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Posted 11/18/2010 8:03 PM (GMT 0)

Afternoon:

New member to your club, wished it was a different club.

In the process of trying to select the best treatment route to follow. On the talble is surgery, either open or daVinci, radiation (5 weeks external beam followed by seeds) or proton .

It is certainly a difficult process to go through to decide which route to take, there are both very success stories and then the bad stories which tend to cloud the choices.

Doc says I should come to my decision within the next 30-45 days. Great holiday project.

Both my wife and family are very supportive and involved in the process.

This is a great forum and appreciate all the informatin, already on my third book on the subject and am attedning local support groups to get information.

  

Posted 11/18/2010 8:32 PM (GMT 0)
It's a bummer that you have to be here, but welcome.

Someone will surely correct me if I'm wrong, but I think your numbers indicate that all of the options you mention are viable. Consider the possibility that with a 4+3, you may need more than one therapy before you're done with this. However, you should also realize that this is very treatable and you're chances of a good outcome are very good.

My comment is more about process than a specific treatment course. I suggest you learn all you can, read several books, and immerse yourself in the threads here, including older ones. Johns Hopkins Medical Center has some excellent information, including videos, nomograms, and patient information pieces. Get Dr. Patrick Walsh's book, Surviving Prostate Cancer (2007 version). It's the bible.

Also, avoid some of the less credible information on the internet. Centers of excellence, like the Mayo Clinic, Cleveland Clinic, and Johns Hopkins are excellent information sources, as is the American Cancer Society. Other sources may or not be credible, so be discriminating in your online reading.

Consider getting a second opinion from a medical oncologist who specializes in PCa. It was one of the most helpful things I did when I was faced with your choices. These are the guys who deal with patients after their first course of treatment fails, and they have a unique perspective. They also generally have no axe to grind regarding surgery vs. radiation.

Finally, don't let anyone here or anywhere else tell you there's only one way to go with this. Keep an open mind and trust your own instincts. Consider how you feel about radiation and its side effects vs. surgery and it's side effects. There's no easy way out of this and there's no treatment modality that doesn't have a downside, so pick your discomforts carefully. Also, consider how conservative you want to be about this.

My doc says that he can't tell people what treatment modality to select because he doesn't have their value system. I think there's a lot to that. You're on your own with this decision in the end. Educate yourself, make a choice and don't look back. If you have specific questions, this is a great place to raise them. Good luck with this, and remember that chances are you'll be just fine whatever you choose.
Posted 11/18/2010 8:38 PM (GMT 0)
Welcome, and sorry to see you here.

You'll find this site (and the members) to be a wealth of information. I don't know what I'd have done without this place.
Posted 11/18/2010 8:39 PM (GMT 0)
Vthiker-----I thought we had the club door locked tight, but apparently you were able to wedge your way in!---------seriously, welcome! Good advice above from Jazzman. Knowledge is power in terms of your ultimate decision with respect to treatment of any kind. We are here to provide support and as much info as we can. Read and ask questions, and then ask and read some more. 

Arnie in DE

Posted 11/18/2010 9:00 PM (GMT 0)
Sorry to welcome you to this dam club. As has been written before me do your research. You'll find you will need to weed through all the options. It's unfortunate but there is no one person who can sit you down and make the decision for you. Ask all the questions you can think of. I'm sure once you've taken your tour of all the posts you will see we discuss everything.
Good luck and keep in mind you are not alone we have all been where you are today.
Posted 11/18/2010 9:33 PM (GMT 0)
Welcome and sorry your here. This forum has been a godsend for me and my wife, there is comfort with-in the group.
Besides the good advice others have given, I suggest two things.

1. Let your wife be a part of your journey, good , bad and ugly parts all.

2. Keep in mind that no-one can tell the future but there are many of us who are as good or better than when we were back in your shoes.
Posted 11/18/2010 10:14 PM (GMT 0)
Hey, there Hiker...welcome to the group !  we're wishing you all the best..keep checking back in and keep us posted...

bob

 

Posted 11/18/2010 10:40 PM (GMT 0)
This can be a rough time..It's real easy to go into information overload..After all, you and I are not doctors, what do we know about this stuff?? But you will learn and learn fast...

I chose surgery...I knew it was a longshot going in (you have better odds) but I liked the fact I could try again with radiation if surgery failed..If I had known then what I know now, I would have done the combined seeds and external beam radiation treatment even if it meant traveling to a distant treatment center to get it done..My HMO style insurance handcuffed me to a certain extent..My surgery was not successful and I start salvage radiation and ADT in December..Now I must deal with the side effects of all three methods of treatment all at once..

Jazzman has learned very fast and his advise is sound, especially about consulting with a medical oncologist to help make your primary treatment decision..He has no dog in this fight but he has seen it all many times..His insights may be helpful to you. He will point out things the surgeon and R-doc may have skipped over...These will not be days of Wine & Roses...

Best of luck to you as you begin your journey..
Posted 11/18/2010 11:10 PM (GMT 0)
Hello all,
I am the Ms. of VtHiker and thank you for all your informative words. He shared your comments as he was so pleased to reach a group of common thoughts. Thanks again. We are in it together and strong (most of the time!). We have been consumed with educating ourselves and trying to make the best decision we can. VtHiker is an amazing individual and will certainly achieve as much success as possible. My sister has melanoma and we've been focused on her for 4 years (she's been stage 4 melanoma for 4 years and is still alive!). So, I (moreso than VtHiker) was floored with the news he now had cancer. I never thought....I'm sure none of you did either. Again, thanks for being there!
Posted 11/19/2010 1:14 AM (GMT 0)
Welcome to both of you. I wish more spouses/partners were involved on here.

Sorry to hear about the melanoma. One of our other close brothers on here wife is battling multiple myeloma. This cancer is just not fair.

It is good to hear that you are calm and rational, and looking at all the options. Keep reading and reading. The internet is so great. I can't imagine having PC before the internet.

Good luck on your journey and keep us in loop. Once you decide on your selected treatment option, go, and never look back. Second guessing can be a killer. Hindsight is a luxury we don't have looking forward.
Posted 11/19/2010 1:31 AM (GMT 0)
Welcome to the place no one wants to be in. As many have already mentioned, educate yourself during the 30-45 days and make a decision without looking back. I had Gleason 8 and chose surgery only because I wanted to have radiation as a second bullet if surgery didn't do the trick. Your biopsy is not too bad and all choices are available to you. Good luck.
Posted 11/19/2010 1:52 AM (GMT 0)
Welcome both Hiker and Mrs. Hiker. if you have to join our flock, its a great place to be. please keep us posted
Posted 11/19/2010 12:21 PM (GMT 0)
Welcome to HW (as it is acronymed).

I made my decision based on what quality of life I would have following the treatment I chose.

Don't get fooled into believing myths that doctors will tell you as the gospel truth.
Know the facts and question them on what they tell you.

I read a lot of books , and on the internet and talked to two of the guys at church that
had been diagnosed with prostate cancer, one had seeds and other other had surgery.

In the end I chose radiation because I knew what the cure rates were and what the
quality of life afterwards would be.
Posted 11/19/2010 12:40 PM (GMT 0)

goodlife said...
Once you decide on your selected treatment option, go, and never look back. Second guessing can be a killer. Hindsight is a luxury we don't have looking forward.

This may be the best piece of advice you'll receive.

My 2 cents, and worth every penny.
Posted 11/19/2010 2:16 PM (GMT 0)
Welcome to HW, Really nice to see the couple team in the battle. It sure makes this a bit easier to have our loved one at our side in the journey. Do not hesitate to ask questions. No one can tell you which treatment fits you best the 2 of you must make that decision.

I think you will find that the gang here are just the best in the world. My wife and I have met and visited with many of the members on HW and have not been dissapoied.

Best of luck on your discovery of the new you.

Cajun Jeff
Posted 11/19/2010 4:20 PM (GMT 0)
Mr and Mrs VT:

So far you have made THE BEST single decision that I did not make until my postop: to find this group on HW.

I second the opinion to get a second opinion...and possibly a third. I did and went forth feeling more confident of what I was dealing with. We all are here with you.

Alex
Posted 11/19/2010 4:32 PM (GMT 0)
Welcome on board to both of you,

The above thoughts posts etc cover most of the ground.
All I would add is that you may find that it is not just a difficult cvall, but that it is even hard to work out how to make your mind up and even when you do make a decision you may still worry that it was not the right one. So don't leave any questions unasked, or any thoughts unsaid at this stage.
We are all different, even before we get this nasty diagnosis thrown at us, and the disease and its course is never exactly the same in any two of us, so don;t get fooled by all the statistics - remember that they are merely numbers, averages and means.

You are an individual.

Alf
Posted 11/19/2010 4:40 PM (GMT 0)
Lots of good advice here. Just remember as you obtain your 2nd or 3rd or however many opinions you get - if you go to a surgeon, they are generally going to recommend surgery. If you go to a radiologist, they are generally going to recommend radiation. So collect your information, and make the best choice for you.

Good luck,

kcragman
Posted 11/21/2010 8:42 PM (GMT 0)
Just want to thank everyone for their feedback. Everyone is so kind with their words and it is certainly helpful as my wife and I sort through the treatment options. Not an easy process. 
Posted 11/21/2010 9:35 PM (GMT 0)
VT's
Welcome, and Best of Luck to you'all. I believe that Jazz has it all nicely covered. Do your homework, make a decision, and give it heck!
Hero
Posted 11/21/2010 10:19 PM (GMT 0)
Hiker: Welcome to the club no one wants to join.

Here is my post for the new folks, which I believe you will find to be useful:

Welcome to the club no one wants to join.

I have some suggestions that will help to make well-informed decisions.

Anecdotes contributed by other patients can be interesting, but should never, ever, be relied upon as authority for one's own decisions. In other words, what helps me might harm you and vice versa.

"Find people who are more interested in helping you to learn than teaching you what *they* think you need to know."
-- Robert Young, PCa Mentor
Phoenix 5

There is a lot to do.

(1) If applicable, I recommend having the biopsy specimens examined by
a pathology lab that specializes in prostate cancer (PCa). Everything
that is done from here on depends upon the accuracy of the Gleason
scoring. Here is a list of such labs:

Bostwick Laboratories [800] 214-6628
Dianon Laboratories [800] 328-2666 (select 5 for client services)
Jon Epstein (Johns Hopkins) [410] 955-5043 or [410] 955-2162
Jon Oppenheimer (Tennessee) [800] 881-0470
Scott Lucia (303)724-3470

This is a "second opinion" and should be covered by insurance/Medicare. The cost, last I heard, was about $500. More if further tests, which might be prudent, are ordered.

The chosen lab can give instructions on shipment arrangements.

In civilized jurisdictions, those specimens are the property of the
patient and not the medic, not the lab. Sometimes it is necessary to
educate them on that point.

(2) The authoritative website of the Prostate Cancer Research
Institute (PCRI) at http://www.prostate-cancer.org/pcricms/
is an excellent beginning.

See also http://www.prostate-cancer.org/pcricms/node/126 if newly diagnosed.

Some access to medics who specialize in treatment (tx) of PCa are listed via
this portal: http://www.prostate-cancer.org/pcricms/node/38

If a particular medic is not suitable due to distance (but there are men who travel thousands of miles for treatment) or otherwise, there is no harm and much possible gain in simply asking for a referral.

There are also men whose primary medic is some distance away, but who receive their routine treatment (tx) near home.

(3) I heartily recommend this comprehensive text on PCa: _A Primer on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide" by medical oncologist and PCa specialist Stephen B. Strum, MD and PCa warrior Donna Pogliano. It is available from the PCRI website and the like, as well as Amazon (30+ five-star reviews), Barnes & Noble, and bookstores. A lifesaver, as I very well know.

(4) Personal contact with other patients can be very helpful. Local chapters of the international support group Us Too can be found via
their website at http://www.ustoo.com/chapter_nearyou.asp

Regards,

Steve J

"Empowerment: taking responsibility for and authority over one's own
outcomes based on education and knowledge of the consequences and
contingencies involved in one's own decisions. This focus provides the
uplifting energy that can sustain in the face of crisis."
--Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled
"The Empowered Patient's Guide."
Posted 11/22/2010 2:49 AM (GMT 0)
VT She and He,

study a little, breath , and study some more, take a break and love each other, then breath. You two will come to the right desision for the both of you.

Best wishes for a good outcome on your journey.

Mike

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