Initial Diagnosis of Gleason 9 in 100% of biopsy cores

wtb_informed_wife
wtb_informed_wife Member Posts: 6 Member
edited July 2022 in Prostate Cancer #1

My 66 year old husband was diagnosed with Gleason 9 (4+5) in 100% of the 14 cores taken in January 2022. Cribiform pattern, intraductal carcinoma, periprostatic fat invasion, seminal vesicle invasion, perineural invasion and lymph-vascular invasion were all present. His thorax CT showed enlarged left superclavicular, right hilar and retrocrural lymph notes as well as small bilateral pulmonary nodules (9 of them).

He had a catheter for 4 months due to acute urinary retention and recently has a TURP that has alleviated the problem. He has been on enzalutamide and zoladex. His PSA has gone from 26.4 to 0.4 and his testosterone is also minimal. His main side effects are hot flashes and feeling tired all the time. His neuropathy (pre cancer) seems to have moved up to his knees (possibly enzalutamide).

I'd love to hear from anyone else who has been on a similar journey. We have travelled avidly in the past and are hoping we can still do so. We're scaling it down to cruising (with doctors on board) rather than land-based trip. Is this realistic and what might our journey look like over the next few years?

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #2

    Hi,

    Your husband's situation is very advanced, particularly regarding the involvement of the lungs.

    Hormonal treatment (ADT) is traditionally recommended to aliviate the burden and progress of the cancer but the side effects can become nasty.

    Zoladex could be the baddy causing pain at the knees and other joints. Tiredness is also typical due to the low testosterone (chemical castration). Hot flashes are a cause of pituitary disruption also due to zoladex (LHRH agonist).

    In any case, I believe that you are aware that ADT is palliative. It doesn't lead to cure. It manages to pin down the bandid to an extend period that can be years.

    Along this period you husban will be in need of other medications to counter the side effects, etc, so that I would recommend that he has a medical oncologist specialist in prostate cancer to follow his case.

    I also would look for "friendly" drugs in the ADT arsenal to avoid/substitute with those that cause lesser "damage". Firmagon is better than Zoladex.

    When pain is unbearable at joints, doctors usually recommend spot radiation of the area. The noodles in the lungs, depending on its location, may also be disected.

    Overall, he should try to enjoy life with the lesser interventions. Go and visit those corners in the world you always wanted but never got there.

    Best wishes in this journey of yours.

    VGama

  • eonore
    eonore Member Posts: 185 Member
    #3

    Hi,

    I do not know where your treating, but if finances and insurance allow, I would get your husband to a cancer center of excellence, for second opinion and perhaps treatment. You want physicians who are up to date on the latest and best treatments.

    Eric

  • wtb_informed_wife
    wtb_informed_wife Member Posts: 6 Member
    #4
    https://csn.cancer.org/discussion/comment/1698177#Comment_1698177

    Hi, He is being treated at Princess Margaret Hospital (cancer hospital) in Toronto by Tony Finelli (urologist). He has been referred to an oncologist for possible radiation to the prostate. In Canada, all of his treatments are covered and being 65 and over, all of his medication is covered. Dr. Finelli is supposed to be the best - in the province anyway. Other options? Trials?

  • wtb_informed_wife
    wtb_informed_wife Member Posts: 6 Member
    #5
    https://csn.cancer.org/discussion/comment/1698159#Comment_1698159

    Thanks VGama - I think that suggestions to minimize drug consequences make sense. Thank you for your thoughtful and detailed response.

  • eonore
    eonore Member Posts: 185 Member
    #6

    Hi,

    I just looked Dr. Finelli, and he certainly has fine credentials, but he is a surgeon. Along with a radiation oncologist, you need a referral to a top flight medical oncologist who specializes is prostate cancer. A medical oncologist manages your husbands medication regime.

    Eric

  • wtb_informed_wife
    wtb_informed_wife Member Posts: 6 Member
    #7
    https://csn.cancer.org/discussion/comment/1698181#Comment_1698181

    Thanks Eric. We'll look into that. We'll reach out to our GP for a referral. It has never been suggested by anyone so we'll start the conversation.

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

    I agree that a medical oncologist with expertise in prostate cancer should be added to your team ASAP.

  • wtb_informed_wife
    wtb_informed_wife Member Posts: 6 Member
    #9
    https://csn.cancer.org/discussion/comment/1698191#Comment_1698191

    I think at Princess Margaret Hospital (dedicated to cancer with a dedicated prostate cancer centre) just works with a urologic oncologist and a radiologist. Dr. Finelli focuses on keeping the PSA low and administers/prescribes the HT drugs. He also performed Bryan's TURP. He referred Bryan to a radiologist in the same prostate cancer centre. Do you think he is covered?

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #10

    Less familiar with the Canadian system, but it appears that your husband is in good hands at Princess Margaret Hosp.

    Do go travel as much as you two can; as Vasco already pointed out, your husband's situation, serious as it is, can be controlled for a long time with current drugs. And who knows about new developments?

    I recommend a DEXA scan to establish a base line for (your husband's) bone density. Some of the ADT (HT) drugs cause bone damage and you want to be alert about those.

  • wtb_informed_wife
    wtb_informed_wife Member Posts: 6 Member
    #11
    https://csn.cancer.org/discussion/comment/1698219#Comment_1698219

    Yes, I'm thinking of also getting a PET scan. These aren't things we can easily get without a doctor requesting them (as they are free to us ... so who gets them is heavily controlled by our medical system) but we can go to Buffalo and get them done.

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