Newly Diagnosed and Alone/Widowed.

billray
billray Member Posts: 4 Member
edited September 2023 in Prostate Cancer #1

I am 65, otherwise incredibly healthy and active for an older guy. I am widowed, live alone, so sharing my thoughts with someone is awkward b/c no one is here. My Sons and their wives (even though in their 40s, seem removed and uninterested... so that's not an option. (I will share that their mother died at age 44 from brain cancer- so I know they are removed b/c of fear). I was incredibly exhausted and finally after months was sent to a Urologist. My PSA had jumped to 5+ and returned to a normal 4.08. Sent for MRI, which indicated a couple" very aggressive cancer likely", with tumors on both sides of my prostate. Biopsies revealed a G score of 7, with mostly majority 4+3s, a couple PNIs- but NO 5s... for which I am thankful. The oncologist said observation was not recommended b/c all indicated over time a poor outcome. I had 5 fiducial markers placed a week ago, a final MRI and CAT coming next week, and then shortly thereafter Cyber Knife radiation. I am hoping the biopsy and the fiducial marker placements are the worst of this journey. It wasn't pleasant, to put it mildly. I have had no bone scan, etc. I am worried about the nerve invasion, of course. Should I be worried about the effects of the radiation? The lack of a bone scan? Will the CK radiate the entire gland or will it focus only on the lesions? Any words of wisdom will help. ...I might also add that my younger brother passed from PCa in his later mid-50s. Sort of scared, but not really. I guess this is normal too.

Comments

  • eonore
    eonore Member Posts: 185 Member
    #2

    Hi Billray,

    Cyberknife is a gold standard treatment and is usually tolerated very well with little side effect. Typically, the oncologist will irradiate the entire gland, since current imaging and biopsy can not definitively locate every possible lesion. Also, radiation allows for a widening of the field to deal with the perineal invasion. Based on your PSA, you have caught this early, and have a great chance to beat this for good. Hang in there.

    Eric

  • Clevelandguy
    Clevelandguy Member Posts: 1,177 Member
    #3

    Hi,

    Just make sure they put the gel between your Prostate and Rectum becore they hit you with the radiation. The gel will protect your Rectum from the effects of the radiation hitting your Rectum.

    Dave 3+4

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #4

    Some additional info:

    Cyberknife is just an instrument. The therapy is called Stereotactic Body Radiation Therapy (SBRT). It can be done with various instruments although the Cyberknife system is the best known.

    Now that the fiducial markers have been placed in your prostate, sometime later (the fiducials need to 'settle in') the radiation sessions can begin. You will be (or should be) told how to prepare with respect to food and liquids. Prior to each SBRT session you will be told to undress and wear a gown.

    Each session typically lasts less than an hour. You will lie on your back, listen to music (if you so desire) and won't feel a thing. Afterwards you can go home again. Five sessions are common, but there are other variations.

    It is of course important that the radiation oncology team has a great deal of experience. The team that helped me had a great record in that aspect (more than 1000 procedures a few years ago).

    There are many studies that show that SBRT has excellent outcomes for low grade prostate cancer like yours (Gleason 7 and presumably contained within the prostate).

    When I was treated the SpaceOAR hydrogel (system) didn't exist, but the radiation oncologist that treated me now uses it (he told me).

    It is not uncommon to have some side effects from the radiation, but they usually disappear by themselves. They did for me.

    Here is a link to MRI guided SBRT (not available when I was 'under the knife').

    MRI-Guided SBRT Could Represent Safer, More Precise Radiotherapy Option for Prostate Cancer (onclive.com)

  • billray
    billray Member Posts: 4 Member
    #5

    I did not know the acronym for the method. Thanks for the info. It will help me to become more informed as I read and experience.

  • billray
    billray Member Posts: 4 Member
    #6
    https://csn.cancer.org/discussion/comment/1708766#Comment_1708766

    Thanks, Eric, for taking the time to respond. I appreciate it.

  • MCole
    MCole Member Posts: 1 *
    #7


    https://csn.cancer.org/discussion/327023/newly-diagnosed-and-alone-widowed

    It's the fact that you are alone and widowed that resonates with me. I'm 68, healthy and independent I even work a full-time job from home. It hasn't been officially announced to me but with my very high PSA just discovered in a routine physical, cancer is a certainty. I'm just beginning the journey with my first follow up to the PSA test tomorrow. I'm resigned it will be grim news.

    I'm not so such worried about the unpleasant medical side of things. I worry about dealing with it alone. Even if one can call on friends, they don't want the duty of caring for you. They don't want the discomfort of not knowing what to say.

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #8

    With respect to support, there are patient groups specifically for prostate cancer. I hope you can find one that is convenient for you.

    In addition, there's this forum, as well as several others, where one can find support and information.

  • billray
    billray Member Posts: 4 Member
    #9
    https://csn.cancer.org/discussion/comment/1709211#Comment_1709211

    Yeah. I have found a few friends have actually decided to let me make my way through this by myself… sort of disappointing but I wasn’t surprised. There are moments in course of the day when I pause and cancer is all I think about, but for the most part I am handling the appts and testings and scans quite well. Like you, my close friends really do not need to be burdened by my illness, so I made a conscious, emotional decision to be the person I depend upon for my emotional needs. I build me up, I stay busy, I sing, I laugh…. and I tear up omce in awhile b/c it is scary. I am wishing you well!

  • centralPA
    centralPA Member Posts: 322 Member
    edited October 2023 #10

    Welcome aboard @billray

    I only really talk about my PCa with folks here, in complete openness. I keep my wife informed, and she is helpful in going to appointments, etc. Keep my mother up to date. That’s it. Pretty much seek my own counsel. I’ve learned so much about our cancer that it is almost a bother to try to explain it to anyone not in the fight.

    If I ever do find out a friend has it too, I will be right there with a load of info to help them out. Knowledge is power, power is control, and control is what puts fear in its place.

    Something I read once that really frames a lot is “all fear is of the future.” We don’t fear what is happening right now, we fear what is going to happen. So make a plan, then stare at your feet while you march towards it.

    A really good book to read is called Deep Survival. You can Google it, there are synopses in line. It outlines best behaviors in a survival situation, and in fact that’s what you are in.

    Sending strength!

  • lighterwood67
    lighterwood67 Member Posts: 393 Member
    #11

    Well, all I can say is that you are still you. I was told over the phone that I had PC. They set up appointments for me on the surgery side and the radiation side. I chose surgery. I kept Quality of Life (QOL) in front of me. My wife and I had just started camping. I remember being incontinent for 4 to 6 months; we still camped. At this time, my PSA is undetectable; continent; intimate with wife. So, what does that mean, I never let the PC get in the way of QOL. To me it means I continue doing what I enjoy doing. I have nicer things to think about than PC. To me I have not missed a beat on that. Good luck on your journey.

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