Hi. I had an RP 1/26/21. Would have done HIFU but not at $19000. Tougher than I thought it would be. Coming out of sedation insides burning up : maxed out morphine allowed, they went to dilaudid which took most of the pain away. A lot of discomfort all the time with the catheter. Finally removed it 2/5/21 and since then it’s be liveable. They said it was localized based on biopsy and MRI and the analysis of of the prostate and surrounding lymph nodes was good.
What annoys me is that I have to do a PSA test in 5 weeks because there is a chance the cancer is still around somewhere after all the drs assurances of localization. Probably shouldn’t complain but I want to be done with this business
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Rwrpc
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I'm sorry to hear about the pain from your surgery.
Surgeries for prostate cancer that appears to be localized are usually, but not always, successful. The problem is that small amounts of cancer, sometimes microscopically small, cannot necessarily be detected in a scan or seen using the surgeon's tools. Those tiny amounts can grow and spread. That's why it's necessary to get regular PSA tests after surgery or any PCa treatment. If some cancer remains it's desirable to find it as soon as possible so that it can be further treated, perhaps with "salvage" radiation, which can often finish off the cancer if it's in the region of the prostate and is found and radiated before it can spread.
If you do have a detectable and especially a growing PSA, it's important to find the very best, most experienced, most competent, radiation oncologist and possibly also a medical oncologist - people who specialize in prostate cancer, and get further information and treatments.
Alan, unfortunately welcome to the club. I had the prostrate removed almost a year ago. Not fun, but now am doing pretty good. I get my PSA tested every three months, and, thank you Lord, it stays barely detectable. It is a lengthy journey, but a light at the end of the tunnel and it is not a train! Need to make some adjustments in your life, but it is still good.
I agree with Alan's synopsis. You will be testing for the remainder of your life because there is no cure for PCa - just the hope for lifetime remission. I had HDRBrachytherapy completed 10/2020 and am now on a 3 month cycle of PSA blood draws. I consider myself extremely lucky that my PSA has already fallen into the zone we were looking for. If the cancer does recur it is best to catch it as early as possible. Best of luck!
Yeah, we would all like to be done with it. But that is not real.
You want to continue to enjoy life and be healthy. That requires you to be on top of this and monitor your PSA. And, yeah, every time you get the blood test you will have to endure that day or so of anxiety until you you receive the results. For me, the two weeks after the catheter came out were the lowest until I began to have restored control of my pelvic floor muscles. No one wants to be in this club; but you are here and WELCOME.
Sorry to say you will NEVER be done ...... you will need to get PSA's for the rest of your life. There are rare cases where PCa (Prostate Cancer) has come back DECADES later. If the cancer was indeed localized and it was ALL removed you are cured. However, if one rogue cell got into the rest of your body & survived the cancer will come back. When it might be detectable varies & depends on how fast it grows. That said, PCa most often would return within the 1st 5 years with the 1st year being the most frequent ... so I am told. As a result, you will likely get frequent PSA tests your 1st year after surgery .... mine were every 12 weeks .... and if no evidence of cancer after the 1st year these PSA tests will likely be spread out more .... year 2 mine were switched to every 6 months .... your individual experience may vary.
your "One rogue cell" scares the hell out of me. Curious how many cells, especially the cancerous ones get exposed to body tissue during needle removal with every biopsy. my thinking is at least one. With that in mind why ever get surgery especially if trying to avoid radiation therapy.
Trying to decide on a course that avoids radiation but especially the ADT
If there were spread due to biopsy, with all the biopsies done every year we would know about it.
Surgery has a good history & add'l data is learned .... is there ECE (Extra Capsular Extension). What is the actual Gleason Score with ALL the tumor.
Prostate surgery will remove all the tumor if it is all within the prostate. Radiation treatment is also has good results but we know less about the tumor.
If the tumor is completely contained within the prostate Radiation & ADT might not be necessary.
Find out what your Doctor recommends is the best course of action and ask why??? Also ask what are the other option's & why those are not as good????
If you have a chance at a cure take it. But you will have to get follow-up PSA's to assure there is not viable Prostate cancer elsewhere that we cannot yet detect ..... early on these will be at shorter intervals ..... later on PSA's will be at longer & longer intervals. As the years pass a reoccurrence becomes less & less likely but will never be zero.
Had my RP 2 1/2 years ago successfully. Have my PSA checked every 3-6 months ever since. Fortunately undetectable. I have mild incontinence as a result but am dealing with it. Had a procedure called ProAct therapy two weeks ago which is a new treatment for incontinence. I will update my experience after I have the adjustments done in the next month or so.
don't blame you for feeling that way at all; I too had a good deal of pain after the surgery (actually some of it continued for a long time) and other effects; I'm afraid the truth of the matter is we're never done with it even if our PSA remains undetectable (which I hope yours will be)--good luck!
PSA every 3 months since my VMAT-RT in June 2020 + ADT 6 months.
Lymphoma Blood Tests every 2 months + some extras like one in Jan 6th 2021 and one Feb 11th 2021 and on March 1st 2021 and on March 11th 2021.
Arterial Blood Gases every 4 to 6 months.
Acute Chronic Renal Insufficency Blood Tests every 4 months.
73 y.o. with Lymphoma LNH and many Acute Chronic Diseases.
My Immune System is VERY low.
That gave me a Severe Physical Limitation. 2 walks of 0.75 km with a walker, then my Pulmonary Emphesyma Gold Grade 3 kicks in and I have to rest and catch my breath.
1994 Had a work accident followed by Discoidectomy L4-L5 and Permanent Acute Lumbalgy, on Fentanyl 87 mcg/hr patches and recently on CBD (No result so far with 54mg/day) and later on THC.
2004 Blood Tests showed a Acute Chronic Renal Insufficency Stade 3, which is treated as Wait & Watch ,with Blood Tests every 4 months. Stable so far.
2019 My PSA went from 6.76µg/L to 22.4µg/L in 6 weeks.
Prostate went from 24.7cc to 45.86cc.
2020March 3rd I had 6 cores out of 12 positive on the right side at 85% G4, then on a Special pre-RT Scan they found multiple tumors on both sides.
I was in the Ufavorable Intermediate Risk group with a G(4+3=7) Grade 3.
I got and injection of Eligard 45mg/24weeks on April 4th 2020 that was screw-up. And on Casodex 50mg/I.D. X 30 days.
So I have been on Lupron Depot 22.5mg/12weeks X 2 from 2020 May 31st and 2020 Aug 24th will last until 2020/11/16th and on
VMAT-RT 3Gy X 20Fx for 60Gy in June 8th 2020 to July 7th 2020 and my
Oct. 2020 I started a Severe Depression and was on Sertraline 200mg/ID plus R/V with a Specialist Psychologist who deals only with patients with 2 cancers and other chronic diseases.
Nov 16th 2020 I had a Cystoscopy where Multiple Strictures so I am having another one on March 3rd 2021.
Except for the Heat Flashes+++ and Breast Cup Size B I feel not too bad considering my other health problems.
When I look at other patients who went for RP and all the Secondary Effects they have, I am really happy about my choice which in fact was my RO decision du to all my other Health Problems and my age.
In Quebec, Canada unless special exceptions they do not do RRP past 70 years old since it involves Anaesthesia and a Head-Down position for 4 to 5 hours which is VERY hard for the breathing and the hearth.
We need to keep FIGHTING against that awfull disease.
I have 1 daughter and 4 sons. 1 grand-son and 1 grand-daughter and I want to see them growing. I will SURVIVE!!!
P.S. I noticed that when peoples mention their PSA and/or Testosterone Level, it becomes very difficult to compare my results versus the other peoples. If somebody says that his PSA = 1,000 but does not mention the units he is using, well ... It can mean 1000 ng/L, 1 ng/ml, 100 ng/dL or 1 µg/L. This four values are the same thing.
"Probably shouldn’t complain but I want to be done with this business"
Guess what? You are never "done with this business". Cancer doesn't work that way. You need to now get checked regularly for PSA and monitor it. That's the crappy thing about cancer and many other diseases. It doesn't just magically disappear because you want it to.
Had my robotic prostatectomy in 2011 and was amazed how much pain I had after surgery into the next day. I was also given the impression that this would be a one and done to remove the cancerous prostate and move on with my life. Unfortunately, I have had 2 relapses that were treated with radiation to the prostate bed first and then the whole pelvic region later. That's the bad news; the good news I have been undetectable for 2 years and will likely die of something else other than prostate cancer. I did most things right but what I didn't do was go on Lupron along with the first recurrence. I highly recommend being aggressive with radiation and ADT (Lupron) if you do have a recurrence or an increasing PSA in the future. My Medical and Radiation Oncologists are at Johns Hopkins and that is another reason for my continued success. Best Wishes to you!!
R. Be patient. Psa monitoring will be fine every 3 then 6 months. It’s for the best. Again be patient. Catheter out is good. Leaking will be an issue. Don’t get depressed. 6 weeks out I was going though 6 pads a day. I did pelvic floor therapy Really taught me how to do keagle control. Used biofeedback and TENS therapy 3 times a week for 6 weeks. I gained total control 24/7. I play golf and tennis ride a bike walk no issues. Yes I have to plan and be in control- but find a pelvic floor therapist that knows about prostate and urinary control. By the way. Keep bowel regular constipation effects bladder control.
Hang in there. I had the same surgery about 2 years ago and given the same prognosis. I can assure you it will be comforting to get a normal PSA. I have had three since my surgery and all good. It gives me peace of mind so I can focus on all my others aches and pains that go along with being 77.
Just about a month behind you . I am thinking about RP , as. I has a steep family history and dr's thing its the best way .... regular PSA's are the norm I think . sound liek the surgery went well , other than the pain. did they give you pills to take home for pain? God I wish I wasn't facing this ! SO stressed . not sleeping ...have an excellent wife that supports me to the max though ( lucky here ) . Best of luck with recovery . what is yoru age ? You gave Gleason 4+3 ? . Keep me informed Rwrpc - James
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