Hormone treatment - were you given a choice of methods or drugs?

On_A_Journey
On_A_Journey Member Posts: 38 Member
edited May 4 in Prostate Cancer #1

I am experiencing a biochemical recurrence and might be put on ADT soon. Whether I should head down this path before metastasis detection or not is a moot point - this thread is only about the different types of hormone therapies available and whether anyone was given a choice when they were put on it for whatever reason, by their oncologist at the time. I hope this thread flies because I'm really interested in the responses.

Knowing for a couple of years now that ADT will probably be my next step, I have done a lot of research and have become familiar with what is normally administered nowadays, and what used to be.

The way I see it, there are four different ways to go: (1) Bilateral orchiectomy/surgical castration. From what I understand it is rarely performed nowadays because of its permanency and the hang-ups that some gentlemen have, but it is cheap and fast acting and may be a better option for those required to undergo permanent treatment. (2) Chemical castration, the modern gold standard, and able to be administered intermittently, but with its own set of options - which specific drug, and whether there was a choice? Agonist or antagonist? Lupron/Eligard or Zoladex? Firmagon or Orgovyx? (3) Estrogen, shunned nowadays because of a history of cardiology issues besides the expected overall feminization effects on the body besides gynecomastia, but from what I have researched, it is quite effective as ADT, is osteoporosis and hot flash sparing and available transdermally nowadays which negates the cardio issues. (4) Anti-androgen monotherapy, available in some European countries. It also has a much higher percentage specific chance of gynecomastia compared to either of the castration methods but it spares the sexual side effects and also has less likelihood of hot flashes.

Personally, I would favor (3) or (4) over (2) because the side effects I am willing to tolerate are less of a burden on my mind from those two options than the expected side effects from (2). I would also have no hesitation with (1) compared specifically to (2) if I was ever told that ADT had to be permanent.

To repeat the question, for those who have been made to undergo ADT, were you given any choice of treatment methods? Or drug choices within method (2)?

Comments

  • Old Salt
    Old Salt Member Posts: 1,043 Member
    edited March 17 #2

    Good for you to study all the options.

    I can only tell you that from what I have read that many seem to prefer Orgovyx over Lupron. As you know, their mechanism of action is different, but they both typically reduce testosterone to castrate levels. Orgovyx acts faster and may have fewer cardiac related side effects. Recovery from Orgovyx is faster as well, but it can be significantly more expensive (depending on insurance).

    PS: when I had hormone treatment, Orgovyx wasn't available and options other than Lupron were not mentioned by my urologist.

  • J69
    J69 Member Posts: 35 Member

    I am just completing 18 months of Orgovyx. One pill a day in the morning was easy to remember. The side effects are the same as most of the other treatments. No libido, some weight gain, some loss of energy in the afternoon. A short nap takes care of that. Some sweating off and on that has diminished as the months went on. Some have complained of brain fog on other forms. I have never had that SE. My testosterone has moved down to zero and PSA has been undetectable for many months. If you have any serious SEs, you can stop it at any time. It is your personal choice, so advocate for yourself when you visit the doctor. I hope for the best possible outcome for you.

  • On_A_Journey
    On_A_Journey Member Posts: 38 Member

    Thanks guys.

    Taking a daily pill is preferable to me rather than a subcutaneous implant every 12 weeks if and when I get to that stage, but I assume that most of the choice is taken away by other factors.

    Plus, I'm a bit worried that if and when, oncologists may not always be prepared to listen to their patients concerns about which side effects are acceptable and which ones are not and that the decision to administer a certain drug is not negotiable. I guess I'll probably find out in due course.

  • Old Salt
    Old Salt Member Posts: 1,043 Member

    Even the smartest doctors can't predict which side effects will hit YOU the hardest. As you probably know, some patients report few side effects and others encounter major problems.

    Therefore, my advice is to just bite the bullet and hope for the best.

  • On_A_Journey
    On_A_Journey Member Posts: 38 Member

    I actually worry about the side effects of any drugs administered for the primary side effects more! For example, for dealing with hot flashes if they're bad enough, drugs like Cyproterone Acetate (Androcur) or Megestrol Acetate (Megace) are apparently quite effective, but they are an appetite stimulant! I am happy being me, not me+20kg! And the almost-as-successful anti-depressants like Effexor sometimes administered for it instead, have their very own set of horrible side effects. No thanks!

    But you are right, cross that bridge when it comes.

  • VascodaGama
    VascodaGama Member Posts: 3,598 Member

    Hi again,

    How old are you?

    When we exchanged opinions, in Dec '22, your PSA was close to 0.5 in a slow growing path of PSAdt greater than 12.

    I wonder if the increase has maintained a similar growth.

    Probability it has and with that you may be still far-away from starting an ADT sequential in a systemic approach.

    In any case, you are doing well in exploring what is or would be available to you by the time you need something, if you give up in pursuing an oligometastatic treatment (spot radiation) for the intent of still killing the bandit and getting cured.

    In your original thread we talked about thresholds used by oncologists to identify the clinical status of a systemic case and project a therapy.

    That "threshold methodology" provides milestones along the period of our treatment, giving us a discipline way to follow and fill accomplished.

    But, interestingly, last week I had a zoom consultation with a famous american medical oncologist that told me that there is no such fixed PSA thresholds dictating the start of a treatment in systemic cases.

    His practice is based on the needs to treat when such time arrives. In other words he recommends to follow a maintenance approach dependent on periodical multi disciplinary testing and exams to evaluate the clinical status along the lifetime of a person.

    The multi disciplinary testing should include the whole healthy parameters, genetic performance and imaging. That is to say that in systemic treatment the idea of earlier therapy doesn't exist. In fact, ADT only aims in "regulating" the PSA. The bandit continues alive and progressing.

    Here is your initial thread:

    https://csn.cancer.org/discussion/326041/definition-of-biochemical-recurrence#latestm

    Best wishes

    VGama 

  • On_A_Journey
    On_A_Journey Member Posts: 38 Member
    edited April 2 #8

    Hello again VG, nice to hear from you.

    I am 60y3m, and to summarize, my last several PSA results are thus:

    Jan 2022, 0.33

    Apr 2022, 0.38

    Jun 2022, 0.41

    Sep 2022, 0.43

    Dec 2022, 0.48

    Feb 2023, 0.57. Note, this was only a 2-month interval from the previous.

    I have played around with several PSA doubling time nomograms and have seen my DT reduce from around 21 months in December last year, to 18.3 months in February, and *speculating only* that my next result might be 0.70, my calculated DT will be down to 13.4 months. All based on 5 most recent results. Clearly heading in the wrong direction. Again, this is just speculation and time will tell.

    It is the increase in velocity that is worrying me more than anything else at the moment. I understand the reason for thresholds, but in a couple of visits time I could find myself in the unique position of <12m DT with a PSA less than 1.0 and cells that still remain undetectable from scans.

  • VascodaGama
    VascodaGama Member Posts: 3,598 Member

    Hi,

    Your situation is typical of recurrences from salvage radiotherapy (SRT).

    Ten years ago any oncologist would classify the situation as "systemic", that would lead doctors in recommending systemic treatment with ADT, chemo or immunotherapy.

    But due to the success in treating breast cancer cases with spot radiation, before advancing with chemo, doctors "discovered" a newer sequential approach for PCa cases they call The Oligometastatic Therapy.

    This is restricted to cases of a fewer number of metastases (used to be lesser than 5 numbers), which would be found/located at preferential locations avoiding the areas radiated in the SRT procedure.

    To such extent, one needs to locate the spots firstly. For that, PSMA PET scans provide the most advanced imaging which in combination with previous CT and MRI results, helps to identify the areas for treatment.

    Some guys have benefitted from this approach and some encountered trouble in radiating areas previously radiated. It seems that the best is to commit to this approach if the spots are located at newer areas, or only advance the treatment after 5 years of the SRT to allow healing of affected soft-tissues.

    PET scans also provide better results (less false negatives) when the PSA is above 1.0 ng/ml.

    I have tried to locate the bandit with a 18F-CHOLINE PET in 2018 that succefuly detected one lymph node deep in the Abdomen, in a difficult access to extract a biopsy. The doctor was reluctant in doing RT for it being closed to previously radiated area.

    Again In 2019, I did a 68Ga PSMA PET (PSA =1.7) which results were negative, in spite of an increasing PSA. Surely that was a false negative.

    A friend radiologist confirmed the negative result but I think that the image of the area close to the bladder (prostate bed) was blurred due to the excretion of the die (radiopharmaceutical) via the urine at the time the picture was taken.

    If interested in a similar approach I recommend you to give preferences to an 18F-DCFPYL PSMA PET scan, done when the PSA is above 1.5 ng/ml.

    Remember that ADT works the same at any level of PSA. You can wait. Earlier attacks in systemic situations do not represent a better choice.

    Google the matter and discuss with your doctor to check for possibilities.

    Best of lucks in your journey.

    VGama

  • On_A_Journey
    On_A_Journey Member Posts: 38 Member

    Thank you for your continuing interest and input VG.

    I have just had it confirmed by my oncologist that all my PET Scans to date have been of the PSMA variety.

  • Emily2015
    Emily2015 Member Posts: 6 Member

    In 2007, my husband was diagnosed with prostate cancer. He had Radiation treatment, and Zoladex. His PSA level came down and was taken off the zoladex after 3 years. One of the last appointment with his consultant, was his PSA was undetectable. We have had 15 years , thinking he is clear of the cancer. Now, We have been told it has now come back. His PSA level have been creeping back up. Had his first Zoladex injection today. He has been told he will be on it for life. We are not sure what to expect.

  • Old Salt
    Old Salt Member Posts: 1,043 Member

    Emily:

    Sorry to read about the medical issue faced by the two of you.

    1. Would you please give us the actual PSA test results?
    2. What kind of radiation did he get in 2007?
    3. A PSMA scan would seem prudent at this time.

    PS: It would be much better to start a new thread because your husband's issue has little to do with the original topic of this thread. To do so, use the New Topic button (blue)