year. My decision was finally based on the need to know that the PCa would be totally removed from my body. In the past 8 months since my procedure I am sure I made the right decision. Two other members of our group have had the same surgeon.

The most important issue is the skill and experience of the doctor performing the procedure no matter which treatment you decide on. I wish you good luck in your research, and please ask as many questions as you can think of.

Glen

LynnDix
New Member


Date Joined Sep 2006
Total Posts : 10
   Posted 10/6/2006 1:36 PM (GMT -7)   

thank you both.

Is the Divinci procedure surgery? I am not sure I have heard that term before.


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 10/6/2006 1:45 PM (GMT -7)   
LynnDix - you're hearing about daVinci for the first time here as I did. It's robotics and much like laparascopic, but with greater magnification. We opted for that, too. You'll find lots of info out there/here on it.

I want to add an "amen" to everything swimon said, plus the fact that with surgery, you will know the results of a pathology report and PSA test (which will determine if all the cancer is gone) within a few days and weeks after. With radiation, it can take up to a year (Swim, just correct me if I'm wrong) to receive a reliable score on a PSA and there is no gland left to see or test. If the cancer is still there, it's had plenty of time to spread and the prognosis might not be as good as early stage removal. In our case, the pathology

Our local ER doc (and neighbor) compared radiation to pouring in super glue and stirring it up. Think of what happens to food that's been microwaved until nothing is left. Rather drastic description, and many people swear by radiation, but if you have the option of surgery, there's just so much more to work with down the road if necessary.
Husband age 65
PSA on 5/1: 4.2 (doubled in 13 mos.; up to 4.3 on 6/1)
DaVinci Surgery 8/2/06
T2a (at biopsy)
T4c (at pathology) w/cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/3/06 - undetectable!
Future: PSA tests twice-yearly


Swimom
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Date Joined Apr 2006
Total Posts : 1732
   Posted 10/6/2006 1:48 PM (GMT -7)   
Lynn,
Da Vinci is a technical robot instrument aiding surgeons in laporoscopic surgery. Any of the surgeries are fine. It's the skill of the surgeon that matters. Same would obviously go for any treatment choice.
What area is your fathwer in?

Swim

Letty
Regular Member


Date Joined Sep 2006
Total Posts : 80
   Posted 10/6/2006 3:33 PM (GMT -7)   

Hi Lynn,

I think one of the other determining factors that I haven't seen mentioned yet is age and health.  We were told that if men get old enough, eventually they would almost all develop PC.  Also, that many would die without ever knowing they had it.  So if a man is "real elderly" and not in very good health and is not expected to live more than 10 years or so, then surgery may not be the best option as it would be extremely hard physically to recover from for a much older man.

However, if the man has longevity in his genes and is in good health and the cancer is caught early, we were told that surgery is the best chance for a cure.  As some of the others have noted, it also leaves more treatment options open if needed in the future. 

The more you educate yourselves, the better you'll feel about making a decision.  Keep asking questions until you feel secure and at peace with your decision.  I would also make sure that the people your Dad has been talking to, that are making him second guess his choice of surgery, have been through PC personally and know what they are talking about

Harmone therapy may well be the best choice for someone that is in the late stages of PC or someone who is very, very old and not expected to live much longer anyway.  There are many variables to consider.

Good Luck to you and your Dad,

 


Letty,
 
Husband diagnosed May 2006 at age 50.  RRP performed 13 July 06.
PSA 5.7,  Gleason 3+4=7, Staged T2C, Cancer confined to prostate.
His father diagnosed at age 62 and is currently a 13 year survivor!


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/6/2006 5:42 PM (GMT -7)   

Hi Lynn, Dad, & Family, 

Welcome ~ to "Our Family" of people helping people…  I’m so happy you came back to us!!! yeah

Your posting from 9-5 had a few responses with questions and we never heard back from you.... Glad your back!

 

You will hear from all of us about our own personal journey with prostate cancer.  And the more you read past postings…the more familiar you will be with what takes place and why we made our decisions.

 

How old is your dad?  

What is his general health??? 

What type of surgery was scheduled for Friday?  RRP (open), Lap, Robotic ??

 

Our personal response is….

Continue on with his original decision!  Surgery gives him options later if necessary!  Why start at Z and not have any other options down the road.  Start with A and you know there’s a lot of options between A-Z  J

 

You dad’s ultimate goal is to be (1) cancer free a.s.a.p.,  (2) urinary continence, and (3) sexual potency  ~ in this order!! 

 

The most important thing right now is KNOWLEDGE…….  Read, read, and read!!!

 

Your dad’s decision will have to be his decision…. But with you giving him “important” information from those who have been on this journey….   This will give him a “true and clear”  picture of what’s ahead…  and he can then make his final decision on “good honest” information.

 

Remember:  We are in this journey with you and your family…. So stay with us!!

 

"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~

 

In New Friendship,

Lee & Buddy

 

Excerpts from our  Thread titled:  Our Journey ~ Sharing is Caring dated 9-21-2006 on forum…

 

 (C) We had already made our decision before the Consultation on Feb. 27th 

Radical Retropubic Prostatectomy…..Lift the Hood…We wanted Dr. Staley to visually see and feel the tissue and take out any surrounding tissue that may be hiding… cancer cells.

 

 

"Our Journey” with Prostate Cancer  

             

April 4, 2006 Radical Retropubic Prostatectomy

June 29, 2006 PSA  less than 0.1,  NON-DETECTABLE….!!!!!!! J

                      

**When prostate cancer is small and curable, it is also silent—it produces no symptoms. 

 

That’s why we are all so shocked at finding out that “we’ have cancer.  It’s no longer an old man’s disease.  And that’s why it is very important to learn as much as we can about this disease and what your options are.

 

I’ve noticed in the forum that there are a lot of questions about what to expect?

What do I need to do to prepare?

What happens when you get there for your surgery? 

What about recovery time? 

As a spouse, caregiver, partner… What do I need to expect?

What about cost?   

 

Knowledge is POWER

We decided to share “Our Journey” in hopes of helping at least 1 person!  If it helps more…. That would be a blessing  At no time am I writing to tell you what you must do, or what you should do…. Your decision is Your Decision!!

Just giving you a view of what decisions we made, what the process was for us, and the outcome as of this date. 

 

Read as much as you can on the forum… there are so many different scenarios.  You will gain much knowledge from all of them.  There will be so much coming at you in the next little while… I would suggest the following for any new member:  When you read a posting that you think you might want to re-visit….copy and paste it in a word document.  There are so many postings coming in ~ you may not find it again….  This way you can re-visit it as many times as you like or delete it.  I hope our journal entries will help you. 

 

Ideal scenario: Prostate cancer detected early, treated, and cured.  Prostate cancer doesn’t have to be fatal.  If it’s caught early enough, it is completely curable.

 

                                                                        :-)    Sharing is Caring   :-)  

 

The most important thing right now is... take one day at a time. 

Reserve your energy because you'll both need it.

 

One thing each of us must remember…. NO 2 SITUATIONS ARE THE SAME

 

Take a deep breath.... and know that there's a lot of us like you out there... and we've been where you are now. 

 

All different kinds of lifestyles…  different PSA scores, different surgeries, different incomes, different jobs, different health issues, all different ages, and most of all… MENTAL ATTITUDES ARE DIFFERENT. So take a deep breath and let this forum help you!!!

 

Remember… YOU MAKE THE DECISIONS… YOU HAVE OPTIONS…

 


mama bluebird - Lee & Buddy 53
RRP April 3, 2006   PSA 4.6 Gleason 3+3=6 T2a   Confined to Prostate
June 29th PSA Less than 0.1 Non-detectable  :)

Post Edited (bluebird) : 10/6/2006 7:57:37 PM (GMT-6)


aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 10/7/2006 5:52 AM (GMT -7)   

It is not logical to comment on specific treatment options with very limited information.

CHOICE OF DOCTOR is more important than the treatment method used.

You mentioned surgery: Is the surgeon the most skillful and experienced surgeon available?

Is he very experienced in nerve sparing techniques?

If considering surgery, whether it's  open or robotic surgery, are you happy that the doctor has the ability to provide the best possible outcome?

There are no 100% guarantees, but you do  need to be positive about the treatment, and  especially so  about the chosen doctor who can make a huge diffence to the eventual result.


LynnDix
New Member


Date Joined Sep 2006
Total Posts : 10
   Posted 10/7/2006 8:01 PM (GMT -7)   

Thank you all so very much for your responses and concern. My Dad is in good health, other than this. He is confident in his doctor. He was all for surgery until, like I mentioned before, other people were given him their opinions and treatment suggestions. He has felt from the beginning, "just get it out!". My Grandather (Mom's side, not his) had a horrible experience from radiation and it killed him... years before the PC ever would have. So that option was out as far as he was concerned. The more I read about hormone therapy the more I feel he will rule that out as well. I am sure he is planning on sticking with the surgery. Again, I truly appreciate all of the time you have taken to reply. I will keep you posted!

Thanks.


56pontiac
Regular Member


Date Joined Sep 2006
Total Posts : 230
   Posted 10/8/2006 9:41 AM (GMT -7)   
How old is dad? I'm 57 and am having the Davinci Robot this Thursday along with three other friends on this site on the same day. You will become somewhat of an expert on PC and the treatments available. I think I know how dad feels. It is like getting slugged in the gut when you hear the word CANCER. One thing that surgery does do for sure, is it gets that rotten little trouble making sucker out of your body. If it is caught early enough the cure rate is extremely high. "ALL" other potential side effects, incontinence, impotence, can be fixed with time, and yes money. My doctor told me it doesn't do you any good if you are holding the casket door open with a stiffy. I had to laugh at that, as that seems to be a real big issue with us guys. They have made so many wonderful improvements in this disease and procedures in just the last five years. Your dad is lucky to have someone like you to investigate this for him, if he doesn't want to himself. Most important ask lots of questions to the doctor. Go with dad to the doctor and listen, most of us guys have selective hearing. Write all your questions down and don't be shy ask them. How many of these have you done? How has the success rate been for your patients. If you don't get answers you feel good about beat feet and get out of there, keep asking and find the right doctor and the right procedure for you. I hate this "thang" but at the same time I am glad it was found out, what we think is early instead of 8 to 10 years from now when it may really cause trouble. Know this, I and many of the folks on this site are thinking and praying for you and your dad even if we don't know you or know anything about you other than you now have this problem to deal with. God Bless You Both

Rick54
Regular Member


Date Joined Jul 2006
Total Posts : 40
   Posted 10/9/2006 7:43 AM (GMT -7)   
Another thought on the DaVinci robotic-assisted laproscopic surgery. Although the robot can add alot to the "exactness" of the surgery, as Swimom said, any surgery is only as good as the surgeon who does it. In miy mind, there was no better choice than DaVince (just my opinion) and I was lucky enough to have a urologist that suggested what he considering the best 2 surgeons in the mid-atlantic. Although there are lots of hospitals in the area that have DaVinci machines, he suggested only going to surgeons that have hundreds of procedures "under their belt." We researched both doctors he recommended and found them equal in our eyes (700-1000 robotic procedures) and chose the one that fit best for our schedule/location.

Best of luck to you and your Dad in your research and choice!

LynnDix
New Member


Date Joined Sep 2006
Total Posts : 10
   Posted 10/9/2006 12:46 PM (GMT -7)   
Thanks for all of the advice and kind words.

sluggo72
New Member


Date Joined Oct 2006
Total Posts : 5
   Posted 10/9/2006 2:45 PM (GMT -7)   

Hi, Lynn -  I just started reading this thread today so I don't know if your dad has had any treatment already.  The DaVinci prostatectomy simply allows the surgeon to perform the procedure through tiny surgical openings using robotic technology.  The system cannot be programmed and makes no decisions on its own - every maneuver must be done by the surgeon.  There are alot of advantages - less invasive, less pain, less infection risk, faster recovery etc.  My urologist tells me that they encourage this treatment for men in their sixties, but once into the seventies, other treatments are used.  I'm 72 and I'm just starting radiation therapy - image guided radiation therapy with high dose rate brachytherapy boost.  The treatment time is longer, I have to go for about a month or 5 weeks, the cure rate is 98%, there are no restrictions on me while I'm in treatment - maintain normal activities.  I have no idea where this rumor that radiation or seeds causes impotence, but that is flatly not true.  I'm not sure about hormone therapy.

This is really a great supportive forum and I wish you and your Dad the best of all possible outcomes.

sluggo72

Diagnosed 5/24/06.  PSA 5.7  Free PSA 9%.  Gleason score 6 (3+3)  2 of 14 sections w/cancer and 2 HGPIN (pre-cancerous)

Starting radiation therapy with 21st Century Oncology.

JustJulie
Regular Member


Date Joined Mar 2006
Total Posts : 355
   Posted 10/11/2006 6:06 AM (GMT -7)   

Lynn:

I can only comment on seed therapy, known as Brachytherapy, as that is what my husband chose over surgery and external beam radiation.

He was 44 when diagnosed, PSA 3.74, Gleason 6.

After researching all three options, we opted for Brachytherapy and he's doing very well.  With respect to side effects, fatigue was the main one but there was not alot of pain or extreme discomfort.  The radiation from the seeds does irritate the bowel somewhat so there is a recommended list of foods to try "at your own risk" for tolerance.  My husband tried everything in moderation and had no problems with a regular diet.

I can only provide our experience to you and ask you to consider all your options.  Not every procedure is for everyone.  Would we have like to opt to remove the organ and be done with it? - sure - but unfortunately because of the location of the tumour surgery was more risky for my husband.  Investigate everything and ask questions - surgery is not always the cure all.

 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 10/11/2006 8:09 AM (GMT -7)   
Hey Julie ,
Good to see your typing! Good to hear hubby is doing well. I remember you saying his cancer was in a bad location. How great it is that there are choices. Paul can't have anymore radiation. Our choices were somewhat limited too.

Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 10/11/2006 9:18 AM (GMT -7)   
Lynn,

I would strongly suggest that you go to www.yananow.net. This site includes mentor experiences cataloged by type of treatment. The men have posted their stories beginning with diagnoses and then updated the stories as they have gone through their treatment of choice. There is no bias between types of treatment options on this site. I found it to be my best source of knowledge and i think that I have read every story on the site and have posted my own. I personally chose the Da Vinci for all of the reasons already mentioned by others. The most important thing for you to do is get educated and seek a second opinion. I chose to not use a local urologist and will be having my surgery at a well known university medical center.

Good luck!

Tamu

floridarobert
New Member


Date Joined Dec 2006
Total Posts : 11
   Posted 12/26/2006 1:59 PM (GMT -7)   

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. 


ed from pa
Regular Member


Date Joined Dec 2006
Total Posts : 42
   Posted 12/29/2006 5:07 AM (GMT -7)   

LynDix, Your Dad is in great health, He is young, plus he has you as a caring daughter, your dad cannot miss. Like 99% of the folks here said. Get the best doctor for whatever procedure you choose, and do not look back. There is light at the end of this very dark tunnel.

 

ed from pa

Jesus Christ Big C

cancer small c


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 12/30/2006 7:33 PM (GMT -7)   
Hi LynDix,

Hope you touch base.... it's been quite awhile.
I'm glad your thread.... got popped back up to the top.

:) Lee & Buddy

mama bluebird - Lee & Buddy… from North Carolina

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a  

Confined to Prostate   June 29th ~ PSA Less than 0.1 Non-detectable

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