Appointment with John Hopkins

Robert1941
Robert1941 Member Posts: 27
edited March 2014 in Prostate Cancer #1
I met with an open surgion at JHU yesterday to look at my cancer and make a reccommendations. He indicated that my cancer with 3+3 gleeson, 4.8 PSA, and staged T1 was right for surgery if I wanted. They also had done a second opinion on biopsy and it was 3+3 too. Dr. said watchful waiting would also be fine for me but said it's a very active routine with PSA tests every 3 mos and biopsys every 18 mos. He felt radioation would work too and had a favorable things to say abour cyberknife which I already met with at GWU. I was very impressed with his calm and balanced approach. Since I have so many choices I need to pray upon it to decide what is best for me.

Thanks and GOD BLESS to Kongo for telling me to go to JHU and talk to a surgeon. This was the best advice I have had to date and it helped put things in the right frame of mind for me to consider. Before I was getting some bad advice at times from well meaning peoples but who didn't really knos anything all about cancer. This board has been a great help to me.

Am still leaning to cyberknife because of the good things it did for Kongo and others but would be fine with the surgeon I met with. He said I have time to take my time and think about all the options. Am starting to get that all of us are different here and no treatment is best for all.

Thanks to all.

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    #2
    Good News, Robert
    Robert, I'm glad you were able to get into see a surgeon at Johns Hopkins who could provide some balanced advice about that potential option of treatment. Your pathology suggests and the advice from the expert at Johns Hopkins confirms that you have a number of viable treatment options and you should feel fortunate that your prostate cancer was discovered early enough to give you these choices.

    While I appreciate your kind words and confidence, please do not choose your treatment based on my own or anyone else's experience or non-professional advice. As you pointed out in your post each of us are very different, not only with our individual cancers but with our personal priorities, lifestyle expectations, and long term treatment goals. Your treatment choice is one that only you can make after informing yourself of the options appropriate to you, your comfort level with potential side effects, and with the advice and concurrence of a professional medical team that supports you. You seem to be getting close to that point and I'm confident your prayerful deliberation on this will yield an outcome best for you.

    Please keep us informed as you continue this journey.

    Best,

    K
  • mattmans5
    mattmans5 Member Posts: 70
    #3
    good luck
    I will say a prayer for you tonight ,
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #4
    Surveil
    Robert:
    If JHU tells you you can do active surveillance you can take that to the bank. They have an aggressive AS program and the restrictions are tight. I think you could do regular psa, DRE and the occasional biopsy, without going through it every 18 months, assuming psa and DRE are stable. This is a chance to avoid any treatment at all. This is a chance to hold the RT until necessary or, god forbid, another reason requires it. This is a chance to be potent and continent to the fullest extent. You are the prime AS candidate.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #5
    Active Surveillance patient
    You did not mention the number of cores positive, the amount of involvement in each, and the total cores taken?

    As a man who has been doing active surveillance since march 09, I am happy with this as a treatment option.....I've read, that if it is discovered that my cancer has progressed, I can still have a more active treatment, with very little or no increased risk to outcome...Of course I hope that my cancer is indolent.
  • Klemon
    Klemon Member Posts: 26
    #6
    Hi Robert~
    Prostate cancer
    Hi Robert~
    Prostate cancer is such a strange animal. My husband had rising PSA from 2007 (2.5) to 2010 (8.2)It was 3 biopsies before the third in 2010 revealed 1 postive core at 3+3=6. We elected for surgery , even though our urologist advised we could do watchful waiting probably for several years, due to the small amount and non-aggressive nature present.
    We went to Mayo in Rochester- Dr Frank- for a consult and surgery. They did not agree with the biopsy results from home and did a saturation biopsy which revealed alot of cancer and at a higher grade 3+4=7 and 4+4=8.
    That bought us an early surgery date to remove the prostate and an extended lymph node dissection- where all the pelvic lymph nodes are removed instead of just the local ones...- 5 1/2 hours surgery, very agressive. We were lucky, he was stage Tc2 (involved both sides of the prostate) and final Gleason downgraded 3+4=7. All lymph nodes negative. They believe it was contained. Dr advised that it had probably been there for years, but the needle biopsies are just shots in the dark. My husband had no symptoms or irregular DRE.. CT scan and pelvic MRI were negative. A saturation biopsy maps the prostate and gets a better sampling. Although you are put out for it, Most Drs will tell you that until they actually remove the prostate, you can not get a true picture of your real gleason score. Post op: My husband's PSA was undetectable at 3 mos.. we get the 6 mo results tomorrow.
    I believe watchful waiting is certainly an option for some who chose it, but if your life expectancy is greater than 10 years, you will eventually be treating it, and at that point, your options might be more limited. For us, surgery was the way to go. He has had no problems with incontinence beyond a drop or so leakage in the first few months while heavy lifting, and some leakage during sex during the first 4 months. ED is an issue but the meds and vacuum take care of that. Wishing you the best of luck
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #7
    Klemon said:

    Hi Robert~
    Prostate cancer
    Hi Robert~
    Prostate cancer is such a strange animal. My husband had rising PSA from 2007 (2.5) to 2010 (8.2)It was 3 biopsies before the third in 2010 revealed 1 postive core at 3+3=6. We elected for surgery , even though our urologist advised we could do watchful waiting probably for several years, due to the small amount and non-aggressive nature present.
    We went to Mayo in Rochester- Dr Frank- for a consult and surgery. They did not agree with the biopsy results from home and did a saturation biopsy which revealed alot of cancer and at a higher grade 3+4=7 and 4+4=8.
    That bought us an early surgery date to remove the prostate and an extended lymph node dissection- where all the pelvic lymph nodes are removed instead of just the local ones...- 5 1/2 hours surgery, very agressive. We were lucky, he was stage Tc2 (involved both sides of the prostate) and final Gleason downgraded 3+4=7. All lymph nodes negative. They believe it was contained. Dr advised that it had probably been there for years, but the needle biopsies are just shots in the dark. My husband had no symptoms or irregular DRE.. CT scan and pelvic MRI were negative. A saturation biopsy maps the prostate and gets a better sampling. Although you are put out for it, Most Drs will tell you that until they actually remove the prostate, you can not get a true picture of your real gleason score. Post op: My husband's PSA was undetectable at 3 mos.. we get the 6 mo results tomorrow.
    I believe watchful waiting is certainly an option for some who chose it, but if your life expectancy is greater than 10 years, you will eventually be treating it, and at that point, your options might be more limited. For us, surgery was the way to go. He has had no problems with incontinence beyond a drop or so leakage in the first few months while heavy lifting, and some leakage during sex during the first 4 months. ED is an issue but the meds and vacuum take care of that. Wishing you the best of luck

    disagree
    '' I believe watchful waiting is certainly an option for some who chose it, but if your life expectancy is greater than 10 years, you will eventually be treating it,''

    please provide documentation for this statement.....there are many who have indolent cancer, meaning not likely to spread, and die with, not because of prostate cancernwith no treatment, except active surveillance.
  • kimber45
    kimber45 Member Posts: 18
    #8
    hopeful and optimistic said:

    disagree
    '' I believe watchful waiting is certainly an option for some who chose it, but if your life expectancy is greater than 10 years, you will eventually be treating it,''

    please provide documentation for this statement.....there are many who have indolent cancer, meaning not likely to spread, and die with, not because of prostate cancernwith no treatment, except active surveillance.

    I'm 2 weeks out of prostate
    I'm 2 weeks out of prostate surgery done by Dr. Partin at Johns Hopkins. My initial biopsy report was 3+3+6. Dr. Partin told me I was a candidate for active survallence. I deceided to wait until this summer to have another biopsy. I later sent the slides from my biopsy to Johns Hopkins after it was suggested I do so. I got a call from DR. Partin saying my slides were upgraded to 3+4=7.and surgery would be a good choice because of the change. The point being-- Send you biopsy slide to Hopkins for a second opinion and go with what they suggest and try to relax. They are the best of the best down there.
  • shubbysr
    shubbysr Member Posts: 87
    #9
    kimber45 said:

    I'm 2 weeks out of prostate
    I'm 2 weeks out of prostate surgery done by Dr. Partin at Johns Hopkins. My initial biopsy report was 3+3+6. Dr. Partin told me I was a candidate for active survallence. I deceided to wait until this summer to have another biopsy. I later sent the slides from my biopsy to Johns Hopkins after it was suggested I do so. I got a call from DR. Partin saying my slides were upgraded to 3+4=7.and surgery would be a good choice because of the change. The point being-- Send you biopsy slide to Hopkins for a second opinion and go with what they suggest and try to relax. They are the best of the best down there.

    I'm 20 months out
    I also went the John Hopkins route after getting mixed, confusing, information here in South Carolina. Dr. Jarrow at JH was GREAT! but, he has since moved on to work for the FDA. Agreed that the JH staff are some of the best. Now have to search for a urologist for follow-up as needed. I may head back to JH, not sure just yet.
  • Robert1941
    Robert1941 Member Posts: 27
    #10
    shubbysr said:

    I'm 20 months out
    I also went the John Hopkins route after getting mixed, confusing, information here in South Carolina. Dr. Jarrow at JH was GREAT! but, he has since moved on to work for the FDA. Agreed that the JH staff are some of the best. Now have to search for a urologist for follow-up as needed. I may head back to JH, not sure just yet.

    Plan For Now
    After much prayer considerations and talking with many peoples from my church and with doctors and specalists and in a PCa group near my work, I have decided to go with AS for now and if my condition gets worse I will probably go with cyberknife at GW in Washington DC for treatment. Thanks to experences of Kongo and others who wrote here, I am also cutting milk and cheese from my diet and limiting red meats. My PSA has alread gone down half a point since I started this diet and tho my doctors don't think diet had anything to do with it I do and believe tghose who have posted here.

    As a black man I know my risks are maybe higher than others but I do have good insurance and a good doctor now that I got away from one who was rushing me to surgery who are good supporting me in this decision.

    Thanks again to Kongo who urged me to go to John Hopkins and talk to a surgeon about my condition and he was able to put everything in focus for me. Before then I was lost and getting much different and bad advice.

    I am taking PSA every 3 months and exercising and watching my diet. I feel good.

    God bless and best to everyone here who helped me with advice and understanding.
  • mrspjd
    mrspjd Member Posts: 694 Member
    #11
    Robert1941 said:

    Plan For Now
    After much prayer considerations and talking with many peoples from my church and with doctors and specalists and in a PCa group near my work, I have decided to go with AS for now and if my condition gets worse I will probably go with cyberknife at GW in Washington DC for treatment. Thanks to experences of Kongo and others who wrote here, I am also cutting milk and cheese from my diet and limiting red meats. My PSA has alread gone down half a point since I started this diet and tho my doctors don't think diet had anything to do with it I do and believe tghose who have posted here.

    As a black man I know my risks are maybe higher than others but I do have good insurance and a good doctor now that I got away from one who was rushing me to surgery who are good supporting me in this decision.

    Thanks again to Kongo who urged me to go to John Hopkins and talk to a surgeon about my condition and he was able to put everything in focus for me. Before then I was lost and getting much different and bad advice.

    I am taking PSA every 3 months and exercising and watching my diet. I feel good.

    God bless and best to everyone here who helped me with advice and understanding.

    pay it forward
    Robert,
    You are a good example of how important it is to be proactive in obtaining a PCa education and in being your own best advocate by doing your research. You did not let any grass grow beneath your feet and, instead, quickly educated yourself about your own unique PCa stats, asking many questions, seeking 2nd opinions, and ultimately weighing risks/benefits in arriving at a tx decision/choice that you, along with your doctors, believe is right for you--a disciplined AS program with regular 3 month testing under your doctor's supervision.

    I'm glad you have shared your experience and progress and, I know you will pay it forward as you educate those men and women that you encounter as your PCa journey continues.
    All the best,
    mrs pjd

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