January 18 - minor problem - having to urinate every couple of hours. GP checked prostate and found no abnormalities. Took blood and found PSA levels high. Repeat blood tests 3 weeks later...,PSA level was higher still, currently level is 24.6ug/l. GP initiated urgent referral to consultant in March. Seen by consultant in mid-May who confirmed GP diagnosis that nothing untoward regarding size/shape of prostate. Consultant recommended urgent mpMRI. Prescribed a beta-blocker that would assist in easing urination issue. In early July, Radiology Dept at NHS gave me a waiting period of 20+ weeks for the scan, but no guarantee!!! Having already been in the system since February, it now being July..., decided only way to get this back on track would be to go private. Now awaiting results from scan I had last week. Waiting time for private scan - two days! Cost..., won't go into that!! Currently awaiting report which is due early this week, which will be passed to my GP and Consultant who unfortunately is on vacation until early August!
Would be interested in hearing from anyone who has had PSA levels like this and what the outcome was?
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StuartS
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If it were due to cancer, a PSA of 24 would normally be classified as "high risk", deserving of immediate treatment. It is possible, but unlikely, that the PSA is caused by something other than cancer. However the other major causes of elevated PSA - enlarged prostate (benign prostatic hyperplasia or "BPH") and inflammation of the prostate (prostatitis) - rarely cause a PSA to go that high. I can't help wondering if some incompetent or uncaring doctor or bureaucrat failed to see that you have an urgent problem here and stuck you at the back of the line.
I suggest that you pull all strings and make whatever appeals that you can to get a prostate biopsy ASAP. Although the GP who seemed to recognize that your case was urgent may be away, maybe the private doctor who did the MRI can help or advise you on how to get someone else at NHS to understand that this case needs urgent action.
Prostate cancer is usually "slow growing" and some bureaucrat might think that this is not urgent. But high risk cancer can be fast growing and even a slow growing cancer that has already grown for a long time can be near or at the borderline where it is about to become metastatic and no longer treatable with curative intent.The MRI can show you if you are already metastatic with cancerous lesions large enough to show up on the scan. It can't prove that you aren't metastatic because the lesions might be too small to show up on MRI but still be present and still be uncurable by surgery or radiation. If the MRI shows that your cancer is already metastatic, it is still treatable but no longer curable with current medical knowledge. If you are metastatic you won't necessarily die of the cancer. The other treatments that are available might keep you alive long enough for you to die of some other old age disease. But of course they might not.
Many men in your shoes might panic and become angry or enraged. Don't do that. It won't help. Your situation is not caused by the medical system, it developed by itself. Now the problem at hand is to mobilize the medical system to get in gear and help you. Work hard but be practical and try to get these people to understand and help you. Make threats if you have to ("What is your name again? I want to talk to your supervisor." etc.) but always remember that the goal is to get help, not to punish anyone.
I hope that you get a biopsy and MRI soon and find out that, in spite of the high PSA, you don't have cancer.
Hi Alan..., I thought I had responded to your comments above but I can't see the post! Anyway, I stepped outside of the NHS system and went private last week Little or no waiting time! Report received earlier this week. Report advises: There is a large 2.5cm abnormality lying in the anterior gland. This lies mostly on the right but it is seen to cross the midline. This shows both restricted diffusion and positive DCE. There is a focal bulge present. The finding represents a PI_RADS 5 lesion. There is a further small area of abnormal signal present within both peripheral zones posteriorly. These represent PI_RADS 4 lesions.
Report also advises that no pelvic lymphadenopathy demonstrated and that Seminal vesicies are normal.
Next step a biopsy!
I made contact this week with my GP and Consultant Urologist, and am advised that an early biopsy will be conducted..., but the waiting time is about 8 weeks! Not too sure how this time period will affect my issue. I know that I can get this done in about two weeks if I go private again, but not too sure if an 8 week wait is that critical given it could have taken months if not years for the lesion to have developed to what it is now!
I'm just not knowledgeable enough to give you any further advice on what to do. Maybe the private consultant you met with last time can answer a phone call to say whether waiting 8 weeks is dangerous or not.
One problem I foresee is that, you might wait 8 weeks for the biopsy, another week for an appointment to get the results, a diagnosis of cancer (almost certain at this point), followed by another 8 weeks before they schedule any treatment. They'll probably tell you that prostate cancer is slow growing and 4 months is no problem, but you have to wonder what they would say if they or their fathers were in your shoes.
If there is any kind of reasonable appeal process, you might try it.
My situation is only partly analogous. I live in the US and over 18 months my PSA fluctuated between 3.7 and 4.4. Upon DRE my urologist felt a nodule on the prostate and recommended a 12 core biopsy. I rejected a biopsy in favor of an MRI. The MRI confirmed the urologist's diagnosis and I had to do the biopsy anyway. Only the biopsy can determine exactly what the situation is - whether the growth is indeed cancerous and what kind of cancer cells are present - through the Gleason Score system. In my case, though more than one GP told me that my PSA numbers were within normal limits (hence the 18-month time frame before the MRI) it turned out that I had Gleason 4+5 in three of the biopsy cores. That is an aggressive cancer. After careful consideration I opted for a robotic-assisted radical prostatectomy, which upon further biopsy / histology revealed the the cancer had invaded one of the two seminal vesicles, but not the lymph modes. I also had negative surgical margins. The point of my analogy is that an MRI is much more comfortable than a biopsy - but may well lead to a biopsy anyway. The good thing about the MRI is that the scan can sometimes be used to guide the biopsy, so that the needles are not sampling tissue in a shotgun approach, but with some more focused targets.
My other point is that PSA is an unreliable indicator of cancer. Each human organism is different. Some men may have high PSA numbers and very low grade, slow growing cancers, while others may have low PSA numbers and aggressive cancer. And any variation in between. I wish you the best of luck and good health!
I am so new to this issue that I am on a steep learning curve regarding what is what..., and reading copious internet articles on PSA..., DRE... (had two of those recently - GP and Consultant Urologist)...., radical prostatectomy...., Gleason score..., etc. etc. So, individual comments of how and where this all comes into focus where an individual is concerned is certainly most useful.
I had a mpMRI last week, and expect to get the Radiologists report this week. My GP is very supportive (spoke with him this morning), and he is working with me on a roadmap to plan the route depending on what is discovered in the MRI output. I don't as yet know what options will be available to me regarding if I have a choice in what specialist I will work with - that will be decided early next month however, your points regarding using the scan to better pinpoint the area for a biopsy is very relevant . In the meantime I have been prescribed a beta blocker that is easing my bladder issue - I now get a full nights sleep..., no more 2am..., 4am..., 6 am visits to the toilet. Apart from a slight breathlessness that appears to have started in the last couple of months, and the earlier annoying early morning toilet runs, I do not feel ill or appear to have any other symptoms caused by my prostrate issue.
I suspect that there will be a biopsy sooner rather than later, so now reading up on that topic!
Hi Stuart I am also in England and with NHS treated now at Royal Marsden,I have a current PSA of 28 and its on the way down from 33,I have had Prostate Cancer since I was 68, (Ten years) and I have had various treatments ,Radiotherapy and after it failed, HIFU,PSA test are not that accurate,I have just has Prostatitis,and that can cause it to soar,the last bout of it my PSA went up to 25 a week later it was 12.50 a week later still and it was 2.50.The NHS is sometimes slow,but it does work, but sometimes with the best treatment it still fails, as in my case. I think UCH is the best in London, it depends where you are in the country ?Longrungos comments are good ,good luck.!
Many thanks for your input. At a very early stage of this condition and determined to get as much information as possible to allow me to make informed judgements of the future treatments that may be offered. Currently awaiting report from Radiographer on MRI completed last week. My GP phoned me yesterday to get an update on the MRI (which I had completed under my own arrangements), so he is staying on top of the issue and ready to assist which is encouraging, given how hard pressed the NHS is these days.
Your post indicated that you have had HIFU. I have read a few articles about this treatment, and whilst I appreciate that everyone is different and therefore treatments can have different outcomes, I would be interested in what you felt regarding HIFU, a treatment which I believe is a relatively new process. Firstly, and most important..., did HIFU achieve the expected outcome? Were the side-effects acceptable? Would you recommend it?
Appreciate you may not wish to discuss this aspect in any detail, but I would be interested in your general view of HIFU from your perspective.
Well I felt like you ,"I must act fast " it was very slow at first, and I was given three option Radical surgery ,Radiotherapy, or Brachytherapy, I opted for the latter, months later I got an appointment, MMI revealed not suitable, so I got pushed into Radiotherapy wrongly thinking if that fails I can revert to the first. Side effects lasted for a while. Then tried HIFU, under general, painfull for a while but not that bad, then the Cancer moved to a place where it could not be reached with the needle, so I am now on medication only, Most of my friends have had Radiotherapy and it has worked, try if you can to maintain your cool, you are still awaiting a result all the best wishes Terence
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