I just got diagnosed a few days ago with prostate cancer, Gleason score of 6-7. I have had the j-pouch for a little over 20 years and have had my issues with pouchitis, etc. I'm 64 years old, and I think in reasonably good health otherwise.
Has anyone here had recent experience with the various treatments?
Thanks,
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Hey!
Have you been able to identify a doctor who can remove the prostate?
My father was diagnosed a few weeks ago. The cancer hasn’t spread, but he needs to do something soon.
He wants to pursue the prostate removal, but his doctors in Dallas don’t have experience with it in J-Pouch men and don’t want to do it.
Thanks for your help!
Mike
Are you doing better???
I’m in Orange County ca. Just got diagnosed with prostrate cancer looking for a surgeon myself. Have you had any luck locating one?
Hey @sahbumnim! So sorry for your diagnosis! Trust you’re on a platform where you’re not alone!
My father was diagnosed at the end of June! After searching and being referred to numerous doctors, we found a few! The one we went to and had great success with was Dr. Jeffrey Karnes at the Mayo Clinic in Rochester, MN!
When we spoke to him in August he admitted prostatectomies in J-Pouch patients weren’t all that common, but mentioned he had actually successfully performed 2 in the last 6 weeks (look at God’s timing!)! We knew right away this was our guy!
My father gets his updated PSA in 35 days or so (to confirm he’s cancer free), but we’re praying and claiming he is in fact cancer free now!
Will certainly be praying for you! You WILL be just fine! @sahbumnim
I am sorry to hear that honey! I hope everything goes well for you! I hope the surgery you get is a success!
Please let us know how everything goes, sending love your way <3 
Thank you for the prayers
Hello, Is there a follow up on this subject? What was the outcome of the surgery? My husband too has prostate cancer and is running out of options.
Thank you!
Hey! My father had a successful prostatectomy in September of 2021. His 3 subsequent PSA tests have confirmed that there is no cancer. He’ll have another PSA in the next month or so. We’re praying that test confirms he is still cancer free.
Jeffrey Karnes at the Mayo Clinic in Rochester, MN did my father’s prostatectomy. There are others we consulted with that can do the procedure as well.
What are some of the questions you have that I may be able to answer?
Thank you so much! We are in LA. The docs here (UCLA and Cedars) say the prostatectomy is not an option because of adhesions and difficulty getting to the prostate. They say that if they do it, they run a high risk of incontinence. He had radiation once and the cancer came back (Gleason 4+3). He is taking hormones, and the PSA is coming down but has terrible side effects. We are considering either a Tulsa Procedure or a second round of radiation (salvage). Both are risky. He is 78 and otherwise in good health. Plays golf 5 days per week, travels and has a very positive attitude. I think surgery may be an option - but not here; a consultation with your doctor may be a great option us. We cannot find a surgeon in LA that has done the prostate removal with a patient on a j-pouch! Thanks again.
I have a jpouch and had a successful prostectomy in December. My surgeon is the best in the world out of USC Keck Urology. Indibar Gill
We already spoke to him! He thought (6 years ago) that the surgery would be too tricky - had never done a j-pouch prostatectomy and may just have to open him and close him up. He thought there was a high risk of failure. He has lots of adhesions. But then again, it is 6 years later and maybe it is time to talk to Gill again. Sorry to ask, but are there any incontinence issues for you?
thank you!!!!
No incontinence.
many thanks!
My dad doesn’t have any issues with that, thankfully.
Dr. Karnes warned that there was a chance of permanent incontinence and a chance that the j-pouch could be violated. These were the same reasons 3 “top rated” doctors in TX refused to do the prostatectomy on my father. However, as stated, my father’s procedure was a huge success! My father’s numbers were astronomically high. So high, one doctor said that surgery was a futile attempt at removing the cancer, because although imaging showed the cancer hadn’t spread, it more than likely had with a PSA score of 24.
On the surface it made sense, but we kept the faith and got a successful result!
Best of luck with the next PSA and thank you for sharing your information.
Thank you! Will be praying for you and your husband! Don’t hesitate to reach out if you have any questions! God bless
Got my pouch in 2003. Had my prostate surgically removed 01/2021. Dr. Bo Shen at Columbia Presbyterian NYC is following my pouch. Prior to surgery I consulted with radiology/freezing/surgery. The consensus was surgery. Dr. Joel Decastro was my surgeon. He had prior experience with pouch patients. Very pleased with him. A couple months later I started having incomplete emptying and pouchitis. Defocagraphy and manometry determined my pouch had lost the support that my prostate provided to the pouch. My pouch was also twisting when emptying. Citroen covered the pouchitis. Dr. Shen placed rubber bands in my pouch to expand it, and create scar tissue inside. The purpose was to create scar tissue inside and stiffen the pouch. The bands come out while defecating. Was also prescribed bio feedback physical therapy to retrain my pouch to work properly with my anus. Early in the PT but I have seen some relief. In the middle of all that i learned I had a bacterial infection from yersinia. Most often caused by consuming undercooked pork. Symptoms resembled pouchitis. Still, I am glad I had my prostate removed. Best of luck.
Thanks so much. All his doctors are so against the surgery! Cannot get anyone to agree to it! This is very valuable information.
We also went to Bo Shen but he was with the Mayo Clinic in Cleveland at the time; it was a few years ago. We went for a second opinion after the j-pouch was in for about 2 years and my husband was going to the bathroom at least 12 x day. He is down to about 7 or 8 (mostly at night), but were are use to it now.
If the LA docs continue to not agree to the surgery, we may have to start looking into your surgeons.
Thanks so much for responding.
One more quick question - did you have adhesions? That is the main concern form the LA surgeons; not being able to get to the prostate because of the adhesions.
Thanks!
Hey @Wife!
My father saw 3-4 urologists in Dallas and all of them had the same concerns with surgery (scar tissue his j-pouch created). They all warned of potential fecal leakage and j-pouch failure if something went wrong during surgery.
However, after doing some googling we actually came across Dr. Bo Shen and setup a meeting with him to discuss. This was around June of 2020. He was absolutely against radiation which was what the Doctors in Dallas were opting to go with, even though my dad’s PSA and grade of cancer was off the charts. Dr. Shen feared that the J-pouch would fail because of the radiation.
We ended up getting my dad’s prostatectomy done at the Mayo Clinic a year ago last week actually and everything couldn’t have gone better! I’ll copy and paste the 3 doctors we consulted before finally deciding to go with the doctor at the Mayo Clinic.
Jeffrey Karnes at the Mayo Clinic in Rochester, MN did my father’s prostatectomy.
Another doctor we consulted was at The Cleveland Clinic. The other was at MD Anderson in Houston. I can get those names if you like.
Everything will work out just fine though! I truly believe that!
I did not have adhesions. I have been with Dr. Shen for many years. I started with him at Cleveland and followed him to NYC. I am. In NY State about 4 hours north of the City. It was about 6 hours to Cleveland so it was a plus. My pouch surgeon was David Halleran in Syracuse. He was not able to get my issues at the time under control. He encouraged and assisted me in getting an appt. with Shen. After my first scope by Shen, he complimented Halleran for the good job building my pouch. I have much faith in all the doctors imentioned.
cannot thank you enough!
do you mind sharing his age? just for reference and comparison. My hubbie is 78. super healthy and completely active otherwise. thx!
I am 60. Very active.
My father is 62
that may play a big role. Your dad is a lot younger. thanks!
A lot of factors play a role, but I believe everything will work itself out!
I recently had my prostate removed in Jan of 2022 and I am 70. I got my J-Pouch in 2000 and have had very good luck with it these past 21 years. I was diagnosed with cancer nearly a year ago. I couldn't find a surgeon anywhere in the Michigan area, even though there are many J-Pouchers in the Metro-Detroit area.
I had many adhesions with several blockages over the first 5 or 6 years. So my options were going to be complicated, no matter which route I chose.
I was going to go with external beam radiation, until I saw my original J-Pouch surgeon and he said absolutely not. He said no matter what the radiation doctors tell you, they can't be as accurate as they need to be with the external beam. But, he suggested the high dose radiation method where they implant radio active seeds within your prostate, which in turn kills the prostate and the cancer. So, that seemed like a great alternative, until I went thru all of the testing and the prostate was too dense (or something) and I wouldn't be a good candidate for that.
So, back to looking for a surgeon who had experience. The radiation Doctor knew Dr Karnes and recommended hom. I took a ride and spoke with Dr. Karnes at the Mayo Clinic in MN and he said he was very familiar with J-Pouches and prostate removal. I was very comfortable with him and what he said and everyone I met there. Rochester MN is a 12 hour drive for me and I was dreading the drive home a few days after the surgery.
So, I cold called the Cleveland Clinic whis is less than 3 hours from me. They referred me to Dr. Kaouk who was also familiar with prostates and J-Pouches. I drove to the Clinic to meet with Dr Kaouk and his assistants and once again, I was very comfortable with what he said and how he was going to handle everything.
Since I would have to travel to see either Doctor, I chose the Cleveland Clinic only due to the shorter drive for me. Both Doctors seemed more than qualified and personality played no part, strictly 3 hour drive VS 12 hour drive after surgery. Dr Karnes prefers an open surgery while Dr. Kaouk uses the latest single port DaVinci robot for surgery.
The bottom line is that I am happy I went with Dr Kaouk and robotic surgery. I have a single 2" scar from the surgery, instead of a longer scar from an open type surgery. When I woke up in the recovery room was in absolutely no pain. I spent the night in the hospital and went home at 11am. I was never in any pain. The pain scale never went above a 1 or 2 - I could bend and get out of bed without problems and it never really bothered me. He used superglue on me and that began flaking off after a few days and still no pain even when I washed the incision...
So, that is my long winded prostate removal story. Please feel free to contact me if anyone has any questions...
Gary....rce789(at)yahoo.com
Wow!! Congratulations!! I’m super happy everything worked out for you! (Praise God)!!
I forgot who we spoke with at The Cleveland Clinic, but we were super comfortable with them as well, but ended up going with Karnes. My father was definitely in pain, but after being told no one could help us and that we should consider palliative care, my father could care less about the pain since he knew he was going to live!
Congratulations again and thanks for sharing your story!
Thank you grr256 for such through response. Our direction has changed; we opted for high dose at UCLA. Our radiation therapist thinks he has a very good chance of curing the cancer with radiation. His urologists agrees.
We had a very weird turn of events though...went to get the radiation and once he was under anesthesia, they discovered a false passage in his urethrae. They aborted the procedure and we are waiting a few weeks for it to heal. In the mean time they put him on a very strong hormone to shrink the tumor - Orgobyx. We do PSAs today and if it continues to go down, we will go and get the High Dose in May. If the false passage does not heal by then, we may opt for surgery. No one here will touch him, so it would have to be one of your doctors in the Midwest. We will cross that bridge at a later date. We are staying positive and his quality of life is fairly good.
Thanks again for all the feedback!
I am having the single port robotic prostatectomy with Dr Kaouk in about three weeks. My PSA was 14 back in September, which led to a surgeon search. In fact, I want to thank those members in this thread for helping me get to this point. You guys are very much appreciated. Having prostate cancer with a j-pouch limits our options but it can be done successfully. If you’re in the same boat, check out the single-port procedure. I’ll update this page after having mine.
Praying for a successful surgery! I’m sure all will be fine! Can’t wait for your good report!
I had robotic surgery in 2020 at Keck USC Medical Center. My surgeon was Dr. Inderbir Gil. I have been cancer free for a year now. My prayers are with you for a speedy recovery.
Just to circle back, I had the single-port radical prostatectomy with Dr. Kaouk at Cleveland Clinic less than a week ago. I am amazed at how well I feel. I have about a three-inch incision below my navel, definitely some soreness whenever I use my abs, but not the incontinence for which I was warned. J-pouchers already have the muscle tone necessary. I have had no incontinence issues, even overnight. The foley catheter was the most annoying and most uncomfortable part of the surgery. Fortunately, the surgeon’s office had it pulled after only three days. If you’ve been diagnosed with prostate cancer and are looking at your options, consider this procedure. I can provide more info if interested.
Thank you so much for the feedback. I appreciate it. We are still leaning for the Radiation at UCLA. Our docs seem to all agree it is the best path. My husband has too many adhesions. We are doing it in May and will report results. I am petrified about possible incontinence.
Thanks again!
Just so you’re aware, the single-port procedure is ideal for patients with a lot of scar tissue. The surgeon operates through the bladder (transvesicle process) to get to the prostate and is able to bypass all the adhesions caused by the pouch surgery.
Very interesting! Thank you!
Thank you thank you for this information on the single port procedure.
I have had a bouncing PSA for 10 years.
right before TPC/IPAA surgery my PSA was over 10 and I had a biopsy which was negative.
given that my surgeon has warned me to never to have radiation and my PSA is on the rise again i am very nervous about my prostate health and future.
this is good info to have.
thank you again.
Hi!
Do you know the reason why the surgeon said no radiation? Is it about damaging the pouch? My husband had radiation over 6 years and it did not damage the pouch. They put blockers to prevent it.
Thanks!
My dad’s J-Pouch doctor and another J-Pouch doctor at Columbia VERY sternly demanded us not us radiation because it could cause the pouch to fail. However, the urologists we initially spoke to were petrified at the thought of removing the prostate because of the scaring.
Happy to hear there have been no complications with your husband’s pouch though.
The surgeon told me that radiation would cause the pouch to stiffen and then fail. I did not press for more info given the negative biopsy at the time.
I do not know what the latest thinking there is regarding low dose brachytherapy or other treatment options.
however, I would be terrified to have any additional surgery in the pelvic area.
I have worked very hard to get to the point where I am feeling good on a daily basis.
update: I was informed after I posted this morning that my PSA has returned to normal
i completed 30 days of bactrim to knock out a recurring uti (that gave false high PSA readings).
while I am out of the danger zone for now, I hope this thread continues to get updated since us pouchers will have have some very tough decisions to make should we develop prostate cancer and want to treat it.
Great information here.
thanks to all who have taken time to share their story.
Just as a follow up to my post last spring, I met with the surgeon last summer for a final discharge from his care. The two takeaways:
1. Have a yearly pouchoscopy .
2. No prostate radiation, not even seeds, as the prostate is sitting right on the pouch. The risk of pouch irradiation and failure is too great a risk.
If I may add a different opinion on item 2 above:
2. No prostate radiation, not even seeds, as the prostate is sitting right on the pouch. The risk of pouch irradiation and failure is too great a risk.
My husband has had two rounds of Radiation; first round of Stereotactic RT in 2016. Cancer came back in 2021. Second round (called salvage RT) was done through Brachytherapy (Sept. 2022). Yes, the pouch sits immediately next to the prostate, but they use a SpaceOAR; it is hydrogel that prevents the pouch from receiving radiation. Our latest PSA showed a drop, so we are hopeful it worked. We also had a full exam by his gastro who assessed the j-pouch to be in great health 5 years after the first Radiation Treatment.
Fantastic news. Thank you for responding!
I am so glad to know that there are alternative opinions and options available to me should the need ever arise.
the thought of any additional surgery in the pelvis is terrifying.
thank you again.
@Wife posted:If I may add a different opinion on item 2 above:
2. No prostate radiation, not even seeds, as the prostate is sitting right on the pouch. The risk of pouch irradiation and failure is too great a risk.
My husband has had two rounds of Radiation; first round of Stereotactic RT in 2016. Cancer came back in 2021. Second round (called salvage RT) was done through Brachytherapy (Sept. 2022). Yes, the pouch sits immediately next to the prostate, but they use a SpaceOAR; it is hydrogel that prevents the pouch from receiving radiation. Our latest PSA showed a drop, so we are hopeful it worked. We also had a full exam by his gastro who assessed the j-pouch to be in great health 5 years after the first Radiation Treatment.
Hey @Wife! Good evening! Unfortunately my father’s latest PSA test came back slightly greater than .4 which his current urologist said is all but confirmation the cancer has returned.
First, thanks for your recent testimony and sharing the fact that your husband had successfully received TWO rounds of radiation!
I’m reaching out to ask if you could share your husband’s radiologist’s information, so we can potentially contact him/her for further advice and guidance.
Thanks in advance!
MichaelEJohnson4@gmail.com
972-809-3640
Call me any time. Left you a message. Emailed you too.
@grr456 posted:I recently had my prostate removed in Jan of 2022 and I am 70. I got my J-Pouch in 2000 and have had very good luck with it these past 21 years. I was diagnosed with cancer nearly a year ago. I couldn't find a surgeon anywhere in the Michigan area, even though there are many J-Pouchers in the Metro-Detroit area.
I had many adhesions with several blockages over the first 5 or 6 years. So my options were going to be complicated, no matter which route I chose.
I was going to go with external beam radiation, until I saw my original J-Pouch surgeon and he said absolutely not. He said no matter what the radiation doctors tell you, they can't be as accurate as they need to be with the external beam. But, he suggested the high dose radiation method where they implant radio active seeds within your prostate, which in turn kills the prostate and the cancer. So, that seemed like a great alternative, until I went thru all of the testing and the prostate was too dense (or something) and I wouldn't be a good candidate for that.So, back to looking for a surgeon who had experience. The radiation Doctor knew Dr Karnes and recommended hom. I took a ride and spoke with Dr. Karnes at the Mayo Clinic in MN and he said he was very familiar with J-Pouches and prostate removal. I was very comfortable with him and what he said and everyone I met there. Rochester MN is a 12 hour drive for me and I was dreading the drive home a few days after the surgery.
So, I cold called the Cleveland Clinic whis is less than 3 hours from me. They referred me to Dr. Kaouk who was also familiar with prostates and J-Pouches. I drove to the Clinic to meet with Dr Kaouk and his assistants and once again, I was very comfortable with what he said and how he was going to handle everything.
Since I would have to travel to see either Doctor, I chose the Cleveland Clinic only due to the shorter drive for me. Both Doctors seemed more than qualified and personality played no part, strictly 3 hour drive VS 12 hour drive after surgery. Dr Karnes prefers an open surgery while Dr. Kaouk uses the latest single port DaVinci robot for surgery.The bottom line is that I am happy I went with Dr Kaouk and robotic surgery. I have a single 2" scar from the surgery, instead of a longer scar from an open type surgery. When I woke up in the recovery room was in absolutely no pain. I spent the night in the hospital and went home at 11am. I was never in any pain. The pain scale never went above a 1 or 2 - I could bend and get out of bed without problems and it never really bothered me. He used superglue on me and that began flaking off after a few days and still no pain even when I washed the incision...
So, that is my long winded prostate removal story. Please feel free to contact me if anyone has any questions...
Gary....rce789(at)yahoo.com
I am 53 and i have had an enlarged prostate for a few years. I had a cystoscopy a few years ago and urologist stated then my prostate was size of an older gentleman. Had my first Total PSA lab a year ago and it was 1.97. the Cleveland Clinic range was up to 2.6. My urologist ordered a FREE PSA this time and i had the lab yesterday. Thru MyChart the result came through but i didnt look at it as im terrifed but did see a note stating we can discuss results at my office visit on this friday. But now I am freaking out thinking its bad news. I have crippling anxiety and assuming the worst so I called my urologist office and asked for his nurse to call me back and let me know good or bad as i cant wait till friday. She is supposed to call me back this afternoon. But I live in Cleveland so if I need a biopsy or if its cancer and need removal I will request Dr Kaouk. Your surgery was 2 years ago now, can you detail the outcome and any lasting effects from it. ? I worry about losing my redone pouch and the obvious things like urinary incontinence and erectile dysfunction.. Lets just say I am terrified right now.
@Pouchomarx, I cannot say I understand what you’re going through as my father is the one who went through this in 2020 (went to Dr. Karnes for his prostatectomy), but I empathize with you for sure! I’m am also an obsessive worrier who couldn’t stand to wait 5 minutes, let alone a few days. Did your doctor’s nurse give you a call back? Ultimately, I truly believe things will work out for you. I’ll be praying for you for sure. Please keep us posted. Feel free to call/text me anytime as well. 972-809-3640 ❤️
@MikeEJ34 posted:@Pouchomarx, I cannot say I understand what you’re going through as my father is the one who went through this in 2020 (went to Dr. Karnes for his prostatectomy), but I empathize with you for sure! I’m am also an obsessive worrier who couldn’t stand to wait 5 minutes, let alone a few days. Did your doctor’s nurse give you a call back? Ultimately, I truly believe things will work out for you. I’ll be praying for you for sure. Please keep us posted. Feel free to call/text me anytime as well. 972-809-3640 ❤️
Had my appt friday. PSA is now 2.78, and FREE PSA was 30% which is considered abnormal with Cleveland Clinics chart of 2.6. My urologist stated lets get PSA again in 6 weeks and if its any higher he could order a prostate MRI so we can see if anything looks suspicious. If anything is there and PSA goes up then consider doing a biopsy. He knows about my jpouch and cant do biopsy the normal way so said he doesnt do the biopsy but the interventional radiologists do them transuretheral. Actually get the biopsy thru the bladder, and if Mri is suspicious they can pinpoint which areas to biopsy. Said its CT guided . If it is cancer then he would send me to Dr Kaouk at Clinic as hes done removals on jpouch patients robotically thru the perianal skin with great success and little complications. But said lets not get ahead of ourselves, and one step at a time. Said if cancer we are on top of it and will get it very early. But also stated we already know my prostate is slightly enlarged from the cystoscopy so i coul be dealing with BPH and not cancer as that can cause elevated PSA as well . still very scared though
Thanks for the update! Not getting ahead of yourself and worrying is absolutely way easier said than done, but it’s still a true statement and one I hope you can manage to accomplish! 😊
We’ll certainly be praying for you! We look forward to your next update! God bless! ❤️
Glad your okay
@New577 posted:The surgeon told me that radiation would cause the pouch to stiffen and then fail. I did not press for more info given the negative biopsy at the time.
I do not know what the latest thinking there is regarding low dose brachytherapy or other treatment options.
however, I would be terrified to have any additional surgery in the pelvic area.
I have worked very hard to get to the point where I am feeling good on a daily basis.
update: I was informed after I posted this morning that my PSA has returned to normal
i completed 30 days of bactrim to knock out a recurring uti (that gave false high PSA readings).
while I am out of the danger zone for now, I hope this thread continues to get updated since us pouchers will have have some very tough decisions to make should we develop prostate cancer and want to treat it.
my PSA has bounced around up and down between 1.9-2.7 for the last 2/1/2 years i am 54 years old. just had it done and its 4.8. Urologist said he wants to redo PSA and also get a MRI of prostate 6 weeks from last one which is in 4 weeks at this point. He wants me to take Cipro or Bactrim for a few weeks prior to make sure its not related to pouch inflammation i was having or possible prostatitis. I have taken Cipro before without issues for pouch but never Bactrim. I am hoping its not cancer as i have been a mess the last 2 weeks and have convinced myself i have cancer now. i also have a slightly enlarged prostate which urologist discovered when doing a cystoscopy several years ago so could be reason for my higher PSA numbers for my age, but that was stable for years but now this big jump and i am worried
Please don’t make yourself crazy. My PSA is 5.6 adjusted for avodart (it would be double that at 11.2 if not for the bph medication).
I’m not sure if you’ve had an MRI or not, but mine several months ago showed nothing but a big prostate.
4.8 is a big number, but taken in context with bph could explain it. The mri is a great non invasive test that will provide some clarity to the situation.
the big jump could also be explained by prostititus, and bactrim will certainly help with that.
i no longer stress about my PSA number. Don’t get me wrong; i do worry about it, but i no longer live in the terrifying future.
@New577 posted:Please don’t make yourself crazy. My PSA is 5.6 adjusted for avodart (it would be double that at 11.2 if not for the bph medication).
I’m not sure if you’ve had an MRI or not, but mine several months ago showed nothing but a big prostate.
4.8 is a big number, but taken in context with bph could explain it. The mri is a great non invasive test that will provide some clarity to the situation.
the big jump could also be explained by prostititus, and bactrim will certainly help with that.
i no longer stress about my PSA number. Don’t get me wrong; i do worry about it, but i no longer live in the terrifying future.
I am to start Bactrim DS or Cipro 2 weeks before the next PSA lab and MRI on March 4th. not sure which one i am going to take yet but i am TERRIFIED that I have cancer now. My mind has gone to dark places and i have not been eating or sleeping the last 2 weesk, its awful. My ANXIETY has been thru the roof.
I am sorry you feel this way. i suggest you take this "One day a the time". I know how hard that is to do, but I can tell you going to dark places is futile, because you don't know you have it. We have been through 8 bouts of cancer and have kept this motto in mind so as to not go crazy. Best of luck and keep us posted!
Anxiety has been so bad . I havent slept really and cant really eat much as i lost alot of weight plus had the flu 2 weeks ago. my PSA and MRI are coming up next Tuesday and i am freaking out. Will talk to urologist on results next friday.. this sucks as its hard to function as my brain is fried
ok so i started the Bactrim and day 10 of 14 i broke out in a nasty full body rash, apparently i had a delayed reaction to sulfa. Had my PSA and prostate MRI LAST WEEK and spoke to urologist at Cleveland Clinic on Friday. My PSA went up to 8 from the previous 4.7 six weeks ago. My MRI stated no lesions found and my prostate was 40 grams which they said 30 was normal. So he stated i have BPH and also could be from inflammation from the full body rash and i had the flu really bad 2 weeks prior to the exams. Wants to do PSA again in 3 weeks. He said i could do the IsoPSA lab which is alot more accurate than regular PSA but insurance doesnt cover it so it will be about $350 out of pocket. I am still on the fence about it but he stated from the MRI that he doesnt feel a biopsy is warranted at this time. So i feel alot better about all this, but still some a tiny bit of doubt that the MRI could have missed a very small cancer.. thoughts?
Good evening @Pouchomarx, thanks for the update!
I completely understand you having anxiety, but you’re in GREAT hands with Cleveland Clinic. The fact that your MRI showed no lesions is VERY reassuring, and your urologist doesn’t think a biopsy is necessary right now, which is a good sign. PSA can fluctuate due to many factors—BPH, recent illness, inflammation (like your rash), even stress! Waiting a few weeks and rechecking makes a ton of sense, and if you’re on the fence about the IsoPSA test, you can always further discuss the pros and cons with your doctor (I know I stated the obvious there).
At the end of the day, you’re doing all the right things and it’s great that your doctor’s disposition is cautious, but not alarmed. Try your best to take things one step at a time (as stated in previous messages, WAY easier said than done), but you’re not alone in this. We’re all here for you!
