PSA was 0.01 August 2019; 0.05 February 2020, 0.11 August 2020 and 0.21 November 2020.
The latest PSA result of 0.21 defines another biochemical failure. I have not yet seen my oncologist, but would like any input on what's next and what should I ask for in treatment. My biggest concern is the accelerated rate of increase for my PSA results. Are the numbers too small to measure doubling time or is this really growing very vast. My first failure after surgery it rose quickly and I had salvage radiation. Also, I'm scheduled for an artificial urinary sphincter surgery next month, should I go forward with this given the PSA results.
Keep fighting that good fight.
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SoonerMark
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You have posted some interesting questions and I'll give it a shot at answering them... Your profile does not show gleason score which plays a role in the aggresiveness of your cancer. Your PSADT appears to be about 4 months by my calculation without having exact dates. The use of salvage radiation therapy versus adjuvant radiation therapy is dependent on factors like gleason score and surgical margins (tumor growth beyond the prostate capsule) and is still not a fully resolved issue. From an article released in October:
For the what would I do issue. The 18F-DCFPyl PET/CT has shown the ability to detect lesions at lower PSA scores. I would get this scan to determine if a lesion can be detected and where it might be located. Some information on the scan:
Depending on outcome, there will likely be several options such as adjuvant radiation or SBRT if oligometastatic. After getting the scan, you will likely be put on ADT and depending on what is found, receive treatment. Do keep in mind that the STAMPEDE trial and other trials showed a benefit from early abiraterone (Zytiga) and for high disease burden- use of Docetaxel...
I know it feels overwhelming and that's how I felt several years ago. Today, I am more relaxed as I watch developments occur in prostate cancer research. I wish you the best on this journey and feel free to ask questions as the only stupid question is the one that wasn't asked. BTW, you should be treated at a Prostate Cancer Center of Excellence to insure that you are getting the latest and best treatment. My Urologist would have put me on Lupron and waited till I recurred, but instead, I went to a Center of Excellence and got aggressive treatment. You should consider if that is an issue for you as well. Please feel free to look at my profile for information on what I did.
4+4 Gleason with limited positive margins. Im actually being treated at an NIH Cancer Center.
Earlier today, my urological oncologist's nurse called to inform me that although my PSA has risen, he didnt think it was enough to change the course of treatment. Which seems to be nothing except wait until February for my next PSA.
I'll check into the scan and trials, thanks for the information. Feel free to add based on the additional information provided.
As your time living with prostate cancer continues, you may also find these NCCN Patient Guidelines useful in considering "next steps" with your doctor(s).
The publications are very informative and compiled a lot of information. I wish these would have been available to me when initially diagnosed. Thank you so much for sharing with me.
Just a quick note re: AUS as I just had removal replacement for mine last Friday. I'm headed back home tomorrow from a stay with relatives and will write a follow-up post with more info when I get back. May not be able to get to it until the weekend, but short story is, Yes, do it ASAP.
In the meantime, Relax a bit and Stay Safe and Be Well - Captain K9
Hi, Cujoe--I'm thinking about an AUS (but will wait until pandemic dies down) and want to ask about your post. Do you mean that you had one implanted and are now having it replaced? I'd be grateful to know why, and how it all went--when you're up to describing it. Thanks.
I'll respond either here or in a dedicated post when I get time, but brief line is that I had ASU surgery #1 in 06/2016. That device failed this Spring and due to COVID restrictions have just had #2 remove/replace surgery. Will provide more details, but the reality is that the QOL improvement is why the AUS is considered the "Gold Standard" for male urinary incontinence. (I'd do a third remove/replace without any reservations, if that need arises in the future.)
If you haven't already done so, check out the mfg's website for information on the device, surgical install procedures, activation/deactivation, patient accounts, etc. I seem to remember it providing a lot of useful information.
If I don't respond directly here, I will let you know where I do. Stay Well - cujoe
Thank you, cujoe, very much for this extremely informative, thoughtful, encouraging and well-written post. I will have the procedure, but am going to wait until I can get an anti-covid vaccine and the pandemic dies down. I'm self-isolating with my wife until then anyway and incontinence at home is relatively easy to live with. I'll also have it done by one of the two surgeons at MSK who specializes in the procedure. MSK is two hours from my home, but the expertise of course beats the inconvenience. Other than the activation 6-8 weeks after implantation, were there any other meetings with the surgeon that you had to make (prior to failure)? And would you mind saying why/how your first device failed?
Sounds like a good plan. No substitute for an experienced surgeon working in one of the top medical faculties in the country. Two-hour drive to get that kind of care is well worth any inconvenience or travel expense. I have the good fortune to have relatives near my treatment center, so I was much better cared for there than I would have been locally. Depending on you age and general health status, you may also be discharged same day as surgery. That might mean going home with a catheter, but you could have that removed at any care facility where you live.
I originally was thinking of delaying both my cataract surgery and my AUS until 2021, but my vision was so screwed up after the detached retina, I decided to go with that procedure and then got an OR slot for the AUS. Since infections and hospitalizations are surging everywhere, I am now glad I got it done this year, as it looks like I just made it under the wire. (When AUS #1 failed in the spring, such "semi-elective" surgeries were pushed off the schedule due to possible COVID capacity issues.)
Good Luck whenever and whatever you decide to do. As my post implies, I am very enthusiastic about the ability of the AMS 800 to truly change your life for the better. The "Gold Standard" moniker is well deserved and the QOL improvement significant.
Keep us posted on how things go - and Stay Safe & Well - K9
1) In my case no meetings or follow-up appts post-surgery prior to activation appt. . My overnight "observation stay" was to allow me to go home without the Folley. Please note that depending on your insurance, part or all of an overnight stay "for observation" may NOT be covered by insurance. In my case, I am on Medicare with a full-coverage supplement, so my stay will be fully covered. It would be a good idea to get that sorted out before day of surgery.
You will probably be required to get an Xray of you lower abdomen before activation. As I said in the post, my doc uses a contrast agent in the fluid to ID any leaks and to clearly "see" all the device elements. Again, in my case I do that an hour or so before the activation appointment.
2) I have no idea the exact reason for the failure. The bulb on the activation pump started to lose firmness and after several days there was none. When I had my appointment with the surgeon a month or so later, the Xray confirmed the fluid had leaked. After four plus years of use, the doc said she thought it advisable to do a full remove/replace rather than attempt a repair. There is a "Surgical Pathology Report" in my Patient Portal labs that I assume is a requirement of anything removed during a surgery. Noting of note is in that report that would suggest a cause of the failure, so at my activation appt I will ask the surgeon if she saw any obvious damage/defects when removing it. (If I remember correctly, most research indicates about a 25% failure during the first five years, although there are plenty of men who have made it to ten years without a problem.
Since you have had radiation, you should be aware that that puts you at higher risk for "erosion" of the urethra. I had 8 weeks of IMRT and my surgeon said she saw some minor signs of erosion at the cuff location, but nothing significant enough for concern.
As I said in the new post, the outward signs of "injury" from the AUS surgery are greater than for a RALP, but the prostatectomy involves the removal of tissue, surgical reconnection of the urethra to the bladder, interruption of blood supply, and the possibility of even nerve damage, while the internal trauma from the AUS is more peripheral. The placement of the components involves making space for them and the connecting tubing. In the case of the fluid reservoir, it means tunneling a channel for the tubing from the lower abdomen to the scrotum and that, plus the incision to place it, make that area pretty sore. I am a very lean guy @ 135 x 5'-9" (at time of surgery), so the reservoir actually creates a small abdominal bulge at its location. More lower belly fat would make the tunneling easier and the reservoir itself unnoticeable. Either way, it is not a place you would ever want to be punched or hit with a hard object.
In essence, the major incision is a long one and makes sitting uncomfortable for several weeks. Again, I am a skinny guy, so my butt cheeks don't give me a lot of cushioning. And while not necessarily a part of the procedure for all surgeons, mine does an cleansing irrigation of the scrotum + to reduce the possibility of infection, which is the initial major risk for the surgery. That entails a certain degree of temporary trauma to the scrotum in particular.
Mobility is not a problem, as walking is always encouraged after most surgeries to reduce chance of rogue blood clots causing problems. I try to get up as soon as possible after surgery and walk the halls with my IV tower (Foley bag attached) as a temporary rolling crutch. As I said, I walked out of the hospital unassisted around noon on the day after to be picked up out front by relatives. In fact, even now, 11 days after the surgery, it is more comfortable to be up moving around than sitting - but then there's that vertical incontinence thing to think about.
I think I must have a pretty high tolerance for pain, since I usually get off any opioids the day of/after surgery. For this most recent surgery, I deferred the opioids from the get-go and went straight to Tylenol 2 x 500mg as needed (4 hr min) in hospital. I dropped back to 1 x 500mg as needed when I was discharged and after tapering over about three days, stopped even that. I do admit that I believe some minor level of pain/comfort is informative to us as we heal. so completely blocking all pain leaves us in the dark in that regard. Different strokes for different folks, so others may find that to be a stupid masochistic idea.
Thanks for sharing your experience. I'm not sure how much I trust the health care system anymore. It feels as if doctors have a decision system based on what insurance will pay for. I'm so thankful there are these types of forums to get information from other people in similar circumstances.
That fast doubling time is cause for concern . One of our other consumer research reviewers at cdmrp.mil had another form of radiation on his second recurrence post surgery. his first recurrence was treated with conventional imrt radiation and on his second recurrence he had protons. It had no side effects and it did cure the recurrence.
I waited a bit long for my conventional radiation after my recurrence it was about PSA 0 .45 before I got anything done but if I had to do it over again I would do radiation down at 0.1. that way if I got it done earlier I might not have had to do the Androgen deprivation therapy with it (I had much slower doubling time, with your fast doubling time you probably should do the 6 months on the ADT, but no need to put off radiation more than a couple weeks for the cassidex to prevent a surge upon Lupron injection . I only took the cassidex for a couple weeks and then had the lupron and started right into the radiation. I originally was going to do just three months Lupron but the doctor talked me into a total of 6 months I think the second three months were more miserable than the first three months, and think 3 months would been adequate. It took a month for my testosterone to come back beyond the 6 months and at that point I had my PSA and it was undetectable under .02 then in 2014 and ever since so I was real happy that it worked and so quick. IF YOU HAVE A CHOICE TRY TO GET AN IMAGE GUIDED RADIOTHERAPY WHETHER IT'S PROTONS OR THE CONVENTIONAL SO THAT THEY ALWAYS HIT THE RIGHT SPOT AND AVOID any nearby damage. After the image guided portion at the beginning of each session they would let me know if they were willing to radiate me based on how much gas I had and whether my bladder was full enough. I would take a gas tab and drink some water in my car, lie down on my side on the couch in the waiting room to get the remaining gas out and then go back and they would radiate me, just about an hour later.
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Beginning of a Long Journey
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what is the role of a MO?
