On_A_Journey's journey

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  • swl1956
    swl1956 CSN Member Posts: 264 Member
    #62
    https://csn.cancer.org/discussion/comment/1723679#Comment_1723679

    Thanks for the link.

    I've always been a lean person, but after 7 months of ADT I'm beginning to feel some sensitivity and slight enlargement in the breast area. I don't consider myself a vain person, but I must admit I'm concerned about gynecomastia. I'm 6'-1" tall and weigh 165 lbs. A thin body with a big set of hooters would make me feel very self conscious. So, I guess I do have some ego issues. Anyhow, there are pharmaceuticals for this, but I'd rather not take them considering they come with side effects as well. I understand the breast tissue can be radiated to prevent gynecomastia. I'm going to ask the opinion of my radiologist at my next appointment. Estradiol patches might abate the ADT side effects for bone loss, and hot flashes. I'll be asking my medical oncologist about this as well. I'm a fan of Dr. Mark Scholz. In this video he discusses and compares these treatments. Sounds like he is in agreement with you concerning Estradiol patches.

    https://www.youtube.com/watch?v=U6V5pr-KAyQ
  • On_A_Journey
    On_A_Journey CSN Member Posts: 171 Member
    #63

    Now, that's my kind of doctor! 😀

    Thank you so much for posting that video @swl1956. My opinions about estrogen, either as a primary treatment or as a solution to the side effects of ADT, are just that - opinions. But I feel vindicated now after watching that.

  • Josephg
    Josephg CSN Member Posts: 526 Member
    #64

    I've sent a note to my Oncologist, asking for her opinion on Estradiol patches.

  • Josephg
    Josephg CSN Member Posts: 526 Member
    edited July 24 #65

    I received a reply from my Oncologist.

    "The Doctor reviewed your message. There is a slight concern with this medication affecting your cancer, but more importantly a thromboembolic risk. In addition, there are high rates of gynecomastia seen with this medication."

    I will discuss in greater detail at my next-person-to-person appointment on 8/27.

  • swl1956
    swl1956 CSN Member Posts: 264 Member
    #66
    https://csn.cancer.org/discussion/comment/1723719#Comment_1723719

    Please post how that conversation went after your appointment.

  • On_A_Journey
    On_A_Journey CSN Member Posts: 171 Member
    #67

    Today I received the results of my latest PSMA Pet scan. Again, all clear, but obviously another false negative.

    It was a good consultation. My wife and I had a lengthy and detailed discussion with my radio-oncologist about the results and what any future radiotherapy would consist of if I do end up with a positive result next time, and we came away better educated. He was also happy to make a referral for me to see a medical oncologist for the purpose of fully discussing ADT options with them in the meantime.

    That said, I am still on active surveillance with 3-monthly PSA blood tests and follow-up consultations for now. We will wait until my PSA reaches 2.0 (it is currently 1.0) before getting another scan, but if things go haywire then I'm happy to have the ADT card up my sleeve. My current doubling time is 19.3 months, but that figure is slowly coming in. Perhaps I'm looking at my next scan near the end of next year. Not sure I can wait that long - I do feel like a ticking time bomb at times, and I'm not sure about waiting much longer for anything to show up in case the bandit makes a run for it beyond anyone's control.

  • Josephg
    Josephg CSN Member Posts: 526 Member
    #68
    https://csn.cancer.org/discussion/comment/1723960#Comment_1723960

    Thank you for your update. I fully understand your discomfort, knowing that the Bandit is there, but not PET visible yet. Try to take solace in the fact that the Bandit is still so small that it is not yet PET visible.

  • Old Salt
    Old Salt CSN Member Posts: 1,673 Member
    #69

    Glad to read that you can continue with Active Surveillance.

  • swl1956
    swl1956 CSN Member Posts: 264 Member
    #70

    It is a worry, but you're staying on top of it. It will be interesting to hear the medical oncologist's recommendations.

  • On_A_Journey
    On_A_Journey CSN Member Posts: 171 Member
    edited August 9 #71

    Thanks guys.

    I've thought of a better way to describe why I'm wanting to see a medical oncologist even if I don't start ADT any time soon. It is to come up with an effective Plan B, just in case I need it.

  • On_A_Journey
    On_A_Journey CSN Member Posts: 171 Member
    #72

    My appointment with an M.O. has been made for this Thursday, the 21st. I've spent a fair bit of time refining a list of questions for her, and I believe that I will be able to quickly judge from her answers how open minded she is about treatment regimens that are considered a bit left field, whether as treatment itself or managing the expected side effects. Compared to the poisons normally administered for ADT, I'm adamant that such alternatives will result in a far better QOL for me during treatment, IF and when it happens.

    My wife and I have also come up with a trigger point for ADT. Trigger points, actually. (1) If my PSA doubling time remains greater than 12 months but my next PSMA PET scan, agreed for when my reading reaches 2.0, is negative again. (2) if my PSA doubling time drops to less than 12 months in the meantime. It is currently 19.3 months, but six months ago it was 28.1 months.

    My most rehearsed line is, my highest priority is to delay my cancer progression.

  • Old Salt
    Old Salt CSN Member Posts: 1,673 Member
    #73

    Thanks for the update. Several of us are following your case and interested in reading about your experience with the MO later this week.

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