San Francisco: Newby - 58 Yrs - PSA 4.6 - Gleason 3+3 - Kaiser - Now What?

Paraplu
Paraplu Member Posts: 37
edited March 2014 in Prostate Cancer #1
Yesterday my doctor called me and told me I had non-aggressive prostate cancer. Just the word cancer sounds aggressive enough as it is though.

I have no experience with Kaiser Hospitals, no experience with my doctor, let alone figuring out the next step. I'll be meeting with Dr. Felix-Fretes in 2 weeks to talk about options.

I'm sure like a lot of you, there is this initial thought of 'cut it out'. I understand the PSA 4.6 is low, but it only took me a year to get there from 2.2 about a year ago.

- Anyway, any news about Kaiser in San Francisco?
- First reaction is 'cut it out' , 2nd reaction is 'radioactive seed implants'.
- Not sure what Kaiser offers or if there is even a choice.

Any suggestions on either of these thoughts? I am in good health so surgery would not be an issue.

Thank You!

Comments

  • whubbs
    whubbs Member Posts: 77
    #2
    Right place
    You've come to the right place.
    Mine was a diagnosis not much different from yours.
    See a thread I was posting with my outcome http://csn.cancer.org/node/163769
    Otherwise, search around the postings, you'll find lots of information and advice.

    One thing I should point out is that PSA isn't a true indication of 'how bad' the cancer is or how aggressive it is. It's a simple indicator and should be considered with the Gleason score and staging that will be determined after the biopsy.
    The Gleason score is an important indicator of the aggressiveness.

    I personally consider robotic to be the gold standard if applicable.
    In your case I think it is.
    Seeding has its pros and cons. Pro is the non-invasive method.
    Con is that it damages nearby tissue and nerves, this will result in incontinence, erectile dysfunction and the inability for surgery later.
    I would think, given the ability, surgery first, radiation later.
    Unless of course, if your older or if the cancer has spread already.
    Thats my opinion.

    Feel free to contact me through my original posting, I'd be happy to share my experience.
    Good luck to you!
  • BDJC
    BDJC Member Posts: 9
    #3
    things to consider
    Paraplu - you're definitely doing the right thing researching your options. Surgery is one of the best options for you, as it has one of the best cure rates available. The key thing to remember in looking at surgeons is the experience of the doc. Don't focus on the particular procedure (whether it's traditional open radical prostatectomy or the new Da Vince radical prostatectomy) as much as on how many procedures he has done and how effective he was in all of the men he has treated (and by effective I mean how many of those men achieved and maintained PSA 0.2 ng/ml 10 years after treatment). He should keep track of all of that information in a database, and if he doesn't, then he doesn't really know how well he treats prostate cancer - he's just guessing.

    Seeds alone do not have a good track record of cure by the above definition. They use a different definition for cure - usually the ASTRO definition - that significantly inflates their results.

    Another option for you is external beam treatment followed by seed implant - it has a much better long-term success rate than seeds alone, and since you're a young man, I'd put that on the list of procedures to consider far above just seeds.

    At your age and pre-treatment characteristics, surgery is definitely a good option for you. There is a less-invasive procedure to consider, called ProstRcision, that actually has a higher overall cure rate than surgery. It's a combination of the seeds followed by IMRT external beam treatment. You can read more about it at http://www.prostrcision.com/ - especially read the Q&A section. I recommend you fill out the form on the Contact Us page and check the box to get your own Individual Cure Rate. They'll also schedule a free phone consultation with a board-certified radiation oncologist. That way you'll have all your options, and you can't have too much information right now.

    Best of luck to you.
  • acslife
    acslife Member Posts: 12
    #4
    Now What
    I like whubbs' response. Did robotics at 55 and going on almost two years, with minor side effect. Feel free to email me for details at freve@bellsouth.net

    Best wishes
  • Paraplu
    Paraplu Member Posts: 37
    #5
    whubbs said:

    Right place
    You've come to the right place.
    Mine was a diagnosis not much different from yours.
    See a thread I was posting with my outcome http://csn.cancer.org/node/163769
    Otherwise, search around the postings, you'll find lots of information and advice.

    One thing I should point out is that PSA isn't a true indication of 'how bad' the cancer is or how aggressive it is. It's a simple indicator and should be considered with the Gleason score and staging that will be determined after the biopsy.
    The Gleason score is an important indicator of the aggressiveness.

    I personally consider robotic to be the gold standard if applicable.
    In your case I think it is.
    Seeding has its pros and cons. Pro is the non-invasive method.
    Con is that it damages nearby tissue and nerves, this will result in incontinence, erectile dysfunction and the inability for surgery later.
    I would think, given the ability, surgery first, radiation later.
    Unless of course, if your older or if the cancer has spread already.
    Thats my opinion.

    Feel free to contact me through my original posting, I'd be happy to share my experience.
    Good luck to you!

    Thank You
    Thanks so much for all your kind words and helping me trying to get to the bottom of this before I see the doctor again. I read your blog whubbs, very helpful although I am amazed how long it really takes to get back to normal.

    Catheters dont sound like much fun, good thing I work from home most of the time though, will make things a lot easier.
    Again, thanks everyone for their encouriging words. Much appreciated
  • JoeMac
    JoeMac Member Posts: 77
    #6
    What to do Now?
    Aloha Paraplu,
    Sorry to hear that you have joined the PC club. We also have in common Kaiser. Kaiser is basically first a company that sells insurance and second provides health care. I've had a rough go with Kaiser. There are good doctors and not so good doctors. If you do not get good vibes within the first few minutes of meeting a new doc, try again.
    It also would be a good idea to get a second opinion of your biopsy.
    http://www.yananow.net
    is a good place to research info on PC.
    Kaiser contracted out for my EBRT/IMRT plus ultra sound guidence, no implants. Your Gleason = 6. How many of your biopsy samples were positive?
    Six is border line. The chances are good that your PC is still contained. I felt that I did not have a choice and I did choose EBRT even though CAT, MRI, Bone Scan did not show anything.
    My 12 biopsy samples were 5 to 70%, PSA 9 to 14 over 6 months, & G=9. My Kaiser urologist quit about a month prior to treatment, so I had no one to answer questions. ASK QUESTIONS!
    The web site NCI on prostate cancer is also a good place to find lists of questions.
    Good luck,
    Faith, Hope, Love,
    JoeMac
  • Paraplu
    Paraplu Member Posts: 37
    #7
    JoeMac said:

    What to do Now?
    Aloha Paraplu,
    Sorry to hear that you have joined the PC club. We also have in common Kaiser. Kaiser is basically first a company that sells insurance and second provides health care. I've had a rough go with Kaiser. There are good doctors and not so good doctors. If you do not get good vibes within the first few minutes of meeting a new doc, try again.
    It also would be a good idea to get a second opinion of your biopsy.
    http://www.yananow.net
    is a good place to research info on PC.
    Kaiser contracted out for my EBRT/IMRT plus ultra sound guidence, no implants. Your Gleason = 6. How many of your biopsy samples were positive?
    Six is border line. The chances are good that your PC is still contained. I felt that I did not have a choice and I did choose EBRT even though CAT, MRI, Bone Scan did not show anything.
    My 12 biopsy samples were 5 to 70%, PSA 9 to 14 over 6 months, & G=9. My Kaiser urologist quit about a month prior to treatment, so I had no one to answer questions. ASK QUESTIONS!
    The web site NCI on prostate cancer is also a good place to find lists of questions.
    Good luck,
    Faith, Hope, Love,
    JoeMac

    Thanks
    Thanks so much, this is great input!

    I have a follow up visit with the urologist in about 2 weeks, at least that will give me ample time to figure out what questions to ask and prepare myself for the answers.
    On to the next web site ....
  • Judge
    Judge Member Posts: 10
    #8
    Paraplu said:

    Thanks
    Thanks so much, this is great input!

    I have a follow up visit with the urologist in about 2 weeks, at least that will give me ample time to figure out what questions to ask and prepare myself for the answers.
    On to the next web site ....

    What next?
    Paraplu -

    My experience may be of help to you.

    I'm 58 and in otherwise excellent health. My PSA is 16.52 up from 14.5 just 2 months ago. After a byopsy, 1 core of 12 samples tested positive for PC. The Gleason score is 3+4=7. The doctor and I discussed various treatments, and he strongly suggested that Robotic Radical Prostatectomy is the best option given age, health and degree of cancer. He believes that this procedure will also assure the greatest chance of "normal" post operative recovery and erectile functioning. I'm attaching a list of the questions, that I took in to the doc's appointment. As a Judge and formal trial lawyer, I always have lots of questions. They just come naturally, you might say. I hope these questions, that you ask of your doc, will help:

    Diagnosis:

    o Where’s the cancer? How much cancer? If we don’t know, how do we determine? What’s the known path of PC? Can it be monitored?


    o How aggressive and how detemined? Does biopsy tell you anything about this?


    o What stage?


    o What part of the gland? Lymph nodes, seminal vessels? In the procedure, I choose, which is the best treatment for my condition given what we know of the lymph node health?


    o What time limits do I have to make decisions? Should I take hormonal treatments until a decision is made-Casodex, Lupron, Zoladex injections.



    Treatment Questions:

    • How many treatments have you done? What "success" rate in terms of "cured" cancer and other side effects?

    • Don't I need a bone and CT scan?


    • The treatments? Radical with nerve-sparing (Johns Hopkins), Robotic Prostatectomy (Seattle), DaVinci, HIFU, clinical trials-see list


    • Which has greatest success of ridding cancer? How do we know this?


    • What are known or suspected side effects? How do we minimize them?


    • Life expectancy? What percentage have recurrence, at my stage?


    • Is radiation used with surgery? Weight loss?


    • Other countries? – Actavis launched Bicalutamide in 2008 in Europe???


    Preparation for Treatment?
    • Hormonal treatments now, eg., Casodex, Lupron, Zoladex?


    • Payment options?


    • Protein and diet, exercise?


    I hope this helps.

    Judge
  • Paraplu
    Paraplu Member Posts: 37
    #9
    Very Helful
    Thanks so much, this is very helpful. I am compiling a list of questions for when I meet with the urologist the 2nd of March and this is extremely useful for me.

    Thanks again
  • g8rb8
    g8rb8 Member Posts: 18
    #10
    Paraplu said:

    Very Helful
    Thanks so much, this is very helpful. I am compiling a list of questions for when I meet with the urologist the 2nd of March and this is extremely useful for me.

    Thanks again

    Paraplu,
    Sorry to hear about
    Paraplu,

    Sorry to hear about your diagnosis. Ask all the questions you can think of. There are resources for other questions.... www.ustoo.org along with this site are both great resources.

    My cancer was first called a 3+3=6 on the biopsy, but came back as 4+3=7 after removal with one portion 1/2 mm from the gland wall. From all I have read, many times the Gleason scores are underestimated from the biopsy. You have to talk closely with your urologist about where the positives are located.

    The deciding factor in my mind of surgery vs. radiation was the idea that radiation of any kind significantly reduces the ability to do surgery later on in the event of a recurrence. Surgery first does not impact radiation later on.

    You have to go with what's best for your situation, but the previous posters are absolutely right that you have to be comfortable with your dr. You'll know that very soon in the process. Don't be afraid to ask them a lot of questions. You can tell a lot about them by the way they react to your questions, also.

    Best wishes and let us know how everything goes.
  • g8rb8
    g8rb8 Member Posts: 18
    #11
    Paraplu said:

    Very Helful
    Thanks so much, this is very helpful. I am compiling a list of questions for when I meet with the urologist the 2nd of March and this is extremely useful for me.

    Thanks again

    PSA
    and one more thing.....

    Don't let the PSA being "low" influence your decision much. Mine was only 2.3 and yet it was a Gleason 7, T2C. You have to take all the factors into account. In my situation, fortunately, the dr that did my DRE was filling in for someone else. His normal specialty is geriatrics and he didn't like the "feel" of my prostate and recommended me on for another DRE and PSA. The PSA was "normal" for my age, but the urologist agreed that it didn't feel right and scheduled the biopsy.

    Prayers for good docs and better outcomes.
  • Unknown
    Unknown
    #12
    This comment has been removed by the Moderator

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