Weighing the cancer risk reduction & quality-of-life cost of ADT?
My first post-prostatectomy PSA test this week came at < .02 as expected. I will meet with my urologist next week. Given my high risk profile (T3b stage+ SVI+ Decipher score of .75) I expect my urologist to propose adjuvant radiation treatment of the prostate bed plus ADT. I have been thinking a lot about this and I would definitley agree with the adjuvant radiation treatment, but I am not yet convinced that the incremental cancer control benefits of ADT outweigh its potential harms (metabolic, cardiovascular, bone health etc) . I am weighing this in the context of my value system at my age (in the 70's): moving forward, quality of life is much more important to me than the absolute length of life. To put it differently - if say given the following two options : 7 or 10 more years with quality of life vs 15 or more years with debilitating side effects that diminish my quality of life - I would choose the former.
How did folks in similar situations weigh the potential incremental cancer contral costs of ADT vs its potential harmful side effects? Are you happy with your decision or is there anything that you regret? How bad and long lasting are the side effects of ADT?
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
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@dksweet
No add-ons. Just Lupron every 3 months. that seemed to be enough.
@dksweet
Something to be aware of when being on ADT. Being on ADT alone can cause you to become castrate resistant. It happened to me after 2.5 years of being on ADT.
If you are put on a drug like Zytiga or Nubeq that can greatly extend the amount of time before you become castrate resistant.
Being castrate resistant can make it more difficult to treat your cancer and can reduce the amount of time drugs work.
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1 Reaction15 months ago I had 20 rounds of radiation for the prostate and prostate bed, and about 3 months or more before that, I was put on an ADT regime using Lupron.
I have an appointment with my Radiation Oncologist next week follwing the last blood analysis which has indicated a rise in my PSA from .001 to .003. Unfortunately, I have been a bit timid (and unprepared) at appointments with my Urology Oncologist, who indicated the recent change while also mentioning a rise in testosterone. I can see the effects of that increase in my penis and scrotum. This clearly looks like resistance has set in.
I hope not to have to have more radiotherapy, and that a new ADT treatment option is available. We shall see.
If anyone has experienced this I would welcome hearing your story.
As for the side effects of ADT itself, I have found it to be challenging but manageable. It's manageable because I'm retired and can get out of bed when I'm ready. [Yes, fatigue has been a side effect that limits my physical activity. ] The hot flashes seem to vary from day to day, and I'm now trying to figure out whether my sugar and/or salt intake makes them more frequent. Thanks
@freddy9
They rise from .001 to .003 can be ignored. I posted an NIH video that discussed the fact that people shouldn’t really be concerned with PSA rise until it hits at least .5. What you’re looking for is the doubling rate, And you can’t count doubling at such low numbers. This is definitely not time to be concerned.
A rise in testosterone can almost guarantee the PSA is going to go up a little, but it is not relevant..
Please take a look at this Message I posted and the video from the NIH that discusses the issues you are worried about.
https://connect.mayoclinic.org/discussion/are-castration-sensitive-pc-patients-being-over-treated/
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5 Reactions@grandpun thank you
@jeffmarc Thank you. Very helpful!
In response to Soli's post of Nov 25, I recall watching a presentation on Youtube in which they discussed the benefits of ADT, and one of the graphs really stuck with me. It showed that ADT resulted in an average length of life by about 13%. Didn't seem like much of a trade off to me considering the potential side effects, but everyone's situation is different of course.
@tango32652
At the monthly Mayo conference yesterday They showed a real interesting PSMA pet comparison of before and after being on ADT with a person with a number of metastasis. How much it reduced the metastasis is pretty eye-opening.
T2c GG3 PSA7 UIR disease: On my 35th day of Orgovyx. As for side effects, low libido, that's about it. I'm 70.
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2 Reactions@climateguy
If and when I experience BCR, the trade-off between the side-effect burden of ADT and its potential curative benefit will be a major concern for me. In one of his videos, Dr. Kishan—whom I consulted a few weeks ago about his clinical trials—states that ADT improves BCR-free survival from 82% to 85%. In the same video, he also says that for every 8 people treated, 1 benefits.
I understand this to mean that if I undergo ADT, I have only about a 12.5% chance of a very modest improvement in outcomes (an increase from 82% to 85%), but a near-100% chance of experiencing side effects that many people find debilitating. I did briefly raise this concern with both Dr. Kishan and his physiian assistant, but we did not discuss it in detail since I had so many other questions for them, including whether I will be good candidate for MRI-guided SBRT given my pre-existing urinary issues: that is if and when I experience BCR.
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