Newly diagnosed Prostate Cancer

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Comments

  • NM
    NM Member Posts: 214
    #22
    hopeful and optimistic said:

    Hi
    All of us here have gone thru shock, depression and all the negative feeling during the first month or so..........Remember, generally in the vast majority of cases there is no rush to make a decision right away....however you need to keep moving to make the right decision and not hurt yourself.................good luck...............Ira

    Sent mine to John Hopkins
    I sent my samples to John Hopkins for a second opinion after my wife emailed them. Was told w/o insurance it would run 250.00 This was a small price for peace of mind and surprise my insurance covered it even though John Hopkins is in another state. Hope this helps....Nick
  • qjenxu
    qjenxu Member Posts: 19
    #23
    NM said:

    Sent mine to John Hopkins
    I sent my samples to John Hopkins for a second opinion after my wife emailed them. Was told w/o insurance it would run 250.00 This was a small price for peace of mind and surprise my insurance covered it even though John Hopkins is in another state. Hope this helps....Nick

    thanks! called Johns Hopkins Medical Laboratories this morning
    got address and fee information.

    asked my husband make the inquire to his urology office to send slide to Johns Hopkins. (thought I couldn't do this for him because the privacy policy)

    Hope he make his move soon.

    Jennifer
  • Andiesdad
    Andiesdad Member Posts: 5
    #24
    qjenxu said:

    thanks! called Johns Hopkins Medical Laboratories this morning
    got address and fee information.

    asked my husband make the inquire to his urology office to send slide to Johns Hopkins. (thought I couldn't do this for him because the privacy policy)

    Hope he make his move soon.

    Jennifer

    Good Luck, Keep the faith and continue loving one another
    Hello Everyone,

    I joined this site yesterday and would like to post a few comments of my own. First of all Jennifer, thank you for being the Loving wife that you sound like for your husband, we all need someone by our sides when it comesto events like these.

    I turn 58 on the 4th of Oct. on the 2nd of September i went in for my prostate byopsy after givng doctor a PSA of 5.3. on the 16th of September my urologist called me and my wife into his office to explain the findings. I have stage 1 prostate cancer (we think,) the MRI was wednesday to find out if it's spread to other organs. my total gleason score was a 8 (4+4) involving 70% of the core sample. if my cancer hasn't spread, my urologist wants to remove my prostate before the end of the year and i don't mind telling all of you that i'm a little frightened. He wants to use nerve sparing radical retropubic prostatectomy but he said that he beleives that he can spare the nerves on the right side of my prostate but not the left. i know that this will be a must do surgery but i don't know if i'm more affriad of the surgery or the after effects of it. I want to thank all of you who has posted to this site for your valuable information and wish you all GOD's speed in a full recovery
  • NM
    NM Member Posts: 214
    #25
    Andiesdad said:

    Good Luck, Keep the faith and continue loving one another
    Hello Everyone,

    I joined this site yesterday and would like to post a few comments of my own. First of all Jennifer, thank you for being the Loving wife that you sound like for your husband, we all need someone by our sides when it comesto events like these.

    I turn 58 on the 4th of Oct. on the 2nd of September i went in for my prostate byopsy after givng doctor a PSA of 5.3. on the 16th of September my urologist called me and my wife into his office to explain the findings. I have stage 1 prostate cancer (we think,) the MRI was wednesday to find out if it's spread to other organs. my total gleason score was a 8 (4+4) involving 70% of the core sample. if my cancer hasn't spread, my urologist wants to remove my prostate before the end of the year and i don't mind telling all of you that i'm a little frightened. He wants to use nerve sparing radical retropubic prostatectomy but he said that he beleives that he can spare the nerves on the right side of my prostate but not the left. i know that this will be a must do surgery but i don't know if i'm more affriad of the surgery or the after effects of it. I want to thank all of you who has posted to this site for your valuable information and wish you all GOD's speed in a full recovery

    welcome andiesdad
    Hi and welcome to the club. I am now 3 weeks post op and will give you a quick opinion on my surgery. First when I was told I had cancer I felt deflated. Then I started researching and reading all posts here and realized I wasnt alone. I found a surgeon I trusted and didnt look back. Scared, hell yes only a fool wouldnt be. I also didnt want my quality of life to suffer but I had Cancer so I had to do something. I had 5 out of 6 cores positive for cancer. To shorten this post I had a supportive family a good doctor and now I am almost ready to return to work. I am also 52 years old. I choose surgery first so if necessary I could still have radiation but hoping its not necessary. So far no incontinence. Hope this helped and for more information see my post and pre surgery posts as well as others... Praying for you... Nick
  • qjenxu
    qjenxu Member Posts: 19
    #26
    Andiesdad said:

    Good Luck, Keep the faith and continue loving one another
    Hello Everyone,

    I joined this site yesterday and would like to post a few comments of my own. First of all Jennifer, thank you for being the Loving wife that you sound like for your husband, we all need someone by our sides when it comesto events like these.

    I turn 58 on the 4th of Oct. on the 2nd of September i went in for my prostate byopsy after givng doctor a PSA of 5.3. on the 16th of September my urologist called me and my wife into his office to explain the findings. I have stage 1 prostate cancer (we think,) the MRI was wednesday to find out if it's spread to other organs. my total gleason score was a 8 (4+4) involving 70% of the core sample. if my cancer hasn't spread, my urologist wants to remove my prostate before the end of the year and i don't mind telling all of you that i'm a little frightened. He wants to use nerve sparing radical retropubic prostatectomy but he said that he beleives that he can spare the nerves on the right side of my prostate but not the left. i know that this will be a must do surgery but i don't know if i'm more affriad of the surgery or the after effects of it. I want to thank all of you who has posted to this site for your valuable information and wish you all GOD's speed in a full recovery

    Sorry for what happening to you
    Dear Andiesdad, I am sorry (but glad) you fund here, a wonderful warm, kind, and knowledgeable group. I fund I got so much help and support from everybody here. I know it is extremely difficult to realize what happen to you and what you are going to go through.

    To answer your wonder, I am not sure what is 'use nerve sparing radical retropubic prostatectomy ' as what difference between regular Da vinci surgery. what are the after effects of this surgery?

    Well keep pray for you!

    Jennifer
  • Andiesdad
    Andiesdad Member Posts: 5
    #27
    NM said:

    welcome andiesdad
    Hi and welcome to the club. I am now 3 weeks post op and will give you a quick opinion on my surgery. First when I was told I had cancer I felt deflated. Then I started researching and reading all posts here and realized I wasnt alone. I found a surgeon I trusted and didnt look back. Scared, hell yes only a fool wouldnt be. I also didnt want my quality of life to suffer but I had Cancer so I had to do something. I had 5 out of 6 cores positive for cancer. To shorten this post I had a supportive family a good doctor and now I am almost ready to return to work. I am also 52 years old. I choose surgery first so if necessary I could still have radiation but hoping its not necessary. So far no incontinence. Hope this helped and for more information see my post and pre surgery posts as well as others... Praying for you... Nick

    Hi Nick
    Thank you for your comments. funny (no not funny, there is nothing funny about any of this,) ironic. people are always the ones that; this will never happen to me. it always happens to someone else. my cancer dianosis blew me out of the water. now i know that it's not the other guy.................. I will go for the surgery and pray for a speedy recovery, with minimal after effects. but it really does help to read others stories on this site. I thank you for your time and all of everyones thoughts. and pray that all of your surgries and recovery processes go smoothly. GOD BlESS you all.
  • Andiesdad
    Andiesdad Member Posts: 5
    #28
    qjenxu said:

    Sorry for what happening to you
    Dear Andiesdad, I am sorry (but glad) you fund here, a wonderful warm, kind, and knowledgeable group. I fund I got so much help and support from everybody here. I know it is extremely difficult to realize what happen to you and what you are going to go through.

    To answer your wonder, I am not sure what is 'use nerve sparing radical retropubic prostatectomy ' as what difference between regular Da vinci surgery. what are the after effects of this surgery?

    Well keep pray for you!

    Jennifer

    Hi Jennifer
    Thank you for your comments, and thank you for being a rock in your husbands life. from what i understand (they may be the same surgeries, just called different names. can anyone else out there help?) the surgery that i mentioned is done by a robot that the doctor controls, as the doctor is doing the surgery, if he can spare some (hopefully most)of the nerves that control erections he does so with these robotic arms, then hopefully later on post-op there may be less chance of your husband suffering from ED. again if there are more comment from others who have already undergone this surgery. please correct me or add on to what i've just said. thanks
  • qjenxu
    qjenxu Member Posts: 19
    #29
    Andiesdad said:

    Hi Jennifer
    Thank you for your comments, and thank you for being a rock in your husbands life. from what i understand (they may be the same surgeries, just called different names. can anyone else out there help?) the surgery that i mentioned is done by a robot that the doctor controls, as the doctor is doing the surgery, if he can spare some (hopefully most)of the nerves that control erections he does so with these robotic arms, then hopefully later on post-op there may be less chance of your husband suffering from ED. again if there are more comment from others who have already undergone this surgery. please correct me or add on to what i've just said. thanks

    thanks for explanin it to me

    the side effect of the surgery is pretty comment. I hope everyone who have that surgery will not have much side effect. I understand how important 'the quality of life' is. However, one got have to have 'life' first, then able to work on 'quality'. I don't know if my husband is agree with me or not but i told him now worry about it much now. the important thing is find a experienced surgeon to get minimize side effect.

    I do believe Larry and Sonny are having good experience on how to deal those side effect. both of them are on the trip and will return soon. I am sure they would be happy to offer you their opinion.

    best wish for you.

    Jennifer
  • SubicSquid
    SubicSquid Member Posts: 11
    #30
    Andiesdad said:

    Good Luck, Keep the faith and continue loving one another
    Hello Everyone,

    I joined this site yesterday and would like to post a few comments of my own. First of all Jennifer, thank you for being the Loving wife that you sound like for your husband, we all need someone by our sides when it comesto events like these.

    I turn 58 on the 4th of Oct. on the 2nd of September i went in for my prostate byopsy after givng doctor a PSA of 5.3. on the 16th of September my urologist called me and my wife into his office to explain the findings. I have stage 1 prostate cancer (we think,) the MRI was wednesday to find out if it's spread to other organs. my total gleason score was a 8 (4+4) involving 70% of the core sample. if my cancer hasn't spread, my urologist wants to remove my prostate before the end of the year and i don't mind telling all of you that i'm a little frightened. He wants to use nerve sparing radical retropubic prostatectomy but he said that he beleives that he can spare the nerves on the right side of my prostate but not the left. i know that this will be a must do surgery but i don't know if i'm more affriad of the surgery or the after effects of it. I want to thank all of you who has posted to this site for your valuable information and wish you all GOD's speed in a full recovery

    You will get support here
    AndiesDad, Our cases are similar. I am 63 years old, my PSA was 5.6 and my Gleason 8 (3+5,confined to the left side of the prostate.). I was diagnosed in July, but recovery from a severe E-coli infection/prostatitis from the biopsy has delayed my surgery. My nuclear bone scan and MRI were negative for spread. My extra problem is that I have a really fat gut. My urologist has scheduled me for an open prostatectomy on October 22 because he feels more confident doing my case that way because surgery on obese men is much more difficult. Fortunately, he has referred me for a consult with a very experienced DaVinci surgeon on Tuesday who wants to see if he will be able to do DaVinci surgery on me. I hope that he will. Either way, our cases seem similar so I will keep this site informed as my treatment progresses. If I have the open surgery, I will be one of the few currently on this site not to have robotic. It will be interesting to see how differnt the recovery might be. The good outcomes I have been reading about here make me feel optomistic that things will be alright. Hang in there and stay optomistic.
  • WHW
    WHW Member Posts: 189
    #31
    For Andiesdad
    Hey Andiesdad,

    My name is Sonny and I was where you are not quite 3 months ago. In that time I have done my research (that's how I found this forum)made my decision and had my surgery. This is a brief synopsis of my travel down the PCa path.

    I had my surgery on Thursday Sept. 17th at 10am. I was in my hospital room about 4pm and walking around the hospital corridors by 7pm. I was discharged the next day around 3pm and went to the apartment I had on the hospital campus. I walked 4 times a day every day and totally probably walked about 3 miles per day. I had only mild discomfort and not once during the week that I was there did I feel the need for any kind of pain meds.

    My catheter was removed on Wed. the 23rd and I flew home to Orlando from Detroit yesterday afternoon. My recovery may not be typical, I have talked to many guys who didn't have it as easy I. I think a large part of the success is dependent on the Dr.'s skill and on how much you do before the surgery to prepare.

    I walked more the days before the surgery, lost a few pounds and began eating the recommended post-surgery diet 10 days before the surgery. The diet is all about getting you digestive system on track. Gas, bloating, constipation, all of that can be avoided by eating correctly for the effects that the surgery will have on your body.

    I started doing the Kegel exercises about a month before the surgery to build the muscles. My cath was removed at 9am and I have not had a drop, drip, leak or anything since. Unlike some others, I haven't even had a leak when sneezing or coughing. I consider myself very fortunate with my recovery.

    My nerves were spared on both sides. You Dr. may find he can spare both once he gets in there. They never know for sure until the can actually see whats going on.

    I don't have any experience the ED Rehab yet, my surgery was only 8 days ago. I am not supposed to start the rehab plan for 2 weeks.

    This was short, sweet and to the point. There is nothing about the process I would change and there is nothing about the decision I regret. You will find that once you have made the decision and put the details and plan in place, a serene peace and calm will wash over you. You will feel comfortable and confident knowing that you have done all you can and now it is out of your hands.

    This is a very supportive and encouraging group here, you should know that many will be saying prayers and blessings for you and your family and in fact they have already started.

    Bless you and your family,

    Sonny
  • saoco
    saoco Member Posts: 43
    #32
    NM said:

    welcome andiesdad
    Hi and welcome to the club. I am now 3 weeks post op and will give you a quick opinion on my surgery. First when I was told I had cancer I felt deflated. Then I started researching and reading all posts here and realized I wasnt alone. I found a surgeon I trusted and didnt look back. Scared, hell yes only a fool wouldnt be. I also didnt want my quality of life to suffer but I had Cancer so I had to do something. I had 5 out of 6 cores positive for cancer. To shorten this post I had a supportive family a good doctor and now I am almost ready to return to work. I am also 52 years old. I choose surgery first so if necessary I could still have radiation but hoping its not necessary. So far no incontinence. Hope this helped and for more information see my post and pre surgery posts as well as others... Praying for you... Nick

    Right place to be.Hi
    Right place to be.
    Hi andiesdad I do not like to welcome any one to this club in reality I Wish we will not get any
    new menbers but it is only a wish.so you are here and we need to help you to go trough this.
    the surgery you are talking about I think is called LAPROSCOPY;the difference between that and davin is the fallowing in davin the surgery is almost fully robatic,and the instruments
    rotates 360 degrees.LAP the doctor manipulates the instruments.I have LAPRO fives years ago
    and thanks God my psa has been 0.04 since.I live in new york city.I did not have incontinece,but I developed scar tissus and needed a second surgery.my brother had the same surgery and dinot have any problem at all.This surgery most likely will save your life,
    but it also will take somthing from you.what ever this surgery takes from you it will give it back to you slowsly you need to be patient this is the name of the game.I know your mind is going at about thousands of miles per hour but you will be fine.Have faith in GOD and he will
    get you trough this test in your life.I hope this will help you.I was 46 years old when pc
    hit me.
  • Bill91101
    Bill91101 Member Posts: 81 Member
    #33
    Another option?
    Hi Jennifer and husband (welcome to the no-fun club)

    I am 55 yo also. (well, 56 in a couple of weeks!)

    I was diagnosed in April: PSA = 89, Gleason = 3+4. No bone cancer, no cancer in any other organs.

    Surgery was not an option (evidence seemed to indicate that the cancer had gone beyond the prostate- I had a neighboring lymph node that was irritated, chemo wasn't considered.)

    I started IMRT treatments in June. IMRT is Intensity Modulated Radiation Therapy. 42 treatments at 15 minutes apiece. Only side effect was some diarrhea (tg for spell check), and pain urinating. That's all gone.

    I began Degarelix treatments in June, also. Degarelix knocks out the testosterone and starves the cancer. (lack of testosterone is a bummer- but is isn't forever, and it beats the alternative)

    My latest PSA number was 0.5. Prostate is down to 'normal' size. My lymph gland is no longer swollen.

    I am working full time (and more = groan)

    My Urologist says 'we're winning the battle'.

    I'm a staunch advocate of pomegranate juice, tomatoes, salsa, organic whole foods, meditation, prayer and 10,000 steps a day. Laughing at yourself helps, too.

    My dad had PC 13 years ago. He got proton beamed. That's all. No surgery, nothing. His PSA has been below 0.5 since. He turns 90 next March. We had a good laugh on the phone about my initial predicament and the outcome (not sure why it was so funny, but we laughed)

    There is a lot of great information supplied by people on this board. I hope this helps.

    Stay strong and VISUALIZE winning.

    Bill
  • JohnDa
    JohnDa Member Posts: 3
    #34
    Prostate
    Hi Jennifer, I was diagnosed in July. My PSA was 5.4 with a Gleason score of 6 (12 biopsies with three showing cancer) A great book to read is Bob Marckini's "You can beat prostate cancer". He explains most all treatment modalities and the pros and cons of each. He was in the same boat that your husband and I are in but you can save a lot of time and benefit from his research. He talked to 200 patients and doctors who specialize in each treatment modality. He goes to in depth discussions on PSA, Gleason scores, patient results, insurance, etc. I'm still debating treatment approach but based on my scores and talking personally to patients all over the country, I have narrowed down my choices to Proton Therapy and a "Wait and see with monitoring" approach. I'm continuing my research but hope to make a decision by the end of this week. As far as food is concerned, I've seen Broccoli, and tomatoes recommended (Bob 's book also covers a diet). I am also taking pomegranate extract in pill form. It's a lot cheaper than the juice and doesn't contain the sugar. Don't let your urologist talk you into any specific method . They can be very biased towards their specialty. Do your own due diligence. Remember, after treatment , it's the quality of life that counts. If I can be of any further help, please contact me. John
  • qjenxu
    qjenxu Member Posts: 19
    #35
    JohnDa said:

    Prostate
    Hi Jennifer, I was diagnosed in July. My PSA was 5.4 with a Gleason score of 6 (12 biopsies with three showing cancer) A great book to read is Bob Marckini's "You can beat prostate cancer". He explains most all treatment modalities and the pros and cons of each. He was in the same boat that your husband and I are in but you can save a lot of time and benefit from his research. He talked to 200 patients and doctors who specialize in each treatment modality. He goes to in depth discussions on PSA, Gleason scores, patient results, insurance, etc. I'm still debating treatment approach but based on my scores and talking personally to patients all over the country, I have narrowed down my choices to Proton Therapy and a "Wait and see with monitoring" approach. I'm continuing my research but hope to make a decision by the end of this week. As far as food is concerned, I've seen Broccoli, and tomatoes recommended (Bob 's book also covers a diet). I am also taking pomegranate extract in pill form. It's a lot cheaper than the juice and doesn't contain the sugar. Don't let your urologist talk you into any specific method . They can be very biased towards their specialty. Do your own due diligence. Remember, after treatment , it's the quality of life that counts. If I can be of any further help, please contact me. John

    thanks Bill91101and JohnDa for your kind words and
    thanks Bill91101and JohnDa for your kind words and encouragement. My husband and I are deeply appropriate everyone's help and pray and support. I will looking through all the opinion and suggestion your provided. your advises are opened my eyes. I printed every post out so i can read them as I need anytime.

    Wednesday we will see our urologist to find out if the cancer is spread or not.

    JohnDa, with you good luck and the best for your decision.


    Jennifer
  • Unknown
    Unknown
    #36
    This comment has been removed by the Moderator
  • JohnW7WZ
    JohnW7WZ Member Posts: 1
    #37
    This too will pass
    Hello Jennifer,

    "You Can Beat Prostate Cancer and You Don't Need Surgery to Do It", by Robert J. Marckini

    Please obtain this book and read it completely asap and encourage your busy husband to do the same. While you are an Angel to do the research for him, this is one of the most important decisions he will ever make. It is normal to avoid it, deny it and put it off. This book will change his perspective, give you both hope and return a sense of control to your lives after the shocking diagnosis.

    I was diagnosed in August 2009 at the age of 58. No symptoms, just a blood test from a physical exam, PSA 11 and Gleason (3+4). I was blessed to catch this early as well. My treatment choice was Proton Beam radiation at the UFPTI in Jacksonville, FL. This was completed in February 2010. Post treatment I have no symptoms, no side effects and absolutely no change in my daily routines. Everything works for me just as it did before the diagnosis. My PSA is already down to 3.6 and falling.

    Read the book, take a deep breath and if your husband has any questions, he is welcome to email or call me by phone. You are welcome to contact me as well, but he needs to engage!

    Hang in there, John
  • Kongo
    Kongo Member Posts: 1,166 Member
    #38
    JohnW7WZ said:

    This too will pass
    Hello Jennifer,

    "You Can Beat Prostate Cancer and You Don't Need Surgery to Do It", by Robert J. Marckini

    Please obtain this book and read it completely asap and encourage your busy husband to do the same. While you are an Angel to do the research for him, this is one of the most important decisions he will ever make. It is normal to avoid it, deny it and put it off. This book will change his perspective, give you both hope and return a sense of control to your lives after the shocking diagnosis.

    I was diagnosed in August 2009 at the age of 58. No symptoms, just a blood test from a physical exam, PSA 11 and Gleason (3+4). I was blessed to catch this early as well. My treatment choice was Proton Beam radiation at the UFPTI in Jacksonville, FL. This was completed in February 2010. Post treatment I have no symptoms, no side effects and absolutely no change in my daily routines. Everything works for me just as it did before the diagnosis. My PSA is already down to 3.6 and falling.

    Read the book, take a deep breath and if your husband has any questions, he is welcome to email or call me by phone. You are welcome to contact me as well, but he needs to engage!

    Hang in there, John

    Welcome
    John,

    Welcome to the forum. Many men here would benefit from your insights and experiences with proton beam treatment.

    I strongly suggest that you open a new thread to better able to share your background and knowledge. You tagged onto an old thread here that was started back in 2009. A new thread oriented toward this treatment option would, I am sure, generate a lot of discussion.

    Glad your choices are working well for you.

    ===========================
    Age at Dx: 59. PSA was 4.3 which dropped to 2.8 after eliminating dairy. 1 of 12 cores positive with 15% involvement. Gleason 3+3=6. Stage T1c. DRE normal and there were no physical symptoms or history of PCa in family.

    Treatment: SBRT with CyberKnife in June 2010. Side effects: None

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