18 months of hormone injections for my Gleason 10 - sounds very long
Hello, last year I had a radical prostatectomy, 33 external beam therapy sessions, and slow release ADT injections for 9 months - my previous Gleason 10 score is now down to 0.04 finally. I have been experiencing lots of side effects from the hormones - brain fog, dizziness, lack of energy, extreme mood volatility, sleeplessness, anxiety, frequent hot flushes etc. There is a new oncologist in town who is recommending another 9 months of ADT injections for me as the latest research apparently says that the 18 month course has much better results - this sounds like a very long time of further suffering for me, potential with no better outcomes. The previous oncologist was suggesting only 9 months of hormones, which I believe is common practice. So my question is: has anyone had such a long 18 month ADT treatment, or heard about this duration being common practice? Will really appreciate your help with this, thank you so much.
Hi
. Unfortunately, many men here understand what you are saying about ADT and it is understandable that you don't wan to add more months of it. First, it seems that your doctors didn't sufficiently explain the difference between the Gleason score and the PSA score. The Gleason score is a measure of the aggressiveness of the cancer, with a maximum of 10 (see this article for a detailed description: https://prostatecancer.net/diagnosis/gleason-score). The PSA score measures a protein made by prostate cells. It is produced at higher levels by prostate cancer, so when it rises it can be indicative of prostate cancer. The 0.04 number you mentioned looks like a PSA score. The fact that it is low is a good thing. ADT lowers the PSA score.
Concerning how long a man should be on ADT, a lot of factors particular to an individual case can play a role - the aggressiveness of the cancer, was there any spread of the cancer and to what extent, current PSA score and any change in it ... Variables such as these make it impossible for us to advise you on whether you should continue ADT. I can tell you that your doctor is not incorrect in citing the 18 month number. This recent article on the topic states "Most males who have RT for locally advanced prostate cancer are also given ADT (see 'Androgen deprivation therapy' below). Having both treatments helps to control the cancer and improves the chance of survival. Most experts recommend treatment with ADT for 18 to 24 months:" https://www.uptodate.com/contents/prostate-cancer-treatment-stage-i-to-iii-cancer-beyond-the-basics?sectionName=MONITORING%20FOR%20A%20RECURRENCE%20OF%20THE%20TUMOR&search=benign%20prostatic%20hyperplasia&topicRef=880&anchor=H20&source=see_link#:~:text=Most%20males%20who%20have%20RT,for%2018%20to%2024%20months. That said, don't hesitate to ask your doctors for specifics as to why your case requires it. Wishing you the best and please feel free to keep us posted on how you are doing. Richard (ProstateCancer.net Team)thank you so much for your reply, it makes sense, and I think now that 18 months of ADT will be beneficial, despite the major side effects that I would need to manage somehow going forward.
Sorry that I mixed up the Gleason and PSA scores in my post, of course as you point out my current score of 0.04 is PSA rather than Gleason (I think this is evidence of brain fog side effects that I mentioned haha).Hi
. Glad to be of assistance. My father-in-law had prostate cancer that had spread outside the prostate, had radiation, and also had to extend the ADT. The good news is that his side-effects abated pretty quickly. You may want to ask your doctor about Orgovyx (relugolix), which is a new pill form of ADT. Along with other benefits compared to the shots, it is know to leave the system quicker. This article from the National Cancer Institute goes into more detail: https://www.cancer.gov/news-events/cancer-currents-blog/2021/fda-relugolix-prostate-cancer-androgen-deprivation-therapy#:~:text=Relugolix%20is%20known%20as%20a,that%20patients%20take%20every%20day. As a side note, I understand some about the brain fog. My wife, Kelly, was diagnosed with a severe form of an autoimmune condition at two and some of the medications she has had to take over the years (along with the disease itself) create periods of brain fog. Best, Richard (ProstateCancer.net Team)
bottom line they don’t know. If you follow the money though it appears it’s REALLY good for a dr to give the ADT shots. I’m on adt 2 months and going through salvage RT now at 22 months post RP due to reoccurrence. It’s a freight train rolling downhill and IS going to reach the bottom, we are just trying to slow it down. I’m 52 and told I won’t be needing my 401k. Quality of life matters. : so sorry to hear about reoccurrence. Just wondering if you considered some apparently successful clinical trial treatments, such as the PMSA theranostic therapy (lutetium-177)? Also some alternative treatments, such as those by Dr. Burzynski in Houston TX, https://www.burzynskiclinic.com/? My heart goes out to you... as long as there are different options, there is hope, please hang in there Dave, for me, it is my lovely girls - wife of 40 years and our 38yo daughter - who keep me going.
Paul62
Back in April of 2016, at age 52, I was diagnosed with prostate cancer and a Gleason score of 4+3 in 6 of the samples. My PSA was 23. After much discussion with my Urologist, I decided to go with what he called a Tri-Modal treatment. Hormone deprivation (Lupron), External radiation, and Internal radiation.
I began with a Lupron injection (4 month shot) and started image guided radiation treatment not too long afterward.
Over the course of treatment, I had two more four-month Lupron shots. Although my Dr. wanted me to continue them for at least another year, I could not handle the side-effects. I was moody, had hot-flashes, gained 50 pounds, and I was horrible to be around. If there was one drug made by Satan, it would be Lupron. I chose to stop the Lupron for the sake of quality of life. I felt it was destroying my life; at least that was my experience. Once you take the shot, you are in it for the ride.
My Dr. and I both agreed that we would continue to monitor the PSA every three months. Once my PSA fell below 1.0 My Dr. started using the Ultrasensitive PSA testing with a lower limit detection of 0.01. My PSA is still undetectable. Last July I celebrated five years "cancer-free". We started counting in the summer of 2017 after the last Lupron shot wore off. We went to a six-month testing schedule in 2022.
Last week I received my latest results and am pleased to announce my PSA is still below the lower limit of detection (lower than 0.01). Next test is at the end of July.
I hear ya on the Lupron. I took a gamble and stopped it, but I also had 23 imaged guided radiation sessions under my belt, and 45 Pd 103 seeds implanted in my prostate.
Regards,
Scott
- great to hear that you have had five years of undetectable PSA! My latest PSA also shows as undetectable, so obviously something worked to push it down there from PSA 17 Gleason score 9 - the problem is knowing exactly which part worked in my case: radical prostatectomy, radiation, ADT, or all of these at once. Everything you say about ADT is also true in my case - weight gain, anxiety, mood swings, depression, etc - but I guess I'm too chicken to stop the ADT treatment in case my PSA starts rising again. Instead, I'm doing all I can to not make this situation miserable for my wife and daughter - that takes lots of work and perseverance every day. Hope to be cancer free for many more years to come, at 61 I'm completely not ready to die yet, it will not make any sense or serve any purpose, or so I try to somehow control my thoughts so as not to go completely crazy! - I'm glad to hear that you are able to push through it and control the side-effects to some extent. I just could not do it any longer. My father has an 80 year old friend that has been taking Lupron for years and still gets out to play golf two or three times per week. I've spoken to others who, like you, are able to handle the side-effects. To be frank, I envy you for being able to do that.
It was a tough choice and a gamble for me to stop taking the Lupron, but it was my choice. I was absolutely miserable, and my relationship with my family was deteriorating. My children where only 14, 12, and 8 at the time and I felt needed to be there for them rather than sitting at home in front of a window unit AC watching TV.
My mood swings where often uncontrollable. Just looking outside when it was raining could make me cry. My employees where getting sick of my crap and several left. My weight ballooned and I looked like a Texas tick; just a head and limbs attached to a blob of jell. That's the way I felt anyway.
