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I'm new here and Have PC. High scores and Nervous - Only 44

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Posted 12/27/2006 7:20 AM (GMT 0)
All,

First bless you for responding.  about me...I'm 44 and a week ago I tested positive after a biopsy.  It was an unexpected experience as I never felt a thing. I went in for a physical in October and to talk about recent inconsistent ED.  My doctor prescribed Cialis and I am back in business.   He also took additional blood tests and that's when my PSA was discovered at 19.  After a close holiday with my wife and family, I have to schedule my surgery.  Scary thing as I'm sure you know.  My Dr. recommends a radical removal.  My wife and I lost a baby ten years ago and have had trouble trying to get it righted.  She is 39 and still with me on trying, but obviously our hearts are broken.  That stated much of the scores and PSA I have been reading here are much lower than mine.  If anyone who has similar scores could write I would appreciate it.  It seems that opting for radiation to prolong our baby options are not advisable.

TCNECLV

Age 44

4 of 8 samples (Left side is 80% right is 3+3 and 20%)

All but one >70% 3+4=7

PSA has been as high as 19, is a 13.5 today.

Bone Scan looked clean.

Attitude is good.

Wife is the best.

 

Post Edited (TC-LasVegas) : 12/27/2006 12:39:55 AM (GMT-7)

Posted 12/27/2006 9:04 AM (GMT 0)
Most men here will agree that, regardless of the treatment you choose, selection of your doctor is THE most important consideration and will have a huge influence on your ultimate long term outcome, and potential side effects. For example, should you choose surgery, a top surgeon can have his patient back home within days, with minimum side effects, whether he uses open surgery or robotic.

Gleason scores of 7, are not the most agressive score one can have, especially when it's 3+4 (as opposed to 4+3). Having said that, there are obviously other considerations to your full profile: a 2nd viewpoint can be worthwhile, and various treatments can offer similar or better potential outcomes depending on your exact situation and risk category.

Reading a good book on PC can give a good overall view. Many individuals including doctors sometimes have their own view on the "best" treatment, which might not necessarily be applicable to you, as everyone is different and we have various risk profiles.
I always suggest the importance of reading a good book on PC, like "Prostate Cancer Prevention and Cure" by Dr Lee Nelson who has survived high risk PC himself. His book is very comprehensive and covers all relevant aspects, treatment options, selectiing your doctor, lifestyle, diet etc.
Another is Dr Peter Scardino's Prostate Book. He is one of the top surgeons and he also covers diagnosis, side effects, and all treatment options. A lot of detail is devoted to surgery.

A few websites for further information and various treatmens include:

www.prostate-cancer.com which has treatment guides,
www.yananow.net which has a lot of information and stories from men who have used various treatments. Look under mentors experiences,
www.protonbob.com has stories from over 100 men who have undertaken proton treatment at Loma Linda.

Regarding fertility, perhaps a consideration could be sperm banking prior to treatment.

John
Posted 12/27/2006 6:20 PM (GMT 0)
I'm sorry to hear about your attempts to have children. But you also need to look at saving you own life first. Good luck with your decision.

KW
Posted 12/28/2006 6:06 AM (GMT 0)
I'm so sorry to hear about your PC.

I was also diagnosed recently with PC... 5 of 10 cores positive with both lobes showing cancer. 2 cores showed 62% cancer with perinerual invasion. my gleason score was also 3+4. My PSA was quite low however at 2.6 (it doubled over the last couple of years). I had a really interesting appointment with a radiology oncologist today, and learned a lot about brachytherapy (at the seattle prostate institute). these docs are top-notch and are the pioneers of this procedure. i am still deciding how to proceed, but i feel more encouraged after talking with him today. he did say that though it is a long shot, he has had a few patients who fathered children after the procedure.
i don't know where you live, but if you are considering brachytherapy, these doctors are at the top of the field. they are recommending seeds and external radiation for me because of the gleason score and the location of the cancer (at the base), and the presence of perineural invasion.
good luck to you and keep us posted. keep the faith
Posted 12/28/2006 3:25 PM (GMT 0)

Wow! Life sure throws us some curve balls now and then. Welcome to the club nobody wants to join. You are here, and there are a lot of caring sharing people to talk and vent with. I hope you will continue to share your experience as we all learn from each other. In the next few weeks you will become sort of an expert on PC. Only you can decide the best treatment for you. I opted for the DaVinci Robotic surgery and am doing extremely well, it will be three months January 12.  Aus is very correct in saying the doctor you choose is the most important factor in your treatment. Write down all your questions and ask everyone of them when you see the doctor. I don't know about the pregnancy issue, but I have seen it discussed and I think you can have your sperm stored for use at a later date. You will definately be on my thoughts and prayer list which is getting longer ever since I joined the club. God Bless You and welcome aboard.

57 years old, diagnosed  8-12-06, Davinci Surgery 10-12-06, 5 of 12 cores pc, PSA 4.3 Gleason 3+3+6 changed to 3+4+7 after surgery. Cancer confined to prostate gland.First PSA after surgery 0.01

 

 

Posted 12/28/2006 3:45 PM (GMT 0)
Hello TC LasVegas,

Can't really add much to what has been already posted, but I do wish to welcome you into our group, and offer you support when ever you need it. So please keep talking to us because we'll always be here for you.

God bless you and your family,

Glen
Posted 12/28/2006 5:11 PM (GMT 0)
I second Glen's welcome TC.

Some of that PSA has to be inflamation TC. 19 to 13 is a significant drop really. Just a question....did you take an antibiotic for at least 2 weeks to see just how much of that PSA may be atributed to infection/inflamation?

Get on board with selenium 200mcg everyday from now on. There is some good evidence from several studies it helps. Modified Citrus Pectin too. These are the 2 things I can think of that may make some difference in the long run. At least they are 2 that have been consistantly studied. Life Extension has a few good articles on both selenium and Pectin. Hang in there.

swim
Posted 12/29/2006 11:53 AM (GMT 0)

God Bless You tc-LasVegas, I had a gleason score of 7, same as you. Like aus said, do your homework on the doctor that will be doing whatever procedure you decide on. I believe that is the key for your future. You can freeze your sperm ahead of time. You can always adopt a child, my daughter adopted three. Wonderful, wonderful, grandchildren.  You have a full life ahead of you, this is just one of life's trials that some of us have to go through. Hang in there, we will be praying for you and your wife.

ed from pa

Jesus Christ Big C

cancer small c

Posted 12/29/2006 9:27 PM (GMT 0)
TC-LAS VEGAS,   My story is so similar to 56 Pontiac Its incredable same stats except I,m 59  and hd the open RADICAL PROSECTOMY.    GOOD LUCK and learn from here and everywhere    Shepla

Posted 12/30/2006 11:44 PM (GMT 0)
TC

I was diagnosed with PC at 49 years old.

All I can remember about the discussion with the doctor was "you have cancer . . . it still encapsulated in the prostate, is very virulent (because of my age) and thus needs immediate treatment, and that treatment should be surgery." Question regarding our sex life afterwards were answered with "I have to save your life first and we'll deal with the ED later."

My doctor was, by nature of his profession, quite pragmatic and narrowly focused on saving my life . . . "I'ts a good thing" :-)

He knew what he need to do for the immediate future but I had no idea what the near and distant future held for me and my wife.

Blessed with 4 kids at the time, additonal progeny weren't an issue. However, regaining a normal sex life presented significant challenges that were never really met and resolved. 

With regard to your concern for children, would it be possible to collect and store sperm before the surgery?

If I had to face the situation all over again, and knowing what I know today re long term effects of surgery, I would be very careful to evaluate all other alternatives to surgery so that I could make a more informed decision, Overwhelmed with emotion at the time, I accepted the doctor's recommendations as absolutes.

 

Posted 12/31/2006 1:47 AM (GMT 0)
Dear Tony, Ruth, and Loved Ones,                                            Sending a warm welcome …       I know we can “all” make your journey smoother just by being here for you!   This is a great forum !!! which you’ve joined… so stay with us and keep us up to date as to how your doing…     It helps “all of us” ~ to help you ~ if we know where you are on your path. So ~ Please stay with us and take our hand when you need it! Hope to hear from you soon…  Keep posting.... OKAY!!       Working together and making this a team journey will make you both stronger in every area of your life!!!                 “God Bless You”   It's a little prayer   ~   "God BlessYou" ...but it means so much each day, It means may angels guard you   and guide you on your way.   Take care and know our thoughts and prayers are with you. In Friendship ~ Lee & Buddy
Posted 1/6/2007 7:46 AM (GMT 0)
Thank you all for your wonderful responses. If you don't mind here's my weekly diary.

It's been a few weeks knowing I have cancer now.  Don't feel a thing that is wrong.  Totally no symptoms.  I guess that's good because I'm very active and making plans for surgery and a quick recovery.  I'm up early and excercizing more and am sleeping better thank's to Restoril.  I am going to Zion National Park in our RV with my wife and some friends this morning and will be returning tomorrow night.

I finally faxed all of my medical history to a great Dr. at the City of Hope in LA.  I understand him to be one of the best at the robotic procedure.  This is my 2nd opinion on treatment, and if concurred, I have my specialist and will go with him.  Looks like the first week of February.

I've decided to keep the RV engine running on the weekends while I await the surgery.  I helps me to keep the thoughts in check. 

God bless all of you.  I feel better reading your responses, and it's nice to talk to those who know what it's like to have this disease, and mostly keep a positive caring attitue.

TC - Las Vegas

Posted 1/7/2007 5:43 PM (GMT 0)
Hi TC-Las Vegas,   We realy enjoy the complete journey ~ thank you for sharing your weekly diary with us!   Yes… **   When prostate cancer is small and curable, it is also silent—it produces no symptoms.   That’s why it’s so hard to realize we are dealing with cancer ~ isn’t it.   Thankfully keeping our spirits up and keeping positive helps to maintain a healthy attitude   ~   in turn it will definitely add to the recovery/healing process.   We asked for a mild sleep aide also.   And it was perfect… allowing the mind to settle in the darkness…     Keep that motor running….. and enjoy the time traveling. J   When you nail down a specific date that first week of February… please let us know. Until then and until we hear from you again.   Our thoughts and prayers will be with you and your family. In Friendship ~ Lee & Buddy
Posted 1/7/2007 6:43 PM (GMT 0)
Hi TC,

Sorry to hear about your PC.

It is my understaning that a high Gleason (8-10) indicates a more aggressive cancer. Your Gleason is below this so it indicates a more "average" growing cancer. Given your age and your Gleason, you should seriously consider surgery. If you have surgery and if your cancer is 100% encapsulated (Partin tables can give you the odds of that) surgery offers the best chance of a cure.

Some other considerations. With surgery, they can actually exam / do pathology on your prostate. Also, they can remove and do pathology on lymph nodes. This allows the docs to learn a lot. With radiation, they do not get this ability to see exactly what was going on inside you and cannot be as sure that they got all the cancer.

It sounds like you are already leaning strongly towards surgery and that you have done some checking to find a top notch surgeon. Good for you. You are doing the right things. Good Luck.

Ben
Posted 1/11/2007 10:34 PM (GMT 0)
My Journey, Week four.
First...Congrats, Ben, on the double zeros last month. As I read more on the web I become more confused at times about this disease. My first reaction was actually quiet, inqusitive and confused. I remember my Dr. saying "you probably are hearing only part of what I've said after being told about the cancer..." but that wasn't my experience at all. I heard everything, understood it well, and was seemingly prepared after studying the initial PSA test and what it might mean. I guess that's my form of shock. Then I come back to earth and start processing the data again. Only 44, PSA 13.9, Gleason 7, treatment types, side effects, Dr's visits, etc. I ask, why does Ben have a much lower PSA but such a high Gleason? This is truly a mysterious illness. Luckily, I have an insurance company to, er, piss me off enough to keep me focussed. I am taking Cialis, and my insurance company has the prescription for it and after two of six refills had decided that now they won't honor this prescription. Also, they call it a "life-style" drug. The stopped sending it without notice and I ran out. Why do I tell this story? Because it was refreshing when I told it to my Doctors, they went in back and brought out samples galore. They understood, better than I did, the fear I was having about being this young and and the possiblility of impotence was affecting me more than I knew myself. Silly. I HAVE insurance, my wife says all she cares about is my HEALTH, my friends, like yourselves, are sharing incredible LOVE. I am actually very lucky. And besides, I can buy the darn Cialis myself. So for this week, my plans are still February surgery. January, is now, and I choose to have fun. At least as much as possible. I have also joined the Nevada Bluegrass Society after meeting some members at Zion NP. I play Dobro and guitar. Done so for over thirty years, but kept the day job. They don't know about my illness, and keep prodding me to join their bands. I like that. I think I'll keep my secret and just keep playing. Music really does provide me a healthy catylist that I trust. I just took on a new student also. I haven't done that in a while. My mind is now, I believe, healthier than ever. It's only been four weeks knowing that I live with cancer and I'm already tired of dwelling on it. Some of you are saying "my, he sure is in for some reality when he goes through treatment, and maybe depression". NOPE. Not me. When we lost our baby, (ten years, two days and about three hours ago), THAT was depression. This is just a bump in the road. I hope my story touches someone in a positive light. I keep reading the spots at this site. If for no other reason, it makes me feel better. Thank you Lee & Buddy, et al. I'll check in again next week. God Bless,

your friend,

Tony
Posted 2/5/2007 7:14 AM (GMT 0)
Hi ~ Tony *TC–Las Vegas,   Just wanted to touch base and let you know we are thinking of you and hope things are progressing positively for your surgery date… on February 16 th .   It’s been a while since you’ve updated so hope to hear from you soon!!      I missed your update on 1-11 and just found it so will respond tomorrow.   It’s 2:11 a.m. and I’m ready to hit the hay.   Shoot… if I stay up a few more hours I could catch the early worm and have time to sauté it for breakfast…      Take care, In Friendship ~ Lee & Buddy   Post edited to delete signature line only (helping to save space on the server!) Post Edited (bluebird) : 7/19/2007 8:21:24 AM (GMT-6)
Posted 2/5/2007 10:19 AM (GMT 0)
Hi Lee & Buddy,
I don't think I could eat saute worms for breakfast. a snack later maybe. :-)
Thank you for tracking me in the other threads. I leave for the City of Hope on the 14th for all the pre-op tests. They operate on the 16th. I did my research, took very much advice in this forum, chose my super doctor at a super place (City of Hope). COH actually worked the whole plan to accomodate the out of town patient. But a four hour drive isn't so bad and I have much of my family in the area. My selection is the da Vinci robotic. I am managing the ordeal by having pre op consultations with my local doctors this week. This to assure any after care i may require is in line with what COH prescribes.

I also rev up the RV this Thursday and head down to the Colorado River Bluegrass festival in Bullhead City, AZ near Laughlin, Nevada. I will enjoy the hell out of that weekend and then get on with it. Thanks again,

tc
Posted 2/6/2007 3:24 PM (GMT 0)
TC, good for you for enjoying life to the fullest. I don't know why I didn't see your post earlier. have you decided to freeze your sperm for future use? regarding cialis and insurance companies, ours does not cover it either. it's $12/pill, but we just had some delivered from alldaychemist.com, where they are about $1/pill. God bless you too....kat
Posted 2/7/2007 5:41 AM (GMT 0)
Thanks for the lead on the cialis. I continue to hit the accelerator on living. I am concerned about my pending surgery next week, but don't try to stop me. I play a mean guitar and live a great life. These things are scary but not unbeatable and hell I live in Vegas against the odds all the time. Thanks for checking in kat. I have seen your other postings elsewhere here, and Jeff is fortunalte to have you around, as I am with my Ruthie. God Bless, and mostly God Speed.

tc
Posted 2/9/2007 8:34 PM (GMT 0)
Hi ~ *TC–Las Vegas ~ Tony & Ruth,       ~~~~~~ #$%^&*     Group Hug %^&*(% ~~~~~~ From the 3 of us... Lee, Buddy, & Murphy   Just a little hug for both of you!!!   We want you to know we will be there ~ in thoughts and prayers as you travel on Wednesday to the City of Hope!   We will be sending extra strength your way…for surgery on Friday ~ February 16 th …   It made me smile to know you’d be having a Bluegrass festival the weekend before.   Good for you!!!   And ~ a nice trip to and from City of Hope in your RV (I hope)… if not don’t forget the donut / gel pillow to sit on J   I’ve re-read several of your postings… and I wanted to say thank you for sharing Your Journey with all of us.   You are so right about this being a bump in the road… We all have issues we’ve had to deal with over the years and some will feel this is a bigger bump ~ and that’s okay.   That’s why we always stress how important it is to share our journeys so others can realize that there is no set “exact” anything in this path with prostate cancer “except 1”.   Being cancer free which is the #1 goal… that we all strive for in this journey.   I respect you and Ruth for coming through your past travels with your love intact.   That’s what will add to your strength at this time.   Once things are behind you and things settle down a little… please let us know how she’s doing with regard to her health issues.   Just so you know…. We will be here for her also… she’s family too!!   Keeping you extra close in thoughts and prayers as we all move forward in life… In Friendship ~ Lee & Buddy                 “God Bless You”   It's a little prayer   ~   "God BlessYou" ...but it means so much each day, It means may angels guard you   and guide you on your way.
Posted 2/9/2007 8:48 PM (GMT 0)
Hi TC--read your thread from beginning and you helped---I'm 47, and my first PSA came in at 17. The biopsy had numbers close to yours 3+4=7 gleason etc. Robotic scheduled for 2/28---all the best to you on the 16th I'll be thinking of you. Just got a speeding ticket on the way to the surgeon for last check-up, anxiety level is all over the map--trying to turn it over to a power greater than myself-club cancer sure throws a mean curve ball. Dr. told me the extent of the cancer can only be measured once its out-I was trying to do all these calculations and just threw tham away.
Posted 2/9/2007 10:13 PM (GMT 0)
Thanks 1588,
I just reponded your thread because I saw your post on motelmat's. When you read my post on yours you may crack a smile. I mimicked your post here. Except I didn't get a ticket. I did worse. I own an RV, and just bought a new Suzuki Grand Vitara to tow behind it. it has 2000 miles on it and when I went to tow the other day I forgot to set the transmission settings to the correct tow configuration. Smoked it. 2k for repairs and not covered under warranty. Stupid on my part, but I am so close to the big day I just might be dangerous brushing my teeth. I explained my dilema to the Suzuki rep. He is trying to help out and will get back to me later today. But now I need to rent a car for 12 days to get to my surgery. LOL I am willing to trade the speeding ticket for my blunder. I am so much smarter than that, not to say above dumba**, but it shows that this does affect us in many ways. Thanks for your well wishes. Stick around for my posts through this experience as we will likely have many parallels.

Tony & Ruth
Posted 2/10/2007 4:45 AM (GMT 0)
Hi TC

My heart goes out to you in your situation. You are to be commended on your very positive attitude which is key to getting through this thing successfully. It sounds like you have been very blessed with a wonderful wife. I know this is a very sensitive issue, but have banked your sperm prior to the operation in hopes that maybe your wife can eventually get pregnant? I have a cousin who adopted a first child (a girl) because she just couldn't get pregnant after a long period of trying. Guess what--after the adoption she finally succeeded in having a baby of her own (a boy). Don't give up this dream, if possible. I wish you all of the luck in the world with your robotic surgery, including a quick recovery with few negative side effects. Let us know how everything turns out. God Bless!

Dave

P.S. Your music should provide great comfort to you--along with laugher, music is also the best medicine in life. Just for the record, there are no symptoms of PC in its early stages. I feel great too and would never know that anything is wrong with me.
Posted 2/11/2007 1:47 AM (GMT 0)
TC-- On the 16th I'll be flying over Hope en route to Mexico for a final week in the sun before d-day-I'll be thinking of you and a big high five from the sky-yeah I can handle the toothbrush but not the water pic--Feelin like a big C is tatooed/emblazoned on my forehead when talking to relatives or co-workers. My 19 yr old called today to ask my wife if I was not telling something because I'm acting all rosy and positive-I must be hiding something like the Reeper must be peeking in- my positive attitude comes from the guys here-with my wife driving me back from the hospital who knows how many potholes we'll hit-
GM
Posted 2/13/2007 6:38 AM (GMT 0)
Thank you mistake?
I have all my decisions made for this procedure, and believe I have a top notch doctor to do it at City of Hope.

TO ALL,
My journey begins tomorrow. I leave Las Vegas and will arrive in Laguna Beach, CA at my sisters house and get moved in. Wednesday will be my pre-op tests, and Firday, February 16, my surgeon goes to work. I will keep you all posted as the days progress and spirtually I can feel your support. I read every posting everyday, and don't have enough words to describe what you all mean to me. Bluebird, before you send your group hug to me, I want to send this to all of you:

God Bless you all. I shed a tear tonite because you have truly touched me and my family. All of you are my friends. I will always be influenced by this experience and the support I found here.

Please pray for me to lick this cold I have as it can push back my surgery if it not satisfactorly subsided. I am beginning to feel better and don't think it will be a problem, but your prayers have worked every time so far.

Tony & Ruth

PS: BenEcho Where are you? Hope all is well.
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