Fusion prostate biopsy question
Posted , 6 users are following.
I've posted about this before but I thought I'd start a fresh thread as I'm seeing the urologist again next Tuesday. His radiologist read my 3T pirads MRI as finding four and five lesions in the transitional Zone (which I think means the area closest to the uretha). However the fusion biopsy turned up nothing. His nurse absolutely refuse to tell me how many biopsies he had done which I found unsettling but I went ahead and after it was done he said he had done about a hundred and fifty. What he called me with the results of finding nothing he also said a level five score indicates an 80% chance of cancer being present. So either the radiologist was wrong, the urologist sampled the wrong areas in the biopsy or I am cancer-free. Is nurse called me back after I made the appointment today and asked why I wanted to see him. I mentioned my questions about the biopsy and she got all huffy. But I think that it is a civil and reasonable question so I'm going to go ahead and ask him anyway. My primary symptoms now are hesitation and sometimes burning when I begin a urine stream, and the weakness of the urine stream itself which can take up to a minute of starting and stopping. My other problem is extreme pain in the prostate / rectal area which has been going on for almost 3 years. This started about a year after I began noticing a very slight weakening of the urine stream so I can't help but think that the two problems are related. I also told her that I was going to ask the urologist if possibly compressed discs in my lumbar spine (l4/l5 & l5/s1) could be affecting any of the nerves that ennervate bowel and renal functions in that area. She told me that that wasn't a question that I could ask him. I do believe she was trying to cancel the appointment on me. But I finally got her by saying that I wanted to discuss taking Flomax or some similar drug to shrink my prostate if that's what was causing the weak urine stream. And that was indeed going to be one of my questions. I wish there was some sort of actual real time log in the fusion biopsy that showed exactly where he put the needle every time. If biopsies only missed cancer 1% of the time I could see her point but when in reality it's 10 to 15% I think I have the right to ask the urologist how the MRI could be so at odds with the biopsy results. And I'm going to ask him if he has specifically done 150 Fusion biopsies or just random biopsies. My PSA has been 9.3 at the highest and 3.4 which was the last time it was checked. I think his nurse is angry with me because I pressed her really hard about how many Fusion biopsies the doctor had done when she refused to tell me or check. But that's a perfectly reasonable question right? Has anyone ever heard of fusion biopsy results as zero when there actually was cancer that was missed? I'm getting really desperate to find out what is causing my pelvic pain. It seems like it is either caused by my urinary issues or whatever it is is causing my urinary issues. And I think I have the right to ask the urologist in person rather than arguing over the phone with his nurse.
0 likes, 11 replies
liza82877 rolf61809
Posted
Hi Rolf. Whatever questions you may have, you have every right to direct them to your urologist. His nurse has absolutely no right to filter your questions nor impede you from asking him for any clarification. If you find yourself not comfortable with your present urologist, you are perfectly free to go to another urologist or urologists till you find your perfect fit. It took us six urologists and one genito urinary tract doctor to find our right urologist. It is your life and your health, nobody else's. My husband is experiencing pain on his right leg from the hip; it seems like sciatic nerve pain. It comes and goes. His butt pain is excruciating when he can't relieve himself properly- we're talking #2 here. He used to have very weak urine streams and very frequent (like every half hour) nocturnal breaks. We're glad we found this doctor we could completely be honest with and get straight answers and seeming remedies to my husband's PCa stage 3, Gleason Score of 8 problem. Good luck. This is the right forum to get support from other patients going through the same thing.
rolf61809 liza82877
Posted
Thank you. It's tricky to switch doctors as the new one always seems to believe everything that the previous doctor forwarded in your medical records. My first urologist wrote that I had refused a prostate biopsy which was a total lie but said I imagined to cover him in case it turned out that I did have cancer. I switch to another practice and the first thing that Urology said to me was I see you refused to get a prostate biopsy. I corrected him and said it was never suggested. Later, I saw another urologist in his group and also the first thing he said was I see you refused to get a prostate biopsy... So apparently no matter what the patient says the records don't get corrected or updated. And in my case it's not like I could go to a new urologist get a new MRI and a new Fusion biopsy. So I'll have to flat out ask on Tuesday is there any chance you made a mistake or missed something? If he keeps his cool and gives me a straight answer I'll stick with him otherwise I will have to find a new urologist. And there is a stigma somewhat attached to going from Doctor to doctor to doctor. Especially if you're seeking pain medication though I have not requested it from any doctor I've ever seen. About 8 years ago I began experiencing stomach pain right below my rib cage and after 2 and 1/2 months scheduling a test waiting 2 weeks scheduling another test waiting 2 weeks they finally figure it out that I wasn't crazy and then my bile duct was blocked, which led to First them cleaning it out and then removing my gallbladder a few months later as they said the bile duct would just get plugged up again.Of course by then I'd lost almost 70 pounds... I never made an issue of it with my primary care doctor because I was so happy that they had finally found the problem. But since this pelvic pain started 3 years ago I've had occasion to remind him of that two or three times, that maybe I was telling the truth this time too. Pain is a difficult thing for doctors to stay interested in, especially in the urinary tract / pelvis which is one of the most complicated areas of the entire body. The previous urologist i saw in this group told me to stay off the internet as it was just confusing me and upsetting me unnecessarily. This was after I refused to just get a 12 core random prostate biopsy and instead insisted on getting a 3T MRI first so that I could get a fusion biopsy if needed. Dealing with doctors egos is a delicate dance.
liza82877 rolf61809
Posted
Hi Rolf. The other patients in this forum have rightly voiced their opinions. it is your body after all. you have to trust your gut feeling. Do not get disheartened nor discouraged, sometimes one needs to go through a series of doctors . We've been fortunate not to have each doctor say we seem to be in the wrong clinic if we have already decided not to choose conventional medicine. We just want what options there are. Doctors all seem to have their own opinion. They seem to be wandering in the dark too, as we patients are. But we want to rely on them since they're SUPPOSED to know what they're doing. Some DON'T, that's the unfortunate truth. Ask all you want clarified and decide if you trust this doctor with your life. God speed. Praying for guidance helps.
anne05147 rolf61809
Posted
H Rolf, no one wants to get tagged as a 'difficult patient' but when my husband was first offered a rectal biopsy he did not feel confident as the consultant didn't know that he'd had an MRI done, didn't know the results of and had to go somewhere to check when he informed him he'd had one done. He came back and said the MRI looked suspicious. My husband was happy with the cleanliness of the area either, so said he would think about it. He was then offered another appointment but in the meantime I contacted our GP asking if we could be referred to another hospital. They then did another MRI and found nothing suspicious on the MRI result. Even though he has an elevated PSA of 11 which sometimes is lower he has also been diagnosed as having an enlarged prostate. He has also been offered a transperineal biopsy but agreed with his consultant to have regular PSA testing instead and then review. He was booked for the transperineal bipsy after having a rectal ultrasound but then had to have an emergency op to remove his appendix, so recovering from this also influenced his decision not to have anything more done at the time. He feels more relaxed not making any decisions at the moment and the consultant agrees that unless his PSA starts escalating rapidly he is happy to keep monitoring his PSA levels. The patient is the part of the decision making process and needs to be respected. Thankfully his consultant is in agreement with that process.
All best wishes in doing what you feel is best for you in agreement with your doctor. Hope you find one that allows you thinking time.
anne05147
Posted
should read 'wasn't happy with the cleanliness'
rich22 rolf61809
Posted
the further into your story i got, the more infuriated i became. buddy, it's YOUR body. she's only a fricken nurse! why are you bothering to explain ANYthing to her? you call and get her to make an appt for you to see the doctor and that's it! if she gives you any crap, you go to the office and tell her to make an appt for you or you'll have the cops there on a discrimination charge, period.
as for the technicalities of why you're in pain, i'm not a doctor. if you suspect you're having bone problems, see a bone specialist, orthopedist or orthopedic oncologist. a bone scan detects abnormal bone activity but again, i ain't the doctor.
man, that nurse needs to be kicked out on her butt! good luck, amigo
anthony70342 rolf61809
Posted
My husband and I went through this in the beginning as well. But when you finally KNOW that you have cancer, you bypass all of the stupid nurses/doctors/billing depts and get down to business. That business is to know your own body/what it's telling you and what you think you should do for YOU! I knew Anthony had some sort of cancer back in 2012 (gut feeling). Our PCP NEVER "stressed the fact" that his PSA was a "little high." Not to sound stupid but what is PSA?? His Stage 4 Prostate/bladder cancer is now in remission ONLY for the fact that we went with Cancer Treatment Centers of America/Phoenix and "I TRUST them!" But now we're dealing with the "who pays John/Insurance crap." So Rolf, DO WHAT YOUR BODY/MIND TELLS YOU. And Godspeed Rolf. It's not always doom but it's good to know. Take care!
anne05147 rolf61809
Posted
Best wishes.
rolf61809
Posted
My gut feeling has always been if something internal really really really hurts there must be something really really really wrong. 4 years ago I began noticing that my urine stream was becoming slightly weaker, and it was the year after that did I began experiencing pain similar to the worst attack of acute infectious prostatitis I have ever had. I have had prostatitis since my early twenties and usually got an attack of acute infectious prostatitis every 5 to 8 years which usually resolved itself in a week or 10 days. At first my urologist didn't want to do a Dre because he said that it could cause sepsis, but several months later to my amazement my prostate was not the least bit sore when he finally got around to doing the d r e. 3 years ago the pain which I thought was prostate related was cut in half once I found a competent internal therapist. She found insanely painful trigger points in the puborectalis, coccygeus and obturator internus muscles. And about a year ago I began experiencing pain in the area between the epididymis and the prostate on both sides accompanied by intense pain on other side of the sacrum. I thought that something had to be infected, like the epididymis lymph nodes, seminal vesicles or vas deferens. I did have an ultrasound on the epididymis which revealed cysts but the doctor said that they weren't of a kind to cause pain. An MRI of my lumbar spine showed that I had disc issues in The L4 to S1 range. So after some research I started looking into the pudendal nerve and possible pudendal neuralgia. In the past 3 years I have also begun experiencing peripheral neuralgia in my feet and lower legs which is been gradually worsening. Could my pelvic and leg issues because buy a bulging disc pressing on a nerve I don't know. I do have a nerve block at L1, but the neurologist who I'll call Moe with his assistants Larry and Curly, hit the sciatic nerve on the right side causing me to jump literally an inch or two off the table. Of course while i had a needle in my spine so I never went back. From some of the reviews I subsequently read about him apparently his plan is usually to start at L1, L2, L3 Etc. I am currently trying to find the neurologist who I can trust to continue the nerve blocks but I don't want to just do them randomly. I'm thinking starting at L4 and working my way down, especially L5 through S3. And depending on those results possibly a pudendal nerve block that they do through the buttocks into alcocks canal. A couple years ago another urologist at my current practice said that he could do a pudendal nerve block through the perineum but it would be without any kind of guidance like ultrasound or CAT scan or an MRI or however they do it. He said he did them all the time for penile surgery but the thought of him more less blindly trying to find alcocks canal without any concurrent Imaging scared me off. When I asked his nurse about it again a few months ago she said that he didn't do that now, at least not for me, though I probably still wouldn't do it without some sort of Imaging. Luckily I have excellent insurance at least through the end of the year so I feel I don't have any time to waste anymore. God forbid I should get to Medicare age and have to deal with the number of doctors who will even accept that. Excuses for the rambling narrative but it is really difficult to formulate plans of action without the assistance of either my primary care doctor or my urologist.
rolf61809
Posted
Had a good long talk today with the urologist who performed my Fusion prostate biopsy. We went over all the possible causes that I could think of for a weak and sometimes painful to initiate urine stream. I asked whether there were any real time tests to identify possible blockage of the ureter. I mentioned that one of his colleagues had performed a cystoscopy for which he had told me everything was normal. My urologist today pulled up the results and noticed in the notes that the urologist who perform the test had noted that the ureter walls were 'kissing each other' where they went through the prostate. I was somewhat in shock upon hearing this as that is certainly not compatible with calling the test results normal the way I see it. It also seems to me that if the narrowed part is Downstream of the ejaculatory ducts of the prostate that it could cause urine to back up into the prostate itself. But this didn't occur to me until I was on my way home, which is usually the way it is. I knew that my prostate was almost double 'normal' size. If the urologist who did the cystoscopy had told me the prostate inflammation was squeezing my urethra almost shut I would have started on proscar and Flomax immediately, which is what I'm doing starting now. I have read before that urine backflow into the prostate and seminal vessels can cause pain and inflammation. My takeaway from this is that you should always read every line of every diagnostic report even if you don't understand every word. I have been complaining about pain and burning with a weak urine stream for 3 years now. You would think that the urologist would have picked up on this before I finally figured it out.
barney34567 rolf61809
Posted
To echo what most folk in the room have said:
1. It's your body/disease/future. If you're unhappy with the service you're given by ANY physician it isn't only your right to go elsewhere, I'd wager it's your duty.
2. If a physician or his staff refuse to answer your reasonable questions to your satisfaction, don't argue. Change doctors.
3. I am 51 and was Dx'd with aggressive PCa in 2016 and have fired urologists and oncologists I was unhappy with, for different reasons.
3. Do not think you can't change physicians. Of course you can. And doing so shows you are putting your LIFE ahead of any other consideration, as you must.
4. You must be comfortable with your choice of doctors because even if you're hopefully finally cured, you'll need to be in touch with them periodically.
Best wishes.