I'm New Hubby just been diagnosed /looking for best treatment

Evagirl
Evagirl Member Posts: 60
edited March 2014 in Prostate Cancer #1
Yeah here we are...


We so need a Real People Board that we can find real life information
and experiences from .... thats why I'm here...Hubby is not so internet
excited ...but he is a master at playing Free Cell!!

Hubby has had a high psa forever...2 negative biopsy's
then started having urinary problems...and necessitated
a turp... turp pathology reports showed 1 chip out of 40
positive ...then a biopsy that showed 6 out of 12 positive on
left side of prostate..with a gleason score of 6-7...

Now dr has offered us basically prostectomy or beam radiation

We are interested in the rad seeds, but I am hearing from different
sources that the seeds are not recommeded for someone who has recently
had a turp.....

I have found a big name Dr. Gregory Merrick is a miracle worker and can
do the seeds successfully on anyone

what say YOU????


P.s. oh did I mention that my DH is a fabulous 73? oh yeah~~
«1

Comments

  • Evagirl
    Evagirl Member Posts: 60
    #2
    *

    *
  • Trew
    Trew Member Posts: 932 Member
    #3
    Beginning
    I would suggest you read my posts under the Proton Sites and get Bob Mackinin's book on proton therapy. You will also be considering surgery, but remember, proton therapy can give the same results without surgery.

    By the time I got to where you DH is my case was already messed up, but if your husband still has a gleason of 7- take a hard look at proton therapy.

    Also note the thread on ED Therapy. This is a very real issue for post treatment. Incontinency is another issue. Surgery Vs proton or seeding. These are not easy choices.
  • Evagirl
    Evagirl Member Posts: 60
    #4
    Trew said:

    Beginning
    I would suggest you read my posts under the Proton Sites and get Bob Mackinin's book on proton therapy. You will also be considering surgery, but remember, proton therapy can give the same results without surgery.

    By the time I got to where you DH is my case was already messed up, but if your husband still has a gleason of 7- take a hard look at proton therapy.

    Also note the thread on ED Therapy. This is a very real issue for post treatment. Incontinency is another issue. Surgery Vs proton or seeding. These are not easy choices.

    Trew
    thank you for your
    Trew


    thank you for your comments

    I will check out those other posts

    and I will get back and let you know my reaction

    and yes the suggestion of surgery has not totally gone away yet...sigh...

    keep the chin up though as we say~~ I will check out the ED thread too
    all is of much interest to us humans :-)
  • Trew
    Trew Member Posts: 932 Member
    #5
    Evagirl said:

    Trew
    thank you for your
    Trew


    thank you for your comments

    I will check out those other posts

    and I will get back and let you know my reaction

    and yes the suggestion of surgery has not totally gone away yet...sigh...

    keep the chin up though as we say~~ I will check out the ED thread too
    all is of much interest to us humans :-)

    Those weeks after biopsy are
    Those weeks after biopsy are some of the worse weeks in this process. You are in decision time. problem is what you decide to do will have lasting effects on your husband's life and yours. So spend time, read, look at your options. And you get to do all this with a sick feeling in the pit of your stomach with an added pinch of fear. That is how it is. You have to make a very intellectual decision that is mostly driven by raw emotion. Hardly fair, but you now get to kiss fair good-by and you have to deal with a new reality of cancer. I wish you well.
  • lewvino
    lewvino Member Posts: 1,010
    #6
    Welcome to our forum. You
    Welcome to our forum. You have found real life people here all that have been down the road ahead of you and your DH. You said that DH is 73....Some doc's wont consider the Prostate surgery at that age so keep that in mind also.

    Read as much as you can and ask us questions! We are not doctors here just patients or spouses, significant others etc of patients.

    I had the Davinci surgery with 5 out of 12 cores positive Gleason 7. I'm doing well at 7 months post surgery.

    Best wishes on your research and final treamtent.

    Larry (age 55)
  • Evagirl
    Evagirl Member Posts: 60
    #7
    Trew said:

    Those weeks after biopsy are
    Those weeks after biopsy are some of the worse weeks in this process. You are in decision time. problem is what you decide to do will have lasting effects on your husband's life and yours. So spend time, read, look at your options. And you get to do all this with a sick feeling in the pit of your stomach with an added pinch of fear. That is how it is. You have to make a very intellectual decision that is mostly driven by raw emotion. Hardly fair, but you now get to kiss fair good-by and you have to deal with a new reality of cancer. I wish you well.

    Hi again Trew
    Thing of
    Hi again Trew


    Thing of it is we have been down this road before in 2003-2004...we went thru Breast C...(see I cant even write that word) so I am 7 yrs out now...
    But you are so right about the sick feeling ... cant stand the thoughts of DH being in pain ..etc.... thanks...I have already read those threads you recommended....Just more info under my belt on the way to informed decisions....

    I love hearing from real people....:-)
  • Evagirl
    Evagirl Member Posts: 60
    #8
    lewvino said:

    Welcome to our forum. You
    Welcome to our forum. You have found real life people here all that have been down the road ahead of you and your DH. You said that DH is 73....Some doc's wont consider the Prostate surgery at that age so keep that in mind also.

    Read as much as you can and ask us questions! We are not doctors here just patients or spouses, significant others etc of patients.

    I had the Davinci surgery with 5 out of 12 cores positive Gleason 7. I'm doing well at 7 months post surgery.

    Best wishes on your research and final treamtent.

    Larry (age 55)

    Hi Larry
    Thanks for the
    Hi Larry

    Thanks for the welcome

    I hear what you are saying about the age and surgery...DH...is a tower, but a little more delicate than 20 yrs ago :-)

    Please what is the Davinci surgery ???? Is it a smaller surgery???


    I appreciate all of the oponions I am hearing here and experiences...It is invaluable to me and I realize they are not medical oponions....I am sure that I will get all of the medical oponions in the near future :-)
  • Trew
    Trew Member Posts: 932 Member
    #9
    Evagirl said:

    Hi again Trew
    Thing of
    Hi again Trew


    Thing of it is we have been down this road before in 2003-2004...we went thru Breast C...(see I cant even write that word) so I am 7 yrs out now...
    But you are so right about the sick feeling ... cant stand the thoughts of DH being in pain ..etc.... thanks...I have already read those threads you recommended....Just more info under my belt on the way to informed decisions....

    I love hearing from real people....:-)

    The Word Unspoken
    I can understand the difficulty in saying the word, too. I found a video on You tube connected with Movember that featured sme men beating up prostate cancer with a board and a crowbar. I watched it dozens of times- it just made me feel good somehow. I wanted to hit the old PC myself, which I am doing with rad and drugs and surgery. But sometimes it seems like I am hitting a brick wall with my fist and I don't know who is getting hit the hardest, me or the cancer.

    "It" is a nasty condition- no doubt about that.

    See if you can copy paste this:

    http://www.youtube.com/watch?v=He_Ie5Mi6xA
  • lewvino
    lewvino Member Posts: 1,010
    #10
    Evagirl said:

    Hi Larry
    Thanks for the
    Hi Larry

    Thanks for the welcome

    I hear what you are saying about the age and surgery...DH...is a tower, but a little more delicate than 20 yrs ago :-)

    Please what is the Davinci surgery ???? Is it a smaller surgery???


    I appreciate all of the oponions I am hearing here and experiences...It is invaluable to me and I realize they are not medical oponions....I am sure that I will get all of the medical oponions in the near future :-)

    The Davinci Surgery removes
    The Davinci Surgery removes the prostate but rather then large open incision it is done by control of the Doctor using robotics. They make five small incisions and insert tools, cameras etc in the incision for the surgery. If you choose Davinci look for a surgeon with 1000's of these procedures. It has a very High learning curve. Since it is using robotics, cameras etc.

    Typical Hospital stay is 1 night with Davinci. DH will go home with a catheter and some men have trouble regaining urine control and sexual ability. Age and other factors play into it all so you have to decide on what is best.

    You can google Davinci.

    Just remember you have lots of choices to make so study up on them all then make the decision on what you think is best.

    Larry
  • chorton581
    chorton581 Member Posts: 15
    #11
    surgery
    here is a good article from mayo
    http://www.mayoclinic.org/robotic-prostatectomy/about.html

    I had my surgery done there a few weeks ago and feel great. I can recommend my DR if your interested in exploring the davinci.

    I did tons of research on the subject and found it to be the best route for me.
  • Evagirl
    Evagirl Member Posts: 60
    #12
    lewvino said:

    The Davinci Surgery removes
    The Davinci Surgery removes the prostate but rather then large open incision it is done by control of the Doctor using robotics. They make five small incisions and insert tools, cameras etc in the incision for the surgery. If you choose Davinci look for a surgeon with 1000's of these procedures. It has a very High learning curve. Since it is using robotics, cameras etc.

    Typical Hospital stay is 1 night with Davinci. DH will go home with a catheter and some men have trouble regaining urine control and sexual ability. Age and other factors play into it all so you have to decide on what is best.

    You can google Davinci.

    Just remember you have lots of choices to make so study up on them all then make the decision on what you think is best.

    Larry

    Larry
    Sounds like you did
    Larry

    Sounds like you did very well w/the Davinci surgery...amazing technology..
    I hear you about finding a surgeon with 1000s of the surgerys under their belt~
    I am sure that is what you did...
    we have been asking God for guidance and we found this site :-) so Yippee I say~

    as you say , I have begun to study and what I have read thus far excites me and dissapoints me at times.. so it is definately no easy decision making...
    we are working on getting an appointment with a radiologist and then a specialist also...
    I am going to begin to ask the hard questions about what is the best recommendation for my DH's particular case and why? and why not a particular procedure.

    All in all DH has a very positive additude.... and the wknd is hear which always seems to cheer me up...Dinner out and a wknd of relaxation. (I hope).
  • Evagirl
    Evagirl Member Posts: 60
    #13
    chorton581 said:

    surgery
    here is a good article from mayo
    http://www.mayoclinic.org/robotic-prostatectomy/about.html

    I had my surgery done there a few weeks ago and feel great. I can recommend my DR if your interested in exploring the davinci.

    I did tons of research on the subject and found it to be the best route for me.

    So Chorton ...You feel

    So Chorton ...You feel "Great"??? That is wonderful...
    we will definately keep that in mind...

    Are you allowed to mention Dr's names on here?


    personally I dont see why not, how else do people get
    references?

    Hope our pic shows up...I just uploaded it~
  • Evagirl
    Evagirl Member Posts: 60
    #14
    lewvino said:

    The Davinci Surgery removes
    The Davinci Surgery removes the prostate but rather then large open incision it is done by control of the Doctor using robotics. They make five small incisions and insert tools, cameras etc in the incision for the surgery. If you choose Davinci look for a surgeon with 1000's of these procedures. It has a very High learning curve. Since it is using robotics, cameras etc.

    Typical Hospital stay is 1 night with Davinci. DH will go home with a catheter and some men have trouble regaining urine control and sexual ability. Age and other factors play into it all so you have to decide on what is best.

    You can google Davinci.

    Just remember you have lots of choices to make so study up on them all then make the decision on what you think is best.

    Larry

    checkout out Proton therapy

    Larry

    I have been viewing the video's at Loma Linda about Proton therapy and I was
    wondering if you had considered Proton t. before you made your decison for
    surgery?
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #15
    Hi, sorry that you have joined this exclusive club
    Remember that prostate cancer is a very slow growing disease so you are not in a rush to take action, but you need to keep busy doing research.

    It would be a good idea for you to let us know where you live....those of us who might be in your area can give specific recommendations about doctors, support groups , etc.

    In your biopsy, you mentioned 6 of 12 were positive; what was the involvement in each and the gleason of each-----please give full numbers 3+4=7 or 4+3=7----there is a difference between these two 4+3 more aggressive than 3+4.

    It is also a good idea to get a second opinion of the parrifin blocks in the biopsy by an expert in the field.....dr epstein, johns hopkins is a good choice,,,,,simply have your doc office send the slides......it generally covered by insurance such as medicare.

    Ira
    southern california
    Active Surveillance
    Diagnosed 3/09 for 66 birthday
    By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
    PSA's had been at 2.26/2.27 for a few years
    Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
    second opinion john hopkins
    4/09 MRI with spectroscopy, no nodule involvement, staged t1
    Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
    PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0
  • lewvino
    lewvino Member Posts: 1,010
    #16
    Evagirl said:

    checkout out Proton therapy

    Larry

    I have been viewing the video's at Loma Linda about Proton therapy and I was
    wondering if you had considered Proton t. before you made your decison for
    surgery?

    Evagirl,
    Yes I considered
    Evagirl,
    Yes I considered Proton. Actually it was my first Choice. My dad was treated with Proton for his prostate Cancer in 1997 at Loma Linda and is doingwell today 12 years later.
    Mine was a borderline case with Gleason 7 where they would mix Proton and radiation. My insurance denied treatment with Proton so i would have had to pay out of Pocket. I could not justify in my mind paying out of pocket plus after much prayer, etc I strongly felt that I was being led to Robotic Surgery with Dr. Smith at Vanderbilt in Nashville Tn.

    If you consider Proton there are about 6 centers in the USA now that offer Proton. As stated my first choice was Loma Linda since they have the most experience with Proton plus 7 or so weeks of treatment in Southern California is a nice area! LOL. Also my wifes brother works at Loma Linda so I had even arranged to stay with him duing treatments.

    If you or you husband ever want to talk via phone or private email just let me know.

    Larry
  • lewvino
    lewvino Member Posts: 1,010
    #17
    Evagirl said:

    Hi again Trew
    Thing of
    Hi again Trew


    Thing of it is we have been down this road before in 2003-2004...we went thru Breast C...(see I cant even write that word) so I am 7 yrs out now...
    But you are so right about the sick feeling ... cant stand the thoughts of DH being in pain ..etc.... thanks...I have already read those threads you recommended....Just more info under my belt on the way to informed decisions....

    I love hearing from real people....:-)

    EvaGirl,
    Just noticed that
    EvaGirl,

    Just noticed that you were treated for breast cancer. My mother was treated for breast cancer two years ago and my dad for prostate cancer in 1997. You sure you are not related to Me?
    Laughing out Loud..... If you have any male children encourage them to get tested. They are finding links between the two cancers and putting male children into higher risk factors for getting Prostate Cancer. I was getting tested yearly after finding out about my dad's.
    Then wam at age 54 they found it.

    Larry (Age 55) 7 Months post davinci surgery
  • erisian
    erisian Member Posts: 107
    #18
    hopeful and optimistic said:

    Hi, sorry that you have joined this exclusive club
    Remember that prostate cancer is a very slow growing disease so you are not in a rush to take action, but you need to keep busy doing research.

    It would be a good idea for you to let us know where you live....those of us who might be in your area can give specific recommendations about doctors, support groups , etc.

    In your biopsy, you mentioned 6 of 12 were positive; what was the involvement in each and the gleason of each-----please give full numbers 3+4=7 or 4+3=7----there is a difference between these two 4+3 more aggressive than 3+4.

    It is also a good idea to get a second opinion of the parrifin blocks in the biopsy by an expert in the field.....dr epstein, johns hopkins is a good choice,,,,,simply have your doc office send the slides......it generally covered by insurance such as medicare.

    Ira
    southern california
    Active Surveillance
    Diagnosed 3/09 for 66 birthday
    By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
    PSA's had been at 2.26/2.27 for a few years
    Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
    second opinion john hopkins
    4/09 MRI with spectroscopy, no nodule involvement, staged t1
    Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
    PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0

    Don't Rush
    I'll second that advice. It's hard to do, because you feel that it needs to be treated NOW, but given DH's age and history, his PCa is probably slow-growing. And you say that his PSA has been high "forever". What are the numbers and dates of the last two or three?

    The absolute number of the PSA is not as important an indicator of prognosis as the PSA doubling time, which is to say the direction and rate of change. If the PSA doubling time is long, then the cancer is not aggressive. I have an aggressive case, and I have had a PSADT of less than 90 days at times. A PSADT of 12 months or more is considered slow, as I recall.

    The less aggressive the cancer is, the less aggressive the treatment should be. I don't mean to add to your confusion, but this is something you should know about:

    http://dartmed.dartmouth.edu/winter09/html/disc_overdiagnosed.php
  • Evagirl
    Evagirl Member Posts: 60
    #19
    lewvino said:

    EvaGirl,
    Just noticed that
    EvaGirl,

    Just noticed that you were treated for breast cancer. My mother was treated for breast cancer two years ago and my dad for prostate cancer in 1997. You sure you are not related to Me?
    Laughing out Loud..... If you have any male children encourage them to get tested. They are finding links between the two cancers and putting male children into higher risk factors for getting Prostate Cancer. I was getting tested yearly after finding out about my dad's.
    Then wam at age 54 they found it.

    Larry (Age 55) 7 Months post davinci surgery

    Hi Larry~~

    well the one thing good I can say about this is that we
    are not Rookies at the experience...(not sure thats a good
    thing though) LOL~~~
    My mom ended up with a double mascetomy, She did just fine
    with it ....one of my sister also had a mascetomy...and now my
    Hubby...My thought is that more men have it than really know about
    it...

    Good thing for you that you were testing...the early found the
    better choices of treatment...is what I think, just curious, how was your dad
    treated?
  • Evagirl
    Evagirl Member Posts: 60
    #20
    erisian said:

    Don't Rush
    I'll second that advice. It's hard to do, because you feel that it needs to be treated NOW, but given DH's age and history, his PCa is probably slow-growing. And you say that his PSA has been high "forever". What are the numbers and dates of the last two or three?

    The absolute number of the PSA is not as important an indicator of prognosis as the PSA doubling time, which is to say the direction and rate of change. If the PSA doubling time is long, then the cancer is not aggressive. I have an aggressive case, and I have had a PSADT of less than 90 days at times. A PSADT of 12 months or more is considered slow, as I recall.

    The less aggressive the cancer is, the less aggressive the treatment should be. I don't mean to add to your confusion, but this is something you should know about:

    http://dartmed.dartmouth.edu/winter09/html/disc_overdiagnosed.php

    to erisian

    erisian,

    I am hearing what you are saying about the not rushing...
    When I was diagnosed with BC in 2003..I felt like I had to get into the surgery the next day...ha ha....but I eventually did 2 rounds of chemo first to shrink the tumor...then surger and two more rounds...
    about my DH's PSA it has been high over the last 10 years... and I am talking a average of 15 ....yeah, I know that is high...but there have been no sudden jumps..just a very very slow increase...and 2 negative biosy's

    I do understand what you are saying..about the less aggressive treatment...
    we are backpedalling on the radical surgery...even though we know our urologist would
    like him to choose that...we are going to our primary care dr tuesday to get his imput
    then to the radiologist and also a specialist...

    I am learning a lot already from these boards

    thank you all so much~
  • Evagirl
    Evagirl Member Posts: 60
    #21
    hopeful and optimistic said:

    Hi, sorry that you have joined this exclusive club
    Remember that prostate cancer is a very slow growing disease so you are not in a rush to take action, but you need to keep busy doing research.

    It would be a good idea for you to let us know where you live....those of us who might be in your area can give specific recommendations about doctors, support groups , etc.

    In your biopsy, you mentioned 6 of 12 were positive; what was the involvement in each and the gleason of each-----please give full numbers 3+4=7 or 4+3=7----there is a difference between these two 4+3 more aggressive than 3+4.

    It is also a good idea to get a second opinion of the parrifin blocks in the biopsy by an expert in the field.....dr epstein, johns hopkins is a good choice,,,,,simply have your doc office send the slides......it generally covered by insurance such as medicare.

    Ira
    southern california
    Active Surveillance
    Diagnosed 3/09 for 66 birthday
    By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
    PSA's had been at 2.26/2.27 for a few years
    Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
    second opinion john hopkins
    4/09 MRI with spectroscopy, no nodule involvement, staged t1
    Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
    PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0

    Hi Hopeful

    Hopeful

    I am not sure about the scores..yet...all I got from our urologist was that
    the 12 plugs from the biopsy showed 6 negatives on the right side and 6 positives
    on the left side...on the gleason score ...they were 2@6 and 4@7 he said they graded on a 5 to 10 scale, so he put him in the medium range (whatever that means)
    they did do a bone scan and it was clear...fine....

    sounds like your scores are low and very early stage...
    so have you decided to do anything or just watch ???

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