Radiation + ADT
Like many of you, I am weighing my options regarding surgery vs radiation. 61yo, healthy and active guy. PSA 5.5, MRI negative for any spread outside the prostate, 12 core biopsy with 2 cores 3+3, 1 core 3+4 and one core 4+3. All positive cores were confined to the left part of the gland.
We've had 2 surgical consults and last week met with a Radiation Oncologist. The docs are from 2 major cancer centers. Both surgeons felt that I would have a good outcome but to my age and overall good heath and weight. Surgery and the possible complications still scare the heck out of me......maybe too much reading of internet forums!
Radiation I thought would be more appealing but the RO brought up some points that have me worrying and I would like some input on. My main concern is the use of ADT along with the radiation. He said the standard is 6 mo of ADT and that it would take an additional 6 months for me to get feeling back to myself afterwards. How bad is the shorter term ADT? I am fit, active and working full time and if I am going to feel like crap, lose muscle mass and basically be in a funk for a year, I'm not sure I can handle that. The other issue he brought up that I hadn't really seen talked about is that if you have preexisting urinary issues with urgency, weak stream, etc that radiation will make those issues worse in the short term and potentially in the longterm. I'm on Flowmax now and it does help, but apparently due to the anatomy of my prostate, I am predisposed to having those urinary issues. He said that the urinary issues are greater for the 5 treatment radiation vs the 30 treatment due to the dosages.
I will say I love the idea of the Tulsa Pro, but I don't know that it is appropriate for 4+3 disease. The docs that I mentioned it to are saying they just don't have the longterm studies on it yet, but does that mean you aren't going to recommend new technology without 15 years of data? We would never advance anything if that were the case! I also understand that it is cancer we are dealing with here and we really don't want to mess around.
Thanks in advance for sharing your experiences and giving me some input. Very hard decisions to make as you all know.
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marlow2, there is a pill form of ADT called Orgovyx. The recovery after quitting the drug is said to be much faster than the injectibles. Your husband may be more receptive to it. The advantage and disadvantage is that a person might have to decide everyday if they are going to take it. Shrinking the tumor would increase his chances for continence and keep him safer during the wait until March.
I am on week 11 of Orgovyx. You are correct in that the recovery once therapy is finished is much quicker. Additionally it knock downs the testosterone quicker than Lupron and does not cause a testosterone spike as Lupron does. Orgovyx may cause less cardiac toxicity in those with cardio comorbidities. As to deciding to take it every day that wea one of the reasons I asked my doc to put me on it as it gives me a modicum of control in this journey.
Layman comment:
Orgovyx is reported as having the benefits that Toolbelt listed.
I elected Orgovyx for those reasons and took it for a prescribed 4 mos course.
However, in my opinion, you need to take the pill everyday, or discontinue the therapy entirely if the side effects are unmanageable. That's the relative "control" compared to a 3 or 6 month injection. Otherwise you may/probably are just messing up the therapy.
Missing too many days requires that the treatment course be restarted with the initial 3 pill loading dose.
And taking a day or so "break" will not relieve the side effects.
My side effects resolved 95% in 3 - 4 mos after finishing the treatment.
But a few days or a week after I stopped taking the Orgovyx did not provide any appreciable relief or dimunition of side effects.
So yes, I am a fan of Orgovyx and would opt for it again if/when I need ADT (Note that it can be expensive, and it was for me, compared to the injectables because it is a Part D drug and injectables are covered differently under Medicare Part B).
Hope this is helpful and blessings for good health to all.
Thanks. I am not advocating taking an Orgovyx "break", rather the psychological boost knowing I ____could____ stop, vs having a monthly or q 3 monthly Lupron injection is important to me.
Sounds as if you tolerated it well. Hopefully both you and I will not need it again, but so far my side effects of minor hot flashes are totally manageable.
Stay Strong Brother!
excellent point michaelcharles. Better outcome if we can resolve to take the medications prescribed. There is procedureal advantage in taking ADT two months before radiation. Lower testosterone levels are "said" to ensue within 4 days and the (not so very) sweet spot is at two months. I'd rather the gentleman in question consider orgovyx than skip ADT altogether, but completely understand the reluctance. Thank you for your experienced response and for the blessings.
Hello All, this is weakbutstrong on 2/13/2024
I saw the NP yesterday. She and the MD assured me that a testesterone level of 41 was not worrisome and that my Testesterone may slowly rise to as high as 300. They will be concerned if my PSA and Testesterone rise rapidly, sharply. PSA was < 0.02 and is now 0.04 and they will set up a date for a scan if the PSA rises rapidly to 0.2. So my faith remains in the skill and practice of my healthcare team although I still have the "willy's" about the risks of Testesterone in the back of my mind. Therefore we did not choose to start another series of Lupron shots. Hope this helps to ease your minds and it assists you when asking questions and raising concerns to your healthcare team. God Bless you all and Our Secty of Defense,
I, similarly, had only one 4+3 core, of 16 that were sampled. I was advised that made my overall score 4+3: intermediate unfavorable, one of the worst definitions that I could imagine. I was further frustrated by grading of T1c/T3a. The later diagnosis made me think that I could get a more precise result from a fortune teller. Of course, I was happy not to be Gleason 8+ and unhappy not to be G6 or G7, however, these designations of 'comme ci comme ça' made choosing the right therapy much more difficult for me.
My eventual treatment involved 4 months of Orgovyx, along with Cyberknife Boost x2; 25x EBRT/VMAT. My main RO (I saw quite a number of Urologists and ROs) said that after 6 weeks of ADT, most of the cancer shrinkage would be done. I completed the drug on 20th January and still have some symptoms, albeit, less than before.
You should read the threads about cost for Orgovyx. There are ways to get financial aid, but, none of them worked for me even if I stated that my income is entirely from Social Security and I tried half a dozen methods. I was offered a free month, but, that was rescinded after they discovered that I already paid $1400 co-pay for the first month, i.e. they'd already set the hook.
I stopped Advil without issue after the last radiation treatment on 12th January. I tried to stop taking Flomax, 1 per day, but urinary flow weakened and I resumed the single dosage. I'm about 80% of normal urinary flow now and have no other significant side effects.
I met my RO yesterday who said I'm in remission and we need to meet and monitor in 3 months, then 6 months. He reiterated a previous message that the chance for recurrence within 10 years is less than 25% which is reassuring. However, I'm still concerned that I could have overtreated, and hope that future diagnostic techniques and grading nomenclatures improve.
Gleason 9, Stage 2, and 13mm tumor confined to prostate confirmed by PSMA Pet scan.
Easy decision for me to go with Orgovyx, especially given my cardiovascular status.
After 23 days, my testosterone dropped from 454 to "less than 6". And my PSA dropped from 30 to 4.
Hot flashes are annoying but worth it... peace of mind knowing low-T is starving my tumor, which provides the best chance for success of my radiation treatment plan (HDR Brachy + SBRT).
I was not able to get a deal on the Orgovyx so I’ve opted for the monthly injections of Firmagon which, I’m hoping, will have similar side effects to those reported for Orgovyx since they are both antagonists versus Lupron which is an agonist. I have my first injection in March after returning from my NZ-Australia cruise.