prostate and MS

max27
max27 Member Posts: 8
in Prostate Cancer #1
I have been diagnosed with Intermediate PC w/ score of 7. I have all of the options open to me to be healed. I have MS and this makes it complicated for the doctors because they do not have experience with MS patients. I want nerve sparring procedure. Either surgery od radiation. I have been married for 35 years. We have been good in bed. Any thoughts on what treatment will be better to save the nerves and MS being in the mix?

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    #2
    Prostate cancer and MS
    Hi, Max, and welcome to the forum. I've read that prostate cancer in conjunction with MS is not uncommon. Diabetes is another chronic disease that seems to accompany prostate cancer as well. I can understand why some specialists in prostate cancer would be unfamiliar with MS but I would imagine that a cancer hospital that treats a variety of cancers rather than a single urologist office would have doctors familiar with this dual condition.

    As MS is an autoimmune disease I would think that you would want to seek a treatment that minimized the risk of infection. In my opinion a radiation treatment would pose less risk in this area than any type of surgery. Newer forms of radiation also have fewer cases of urinary incontinence and ED than what you could expect from surgery as well.

    As you go through the consultation process, I would see out cancer centers that are familiar with treating cancer with other diseases such as MS.

    Just curious as to where you live as some studies show that there is a north/south correlation to both prostate cancer and MS with the theory that those residing in northern climes get less vitamin D which has been theorized as a causative factor in both MS and prostate cancer.

    Good luck to you and I hope you keep us posted on your progress.

    K
  • rch
    rch Member Posts: 79
    #3
    MS and Ca P
    Max
    Sorry to hear that you have CaP on top of MS. How was the MS diagnosed - was it an incidental MRI finding or you have symptoms? How are your base line functional status, bowel and bladder functions, etc? As you perhaps know MS is prognostically a more favorable disease than CaP, and so you should opt for treatment. Please discuss with your Neurologist as well as PCP . I would also encourage you to post this on MS support group web site, where you will have more feed back from other pts who have this condition.
  • max27
    max27 Member Posts: 8
    #4
    Kongo said:

    Prostate cancer and MS
    Hi, Max, and welcome to the forum. I've read that prostate cancer in conjunction with MS is not uncommon. Diabetes is another chronic disease that seems to accompany prostate cancer as well. I can understand why some specialists in prostate cancer would be unfamiliar with MS but I would imagine that a cancer hospital that treats a variety of cancers rather than a single urologist office would have doctors familiar with this dual condition.

    As MS is an autoimmune disease I would think that you would want to seek a treatment that minimized the risk of infection. In my opinion a radiation treatment would pose less risk in this area than any type of surgery. Newer forms of radiation also have fewer cases of urinary incontinence and ED than what you could expect from surgery as well.

    As you go through the consultation process, I would see out cancer centers that are familiar with treating cancer with other diseases such as MS.

    Just curious as to where you live as some studies show that there is a north/south correlation to both prostate cancer and MS with the theory that those residing in northern climes get less vitamin D which has been theorized as a causative factor in both MS and prostate cancer.

    Good luck to you and I hope you keep us posted on your progress.

    K

    Prostate & MS
    Hi Kongo,
    Thank you for your interest in my condition. I reside in the San Francisco Bay Area. I was diagnosed by PSA tests from 2007, 2009 2010 & 2011. Biopsy in Nov. I had no idea I had PC. I still have no symptoms that I can tell I have PC.

    Radiation is in the front of my thought process.

    I am getting a second opinion from a leading PC doctor in the U.S. I am stuck in a HMO and have a fight to break out of their hospital and treatment system.

    Thanks again for your input.

    max27
  • max27
    max27 Member Posts: 8
    #5
    rch said:

    MS and Ca P
    Max
    Sorry to hear that you have CaP on top of MS. How was the MS diagnosed - was it an incidental MRI finding or you have symptoms? How are your base line functional status, bowel and bladder functions, etc? As you perhaps know MS is prognostically a more favorable disease than CaP, and so you should opt for treatment. Please discuss with your Neurologist as well as PCP . I would also encourage you to post this on MS support group web site, where you will have more feed back from other pts who have this condition.

    ms & pc
    rch,

    Thank you for your interest in my condition. I was diagnosed by PSA. Nov of 2011 I had a biopsy 12 samples taken. I had urinary flow issues only and they were dismissed as getting older by my primary doctor. He did order PSA tests anyway. Since 2007. In OCT. 2010 it jumped to 5.8 then dropped down to 4.8 in April 2011 and in OCT 2011 a rise to 5. That's when the biopsey was ordered and the result told me I had PC.

    Bowel works as normal and still does as of today.

    Radiation is in the front of my thought process for treatment. IMRT and a final brachy
    therapy treatment over a period of 3 weeks. Any thoughts on that treatment?

    I am getting a second opinion from a leading PC doctor in the U.S. We have two of the most highly rated research hospitals in the nation here in the SFBA. I am stuck in a HMO and have a fight to break out of their hospital and treatment system. My neurologist is not up on PC and treatment for it. I can get out of the HMO system if I can prove they are not experienced enough in the MS & PC treatment. If I had Blue cross, I could go anywhere to seek treatment. If I do go outside of my HMO, it is out of pocket for me until I get a waiver from them.

    If I were to rate my symptoms MS is more symptomatic and a daily impact than the PC for now.

    Thanks again for your input.

    max27
  • rch
    rch Member Posts: 79
    #6
    max27 said:

    ms & pc
    rch,

    Thank you for your interest in my condition. I was diagnosed by PSA. Nov of 2011 I had a biopsy 12 samples taken. I had urinary flow issues only and they were dismissed as getting older by my primary doctor. He did order PSA tests anyway. Since 2007. In OCT. 2010 it jumped to 5.8 then dropped down to 4.8 in April 2011 and in OCT 2011 a rise to 5. That's when the biopsey was ordered and the result told me I had PC.

    Bowel works as normal and still does as of today.

    Radiation is in the front of my thought process for treatment. IMRT and a final brachy
    therapy treatment over a period of 3 weeks. Any thoughts on that treatment?

    I am getting a second opinion from a leading PC doctor in the U.S. We have two of the most highly rated research hospitals in the nation here in the SFBA. I am stuck in a HMO and have a fight to break out of their hospital and treatment system. My neurologist is not up on PC and treatment for it. I can get out of the HMO system if I can prove they are not experienced enough in the MS & PC treatment. If I had Blue cross, I could go anywhere to seek treatment. If I do go outside of my HMO, it is out of pocket for me until I get a waiver from them.

    If I were to rate my symptoms MS is more symptomatic and a daily impact than the PC for now.

    Thanks again for your input.

    max27

    Max I'm sorry to hear that
    Max I'm sorry to hear that your treatment options are limited with the HMO, and that you are seeking out. There are a few members on ths forum who can advise you on that. I think December is the month for open enrollent . Are you on Medicare advantage plan ?

    As to treatment,you mentioned about Brachy + IMRT. It would be helpful if you wouldn't mind sharing the Clinical stage of the disease so that members on this forum can give some guidance on treatment options. That would also help you to ask the right questions when you see your 2nd opinion.

    I'm also in the SF Bay area with Kaiser Senior Advantage. I'm presently on active surveillance . Nonetheless I'm keeping my treatment options open. Kaiser only offers Brachy, RALP, RPP and EBRT/IMRT/IGRT, but no Proton or Cyberknife. Once again, it would be helpful if you share the extent of your disease ( Clnical Stage/Gleason score of 7-Is it 4+3 or 3+4 ?).
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #7
    max27 said:

    ms & pc
    rch,

    Thank you for your interest in my condition. I was diagnosed by PSA. Nov of 2011 I had a biopsy 12 samples taken. I had urinary flow issues only and they were dismissed as getting older by my primary doctor. He did order PSA tests anyway. Since 2007. In OCT. 2010 it jumped to 5.8 then dropped down to 4.8 in April 2011 and in OCT 2011 a rise to 5. That's when the biopsey was ordered and the result told me I had PC.

    Bowel works as normal and still does as of today.

    Radiation is in the front of my thought process for treatment. IMRT and a final brachy
    therapy treatment over a period of 3 weeks. Any thoughts on that treatment?

    I am getting a second opinion from a leading PC doctor in the U.S. We have two of the most highly rated research hospitals in the nation here in the SFBA. I am stuck in a HMO and have a fight to break out of their hospital and treatment system. My neurologist is not up on PC and treatment for it. I can get out of the HMO system if I can prove they are not experienced enough in the MS & PC treatment. If I had Blue cross, I could go anywhere to seek treatment. If I do go outside of my HMO, it is out of pocket for me until I get a waiver from them.

    If I were to rate my symptoms MS is more symptomatic and a daily impact than the PC for now.

    Thanks again for your input.

    max27

    Image Studies may provide more info
    Max

    I think that your choice in the combi of IMRT plus bracky is a good treatment. Results for success are high. Surgery is also an option but the cancer must be contained (whole inside the gland). It is common to have several image studies done before one commits. Probably with a PSA of 5 these scans come negative but they may give you a base-line for future diagnosis.
    I wonder why you cannot get consultations in other hospitals. Your doctor should give you credentials for you to get second opinions from other specialists. In your case with a radiologist caring for Brackytherapy.
    All treatments cause side effects that you should read about. You can find details in the net.

    Can you share the data from the pathologist report? What is your clinical stage?

    Wishing you peace of mind and a good Christmas.

    VGama
  • max27
    max27 Member Posts: 8
    #8
    rch said:

    Max I'm sorry to hear that
    Max I'm sorry to hear that your treatment options are limited with the HMO, and that you are seeking out. There are a few members on ths forum who can advise you on that. I think December is the month for open enrollent . Are you on Medicare advantage plan ?

    As to treatment,you mentioned about Brachy + IMRT. It would be helpful if you wouldn't mind sharing the Clinical stage of the disease so that members on this forum can give some guidance on treatment options. That would also help you to ask the right questions when you see your 2nd opinion.

    I'm also in the SF Bay area with Kaiser Senior Advantage. I'm presently on active surveillance . Nonetheless I'm keeping my treatment options open. Kaiser only offers Brachy, RALP, RPP and EBRT/IMRT/IGRT, but no Proton or Cyberknife. Once again, it would be helpful if you share the extent of your disease ( Clnical Stage/Gleason score of 7-Is it 4+3 or 3+4 ?).

    the second opinion
    Thanks for your interest. I am a kaiser patient. I also have AFLAC Cancer coverage. I have been paying that for 10 years now. I went to Stanford and the doctor said brachy is not a good option for me. The IMRT is best if I do not do surgery. I am intermediate stage Gleason 7 3+4 and it is contained in the gland. No bone cancer, they gave me the scan. I am 57 yrs old. I work and plan to work during my treatment period. K has offered every option to me to concider. The IMRT will be performed by an outside system hospital. John Muir. They have had the machine for 2 years. I have to have the gold implants put in by K. Then start the treatment. I have not commited to any treatment yet. I should do so ASAP.

    Regards,
    Max27
  • rch
    rch Member Posts: 79
    #9
    max27 said:

    the second opinion
    Thanks for your interest. I am a kaiser patient. I also have AFLAC Cancer coverage. I have been paying that for 10 years now. I went to Stanford and the doctor said brachy is not a good option for me. The IMRT is best if I do not do surgery. I am intermediate stage Gleason 7 3+4 and it is contained in the gland. No bone cancer, they gave me the scan. I am 57 yrs old. I work and plan to work during my treatment period. K has offered every option to me to concider. The IMRT will be performed by an outside system hospital. John Muir. They have had the machine for 2 years. I have to have the gold implants put in by K. Then start the treatment. I have not commited to any treatment yet. I should do so ASAP.

    Regards,
    Max27

    suggest a 3rd opinion
    Did the Stanford Consultant's recoomend surgery as the 1st option ? You might want to get a third opinion from UCSF as to surgery vs Brachy/IMRT as you do have outside insurance coverage. Since you also have MS, you could check with the UCSF consultant for a referral to a Neurologist. One of the problems however with all these renowned Research Centers is that they suck up all the big bucks you pay them, and spit out the same boiler plate language with all the statistics across the board , which mean nothing to you as an individual. At the end of the day, YOU have to make the right decision for you.

    As to Rad Tx I do know that Kaiser has a well established Brachy system at Roseville, with IMRT contracted out to other Hospitals. No Proton or SBRT. Cryo is contracted out to UCSF but used only for brachy failures. RALP is only mediocre at best, and they do not really recommend that to you unless you request it !! It just started only 4 yrs ago, but open RP is excellent at the Oakland facility. They do have a 2-man group which only does bladder or prostate cancers , and have done over a 1000 in the past 8-10 yrs . I don't know their incontinence/ED rates, but must be higher than Brachy.
  • max27
    max27 Member Posts: 8
    #10
    rch said:

    suggest a 3rd opinion
    Did the Stanford Consultant's recoomend surgery as the 1st option ? You might want to get a third opinion from UCSF as to surgery vs Brachy/IMRT as you do have outside insurance coverage. Since you also have MS, you could check with the UCSF consultant for a referral to a Neurologist. One of the problems however with all these renowned Research Centers is that they suck up all the big bucks you pay them, and spit out the same boiler plate language with all the statistics across the board , which mean nothing to you as an individual. At the end of the day, YOU have to make the right decision for you.

    As to Rad Tx I do know that Kaiser has a well established Brachy system at Roseville, with IMRT contracted out to other Hospitals. No Proton or SBRT. Cryo is contracted out to UCSF but used only for brachy failures. RALP is only mediocre at best, and they do not really recommend that to you unless you request it !! It just started only 4 yrs ago, but open RP is excellent at the Oakland facility. They do have a 2-man group which only does bladder or prostate cancers , and have done over a 1000 in the past 8-10 yrs . I don't know their incontinence/ED rates, but must be higher than Brachy.

    third opinion option
    Thanks for your input. Stanford did suggest surgery as the 1st option. I cannot be down for 3 to 4 weeks.

    I have a business and cannot be away. I do have the ability to commicate with the employees and accounts, but I have to have the presents to keep the business going. In very tough economic times, I can't risk going BK. My expertise is essental to the company success. I wish it was not so, but I am very good at what I do and have 29 yrs of experience. I cannot find anyone that can provide what I know.

    Cyberknife is still in the beginning stages of the procedure and the Stanford surgeon did not feel it was good for me. Surgey or IMRT is my two options.

    Any thoughts?
  • max27
    max27 Member Posts: 8
    #11
    rch said:

    suggest a 3rd opinion
    Did the Stanford Consultant's recoomend surgery as the 1st option ? You might want to get a third opinion from UCSF as to surgery vs Brachy/IMRT as you do have outside insurance coverage. Since you also have MS, you could check with the UCSF consultant for a referral to a Neurologist. One of the problems however with all these renowned Research Centers is that they suck up all the big bucks you pay them, and spit out the same boiler plate language with all the statistics across the board , which mean nothing to you as an individual. At the end of the day, YOU have to make the right decision for you.

    As to Rad Tx I do know that Kaiser has a well established Brachy system at Roseville, with IMRT contracted out to other Hospitals. No Proton or SBRT. Cryo is contracted out to UCSF but used only for brachy failures. RALP is only mediocre at best, and they do not really recommend that to you unless you request it !! It just started only 4 yrs ago, but open RP is excellent at the Oakland facility. They do have a 2-man group which only does bladder or prostate cancers , and have done over a 1000 in the past 8-10 yrs . I don't know their incontinence/ED rates, but must be higher than Brachy.

    third opinion option
    Thanks for your input. Stanford did suggest surgery as the 1st option. I cannot be down for 3 to 4 weeks.

    I have a business and cannot be away. I do have the ability to commicate with the employees and accounts, but I have to have the presents to keep the business going. In very tough economic times, I can't risk going BK. My expertise is essental to the company success. I wish it was not so, but I am very good at what I do and have 29 yrs of experience. I cannot find anyone that can provide what I know.

    Cyberknife is still in the beginning stages of the procedure and the Stanford surgeon did not feel it was good for me. Surgey or IMRT is my two options.

    Any thoughts?

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