I have had the robotic surgery and complete removal and some lymph nodes also. I am scheduled to start radiation early February as a second and defining line of defense again the spreading outside of the now removed prostate.
Has anyone been through this process or similar?
I just want to know if things will ever get better? I dont sleep. I still am up urinating every hour and that is what I been doing for nearly a year. About 6 months with the prostate enlarged and now 3 months after removal of the prostate.
Please tell me that I will sleep again soon?
Thoughts and comments are appreciated.
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Bab52413
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At first my sleep inter-periods were limited from 25min to one hour tops.
I didn't have dreams because one must enter deep sleep in order to dream.
I took notes of the times I went to the toilet during every night to monitor the improvement.
My record was 12 times during a single night.
On said afternoon I had a CT and was advised to drink 3 glasses of water to purge the bladder from the shadowing liquid I had been given. So did I and earned my all times record.
Now, I usually go 2-3 times, like I did before surgery. Last night, 4.5 hours uninterrupted sleep and lots of dreams.
On another note I am monitoring my PSA monthly and will start RT only after it shows a confirmed uptrend. I am high risk, GS 4+5=9, pT3b from unilateral SVI, otherwise confined (R0), 20 lymph nodes clean (N0).
Recent and ongoing clinical trials favor early salvage RT over adjuvant RT.
[1a] (ESMO 2019) "Men with Prostate Cancer can be Spared Radiotherapy after Surgery".
[3] (2019) "Adjuvant versus early salvage radiotherapy: outcome of patients with prostate cancer treated with postoperative radiotherapy after radical prostatectomy".
[4] (2016) "Long-term Impact of Adjuvant Versus Early Salvage Radiation Therapy in pT3N0 Prostate Cancer Patients Treated with Radical Prostatectomy: Results from a Multi-institutional Series".
Good Morning and Happy New Year! I was 53 YO when I was diagnosed with Gleason 9 PC and had a robotic prostatectomy. I’m now 55.
For me it took about 3 months to recover to the point that I could hold it long enough to get to the toilet...but even today, I experience an occasional couple of drops now and then, and my sleep is acceptable.
Before I go further with my experience through salvage radiation, I have one question...
They have not did a PSA since the removal of the prostate that is bothersome. I had a viral/bacterial infection that put me in the hospital from some pocket of fluid that formed after the prostatectomy. It was rough. I'm still fighting. Still think they have left something behind cause I'm getting same symptoms again that put me in the hospital.
I'm 51 and they say because of the age should fair well...
There are three types of "fluids", that I have heard related cases of:
1) Blood, internal bleeding from bad/missing clips. It is the least possible thing to have had happened because the only way to fix it is new surgery.
2) Lymph, embarrassing it is as it will gravitate towards your testicles making them the size of a grapefruit, but does not cause infections. It gets absorbed by the body in a month's or so time.
3) Urine, most probable, if the anastomosis (the urethra to bladder new splicing) has not healed completely to assume liquid tightness at the time of catheter removal.
The proper thing to do, before catheter removal, is a cystography (X-Ray imaging) to ascertain anastomosis tightness. In some hospitals/doctors think this is not necessary and they skip doing it. Having urine leakage inside one's body surely causes infection. If the surgeon is very experienced he will try to reinsert the foley catheter, under X-ray guidance, and leave it there until it heals.
incontinence.. is still rather severe. I am certain the ear ringing and the pins and needles I feel continually are related to the infection. How do I move forward? How do I get better and start healing?
An ultrasound of your abdomen will show if there are dark shadows that shouldn't be there. A urine lab test will tell you if there is urinary infection and also there should be no traces of blood 3 months post surgery. If these two tests come back normal, look elsewhere, your RP will be in good healing progression.
Finally, drink a lot of cranberry juice.
PS: When at the toilet try to stop peeing for a couple of times (3 at least, 5 is best). If, each time, you can stop the flow for 8-10 seconds, than your sphincter is in very good condition for 3 months after surgery. If not, you need more Kegel exercises to train it.
Employ some objective monitoring method that will give you indications of progression into healing. This will boost your moral. The psychological factor is very important to this. I measured the volume. Started with 70ml. Achieving 100ml, was a victory. 150ml, a dream come true. After attaining +200ml, stopped monitoring. Mission had been accomplished.
I had a similar problem...it was lymph fluid identified on a CT scan. My doc advised to drink a lot of fluids. It cleared up about 2 weeks after it was identified.
That said, I would get the PSA value because if you’re undetectable, it may be worth it to talk further with your doctor about the timing of the radiation...
It will get better. I had chemo, followed by prostatectomy (May 2018) with 8 lymph nodes removed, followed by radiation. The frequency of urination can be controlled with drugs (oxybutynin for example). You don't mention, but have you regained control (continence)? The radiation will make that worse, again. But you should recover after that is over. As of today, I mostly get up once or twice a night to urinate. Sleep is pretty decent. There are other lingering side effects, like lymphoedema. But, I am alive and at present, NED.
Robotic removal over 2 years ago, no radiation. Got up once last night to pee. No clear borders, extracapsular extension, lymph nodes removed Gleason 9/10, taxatere, xtandi, orchiectomy. PSA steady at 0.120/0.130 for over 18mo. No incontinence after 6 weeks. Age 67 at surgery. Sleep solid for 5-6 hrs. then napping till morning.
Love your results. I was hoping for similar. But not the case. My surgery was maybe worse. They removed 3 lymphnodes and the seminal vesicles. Been 3 months and I dont get any sleep and dreamland is only a wish for me at this point. Really need to get a hold of the incontinense.
Robotic surgery the fall of 2013, 39 radiation treatments with little incontinence issues the spring of 2014, and now on Eligard, Zytiga, and prednisone. Oh almost forgot the Provenge treatment after a rise in PSA and prior to the Zytiga. I get up normally once a night around 4 to 5 AM, take my Zytiga and go back to bed for a couple of hours. Started this ride just after my 65th birthday and other than weight gain, muscle loss, and afternoon naps I'm doing fine. Fight the good fight!!
Hi Bab, I had radical robotic prostectomy on October 15. Took whole prostate ( yes, the nerves too),my good fortune is cancer was completely contained within the prostate it had not gone to lymph nodes. Before RRP had bone, CT, 4 IVP'S for various purposes, renal scans, bladder scans, endoscopes up my penis, stents(2), lasers for a mass in the urethra between the kidney and bladder. Was a stone not cancer. All of that before RRP. I have my first PSA on January 14 with appointment with Surgeon. My Dr is planning to install implants but after I have 6 months of clean PSA'S. Two weeks before the PSA I'm praying for a .0 when I see Dr a week after PSA.
We are each on our own journey, no two of us having the same process. Our strength is to share our experiences with our brothers at this website and ask all those who are ahead of us for their wisdom, experiences, fortitude and unbridled courage to help us navigate this journey we are on together
Bab, I wish you the best of luck as walk your path through this disease and may you have success. Arlis
What is your PSA now? Recent evidence (below) is that waiting for PSA to reach 0.1 or 3 consecutive rises (called "early salvage") has no worse results than immediate (adjuvant) salvage radiation, and it may give your tissues time to heal. If your PSA is already over 0.5, you can start on hormone therapy for, say, 7 months to prevent any progression until your urinary function is better. Radiation will probably exascerbate those problems, so if you can safely delay it until there is more healing, you will be better off.
If this is the recently published study I am thinking of, my MO is one of the MO's who commented on the study (Dr Vogelzang). He is a long-time MO & has more of a wait & see attitude. He feels that Prostate Cancer can be so slow growing we may not know if there is a re-occurrence until 15 or 20 years later so he is cautious because he has seen so many late re-occurrences.
My Radiation Oncologist was comfortable waiting 6 mo. post-surgery but as I had good bladder control at 8 weeks we began at 3 mo.
I doubt that Dr Vogelzang commented on this since he would have no expertise on this subject. If he did, please provide a link to his comments. It would be foolish to adopt a wait-and-see attitude that flies in the face of such strong Level 1 evidence.
Unfortunately I do not know all the details as it was a conversation. Dr Vogelzang did say there were 5 (well known in the field) who commented and he said he was one of those who said we need to wait for longer term studies. He told me this was probably because he has been around so long and has seen Prostate Cancer come back 10, 15 or more years after surgery. He was not disputing the findings, he just wanted to see longer term data. The ARTISTIC study was on 5 yr survival without a re-occurrence and while I am not positive which study he was referring to it could have been this one as it only looks at 5 year survival. Now, I will grant you most re-occurrence will be within 5 years but will these 5 year findings hold for 30 years for someone who is 50 in otherwise good health but with positive margins and/or extension? At this point we just do not know and that was his point to me. Like Breast Cancer, when one has Prostate Cancer they are on watch for the rest of their lives as these Cancers can be slow growing and may re-occur many years later. The ARTISTIC study is encouraging and if it is true over multiple years will require a rethinking of if and when adjuvant therapy is appropriate.
The logic eludes me. The 3 trials proved that early salvage was as good as adjuvant radiation, with as long as 5 years follow-up. If, with say, 10 years of f/u, both were equal or adjuvant were better, then how on earth could it possibly show that "wait-and-see" is a better strategy? No one in the trial was allowed to pick wait and see. "Wait-and-see" has already been ruled out by SWOG S8794 with 12.6 years median f/u. The purpose of these new trials was to see if adjuvant RT could be avoided, not to see if "wait-and-see" is a good idea.
The assumption here is a 10 yr follow-up would be as good as a 5 yr follow-up .... it might be or might not be. We are on front end data here. There are differ Prostate Cancer growth rates that need to be considered. If, for example, higher growth rate cancers do just as well with salvage vs adjuvant therapy but slower growth rate cancers (harder to kill) do not, there is a problem which needs to be addressed. Maybe we will have to identify each cancer's growth rate. We just do not know if this is the case yet. Dr. Vogelzang did say to me, "We used to think, do the surgery and without identifiable metastasis the inflammation from the surgery would take care of the rest. In retrospect that was clearly wrong." So these things do evolve and again, we presently are on the front end of this area.
This type of discussion has also gone on with Breast Cancer because some DCIS (Ductal Carcinoma In Situ) progresses and others does not. So which do we treat? Currently most all are treated because we do not know how to identify those which will progress vs those that will remain indolent.
But the trial I referenced can only answer the question of whether salvage RT (at a PSA of 0.1) is inferior to immediate RT. Whether there are 5 years of f/u or 20 years doesn’t matter - it will still only be able to answer that one question.
Since slower growth cancers are harder to kill waiting and allowing additional proliferation of a harder to kill cell might be a problem. We just do not know yet. The study examined all Prostate Cancer growth types without differentiation. Things seem pretty clear cut for 5 years and this may be the front of something big. Time will tell.
Why do you say that "slower growth cancers are harder to kill?" That is counterfactual. In fact, it is the least differentiated, more rapid-growth prostate cancers that are more radio, chemo and hormone-reesistant. The trial can NEVER tell if "wait-and-see" is preferred for ANY subgroup - how can it possibly show that with even 50 years of f/u?
Stage 4 Testicular Cancer & Melanoma can be beaten (Lance Armstrong & Jimmy Carter, both with brain Mets). Not so much with Prostate or even Breast. It remains to be seen if a slower growing subset of Prostate Cancers have the same benefits from Salvage vs Adjuvant Radiation Therapy. 5 yr F/U is impressive as most Prostate Cancer re-occurrence is in the 1st 5 years. 10 or 15 year F/U would be more impressive for the slower growth subset.
I'm not sure that comparing different cancers is useful for the OP. But then you inexplicably switch to slower growing prostate cancers, which we know is less virulent and more susceptible to therapies than faster growing subtypes. I guess I don't understand your point, and I'll leave it at that.
Dr Volgelzang stated here were 5 that commented and he was one. Some were looking for longer term results while some were in favor of using this info now. So there are differing opinions on this at much higher levels than you and I. I just guessed at what might be a reason but it was just a guess since no one has data yet. My overall here is while some very high level researchers are very excited about studies such as the ARTISTIC some also very high level researchers want to see more longer term data.
Well if you can, try to get what he actually wrote, and not just your guess at or misinterpretation of it. What is the point of guessing at things you have no real knowledge of?
This is what Dr. Vogelzang said to me when we had our appointment in November 2019. This may have been a panel comment at a Conference. I believe there was a recent large European Conference he may have been at but he goes to many conferences. At the time, I was more concerned with the information than where it occurred.
I am a retired Physician who previously did research so I do have a bit more knowledge than the typical Prostate Cancer patient but I admit not with a specialty in Prostate Cancer or Prostate Cancer Research. I am unlikely to have misinterpreted Dr Vogelzang's statement to me as this was a question I was going to ask him but he brought it up before I could ask. Also, he had recommended & I had recently completed, Adjuvant Radiation Therapy so he was pointing out that a 5 yr study is not necessarily the complete information and he was glad I had elected to complete the Adjuvant Radiation Therapy he recommended.
All through this interesting online conversation I hoped to get across the point that we do not know whether the 5 yr data of the ARTISTIC study agrees with 10 year or longer data. Some want to act on this data now while others wish to have longer term data. Both sides of this discussion have knowledgeable people. So while the ARTISTIC study is encouraging it does not have the longer term data some are still looking for.
It is not likely I misunderstood as Dr Vogelzang said he was glad I had gotten the adjuvant therapy, he said one of the reasons he wanted more data is he has been around so long and seen mistakes made, as well as the point he made that of the 5 who commented some wanted to make practice changes based on the 5 year data & others thought the data was promising but more data needed to be obtained.
So I heard what I heard in several different ways and it directly pertained to me so I was motivated to listen closely to the main points. With the above in mind and because it was a conversation you have the option to believe me or not.
Again, the point I am hoping to make is, different knowledgeable people in the field feel differently about forgoing adjuvant radiation therapy and relying on salvage therapy. This dichotomy of opinion was present before the ARTISTIC study and, at least for now, persists.
It is likely you misunderstood because a randomized clinical trial that randomize people to early salvage RT or adjuvant RT cannot possibly prove that a "wait-and-see" approach is better. He would understand that.
I likely did not misunderstand for the several reasons I outlined and a 5 year study is not a 10 year study. A randomized 5 year clinical trial that randomizes people to early salvage RT or adjuvant RT suggests but does not define what might happen in say the 5 to 10 year interval. Prostate Cancer has earned a reputation for reoccurring at dates later than 5 years. As Dr Vogelzang stated, in the past mistakes have been made. From what he said there was disagreement on this so knowledgeable people are divided on this.
Hearsay at my medical appointment, no I actually heard it from Dr Vogelzang.
Mistaken, no too many corroborating statements I heard at the appointment--for example--Dr Vogelzang was happy I elected to get adjuvant RT and made a point of saying so.
Discussing the percentage of cancers that re-occur in 5 years and those that re-occur at greater than 5 years (not covered in the study) might have been interesting and informative.
With respect to Prostate Cancer, the 5 yr findings of the ARTISTIC study are encouraging since they apply to the greatest number of cancers that reoccur. The ARTISTIC study might apply to Cancers which reoccur at greater than 5 years but we just do not have the data to support this yet.
In at least one study, Cumulative incidence of PSA-R (Prostate-specific antigen recurrence = PSA recurrence) in CaPSURE was 13.6% at 5 years and 19.9% at 10 years. If follows 6.3% of PSA-R occurs at 5 to 10 years or about half the 5 year rate.
So a 10 year F/U would capture a significant number of PSA-R recurring cancers not covered in the 5 year ARTISTIC study.
I agree, waiting for excessively long studies, say 20 or 25 years depending on the recurrence data, is impractical due to the small number of cancers that reoccur in that time period. 10 years apparently not. Not that 10 years is the magic number, that would have to be based, I suppose, on total recurrence rates but there are a significant number of cancers that reoccur in the 5-10 year period.
When the data is present, myself, Dr Vogelzang and according to Dr Vogelzang others in the field, will be happy to see changes in the application of RT.
Additionally, insurance companies would then be unlikely to pay for RT in the typical adjuvant setting as the expense is significant.
I had single port robotic surgery on Oct. 4...had a catheter for 12 days. After catheter removed incontinence was terrible. I was going through about a dozen heavy pads a day...making me so depressed, so I opted for a Cunningham penile clamp which did wonders for my problem....gave me back my sanity. Doing the kegels religiously I now only wear the clamp when I go to the gym or do outside work causing exertion. Other times I wear a thin pad and seldom leak after 3 months post op. I've been good at night sleeping with no pad since about 3 weeks post op, get up to go to the bathroom about twice a night not so much by feeling I need to go, just that I wake up and think I should go to make sure I don't let it rip in bed.....lol. First PSA 5 weeks post op was 0.01.....have my next test scheduled for mid Feb. I was a Gleason 7 (3+4 and 4+3), cancer restricted to the prostate. ED issues but wanting to get everything else under total control before I start concerning myself with that at 73....lol. Good luck with your tests and continence issues! Just remember....kegels, kegels, kegels!
Hi Bab, I also had RP 12/15 for Gleason 7 encapsulated PC, no LN spread, s/p RT initial PSA .01 later 7/19-added Salvage RT as the PSA climbed to .34 plus 6months of Lupron. PSA first check .02/T 12. Realizing everyones healing is similar but different, I think you can just expect urinary incontinence for 3-4months s/p RP and slow resolution to an unknown endpoint. I can just tell you that I had to wear a diaper first 3months and now just an shield to change every 1-2days. The Radiation in my case made no difference. Other than some occ bowel irritation I was able to go to work and had little change in my daily activities. But that being said the articles listed by "Just for" show that you have the option of waiting with a similar outcome. Those articles varied and some had intermediate risk PC patients but suggested under .1-.5 do as well with Salvage as adjuvent RT. You need to find out what you PSA is right now and check trend. Can decide.....
Happy New Year to you and all. I had RARP on 5/22/19 at age 71, turned 72 in November. My PSA in Jan 2018 was 3.24, jumping to 5.69 in Jan 2019 and then 6.44 in quick follow-up check in Feb 2019. Was referred to urologist who thought she "would probably have good news for me", pending the old digital probe, of course.
After the probe, she was not as positive. Ordered biopsy, all 13 cores of which were cancerous. Ergo the May surgery. It was supposed to be nerve-sparing, but she conferred with me that her thinking was - based on my age and all-positive cores - that the nerve-sparing should be a no go. I agreed, and away it went. Along with the seminal vesicles, too, which had been invaded. Cancer graded out to Gleason 3+4, and decipher score was 0.75 - High Risk.
All margins were clear, as were 7 lymph nodes harvested during the operation. Bone scan was negative as was a PET scan. Almost a perfect storm, so to speak. PSA at 22 days following surgery (apparently to establish a baseline reference) was 0.05; at 3 months it dropped to < 0.007 (undetectable); and at 9 months it was again < 0.007 (undetectable).
Oncologist wanted to start ADT in October time frame, but I was preparing for a Christmas trip to Prague. Not wanting to have any side effects and considering the low PSA, I elected to go the watch-and-wait route. I love where my PSA is at the moment, but for all we know it's already on a slow rise, just unknown because of the limits of the PSA test itself.
As Tall Allen says, recent test results argue favorably for observation. A study presented at the ESMO Congress in Barcelona in September 2019 "found no difference in disease recurrence at five years between men who routinely had radiotherapy shortly after surgery and men who had radiotherapy later, if the cancer came back."
A quote from the first author of the study: "The results suggest that radiotherapy is equally effective whether it is given to all men shortly after surgery or given later to those men with recurrent disease. There is a strong case now that observation should be the standard approach after surgery and radiotherapy should only be used if the cancer comes back."
So, I'm in watch-and-wait mode, hoping for another good PSA result in February. We'd all like to believe that they went in, got every last bit of cancer, and we'll never have to worry about it again - just live (although not the life we had been accustomed to)! I'd certainly like to believe that, but realistically it's likely that ADT and radiation are in my future. I'm just reluctant to have radiation shotgunned into the void for nothing more than a just-in-case rationale.
Hi. I had exactly the same treatments as you. I had the prostrate removal with some lymph glands then six months later 26 radiation treatments. This was a little over 4 years ago. The only thing that I have found to lessen the frequent trips to the bathroom at night was to limit my drinks after 6 PM. I have been able to reduce my trips to the bathroom from every hour to 2 to 3 trips during the night.
I just went through this---Surgery May 15, 2019 with Radiation starting around Aug. 15, 2019. 39 Radiation treatments.
You will be balancing the following 2 :
#1----I was told by Medical oncologist (MO) there is a study out there that indicates those who start Radiation Therapy by 3 months after surgery do better from a re-occurrence standpoint than those who start later. However, my impression is this difference vs starting at 4 to 6 months after surgery is small--I have not read the study and only heard about it through my MO. I would encourage you to try to find this study as it may be important as it relates to #2 below.
#2----My Radiation Oncologist told me they like to start after good bladder control is achieved as one tends to be stuck with the bladder control they have when they start Radiation Therapy.
You will be balancing the above 2. In my case I had pretty good bladder control by 8 weeks so I was happy to start Radiation Treatment by 3 months post-surgery.
Your experience may differ.
The impression I got from my Radiation Oncologist was, it was not unusual to start Radiation Therapy 6 months after surgery in order to get good bladder control.
It will get better. I am 13 months post RARP. I was -- and remain -- compulsive about pelvic floor exercises, including an app on my phone to remind me twice a day. My experience is not your experience, of course. The first two weeks after the catheter came out were the worst two weeks of my life -- truly. After that, it gradually got better, going from incontience briefs day and night, to incontinence briefs daytime and dry at night, to shields to nothing. I still have the occasional dribble of a few drops. I still keep an impermeable cloth between me and the mattress. I get up 1-3 times a night. The same as I had with enlarged prostate.
My MO and RO both suggested "salvage" radiotherapy after surgery. I have so far declined, preferring to monitor my PSA and make a new decision is PSA starts to rise. My MO and RO did not like my decision, although at the last visit, the MO said, "well, if your PSA stays like this at the February visit, I will have to consider that maybe your decision was a good one." Not a glowing statement that he might have been wrong, but enough. I totally get it: oncologists are about survival statistics. As the patient, though, I have to throw in quality of life concerns in addition to simple survival. Also, at 76 my perspective might be different from a younger man's.
If you have not talked with a pelvic floor rehabilitation specialist, you should consider it. There is a lot more that simply reading a pamphlet on Kegel exercises. We brought one to our support group and she was really splendid, upbeat and helpful.
My issues mimic yours....72 right now and had single port robotic surgery Oct 4, catheter in 12 days...incontinence so bad I had to walk around holding a coffee cup since I got tired of peeing in my pad constantly....bought a Cunningham penile clamp and it gave me back my sanity and the ability to be mobile without worrying about soaking a heavy pad in 2 hours. After about 2-3 weeks things greatly improved and now at 3 months post op I just wear a thin pad and nothing at night...change the pad every day. Only times I wear the clamp is if I go to the gym or do exerting work outdoors. As you say...doing the kegels consistently really helps. My first PSA 5 weeks post op was 0.01 and scheduled for my next draw mid Feb.
Hi there - yes, it definitely gets better, much better. I don't think about it much anymore and carry on largely as if I didn't have cancer, although I've been on ADT B+ Zytiga for 12 months, with 6 more to go. At first I had many sleepless nights and didn't know how many treatment options exist. Good information is your friend, along with the counsel of good doctors. The spectrum of advanced PCa situations is really broad. I'm 53 and was first diagnosed GS 4+3 last May -- the diagnosis was a total surprise. I had RP (RALP) and at first the pathology said it was all done - 0/15 lymph nodes, but then my PSA was still 4.0. At that point I freaked out and couldn't sleep or eat much for weeks. Turns out a few local lymph nodes were avid so I had to follow surgery with 7 weeks radiation and 18 months of ADT+Z. My PSA has now been <0.05 for the past year and hoping it stays there long after the meds stop. Hang in there - and best of luck!
I had the robotic surgery to remove my prostate in 2012. I had this done even though several doctors, even head of Brady Institute at John Hopkins, advised me to not do it as they thought the cancer was small (PSA 6.8, Gleason 3+3).
After surgery they advised me the cancer was “much worse” than any test had shown and had spread outside the encapsulated area of the prostate. They removed lymph nodes and found no cancer has spread. They decided not to do radiation as my PSA was undetectable (<.01).
I did not have any issues with having to urinate at night and returned to normal within a week or so. I did not have any issues sleeping.
After 4.5 years my PSA began to rise, slowly at first and they it began to rise at a faster rate. Axium Scan showed Mets in my pelvis, T7 vertebrae, 4 ribs, collar bone and several lymph nodes.
Maybe if they had done radiation after my surgery, this might have not happened. Will never know. But I would certainly recommend radiation to be on the safe side.
Foodstuffs to avoid with an overactive bladder. Both radiation and surgery are notorious in causing irritation to bladder and urethra. Spicy or acidic food stuffs can/will severely irritate causing bladder spasms that cause your brain to believe bladder is full, which often/usually is not the case.
I am another that has had an RP, June of 2018. I am doing well regarding PSA tests (now at every 6 months). I have minor incontinence and partial ED. I was administered neoadjuvant medicines for 3 months as part of a clinical trial. My profile is updated, if anyone is interested in further details of my journey: healthunlocked.com/user/tkalaf
Wish all you brothers in this fight, the Best of Health!
I had robotic RB in November of 2019. Today was 2 months exactly. Margin was clear on the right but not the left, so they spared nerves on the right side, but not the left. Took seminal vesicles - both had been invaded but I had clear margins on the right but not left. Seems the left side was pretty well involved though I was 3+4.
All lymph nodes were clear so doc said if PSA is below .02 I may not need salvage radiation. Fingers crossed as I go back at the end of February for the first checkup.
The first 3-4 weeks were rough but much better now. I even made it through the night with out getting up a few days ago - but I limit fluid intake after 7 pm. I had Foley in for two weeks - longer than I thought was necessary but that evidently I was at the mercy of his schedule. Kegals help a lot and I'm pretty strict about doing them daily - even downloaded an app on my phone to remind me and to talk me through the squeeze/relax process. I'm down to one to two pads daily for stress leaks - surprise sneezes etc. and I hope I can get rid of them completely by 6 months.
And as mentioned below, I did experience the grapefruit syndrome (more like a cantelope) that only lasted a week. What I didn't expect was the numbness all around my genitals. The inside of both legs, over the pubic bone and the sides of my scrotum. A very strange feeling indeed - numb yet it stung like a wasp sting or a stinging burn at the same time if I touched it. That's mostly gone away by now.
No luck at all in the EF arena yet... but I keep hearing that's a yearlong process at best (if at all).
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