PC Newbie

celliott7
celliott7 Member Posts: 10
edited March 2014 in Prostate Cancer #1
Hello to all:

I am 55, just Dx with PC. Gleason 6, Stage 1. No family history, no symptoms, but blessed to have a urologist who urged biopsy for 4.3 PSA after no change from antibiotics for a month. My wife and I go back to see him Oct 7 to discuss options. Also, am a medical professional.

Emotionally, I move from DaVinci removal to seeds and everything in between depending upon the day and the research I have done. I just watched an online video of a prostate removal via DaVinci, was very impressed. Also, doing lots of research in medical databases. Fortunately, my odds seem academically good at this point with most options but at a very basic human level, am really struggling as to what is best route.

Any input appreciated from those of you who have an opinion and have been through this process.

Grace to You,
Charlie

Comments

  • WHW
    WHW Member Posts: 189
    Welcome to the "Don't Really Want To Be Here Club"
    Charlie, welcome to the forum and I am sorry you have to be here.

    I was where you are just a few months ago. I was diagnosed in June after a PSA change from 3.0 11/2007 to 6.3 5/09. A trip to the urologist, DRE, biopsy, CT Scan and Bone Scan confirmed the PCa was present.

    I too began my search for information. My search was a little easier than most guys because my wife was diagnosed with cancer in 2005. I have become quite adept at medical research and the ability to separate wheat from chaff. As a medical professional you also know that the patient really has to take charge so to speak and be involved much more than in days of old. It is our responsibility and out right to do so.

    You will find many opinions on the various alternatives, no doubt. All have some form of side effects and drawbacks that may effect Quality of Life later. I have found that most of them can be dealt with.

    I have talked with literally hundreds of PCa club members on this and other forums and see the gamut of results and issues. No two men are the same and therefore no two react to the alternatives in the same way. I am sure you know this.

    So what do you do? Personally, I chose to go da Vinci. I really wanted it out now. Having made that decision I started searching for Dr.s and there are a bunch. I kept seeing some of the same names in different guy's posts and researched them. I am blessed with great insurance and knew I could go where the best was. When I researched the different dr.s a common name kept coming up. It wasn't theirs but rather someone they had trained under, mentored under or collaborated with. My philosophy was why go to the student when I can go to the teacher.

    If you look back through the posts you can see my recovery process day by day. They usually have the name SONNY in them.

    My surgery was almost a non-event. I never took a pain pill, I was walking 2-3 miles a day and have been dry since the day they took my cath out. The cath is always a big issue it would seem, but not in my case. My dr does not use the Foley, his fine tuned surgical procedures utilize the Supra Pubic. That made all the difference in the world to me.

    My signature line contains all of my stats and path report info. If I can answer anything direct for you, just let me know.

    This forum is a great site and the folks here are knowledgeable and super supportive. You might also check out healingwell.com. The site is a little more active, just find the PCa forum as you did here.

    Good luck and God bless you and your family,

    Sonny

    61 years old
    PSA 11/07 3.0
    PSA 5/09 6.4
    Diagnosis confirmed July 9, 2009
    12 Needle Biopsy = 9 clear , 3 postive
    <5%, 90%, 40%
    Gleason Score (3+4) 7 in all positive cores
    CT Organ Scan - negative
    Nuclear Bone Scan - Negative

    da Vinci 9/17/09 Dr. Mani Menon Henry Ford Medical Institute

    Post Surgery Pathology:
    Gleason: Changed to (4+3) = 7
    Stage: T3a
    Tumor Volume 12.5%
    ALL NERVES SPARED
    Margins: focally positive right posterior mid level
    Perineural Invasion: present
    Seminal Invasion: absent
    Venous Invasion: absent
    Angiolymphatic Invasion: absent
    Left Internal iliac lymph node: reveals zero
    Right Internal lymph node: reveals zero
  • qjenxu
    qjenxu Member Posts: 19
    WHW said:

    Welcome to the "Don't Really Want To Be Here Club"
    Charlie, welcome to the forum and I am sorry you have to be here.

    I was where you are just a few months ago. I was diagnosed in June after a PSA change from 3.0 11/2007 to 6.3 5/09. A trip to the urologist, DRE, biopsy, CT Scan and Bone Scan confirmed the PCa was present.

    I too began my search for information. My search was a little easier than most guys because my wife was diagnosed with cancer in 2005. I have become quite adept at medical research and the ability to separate wheat from chaff. As a medical professional you also know that the patient really has to take charge so to speak and be involved much more than in days of old. It is our responsibility and out right to do so.

    You will find many opinions on the various alternatives, no doubt. All have some form of side effects and drawbacks that may effect Quality of Life later. I have found that most of them can be dealt with.

    I have talked with literally hundreds of PCa club members on this and other forums and see the gamut of results and issues. No two men are the same and therefore no two react to the alternatives in the same way. I am sure you know this.

    So what do you do? Personally, I chose to go da Vinci. I really wanted it out now. Having made that decision I started searching for Dr.s and there are a bunch. I kept seeing some of the same names in different guy's posts and researched them. I am blessed with great insurance and knew I could go where the best was. When I researched the different dr.s a common name kept coming up. It wasn't theirs but rather someone they had trained under, mentored under or collaborated with. My philosophy was why go to the student when I can go to the teacher.

    If you look back through the posts you can see my recovery process day by day. They usually have the name SONNY in them.

    My surgery was almost a non-event. I never took a pain pill, I was walking 2-3 miles a day and have been dry since the day they took my cath out. The cath is always a big issue it would seem, but not in my case. My dr does not use the Foley, his fine tuned surgical procedures utilize the Supra Pubic. That made all the difference in the world to me.

    My signature line contains all of my stats and path report info. If I can answer anything direct for you, just let me know.

    This forum is a great site and the folks here are knowledgeable and super supportive. You might also check out healingwell.com. The site is a little more active, just find the PCa forum as you did here.

    Good luck and God bless you and your family,

    Sonny

    61 years old
    PSA 11/07 3.0
    PSA 5/09 6.4
    Diagnosis confirmed July 9, 2009
    12 Needle Biopsy = 9 clear , 3 postive
    <5%, 90%, 40%
    Gleason Score (3+4) 7 in all positive cores
    CT Organ Scan - negative
    Nuclear Bone Scan - Negative

    da Vinci 9/17/09 Dr. Mani Menon Henry Ford Medical Institute

    Post Surgery Pathology:
    Gleason: Changed to (4+3) = 7
    Stage: T3a
    Tumor Volume 12.5%
    ALL NERVES SPARED
    Margins: focally positive right posterior mid level
    Perineural Invasion: present
    Seminal Invasion: absent
    Venous Invasion: absent
    Angiolymphatic Invasion: absent
    Left Internal iliac lymph node: reveals zero
    Right Internal lymph node: reveals zero</p>

    Sony,
    Do you mind share Dr. Mani Menon M.D. 's contact information with me? My email is [email protected]

    So far, Dr. Menon is on the top list if we would go Da vinci option. Not sure how our insurance work but with PPO, it may not too bad. we may go see him to help us make up mind.

    We would appreciate any of your help. Thanks so much!

    Jennifer
  • qjenxu
    qjenxu Member Posts: 19
    celliott7
    sorry for you to be here.

    My husband had Dx the PC recently. don't know what stage is yet. we are consider all the option at this point but eventually will have to make up our mind. we are learning from all the discussion here including this one. Thanks!

    Best wish for you and your family.

    Jennifer
  • WHW
    WHW Member Posts: 189
    qjenxu said:

    Sony,
    Do you mind share Dr. Mani Menon M.D. 's contact information with me? My email is [email protected]

    So far, Dr. Menon is on the top list if we would go Da vinci option. Not sure how our insurance work but with PPO, it may not too bad. we may go see him to help us make up mind.

    We would appreciate any of your help. Thanks so much!

    Jennifer

    Dr. Menon
    Jennifer,

    Just do a search of the Vattikuti Urology Institute, they are in the Henry Ford Medical Center in Detroit Michigan.

    Also take a look at these links:

    http://en.wikipedia.org/wiki/Vattikuti_Urology_Institute

    http://en.wikipedia.org/wiki/Mani_Menon

    You will see some very interesting fact about the institute and Dr. Menon.

    Let me know if you need more info.

    Sonny
  • saoco
    saoco Member Posts: 43
    Hi celliott it seens that
    Hi celliott it seens that you have done your homework.Fives years ago when I was 46 pc hit me;
    it was very hard on me becouse I thought only old people or people in the lasted 60 ware the one afected by pc.It seens that every day the age factor goes down,and in this gruop theare
    many people below the age of 50 with pc.I decided to take out becouse my prostate failed me
    and I just want this cancer out of my body.I had the same numbers as you,and my doctor told me that at my age and with this numbers the best option was to take it out.any method you use,will have it own side efect so you need to make your own desition based in the risk you are willing to take.I hope this may help you.
  • celliott7
    celliott7 Member Posts: 10
    saoco said:

    Hi celliott it seens that
    Hi celliott it seens that you have done your homework.Fives years ago when I was 46 pc hit me;
    it was very hard on me becouse I thought only old people or people in the lasted 60 ware the one afected by pc.It seens that every day the age factor goes down,and in this gruop theare
    many people below the age of 50 with pc.I decided to take out becouse my prostate failed me
    and I just want this cancer out of my body.I had the same numbers as you,and my doctor told me that at my age and with this numbers the best option was to take it out.any method you use,will have it own side efect so you need to make your own desition based in the risk you are willing to take.I hope this may help you.

    PC Newbie
    Thanks to Sonny, Jennifer and SAOCO who replied so quickly. What a wonderful forum and great people! I will keep everyone posted on our journey. I am near Columbus, OH and will also be looking into the James Cancer Center at OSU as I know they offer the robotic surgery.

    Grace to You,
    Charlie
  • WHW
    WHW Member Posts: 189
    celliott7 said:

    PC Newbie
    Thanks to Sonny, Jennifer and SAOCO who replied so quickly. What a wonderful forum and great people! I will keep everyone posted on our journey. I am near Columbus, OH and will also be looking into the James Cancer Center at OSU as I know they offer the robotic surgery.

    Grace to You,
    Charlie

    Check out the Cleveland Center Also
    Charlie, I have seen a lot of good reviews about the folks at Cleveland as well.

    Might be worth checking out.

    Sonny
  • qjenxu
    qjenxu Member Posts: 19
    celliott7 said:

    PC Newbie
    Thanks to Sonny, Jennifer and SAOCO who replied so quickly. What a wonderful forum and great people! I will keep everyone posted on our journey. I am near Columbus, OH and will also be looking into the James Cancer Center at OSU as I know they offer the robotic surgery.

    Grace to You,
    Charlie

    look like we are in the same area
    we like in outside of columbus. Am trying to find best doctor and surgeon. will share the info with you after we find out.

    best wish!

    Jennfier
  • qjenxu
    qjenxu Member Posts: 19
    WHW said:

    Dr. Menon
    Jennifer,

    Just do a search of the Vattikuti Urology Institute, they are in the Henry Ford Medical Center in Detroit Michigan.

    Also take a look at these links:

    http://en.wikipedia.org/wiki/Vattikuti_Urology_Institute

    http://en.wikipedia.org/wiki/Mani_Menon

    You will see some very interesting fact about the institute and Dr. Menon.

    Let me know if you need more info.

    Sonny

    yes, I did my search
    but they don't have a phone number to contact, only email inquiry on their web site.

    It is not rush at this point but will ask you if I couldn't fine a number to call.

    Thanks so much Sonny!

    Jennifer
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Hi Charlie
    Please list you other numbers; cores taken, number positive and involvement. This will help in figuring out where you stand, and what you need to do..........

    Also I tell everyone to get a second opinion on the biopsy, that is have the parrifin blocks sent to another lab , an expert in the fiend, one expert is Dr. Epstein at Johns Hopkins. You do this so that you are not over or under treated.

    we are with you

    Ira, age 66
    PSA 2.2 in Jan. , 2.5 in July
    Diagnosed march 2 0f 12 cores positive, less than 5 percent involvement
    April-endro rectal mri with spectroscopy no defined nodule involvement
    Stage t1
    Active surveillance(that is closely monitored)
  • NM
    NM Member Posts: 214

    Hi Charlie
    Please list you other numbers; cores taken, number positive and involvement. This will help in figuring out where you stand, and what you need to do..........

    Also I tell everyone to get a second opinion on the biopsy, that is have the parrifin blocks sent to another lab , an expert in the fiend, one expert is Dr. Epstein at Johns Hopkins. You do this so that you are not over or under treated.

    we are with you

    Ira, age 66
    PSA 2.2 in Jan. , 2.5 in July
    Diagnosed march 2 0f 12 cores positive, less than 5 percent involvement
    April-endro rectal mri with spectroscopy no defined nodule involvement
    Stage t1
    Active surveillance(that is closely monitored)

    another Davinci recipient
    Hi my name is Nick and im 52 years old.

    Had Davinci on Sept.3,2009

    24 needle biopsy-prostate divided into 6 sections-5 showed cancer all with perineural invasion-all 5 50 to 100%involved

    Sent samples to John Hopkins for second opinion(250.00) w/o insurance my insurance did cover it.

    Got pathology report back with the ammount of involvement expected the worse but My prostate showed NO positive margins.

    Goes to show you were all different and even though my cancer was very involved my doctor still said removal was best option. Doctor said could use radiation after removal if needed but cant remove prostate after radiation.
    Just a short summary to give you 1 mans opinion and this site helped me tremendously to research and make my decision.

    Best to yours as I know what a tough decision you face. God bless and once you make your decision. Accept it ,trust your doctor, pray and dont second guess yourself whatever your decision is.

    Nick

    PS my psa was 5.9 after taking antibiotics for 30 days
  • celliott7
    celliott7 Member Posts: 10
    NM said:

    another Davinci recipient
    Hi my name is Nick and im 52 years old.

    Had Davinci on Sept.3,2009

    24 needle biopsy-prostate divided into 6 sections-5 showed cancer all with perineural invasion-all 5 50 to 100%involved

    Sent samples to John Hopkins for second opinion(250.00) w/o insurance my insurance did cover it.

    Got pathology report back with the ammount of involvement expected the worse but My prostate showed NO positive margins.

    Goes to show you were all different and even though my cancer was very involved my doctor still said removal was best option. Doctor said could use radiation after removal if needed but cant remove prostate after radiation.
    Just a short summary to give you 1 mans opinion and this site helped me tremendously to research and make my decision.

    Best to yours as I know what a tough decision you face. God bless and once you make your decision. Accept it ,trust your doctor, pray and dont second guess yourself whatever your decision is.

    Nick

    PS my psa was 5.9 after taking antibiotics for 30 days

    Others?
    Thank you Nick and all others who are responding. You are all blessings to me as I sort through this.

    My observation so far is that most of those who are posting are da Vinci or other surgical survivors, which is great. However, I would love to hear from those of you who were early stage prostate cancer and chose radiation (external or seeds)instead of surgery.

    Just continuing to gather data and thank God for allowing me the incredible gift of His mercy.

    Grace to You,
    Charlie
  • WHW
    WHW Member Posts: 189
    celliott7 said:

    Others?
    Thank you Nick and all others who are responding. You are all blessings to me as I sort through this.

    My observation so far is that most of those who are posting are da Vinci or other surgical survivors, which is great. However, I would love to hear from those of you who were early stage prostate cancer and chose radiation (external or seeds)instead of surgery.

    Just continuing to gather data and thank God for allowing me the incredible gift of His mercy.

    Grace to You,
    Charlie

    Charlie Check This Out
    Charlie,

    Go over to healingwell.com, select the forums and chats at the top of the page and scroll down to prostate cancer. There are a bunch of guys over there that have had radiation and they are extremely knowledgeable. You can just look through the over 200 pages of discussions or join up and pose your own question. They will be along quick and you will not want for some really expert and personal experience information.

    Bless you and your family,

    Sonny