To Treat or Not To Treat??.. Update..

dale1k
dale1k Member Posts: 23 Member
edited April 2023 in Prostate Cancer #1

Well, I finally got my Decipher genomic test results yesterday and they were terrible... I have a high risk of having aggressive cancer ... So my urologist stated that A/S would not be recommended.. I'm not sure how much credence to give to the test, but that along with the data from the biopsy puts me in the treatment category.. I asked about a PSMA Pet Scan and he is going to see if Medicare will approve.. Depending on that outcome, I may pursue a 2nd opinion.. If treatment is necessary, I am going to choose the Radiation route as opposed to surgery due to the other medical condition I mentioned in my original thread.. For those of you who chose radiation, just curious what type, what were the significant side effects, and was it successful?? I am researching Brachytherapy, SBRT(Cyberknife), IMRT, and others ... It's confusing as hell... I'll be 68 in a few days, ride my bike daily, feel really good, and am in good shape.. I hate the thought of losing that, but it seems very likely this will be necessary.. Any input would be welcomed...

Comments

  • centralPA
    centralPA Member Posts: 341 Member
    #2

    Dale, based on what you wrote before it didn't appear that AS was going to be an option anyway, since you looked to be unfavorable intermediate. Sucks that the genomic test came back confirmative, but hopefully this will clear up the decision on AS versus RT and you can focus on which brand of RT to pursue.

    I haven't had RT, but based on everything I've read, there's a good chance you can continue your lifestyle, with a bit of a bump in the road. More experienced folks will pop in to confirm, I'm sure.

  • eonore
    eonore Member Posts: 185 Member
    #3

    Dale,

    I had my prostate removed, and subsequently had hormone therapy withe thirty nine sessions of IMRT. Other than boredom and inconvenience, I had zero side effects from radiation. I am a little over three years out.

    Eric

  • dale1k
    dale1k Member Posts: 23 Member
    #4
    https://csn.cancer.org/discussion/comment/1698623#Comment_1698623

    Thanks... that's good to know... I appreciate the information...

  • dale1k
    dale1k Member Posts: 23 Member
    #5
    https://csn.cancer.org/discussion/comment/1698615#Comment_1698615

    So, I met with the radiation oncologist and much to my dismay, she recommended SBRT along WITH hormone therapy.. I wasn’t expecting that… I was mentally prepared for radiation but to add hormone treatment has me nervous and disgusted at the same time.. Apparently it’s my bad Decipher result that is driving her recommendation… Now scheduled for a PSMA Pet scan this Friday… Hoping that just for once I can get a good result… Good or bad, I certainly will get a 2nd opinion before making any treatment decisions…

  • eonore
    eonore Member Posts: 185 Member
    #6


    How long a course of hormone therapy was she recommending?

  • dale1k
    dale1k Member Posts: 23 Member
    #7
    https://csn.cancer.org/discussion/comment/1698892#Comment_1698892

    I think she mentioned 6 months but wants to see the results of my upcoming Pet scan first… I’m concerned about the side effects of the hormone therapy… I’m hoping that I can continue to stay active .. I keep seeing articles about how good exercise and staying active is good for prostate cancer yet this treatment could impact that… I’ll deal with it, but not happy about it…

  • centralPA
    centralPA Member Posts: 341 Member
    edited August 2022 #8

    @dale1k just looking at the guidelines...assuming she follows them...

    https://www.auanet.org/documents/Guideline/PDF/Localized%20Prostate%20Cancer%20Guideline%20050922.pdf

    35. In patients with unfavorable intermediate-risk prostate cancer electing radiation therapy, clinicians should offer the addition of short-course (four to six months) ADT with radiation therapy. (Strong Recommendation; Evidence Level: Grade A)

    Since you are squarely in the unfavorable intermediate risk category, maybe peeking over the side of the fence into high risk with your genomic test, it seems logical that a short-course will be proposed.

    Never forget that you decide the treatment, though.

    Maybe seek out a clinical trial? You should look around.

    Definitely Prostate Cancer is a **** sandwich that you have to eat, no matter you slice it. There will be no path out that guarantees cure with no side effects, its all a visit to the Treatment Casino. I feel your pain, shipmate.

    Sending strength!

  • dale1k
    dale1k Member Posts: 23 Member
    #9
    https://csn.cancer.org/discussion/comment/1698910#Comment_1698910

    Thanks for the info.. I just had my PSMA Pet scan today so will get results early next week... I'm taking a couple of weeks off with a vacation in Florida.. I know I will have to deal with the proper treatment based on the best information I can get ... A lot depends on that Decipher test... I know the accuracy is supposed to be very good but it would be nice to be able to double check/confirm those results... I've narrowed down 2nd opinion to Mayo, Cleveland Clinic, J. Hopkins, or UCLA if I feel I need to pursue that route... That being said, if hormones are required as part of the treatment, I'll handle it... Thanks again for your input..

  • dale1k
    dale1k Member Posts: 23 Member
    #10

    Update... PSMA PET scan came back negative except for the already diagnosed cancer.. The tumor area was rated "moderate" ... So I currently have no metastasis (finally some good news) ... I will be getting a 2nd opinion from one of the big guys to look at my total medical situation, lifestyle, etc and see what they say regarding the best treatment that would fit my specific situation.. I keep hearing how important staying active and exercise is in fighting prostate cancer so I am hoping I can pass on the ADT hormone therapy..

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #11

    Many have completed a short course (6 months) of hormone therapy and recovered from the side effects. As you wrote, staying active is good in many ways (physical and mental). I did 18 months of hormone therapy and can still type... 😀

  • dale1k
    dale1k Member Posts: 23 Member
    #12
    https://csn.cancer.org/discussion/comment/1700035#Comment_1700035

    I hear you.. I just wonder how many have totally recovered from "other" areas if you know what I mean...

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #13

    dale1k:

    With respect to 'hormone therapy' (ADT) you can ask for Orgovyx. This is a one-a-day pill. It's more expensive and your insurance may not cover it, but the advantage is a faster recovery of your testosterone afterwards. You also won't need to take Casodex in advance to minimize the T flare with Lupron.

    Efficacy | ORGOVYX® (relugolix) HCP Site (orgovyxhcp.com)

  • dale1k
    dale1k Member Posts: 23 Member
    #14
    https://csn.cancer.org/discussion/comment/1700048#Comment_1700048

    Thanks.. I'll ask about that...

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