Hi Guys, Last time I wrote here a few weeks back a lot of people were kind enough to reply, hoping for some more informsation from people with this experience.....
Briefly: 58 Years old, been referred by GP and having tests at hospital for a sudden rise in PSA from regular 3.1 to 7.5 after a 14 month gap between tests.....Whilst waiting for hospital to get in touch went to a private clinic for a new PSA test with "Free PSA".....Test came back at 4.3 PSA and a free PSA of 23%.....Also had a consultation with private consultant from the clinic who is a well known prof of urology ....40 minute consultation and DRE and he tells me "No Cancer".....
Since then I have been called to hospital, had a cystoscopy (Tests clear)...a CT Urogram and a 3T MRI....They wanted to give me a biopsy, but in light of the lowered test result and the "diagnosis" from the prof I asked my hospital consultant (via his secretary as I have yet to meet him) if I could swerve the biopsy and see what the MRI threw up...He agreed. ....Hospital appointment yesterday to discuss results with urology dept. Doctor called me in, never introduced himself, was a bit stand offish, not unpleasant but very business like, asks why I did not have the biopsy? (he isn't the consultant obviously) I explain my reason and he asks to see the lowered test results, I show him. He explains that the MRI is showing "something" and it is small. I ask him if it is confined to the gland (it is) ....But they need to do a biopsy to see what it is. I say that I thought that a 3T MRI could tell the difference between something nasty, something benign or inflammation....He says that this is not the case, his words were something like: "PSA means nothing, Free PSA means nothing, Scan means nothing only a biopsy can see what this is"
He did say that if I wasn't worried I could leave it until the next PSA reading to see what has happened, but I don't have that kind of personality.
I now feel like I have shot myself in the foot as I have now booked a biopsy for 2 weeks time and the results 2 weeks after that, so instead of finding out yesterday I now have another 4 weeks to sweat before I get a (maybe) definitive answer.......Basically my question is this: Has anybody had the experience where an MRI scan has shown something up which eventually turned out to be nothing to worry about.....I'm talking up to date equipment here guys....
Remember that even cancer diagnosis doesn't mean it will grow, even if not benign. I've been glad to have had biopsies which confirmed cancer, but low Gleason score, so have just needed to have it monitored, not treated. This has continued for several years now, (I'm 66) with no sign of growth or spread. I hope, if you have it, you have the same kind of experience, even better that you get an all clear.
Hi Pepasan, I'm new to all this although I have spent the last 5 weeks since my raised PSA scare doing a lot of research....I'm hoping for something benign of course but thought that 3T MRI could tell the difference, hence my question....Don't know if I could do the active surveillance thing....you have to have that kind of mindset I guess....Good luck for the future....and thanks for the reply
The answer is yes. I had a continually rising PSA over the years. Years ago I had had 2 biopsies, both negative. PSA kept rising to 9.7. At this point I found out about 3T MRIs, and had one. It came back with a very suspicious area, so of course arranged for a third biopsy, a targeted fusion biopsy where they use the MRI to guide where the needles go. The biopsy came back negative. With that said, even if your biopsy were to come back positive, a large percentage of PCa is very slow growing, not aggressive, and not something to be overly worried about. You would want to thoroughly educate yourself so that you could make an informed decision about how to proceed. You really can't trust the uros to give completely unbiased and thorough guidance. This forum is a great resource, and there is another one that I found to be incredibly helpful. Also, a few excellent books. I can post the name of the forum and the book titles here if you or anyone else is interested.
I just saw your reply to Pepasan. If there is PCa, please educate yourself before ruling out active surveillance. It's not appropriate for all situations, but there is a huge amount of over-treatment of PCa with the possibility of very detrimental side-effects.
Hi Rich, thanks I remember your reply from my previous post.....I am hoping for a likewise negative result, but thanks to my needle shyness I now have to wait another 4 weeks for a result....I know you have read the Mark Scholz book and are an advocate for AS......at 58 I don't know if I could do it.....I fear I would always be concerned that whatever it was was biding its time before becoming aggressive and waiting to ambush me
The MRI will show if there is anything and if there is like most of the guys have said that it will be slow growing. Have it done to see for sure. Don't rush into have anything cut out. I read a artical a few years ago. I want my prostate back. Read it if you can find it. It more problem if you have it cut out. Ken.
I understand your concern and would absolutely support you in whatever decision you think is best for you. I'm not really an advocate for AS, but an advocate for not taking any uro's declarations as to what is best for you as definitive, and for taking charge of yor own care and researching things thoroughly.
Have you read the Mark Sholz book? There are two others that I found
very helpful:
Prostate Cancer Breakthroughs 2014: New Tests, New Treatments, Better Options: A Step-by-Step Guide to Cutting-Edge Diagnostic Tests and 12 Medically-Proven Treatments by Dr. Jay S. Cohen
You Can Beat Prostate Cancer: And You Don't Need Surgery to Do It by Robert J Marckini
And as I mentioned, there is another forum on another website that is specifically devoted to PCa. I found it very helpful when I was researching PCa in between my MRI and getting my third biopsy results.
Hi Rich, thanks for the book ideas, I'll check them out....I seem to have spent the last 5 weeks doing nothing but researching PCa. starts to get a bit depressing after a while...I am an OCD personality so find myself obsessing about this stuff all the time....Not Good....I've checked a lot of websites and forums Healing Well You are not alone etc....But always open to more ideas
I've been in your situation and wish to recommend two liquid biopsies as alternatives to the MRI and needle biopsies. These tests are fairly new and look for biomarkers at the molecular level as signs of developing prostate cancer. One test is called the MiPS (Michigan Prostate Score ) test that looks for biomarkers in the urine. The other test is a blood test called Apifiny by Armune that looks for auto antibodies specific to certain prostate cancers. Both these tests can be ordered by your doctor. I finally stopped my uro from ordering unnecessary needle biopsies by having these tests done myself. The results showed very little chance of cancer ( they are complementary tests ) so I could focus on BPH. If you need further help let me know. All the best. Neil
Ah yes, there can be a fine line beween OCD and being thorough. With me, it really boils down to whether I'm being tense about something, or just recognizing that I need to be my own advocate in the broken health care system in this country (USA).
The website I was on had a very knowledgeable frequent poster. The depth of his knowledge and the time he spent in correspondence with me and many others was quite amazing. Another universe from the 10 or 15 mn that uros schedule for each patient here my neck of the woods. I'll put the web site info in another post. If the moderator blocks it either for a while or permanently, please PM me if you'd like the name of it.
Hi Neil, I'm in the UK and subject to the National Health service, which is a pretty good organisation, but I'm guessing that the procedures you're talking of would be a bit Hi-Tech/Expensive for them ....Think they're still using leeches in a few places ....I've even tried to find a place that does the PCA3 test, but the nearest place is about 300 miles away....I went privately to get my free PSA tested as the NHS don't fund that one....Don't really want a biopsy but I'm on the conveyor belt now....Just want to get it over and done with and get the results.....I was just concerned that the MRI is showing "something" but the doc says that without biopsy they cant tell what it is...I thought that the 3T MRI was pretty good at differentiating, maybe I got it wrong....BTW I have a large prostate and BPH....whether I have anything more sinister is another matter
Whoops. I posted the general website, not where the forum is. The general website looks very helpful, but I haven't spent time there. I will post the link to the forum in a seperate post. Looks like it will be all be reviewed by the moderator.
Hi Rich, You may be talking about the healing well website and a guy called Tall Allen?....or maybe not....I was thinking about going and asking my question there....but I feel that maybe I should just drop it and get on with my life for the time being....feel free to give me the site details if you dont mind though....Thanks again
No, not that one. The second post that the moderator has on hold is the link to the forum. I think the moderator usually gets to it withing 24 hrs, and I think he won't have a problem with it. If you'd like the info sooner, PM me and I'll get it to you.
I also have a large prostate, and as mentioned, an MRI that showed a very suspicious area, but subsequent negative biopsy. Best guess is that my elevated PSA is due to the large prostate.
Thanks Rich, I'll be glad to have a look at your forum....I hope you are right about your MRI (I thought that they were cutting edge and could "see" anything)....I'll keep my fingers crossed for you if you'll do likewise
I understand - I live in Canada and could not get my doctors ( uro and GP) to accept these new tests so I drove to Detroit and paid cash for the tests myself but that is not an option for you. Still, it might be worth contacting the MiPS people at the University of Michigan and se if they will mail you the kit to do yourself and return. I have a 300 gm prostate and will be travelling to N. Carolina next week for a PAE procedure. The uros here in Canada really trash the PAE and just want to do a prostatectomy on me but I will not let them do it - thanks mainly to the good folks on this forum and their success stories. The 3T MRIs are very good at distinguishing early prostate cancer from BPH but the liquid biopsies are best if available. I had too many TRUS biopsies over the years due to my high PSA. I believe they contributed to chronic inflammation and my growing prostate over the years - but thankfully no PCa much to the chegrin of my uro. All the best to you. Neil
a 300 gram prostate?.....is that the same as a 300cc prostate or have I done the sums wrong?....that is a mighty large prostate....you could get a mention in the Guiness book of records....I've read about the PAE....looks intriguing.....Hope it goes well for you....Just wondered if they couldn't shrink it with drugs....Proscar or the like?
Looks like the moderator hasn't gotten to my two posts yet.
Not to cause you any more concern, but it's my understanding that all diagnostic methods, including biopsies, can have false negatives. The MRI can actually see part of the prostate that a biopsy can't reach. The MRI can have false positives (that's me and hopefully you!!!). Along the same lines, if a biopsy returns a sample with a Gleason score that indicates PCa of some degree, that evaluation is to some extent subjective. I think that sometimes it's a good idea to get a second opinion on the Gleason grading. I had lined up John Hopkins for a second opinion if mine had come back positive. If you have a biopsy and want to have the option of a second opinion, make sure that the sample tissue is available to you for sending to another lab.
I took Proscar (finasteride) for 6 months, and while it did shrink the prostate some, my LUTS remained the same. I suspect that it might work for some folks.