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Posted 2/13/2007 12:00 AM (GMT 0)
Hello everyone - at Bluebird's suggestion I'm posting and will give our background.  As I write this "myman" is practicing his guitar in his office and I like to be able to hear him as I write...I don't know...makes it seem easier I suppose.

The cancer was discovered during a routine physical (hadn't had a complete one in 4 years...yeah, I know) and confirmation of PC came with the biopsy.  Stunned, well, because why would we be thinking of prostate cancer?  Myman was in great health...not one symptom.  We were on a job assignment in the Northeast and though we really liked the doc's there we knew we had to be near family so we came home.  Moffitt Cancer Center gave the same diagnosis and so surgery was scheduled for 2/09/06.  Myman's recovery went well and in April he walked our youngest down the aisle as planned.  Time for the first 3 month PSA, which we were confident would be excellant.  But this must be a mistake, this is totally wrong...we knew nothing about failure after RP...PSA 11.8?  No. No. No.  Another test and the result was 12.9, then 13.9. I cannot tell you how crushing to our spirit this was. 

Options discussed: go on hormone therapy now or wait until the cancer shows elsewhere.   By 8/23/06 the PSA was 18.85 with lymph node involvement identified so at that time 3 month lupron shots started. The first PSA following was .8 and the next test is 2/28. 

Now that being said please let me say that we're okay now.  Myman is a positive, strong, intelligent guy who wakes up thankful for every day and is living his life to the fullest.  We go flats fishing alot, he and our sons built a recording studio and that youngest daughter he walked down the aisle...well, the baby is due in May. We've been married almost 42 years and intend to be married quite a few more! 

So, we see hope all around us and really, it's all perspective, isn't it?  When I read through so many posts and everyones stats I thought "Holy Cow...I see no one here who has stats like myman...maybe I shouldn't even post."  But I was continually drawn here and it felt right.  So, here we are...hopefully looking to the future with a new group of friends! 

 

Posted 2/13/2007 1:39 AM (GMT 0)
myman

thanks for your kind words to me that you posted elsewhere.

i am deeply sorry to hear about your man (who i am assuming is your husband or partner). he was obviously in a later stage of PC. however, radiation is always a possibility after surgery. i noticed that his PSA is now .8, but i assume that is only because of the lupron treatments which can bring the PSA down to low levels as it slows the cancer, but it does not eradicate it. as he probably well knows at this time, hormone therapy is not pleasant. i don't know where you live, but you should at least try to look into proton therapy as a "salvage treatment" even if you have to travel to the nearest proton therapy center. i know that unsuccessful surgery has led patients to resort to radiation therapy (proton therapy is considered safer than x-ray therapy). they have done post-surgery proton therapy at loma linda university medical center, which has been doing proton therapy for prostate cancer patients since 1990 with great documented success. there are now several newer proton centers around the united states. i have just posted my own log on proton therapy which repeats of lot of information on proton therapy which i had posted previously elsewhere--you might want to refer to it again.

my great concern in your man's case is whether or not he is getting the best medical advice from the best doctors for his present state of PC. i STRONGLY urge you to have your man consult with a top radiation oncologist to determine if there is any possibility that his remaining cancer can be eradicated with radiation therapy. the hormone therapy alone will not eradicate his cancer and it can ultimately spread. i seem to recall that the lymph nodes, if cancerous, can possibly be treated with x-ray radiation. depending on the stage of cancer, even some proton radiation centers will give the patients a combination of proton and x-ray radiation to hopefully eradicate the cancer.

let us know how he progresses and what further action you take. this kind of information is extremely important to other PC patients, especially the outcome of PC patients who are not in the earliest stage of cancer which obviously is the most difficult to deal with. god bless and good luck to you and your man!

Dave
Posted 2/13/2007 1:54 AM (GMT 0)

pcdave,

Thanks so very much for your reply...I'm going to look into this right away and will definately let you know how we're doing.

On another note -  (I believe you'll know how I mean this) do you think results like we (myman is my husband) have makes others fearful?  Actually that's what kept me from posting for a while and I am curious.

Thanks in advance.

Posted 2/13/2007 2:29 AM (GMT 0)
myman

your husband is so fortunate to have you as a wife! you must be a sweetheart! i think we need to have more postings from PC patients like your husband (or through their wives). I think that we need to scare all men into getting their PSA and DRE tests each year beginning at age 40 and hopefully prevent them from ever getting to the stage of PC that your husband has reached. if you scare anyone here, it is also good because it will motivate us to get the best treatment we can for our PC so that we will hopefully have a good chance at a cure and not progress into a higher risk stage eventually. we are here to help and it is cases like your husband's, that i want to help most. i have been very fortunate to live near major medical centers and to have access to some of the best doctors. i realize that many PC patients do not always have this advantage because they live in smaller towns throughout the U.S. often they will settle on local doctors who may not have the experience or expertise of the top doctors in major medical centers, because it is not convenient or is too costly to travel to a top medical center. this breaks my heart because it can make the difference between surviving this dreaded disease or not surviving it. you should not fear doing anything that may help your husband, including posting to this wonderful PC message board. "bluebird" is the "Pearl Mesta" (who was known as "the hostess with the mostest') of this website with her encouragement, good advice, welcoming words and spiritual bent--she sets the tone for the kind of website this is. you will hopefully find others here who will reach out to you and your husband. stay with us and pour out your thoughts, emotions and questions. i hope that your husband can eventually achieve some happy results with the right help.

Dave
Posted 2/13/2007 2:48 AM (GMT 0)
pcdave - a most, most heartfelt thanks, that was exactly what I needed to hear. Bless you!
Posted 2/13/2007 3:32 AM (GMT 0)
myman

glad to help in any way i can! part of my mission since getting PC is to help others with this unfortunate condition. it also keeps my mind off of myself! you said that your husband was treated at the Moffitt Cancer Center which I believe is in Tampa, Fl. i hope that you can find someone here who has had surgery that failed to eradicate the cancer and followed up with subsequent radiation treatment (either IMRT/IMGT x-ray or proton) to hopefully offer you some encouragement. if we have members in your area, hopefully they can make some good suggestions.

it would be helpful to me and perhaps other members to have answers to the following questions, in order to offer you more helpful advice:

--what did his surgeon advise him to do when it appeared that his cancer was not eradicated with surgery (i.e., high PSA readings subsequent to surgery)?

--you indicate lymph node involvement now--why weren't they tested and removed during surgery which is often the case?

--when it was discovered subsequent to surgery that cancer existed in the lymph nodes, what did the doctor say about eradicating the cancer in the lymph nodes?

--you indicate that the advise was to start lupron treatment or wait until the cancer appears elsewhere. what in the world is meant by that--why would anyone suggest waiting until the cancer appears elsewhere when it is obvious that all of the cancer was not eradicated after surgery?

--there are diagnostic imaging tests, although not perfect, which can help to locate cancer beyond the prostate. did the doctors suggest any such tests to possibly pinpoint where the remaining cancer is other than in certain of the lymph nodes? refer to these websites: http://www.prostate-cancer.org/education/staging/Kipper_ProstaScintUpdate.html
http://www.cancer.org/docroot/NWS/content/update/NWS_1_1xU_Test_May_Detect_Recurrent_Prostate_Cancer_Earlier.asp

--who advised him to have hormone treatments?

--what did they tell him to expect from the hormone treatments?

--what did they tell him that the hormone treatments would do to help him overcome the cancer?

--how long did they expect to keep him on hormone treatments?

--did any doctor suggest radiation treatments when it appeared that the cancer had recurred (i.e., why did they resort only to hormone treatments)?

the nearest proton center to you is in jacksonville, at the university of florida proton therapy institute which opened in 2006. i suggest that you visit their website: http://www.floridaproton.org/about-cancer/prostate-cancer.html.
there is contact information on the website. you may want to eventually phone them, give them an overview of your husband's condition and discuss with them whether or not proton radiation therapy (possibly combined with x-ray therapy) could help him now. as i mentioned to you previously, hormone therapy is not going to eradicate his cancer (it will hopefully slow it down), and that is why i would like to know if radiation therapy was suggested to him and if not, why not?

Dave
Posted 2/13/2007 4:57 AM (GMT 0)
myman,

The best thing you both have going for you (besides finding the best Oncologist possible) is your great attitude. When I was Diag. I had a friend who is one of the top Pathologist in the US. After looking at the slides she told me to to be prepared for the worst. She knew I could handle it, so she told me to get all my affairs in order so I would not have to deal with them at a later date.

When I left there I was devastated. With all the stats from the slides, all docs where sure it had spread and they were all ruling out surgery. The Bone Scans were neg. so I insisted on the surgery against advice. It had not spread.

My point is never mind what is pointing to what. While you must deal with it and make educated Medical decisions, your man is going to be fine. I ran Academic Physicain practices for over 15 years, and I cannot even count the times a Doc attributed a patients succesfull outcome to a positive attitude, when all odds were against them.

I sat down months before my surgery and decided I was going to be around for a long time. I can't tell you that is why I had such a favorable outcome (up to now, I go for my 6 month PSA this Thur) but I sure as H--- believe it helped.

I believe your man will be around to see his grandchildren walk down the aisle. Just be positive and keep everybody informed.

Best of the Best

Eric
Posted 2/13/2007 6:12 AM (GMT 0)
MyMan,   Quitar Man J   &   Loved Ones,        Thank you so much for ~   Caring Enough to Share Knowledge is Power Thank you for sharing “Your Journey”   (Knowledge) and helping “all of us” to gain the “Power” to (take away the fear!)                A    “Special”   Warm Welcome   to   You!     This is truly a great forum!!! ~ You have joined! You are now part our forum family ~ a group of wonderful individuals who are so willing to share their journey .   Partial Quote from above posting….by MyMan! …do you think results like we (myman is my husband) have makes others fearful?   Actually that's what kept me from posting for a while and I am curious.   Here is your answer sweet lady….   KNOWLEDGE IS POWER... and POWER conquers fear   Without knowledge of what we are up against…. There is no power…. only fear. Your experience will help all of us now and in the future.   The ultimate goal is to be prostate cancer free.   We don’t all reach this goal as planned ~ so we will need to continue reaching out as far as we have to ~   and the sharing of as many journeys on this forum is vitally important.   Knowing the different options that are available will help guide all of us to the right treatment when/if we have to start looking for other options.   Plan B…   This forum is filled with powerful information.   This is the first step in researching the options that are out there.   With folks like John *jeb187chs, Bill *Jetguy, JustJulie, Dave *pcdave, and many more …. You are all broadening our scope and continue to take away the fear by sharing.   This journey with prostate cancer is best traveled with friends…. I’m glad you became our friend…   Stay with us and let us help you ~ as you are unquestionably helping us!!!   Our thoughts and prayers are with you. In Friendship ~ Lee & Buddy
Posted 2/13/2007 1:22 PM (GMT 0)
myman's wife - thank you for posting and sharing your journey. there are others here who have had recurrences or found out that the cancer was not removed by surgery. all of us learn from each other, no matter what our circumstances are. I also believe that having that positive attitude will take you further than any medicine can. God bless, kat
Posted 2/13/2007 1:40 PM (GMT 0)

Dear myman, as you have already seen, no honest and caring post will be judged in a negative manner here.  If there is love in your heart you can do no wrong to those who feel the same.  I am truly sorry that you have had such unhappy news.  What a low blow.  Please read some of benecho10's posts to learn how he is dealing with news that he didn't want to hear.  I hope that it helps you.  While you are busy putting on a brave face for the rest of the world, this is a good place to let off some steam.  I highly recommend it. 

Regards,

Bill

Posted 2/13/2007 2:20 PM (GMT 0)
myman,

While this site is a very good site for information for those with PC what keeps it from being a great site is the lack of balance between the different PC conditions and treatments. Your decision to post will help move this site further down the path to being great. I am sure that there have been many lurkers that have looked at this site for a situation such as the one that you have posted and have gone away because they did not find one. Thanks for the post. Not only is it helpful with information it is also filled with positive energy.

Tamu
Posted 2/13/2007 3:07 PM (GMT 0)
good morning myman

i have done a little research on the internet this morning thinking about you and your husband. here is the beginning of an interesting study which may give you some hope.

"Radiation saves lives of patients with prostate cancer relapse

If prostate cancer returns after a man has undergone surgery to remove the tumor and the prostate gland, many physicians worry that further treatment will not help.

A recent study led by Kevin M. Slawin, MD, a professor in the department of urology at Baylor College of Medicine in Houston and director of the Baylor Prostate Center, showed that radiation treatment can be beneficial in treating even men whose tumors are extremely aggressive. Other centers involved in the study included Memorial Sloan-Kettering Cancer Center in New York, The University of Texas Southwestern Medical Center in Dallas, Cleveland clinic and the University of Florida at Gainesville."

you can read the rest of the article at the following website: http://www.bcm.edu/findings/vol2/is3/04mar_n5.htm

i believe that Dr. Slawin at Baylor is considered a top notch prostate cancer expert. you will note that the university of florida (where i mentioned the new proton center) was also involved in the study.

Review these news clips featuring Dr. Slawin under the title of Salvage Radiation Therapy Described on CNN and ABC World News Tonight.
Go to his website: http://www.drslawin.com/news.html#

if i can find any other information on the internet about radiation after surgery, I will send it to you. please let us know why radiation was not suggested to your husband soon after surgery failed, as evidenced by his high PSA readings.

Dave

P.S. I have updated one of my previous posts to you with the following information:

there are diagnostic imaging tests, although not perfect, which can help to locate cancer beyond the prostate. did the doctors suggest any such tests to possibly pinpoint where the remaining cancer is other than in certain of the lymph nodes? refer to these websites: http://www.prostate-cancer.org/education/staging/Kipper_ProstaScintUpdate.html
http://www.cancer.org/docroot/NWS/content/update/NWS_1_1xU_Test_May_Detect_Recurrent_Prostate_Cancer_Earlier.asp
Posted 2/13/2007 3:26 PM (GMT 0)

  Hello to all,

This is my frist visit to this site, an I am excited I found it!  53 year old with high grade pc.  In 03 had a psa of 113 and a gleason of 9.  Have been on lupron since then and started casadex 9-21-06 with a psa of 1.6 now. Supose to see Dr Fred Lee north of Detroit for a Doppler to find the true extent of the disease and to know what the appropriate treatment is.  Hope this snow storm lets up.  Was told by Doctors in my home town and at Mayo Clinic and Evaston that hormonal was it for me,  I say maybe not!  Have been reading abstact's from Doctor's saying surgery is showing benefit even when the disease is somewhat out of the capsule.  Has anyone had a Doppler exam?  Hoping for the best and looking for the best as they don't give much hope to us with what they call advanced pc.  The more I read and the more dig for info I realize just how many of us there really are and what a comfort it is to read about your experience's.  Thanks

Posted 2/13/2007 4:20 PM (GMT 0)
otto

yes, you have found one of the best PC message boards. never give up--research, research, research. whatever you find out about a color doppler test would be of great benefit to members. it is often used in conjunction with a biopsy before treatment, but it seems that it may well have benefit to someone like you who has advanced cancer in terms of locating where the cancer is and whether it could be treated with surgery and/or radiation. like most of these diagnostic imaging tests, the color doppler test is not 100% reliable. obviously the mayo clinic is considered one of the best in the country, but don't give up yet on treatments other than hormones. you are very young to be only on hormone treatment if any other treatment is possible. best of luck to you.
Posted 2/13/2007 4:56 PM (GMT 0)
  Thanks for the feed back!  And I agree,  research is one of the key's to your health.   
Posted 2/13/2007 6:37 PM (GMT 0)
Hi ~ Otto,   Welcome ~ new friend!    Thank you for joining us!   As your time permits…. Please start a personal thread so we can welcome you properly and we can then follow with you as you research for more answers.   This is how we all learn and teach each other.   Seeing your information on its own thread may lead to wonderful information that will add to your digging…   A nice title with Lupron & Casadex mentioned in it will help others as they search for specifics down the road.   See what happens when you reach out… Thread started by Pete… Pete’s Travel   (direct link ~ just click on the title!   Reminder to click on the REFRESH icon once there) Low testosterone count 2 years after PC sugury Take care and hope to hear from you soon on your personal thread!! We need you to stay with us!!!   Okay… and keep posting ~ too In Friendship ~ Lee & Buddy
Posted 2/13/2007 6:46 PM (GMT 0)
Hi MyMan….     We are so glad you joined us!!!   And you can see how important this thread is…from the reply postings…   Partial posting:   The first PSA following was .8 and the next test is 2/28.                     11/08/06: PSA  0.8   *&^%$#@     WOO HOO!!   (*&^%$#     Partial posting: Myman is a positive, strong, intelligent guy who wakes up thankful for every day and is living his life to the fullest.      This positive attitude is so important ~ when a stepping-stone gets a little wobbly.   The path you are on is best traveled with friends…. Thank you for allowing us to walk with you…   We can help to steady any slippery ones.   Helping Hands are always here…. And you’ve reached out…. So you know they are there for you and yours.   We will definitely keep you extra close in thoughts and prayers on 2/28. Please stay with us ~ and know we care.   In Friendship ~ Lee & Buddy
Posted 2/13/2007 7:55 PM (GMT 0)
Otto,

Welcome friend and thanks for sharing your experiences. I am guessing that you posted after reading myman's post. That is great and it is the way to move this forum toward another level. I am sure that others will see your post and hopefully they also will post. As Bluebird says, "Knowledge is Power", and that knowledge comes from sharing of experiences. If you have not been there here is a link to YANANOW which is another PC forum. There are some very good stories on this site by men with advanced PC. When you go to the site click on mentor experiences and scroll down. You will see stories listed by type of treatment.

http://www.yananow.net/

Once again thanks for coming on board.

Tamu
Posted 2/13/2007 11:03 PM (GMT 0)

Thank you so much for the warm greeting, Bluebird.

To all who welcomed me I can only tell you that I had to get off line for a cry.  (it was a in the “good” cry category)

I will continue to post and add whatever I can regardless of where we are in our journey…

 

I talked with myman this morning after our postings last night, pcdave.  He’s very interested in any research and looking into other ways of dealing with this. I felt it only right to have him aware of the direction this is heading and well, I believe in a person’s right to privacy so wanted him to know he would be discussed.  This is good and he trusts me implicitly.  I must say at this point although he wants to know what I learn he (in his own words) “cannot think about this all the time, it’s too much”.  So this is why we make a good team, yes?  And I know he’s not the only guy who feels this way…not to say he doesn’t make his own decisions, just that he has to keep his mind busy with non-prostate cancer things, you know?  It was a difficult discussion, emotional at times, but we have a better idea of what direction we’re headed in.

Anyway, I printed out your journey with prostate cancer, thanks for posting that.  Also, I’m going to go over your list of questions – answering them will make things clearer for everyone and for me!

And yes, pcdave I am a sweetheart!!!  Ha!

I’ll post back later.

Posted 2/14/2007 12:34 AM (GMT 0)
I agree with Dave's post from yesterday. More men need to be scared into having an anual exam. If my dad would have started having exams at 40, he would probably be alive today. My husband did and we have caught it early. Keep up the faith. Belief is half the battle! I believe this after watching my father's battle. My dad did both radiation and chemo with hormones. Both did a good job of lowering his PSA. Good luck to you both. Courtney
Posted 2/16/2007 9:25 PM (GMT 0)
Hi ~ Susan & Loved One,   I’m so happy you felt the love that we sent in our Welcome message…   your response means a lot!!!!   Thank you!     It truly is good to cry and let the pressure out… Please do me a big favor!!!   Read our personal thread   Murphy ~ Our Special Helper You may even have a little critter already in your home…. Use him/her      Tears are a wonderful way to help cleanse the spirit…   let them flow!   You are a great team..   Let him pull your strengths ~ you pull from his strengths and both of you pull from all of our strengths that we are sending to you!!!   Keeping you close as you continue your journey with “all of us” beside you!!!! In Friendship ~ Lee & Buddy
Posted 3/6/2007 7:01 PM (GMT 0)
J 03/07/07 - next PSA      Thinking of you and wanted you to know!!       Keeping you extra close at this time. In Friendship ~ Lee & Buddy
Posted 3/6/2007 9:44 PM (GMT 0)
Hey Mama Blue!
Thanks for the post, it's much appreciated.
Well, I've been following up on pcdave's (and others) words of wisdom and checking on other options that may be open to Don.
As you noted...tomorrow is the day and we have our list of questions ready.
We went fishing today on flats along the gulf and it was beautiful, absolutely beautiful. I'm so thankful we are where we are at this time in our lives...life is very good.

There are so many here who have a tough road to travel and this place is a God send, really. I've read posts from so many of the men who are loving, intelligent, brave and caring people, willing to take the time to reach out to others when they could be crying in their beer, or whatever beverage of choice! You know what I mean to say! And the women are strong, nurturing and loving, I appreciate that so much. Does anyone else understand my husband and I better? No and that's through no fault of their own but as someone here said "Welcome to the club that no one wants to join". You have to be a member to really get it.

Well, I've gone on...anyway, Lee, thanks...for everything.

Susan
PS - I was the only one to catch any fish today...I have no mercy!!!
Posted 3/6/2007 9:58 PM (GMT 0)
Dear Susan

So nice to get an update from you! I continue to think about you and your husband (your man!) often and the next steps for him in his journey with PC which has been difficult for both of you, to say the least. I always appreciate your lovely words of encouragement posted to my thread and wishing me well. I am moving along slowly but surely with my proton radiation treatments. I finished 9 of 40 treatments today! I have some urinary and bowel side effects which often occur with radiation, but they usually disappear after treatment. I have no real complaints--just happy to be getting on with my treatments. Keep us informed as to the progress your loving man is making. God Bless you both.

Dave
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