PSA of 20, consultant thinks it's cancer but I am not sure.
Posted , 13 users are following.
I've had prostate issues for about 3 years alongside bad gut problems, which turned out to be a parasite and fungal infection (maybe more than one).
I have had quite a lot of antibiotics over the past year, some of which have eradicated my prostate symptoms, but they have come back. My working hypothesis has therefore been that I have an infection of some sort.
I had an MRI 2 years ago and it showed no cancer, my PSA was 8 then. I have another lined up next week - my PSA is 20 now, but the consultant is determined that I should also have a biopsy. I am not keen to do that, but at the same time I want to be sensible.
The consultant seems very reluctant to acknowledge that my symptoms could be caused by anything other than prostate cancer.
Can anyone offer any practical advice please?
0 likes, 34 replies
nick67069 PiersCV
Posted
I had PSA of ~8-10 when I developed an autoimmune condition (called PMR) , which is basically inflammation of muscle tissue ( mostly peripheral muscles), but my PSA went to 24!... Now, 3.5 years later, autoimmune condition has almost gone to remission and PSA is lower too (14), not yet at the pre-illness level though. During this time I had 3T MRI twice and there was no sign of cancer.
As far as biopsy, it is much better to get MRI first and then, if there is any suspicious area, do targeted, guided biopsy , not the blind , 12 core or 16 core one that is usually offered.
arlowood PiersCV
Posted
There are several factors that can cause your PSA to be elevated over and above the obvious one of prostate cancer. These factors include infections (UTI's and prostatitis) and the effect of certain medications.
I would certainly continue to have the MRI done and then discuss the results with your urologist. If the MRI does not show up any suspect lesions then you can decide whether or not you want to have a biopsy at that point.
PiersCV
Posted
Thanks guys.
Yes, I am going to see what the MRI is saying before making a decision on the biopsy. I might also seek a second opinion at that juncture. Unless of course there is clearly something amiss.
I think what is surprising me is that the urologist seems very reluctant to consider that I may have an infection and seemed disinterested in my gut problems. He said that an infection / prostatitis would not cause a high PSA reading, which surprises me.
When I last had an MPMRI the urologist was quite convinced that I would have a tumour, until the MRI said I hadn't. He too wasn't interested in my gut problems.
I do wonder whether it is a case of, "to a man with only a hammer every problem looks like a nail".
JerryR PiersCV
Posted
PSA can be raised by infection, large BPH, riding a bicycle, sex, and maybe other things. I would trust a 3T MRI over a Uro. Good luck to you.
william10248 PiersCV
Posted
skip the consultant and see a Urogist to schedule a bioosy! Prostate cancer can be deadly!
oldbuzzard william10248
Posted
Bad advice IMO. Prostate cancer is rarely deadly and there is no reason to have a needle biopsy in this day and age.
tom86211 oldbuzzard
Posted
Oldbuzzard,
I completely disagree with your advice that "Prostate Cancer is rarely deadly and there is no reason to have a needle biopsy in this day and age". The biopsy is the only way to grade the cancer. If you don't know the Gleason grade you will not be able to make a correct decision about how to treat it or whether to treat it at all.
There is a psychological component to all of this. If you know you have the cancer, either from a biopsy or a MRI, then you can't just ignore it and go on with your life believing that it is "rarely deadly". I went through this for a year and a half between my first and second biopsy - knowing I had cancer and not having it treated WAS a form of treatment. It weighed on my mind constantly. After I finally had my HD Brachytherapy treatments in 2014 there was a huge psychological relief. Now, the cancer is 100% gone, but my prostate is still with me and I have been suffering from BPH issues, but, I am no longer worried that I have cancer that is growing and may spread. A friend of mine has prostate cancer that has spread and he is taking all sorts of medications and is in constant psychological torment.
Tom
oldbuzzard tom86211
Posted
tom86211 -
Everyone has to do what they feel is best and no one will have no trouble finding a urologist who will be happy to remove your prostate and give you a 50/50 shot at impotence for no good reason because you have a cancer that has almost no chance of spreading. Statistically, they have shown that PSA tests don't even save lives. This is a MAJOR surgery, with a long recovery and a better than 50/50 chance of causing permanent, serious side effects, with a 5% chance of being necessary. To each their own.
tom86211 oldbuzzard
Posted
oldbuzzard,
Have you ever been diagnosed with prostate cancer? If not then you really can't know what it feels like to know that you have cancer growing inside you and that it might escape the prostate. Scans and even biopsies are imprecise and it is common that after a RRP the lab report comes back and finds a Gleason 7 or higher, when the patient thought he had a Gleason 6. This entire field is filled with uncertainty, and the lack of certainty is what causes psychological pressure to have the prostate removed or radiated to get rid of the cancer. Years ago, after my first biopsy, I could have written the exact same post as you, but after going on active surveillance I found that there was an emotional pressure about not knowing what was going on inside me that only went away after my treatment. My second biopsy showed "progression" - same Gleason 6 but more cores positive and higher percentages of each core with lesions. I consulted several urologists and they all advised me to move forward with treatment. I am glad I did. After my radiation I felt better, emotionally, knowing that I had killed the cancer (at least 90% chance). After that it was then years of BPH issues. Once a man gets a positive test for prostate cancer, either from a scan or a biopsy, his life will change forever, either from treatment, or continued testing, scanning, or more biopsies. This is a tough road to travel on.
Tom
oldbuzzard tom86211
Posted
Everyone has to do what they think is best. If I had a Gleason 6 diagnosis (which means almost never having any impact), I would be much more concerned about being impotent or incontinent than a way less than 1% chance that this cancer would ever turn into anything - particularly because they grow very slowly if at all. I would have myself checked regularly and if things changed I would go from there.
Did the surgery make you impotent?
tom86211 oldbuzzard
Posted
If you had a Gleason 6 diagnosis you don't know if it's really a 6 or a 7. This happens all the time after the lab analysis comes back after RRP. "I would have myself checked regularly..." This means biopsies, over and over again. You keep missing the fear component. Once you get a positive report for cancer it's not so easy just to say "well, it's only a 6, I'll just go on with my life and not worry about it." It doesn't work that way. It is very difficult for most men to stay on active surveillance due to the constant knowledge that you have the cancer and that it is growing and it might escape the prostate. Better get it before that happens. After my radiation treatment I felt MUCH relieved. I got rid of the subscriptions to all the prostate cancer publications and the books. Now, I was off into BPH territory - a terrible experience, still causing me issues. Did the surgery make me impotent? Well, I can get erections, but it's not what is used to be. I can't prove this but I believe the radiation effected some of the nerves that control erections. Over time the erections get less and less. Given what I have gone through with the BPH and damage to the nerves in the prostate I would not choose to have radiation done again. After my recent bipolar TURP the tissues were sent to the lab and came back with no cancer - one benefit to a TURP. This, along with a PSA of 0.2, and I am very confident that the cancer is gone. But, what I have gone through over the past years with all of this has been a terrible, draining experience. Back to something I said before - this field of medicine is very imprecise, and that is another unsettling part of this journey.
JerryR tom86211
Posted
I'm following this conversation and agree with oldbuzzard. I just want to say that nobody knows what a Gleason 3+3 "prostate cancer" will do. I want to suggest two questions to ask the urologist: (1.) "Doctor, what would you do if it was your prostate?" and (2.) "Doctor, what would you do if it was your father's prostate?" Then you might get an honest response from the urologist. Doctors can't advise you to do nothing, even with a 1% chance of progression, for fear of a malpractice suit. But I think they can honestly answer the two questions.
oldbuzzard tom86211
Posted
Your experience is exactly why I would react differently than you did. First, you don't need regular biopsies unless MRIs show that there is progression. Second, a less than 1% chance of progression vs an over 50% chance of impotence and/or incontinence is an easy choice for me. And now you have BPH on top of it.
I could live with knowing I had a less than 1% chance of progression a lot easier than being impotent or incontinent for life. You're different so you did what's right for you - I would take the more data driven approach.
tom86211 oldbuzzard
Posted
I DID have progression after the second biopsy report. "I would react differently than you did." You don't know how you would react if you got a positive report for cancer, and a Gleason 6 may or may not be a 6. Biopsies are samples and often miss a 7 or 8. You are commenting from a theoretical point of view, but you have never gone through this in real time.
I was never offered a MRI. The only time I heard of it was here on this forum.
Basically what you are saying is that if you did get a positive report for cancer you would ignore it if it was a Gleason 6 - essentially active surveillance. What I am saying is that sounds easy on paper, but when its your life that's on the line, its a different story. I spent a year and a half on AS and it caused me constant anxiety. When I got my second biopsy I had hoped that there would be little change, but that wasn't the case, and so the anxiety level ramped up and I had to move forward with treatment. When you get a positive lab report for prostate cancer it's like a ticking time bomb inside you. You worry that it might escape the prostate capsule, then you really have a problem. After my treatment my anxiety level fell dramatically, especially when my PSA tests came back at 0.1 or 0.2. However, even now, there is always a slight concern that the PSA might start going up again. I have read that it can take 15 years before you really can say that the cancer is gone. The good lab report after my TURP really helped. I say that I am 100% cured, but there is still a minor concern every time I get a PSA test (every 6 months).
tom86211 JerryR
Posted
Jerry,
Same comment to you as to oldbuzzard - you don't know how you would react unless it happens to you, then the anxiety kicks in, and the only way to get your life back is to have treatment. Active Surveillance causes constant low level anxiety, and most men can't stay on it for long.
barney34567 tom86211
Posted
I agree. Of course PCa can be deadly. If one has a Gleason score north of 7 (i.e. 4+3), then one must take appropriate action.