This forum is for the discussion of anything to do with Prostate Cancer. There are only four rules:
No fundraisers, no commercials (although it is OK to recommend choices of treatment or medical people based on your personal research; invitations to participate in third-party surveys are also acceptable, provided there is no compensation to YANA);
No harvesting e-mail addresses for Spam;
No insults or flaming - be polite and respectful at all times and understand that there may be a variety of points of view, all of which may have some validity;
Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making
Failure to abide by these simple rules will result in the immediate and permanent suspension of your posting privileges.
Since this is an International Forum, please specify your location in your post.
Hi Peter
There is not one of the 800 odd people who have contributed to this website who was not scared - You are not alone. Your PSA rise must be investigated - get yourself a good urologist and have the biopsy done. Take it from there. You have a rising PSA and history. It may be that the PSA is caused by the prostitis but don't take that chance.
Urologist said I can get the biopsy right after the holidays. Give it to me straight. Given my age and the rapid rise of the PSA, wouldn't that mean I have a very aggressive cancer. Also my RBC and HCT are slightly below normal. How aggressive can this cancer be? Does the fact that the urologist does not feel an abnormality mean anything favorable? Give it to me straight. I appreciate you taking the time to communicate with me. I am a single guy, no kids, not many friends since my divorce many years ago. I don't have any family either. Mom is very old and not well herself and brother is kinda of distant. I really appreciate your communication.
We have all been as scared as you are now. But don't let all these thoughts of how bad this thing COULD be or MIGHT be, ruin what you have right now.
First off your PSA record that you quote is 0.027 - 2.27 - 1.7 - 6.5. And you say you have had prostatitis for over 30 years! Well, the PSA is volatile but not CONSISTENTLY trending upwards. This MAY have always been the case with you, and prostatitis and benign prostate conditions can cause this. Read Terry's PSA 101 to learn about just how volatile PSA can be.
Also you don't say, but was your last PSA taken by the same lab as the others? Did you have the digital (finger) exam at the same time as the PSA? Was your prostatitis bad at the time of the PSA? All this will distort the result.
You will feel much more in control, and therefore much more secure, when you have made a plan. Have a good holiday and then have the biopsy. Make sure you get the best biopsy technician available and have MRI scans and ultra sound before hand. When you get a result take it to a second opinion.
You probably will not believe it but really, you do have time to think and make a plan. But first you need knowledge. Read as many experiences as you can on this site. You will see that even IF you are in the club, there is plenty left for you to do. And you have lots of time to do it.
Hi Peter,
We have all been there and done that. You have good advice in previous posts. The is little point in seeking to draw conclusions without the necessary investigations being undertaken. Many of us have had positive outcomes, and now enjoy a good quality of life. Keep your chin up.
John
Peter, another comment from someone who has been there. Its pretty common to feel scared, as the earlier posts noted.
As hard as it may be, relax and enjoy the holidays. Get the biopsy relatively soon (does not need to be done instantly). Get the results and then take the next steps. You are doing all the right things.
Should you be diagnosed with PC, it will be emotionally draining. But remember, its extremely treatable with many, many men (myself included) being treated and living long and normal lives.
Thanks very much Paul for your encouraging words. I think it's my fear of that very aggressive cancer we hear about. I am only 58. In the urological setting, I am considered young. It's the velocity that has me frightened the most, 1.7 to 6.5 within 18 months. Perhaps my chances of even 5 year survivability are compromised by my age and a fast moving cancer. Perhaps 10 more years and at 68 I could somehow come to feel I lived a full life. But now I am still a bit young to cut down by this disease. I feel I am being confronted with something much bigger and more powerful than anything I ever thought possible in my life. I was cured of HCV in 1999 after 13 months of treatment with interferon and ribavirin. That was tough treatment but my chances of liver failure were only 10% with a stage 2 virus and stage 3 liver damage. I never really thought my life was on the line. But this is different. Now we are talking about malignancy. This is life and death, the crossroad. I am just being honest about my feelings at the moment. Thanks Paul. I deeply appreciate your response.
"Now we are talking about malignancy. This is life and death, the crossroad". Peter, that is not at all what we are talking about.
First you do not know if you even have the disease. Second PLEASE take time to read the mentor stories of guys who do have it and even have it bad. Read Terry's own story which is one of minimal, and late, intervention.
As Joe told you, you are only a keyboard away. I have a feeling that all the other life and personal challenges you have had, have got bound up with this health scare.
You obviously feel very lonely and vulnerable. As well as really learning the facts of what you may, or may not have, maybe look for some help on the personal front. Many of the guys here have written openly about seeking counselling and will tell you how it helped them. Just a thought Peter.
Thank you very much. I am trying to not let my fear get the best of me. I will have the biopsy after the new year. Since I just had a DRE this past Tuesday, I am waiting 2 weeks to test the free PSA number. Thanks again. I have an uneasy feeling that I will probably be on this forum for quite some time as I have no family and few friends with whom I can share this life changing experience. Thank you very much.
Peter, remember the word YANA and what it stands for You Are Not Alone, that is what this site is about. We offer each other support so try not to feel you are alone with few friends, indeed you have many friends, there are a lot of us out there and we are as close as your keyboard. Best of luck
Thank you Joe and Ted. I appreciate your kind thoughts and encouragement. I have read some of the stories from the men who belong to this site. I am deeply moved by their journeys. I pray for each and every one of them. Ten years ago I was a mentor for many HCV patients who were not responding to treatment as I somehow miracleously did. This is life, we go from extreme to another, a reminder of impermanence of all things. I will take refuge on this site as I have no family and few close friends. I am in Brooklyn New York USA.
I know you're afraid of this thing, and every one of us understands that, because we're afraid of it too. You do have some things working in your favor though. One, you've had problems with Prostatitis and that can cause rapid PSA increases. Two, you said your Father had Prostate Cancer but didn't die of it. So take heart in the those two facts because they're definitely on your side.
This forum is a place you can come and share your fears and people here will help you through this. As others have said you should read the stories on this site, because they are very encouraging. There are many people doing well after treatment, so hang in there.
I'll admit this place saved me, the stories and the knowedge I got from emails saved me for sure. I can't thank Terry Herbert enough for the time he spend with me. The man is pure Gold.
So hang in there, let all of this go and enjoy the Holidays. I know that's easy to say and hard to do, but try it. We'll be here when you need us.
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Peter,
Sorry to read of your perfectly understandable concerns. As the others have said, we all understand, because we’ve been there.
Although you have had some excellent responses and advice, it seems to me that you may feel that your specific questions may not have been answered, so here’s my view:
1. You ask: How aggressive can this cancer be? It is impossible to say that you have any cancer at all at present, let alone how aggressive it might be. One study puts the chances of a PCa diagnosis at about 20% with a PSA of under 10 ng/ml. But the only way that it is possible to get a view on the potential aggression of a tumour – if there is a tumour – is by way of a pathologist’s grading of the material from a biopsy.
2. You ask Does the fact that the urologist does not feel an abnormality mean anything favorable? Yes, it is a favourable sign. There is a very dangerous form of prostate cancer that has low PSA levels, but because it is an aggressive form it is usually diagnosed by way of a positive DRE (Digital Rectal Examination). So in your case with a variable PSA, more commonly associated with a disease like your prostatitis and a negative DRE, you should get some comfort that it is unlikely that you will have an aggressive form of the disease.
3. You also say I am only 58. In the urological setting, I am considered young…….Perhaps my chances of even 5 year survivability are compromised by my age and a fast moving cancer. Perhaps 10 more years and at 68 I could somehow come to feel I lived a full life. 58 is not considered as ‘young’ by many because the median age for diagnosis has dropped from the mid-70s (when I was diagnosed 13 years ago) to the mid-60s. Men in their 40s are considered as ‘young’ now. And, of course, you haven’t even been diagnosed yet!!
But I understand where you are coming from because I was ‘young’ at 54 when I was diagnosed in 1996. Initially, since no one told me anything else, I assumed I had 3 or 4 months to live, which was somewhat disconcerting. Over the first frantic weeks – and there was a good deal less information on the Internet back then – I established that it wasn’t that short a time: 3 – 5 years was the estimate by most of the doctors I spoke to. Not good, but better than 3 – 5 months. I then learned more – and the more I learned, the longer my potential life-span went and I was determined to make at least 10 years. My current target is at least 20 years.
Good luck with your biopsy and let us know how you go
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Terry, thanks again for taking the time to put some of my particulars into what seems to be a meaningful context. May I ask how many years it has been since your initial diagnosis? I have reading many of the stories the men have put on this website. My prayers go out to all of them. I shall be with all of you now, for as I have said already, I don't have any family or close friends. So my immediate goal now is to muster up strength to go forward with the biopsy and whatever comes out of that. My urologist says he does not use any numbing during the biopsy, but he assures me it will be quick. Perhaps you can give me some of your expertise on this matter.
Tell your urologist that YOU want some numbing for the biopsy, if you are concerned about that. Some men do not have a problem with the pain associated with the procedure, others do - and it also depends how many needles are to be taken. But in any event it is your prostate being pinged, not the doctor's - if he doesn't agree with your request, find a more caring doctor.
Oh, and establish before hand how the pathologists will report on the biopsy. The site of any samples should be clearly identified so that if there is any positive material, you know precisely where it comes from, and it should also give the percentage of any positive material in any specific sample. There are too many biopsy reports that say simply "sample positive for adenocarcinoma in right side of gland" or somthing similar.
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Peter: "My urologist says he does not use any numbing during the biopsy", . . . well tell your urologist that this is where his modus operandi just got changed and YOU do require numbing during the biopsy.
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Urologist says he will do around 8-9 needles without numbing. He says needles will be very quick. Give me the lowdown. Does this really hurt without numbing, or is just more of the same type of sensation like DRE or massage? What has been your experience? If the entire procedure goes quickly, I probably can endure whatever it feels like. But if I must linger with pain during the procedure, I will have to reconsider getting another urologist. Although I have been with this urologist for a very long time.
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Great comments above on the biopsy.
I had it done by my urologist, with some local anesthetic for numbing. There was some stinging while taking the samples, but at least for me, it was not very painful. The sample taking lasted about 30 seconds and was over before I knew it.
Definitely have the anesthetic - I cannot image why the doctor would not give it to you.
One last comment on this... while taking the samples itself is not very painful, I found the whole procedure stressful, mainly because I did not know exactly what was going to happen. Ask your doctor to take a few minutes to explain what he will do during the procedure, and what you should do after the procedure. For me, this would have made things a bit less stressful.
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Peter, I was admitted as a day patient, "knocked" out completely. I came to feeling great. My wife drove me home and I had no problems except for the blood thing.
I would be asking for sort of numbing and why not ask, don't be shy.
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Terry, I read your story with the deepest interest. You are a very strong individual. I cannot imagine how I could go through what you have experienced. My prayers go out to you and the others.
I have reading quite a bit about PSA testing and PC. I understand that the higher the PSA, the chance is greater I detecting PC. As of 11/5/09 my PSA is 6.5. Is it possible to have a free PSA over 25% with a PSA of 6.5? If so, are there any statistics on these chances? I am going to do a free PSA on 12/10/09. That will be 16 days after my DRE. Maybe it's human nature to have hope against hope, but I hoping my PSA comes down and my free PSA is greater than 25%. On the other hand, the PSA may be higher than 6.5 with little free PSA. Then I know for sure PC is likely to be detected by biopsy.
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Peter,
Ted suggested some days ago that you should read the piece I titled PSA 101 - have you been there? I think not because you would probably not ask this question Is it possible to have a free PSA over 25% with a PSA of 6.5? Because the answer is clearly YES, it is possible. If you have looked through the site you will get a clear picture that a PSA level of 6.5 ng/ml is not particularly high - see the stories of men with their PSA levels in the hundreds or even thousands - THEY have worryingly high levels.
On the PSA 101 page you would have seen this about PSA and free PSA:
When the PSA test was introduced in 1990 a reading of more than 10 ng/ml was regarded as one that should be investigated further. This figure was subsequently reduced to 4.00 ng/ml, which is regarded as "normal" in most countries and by most medical people. In the US there is a move to reduce the limit to 2.60 ng/ml or even to 1.25 ng/ml. On the other hand, one leading expert physician feels that any PSA result under 12 ng/ml is not worth being concerned about, unless there are other symptoms. Between 25% and 35% of men with a PSA reading of between 4.00 ng/ml and 10.00 ng/ml will be found to have prostate cancer - in the majority of cases, the elevated reading will be due to some other cause. Here is a small table that summarises on study on the relationship between PSA and the likelihood of prostate cancer being detected.
Table omitted as it will not format here
If any PSA result is between 4 and 10 ng/ml, and provided there has been no treatment, a second test should be run - the so-called fPSA, PSA II or Free PSA test. This doesn't mean that you don't pay for it. It refers to the amount of what is referred to as "unbound" PSA. The result of this test will be shown as a percentage of the total PSA measured. The risk of cancer being present varies in inverse proportion to the percentage shown. The Table below (rewritten for this post for clarity) shows the probabilities:
Free PSA 0 – 10% Probability of Cancer 56%
Free PSA 10 – 15% Probability of Cancer 28 %
Free PSA 15 – 20% Probability of Cancer 20 %
Free PSA 20 - 25 Probability of Cancer 16%
Free PSA greater than 25% Probability of Cancer 8%
As you see, there is an inverse relationship – the higher the percentage of fPSA, the lower the probability of PCa being discovered, but even at very low (below 10%) levels of fPSA there is still a 44% probability that there will not be any PCa found and at very high levels, (over 25%) there is about an 8% probability of PCa being found.
So the higher the percentage, the less chance that there is of the PSA being caused by prostate cancer. A fPSA of over 10% would mean that the most likely cause of the elevated PSA is not prostate cancer: a fPSA of under 10% is strongly correlated with prostate cancer. There are some studies which show that the fPSA test may be valid for readings between 2.5 ng/ml and 20 ng/ml.
Peter, one of the most important issues about PCa, which I don't think you have grasped yet, is that the entire process of diagnosis, choosing treatment if neccssary, the outcome of any treatment is all UNCERTAIN. There is no one anywhere that can say "This level of PSA means that you have cancer" "That level of PSA means that you do not have cancer."
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Yes, I did read PSA 101. I just wanted to know about anyone else's direct experience. But I understand what you are saying. There are a lot of unknowns involved here. What about velocity? I have read that the more rapid the rise, then if PC is detectec, the more aggressive the disease may be. This does seem to make sense.
I also wanted to clarify a previous entry. Although my dad did not die from his PC, he did died from Alzheimer's less than 5 years after his radiation treatment for the PC.
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
You can't measure velocity in a small series of highly variable results, such as yours. There is controversy about the value of measuring velocity. A recent study - mentioned in The""New" Prostate Cancer Information site (see links last week) - implies that the value of velocity has only been demonstrated in studies run by Dr Catalona, the 'father' of PSA testing.
Can I suggest that if you are looking for only personal experiences, rather than general information, you make that clear in future posts.
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Thanks again Terry. I apologize if in any way I have confused any readers on this forum. I have read information about PC on countless number of websites. I am looking for any information that may help me better understand what I may now confront. I also am interested in anybody's related experiences with high PSA. I hope I am not disrespecting any one on the site. If I am, it is not intentional and I apologize.
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Hi Peter
there have been a lot of very useful comments on your thread and I hope that you are feeling more empowered and settled regarding your current results - I just wanted to add my experiences on the biopsy.
My first 2 were done in the doctors rooms. There was no anaessthetic used apart from a local contained in the lubricating jelly used - I cannot see why any doctor would not use this. In my case I had extreme discomfort, and the process was not that quick - Each core is taken from a needle fired by a "gun" which then is put in a jar and the gun "reloaded" - so it took some time to collect 6 cores - about 15 min maybe from start to finish. Each time I could hear the click before the shot which made it worse. Each sample was like being kicked hard in the backside.
After the proceedure I was emotionally shattered - it was so invasive. I took some time to recover, went back to work as I had a business meeting, but had to go home.
I am sorry if this gives a negative picture and as Terry has pointed out, some react better than others but it is important to prepare. I had a 2nd biopsy 3 months later, which was as uncomforatable as the 1st, but not as emotionally draining. I was not prepared to have the 3rd one under local and was put under for that with no side effects after.
It will help if you have someone with you for support.
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Thanks a lot Tim. I appreciate your information about your experience with the biopsy. May I ask why you had another biopsy after 3 months. That's quite an ordeal in itself. I am starting to think that if my urologist doesn't at least use some numbing in the jelly, I will have to consider another urologist. It sounds to me like the biopsy may feel worse than getting radiation to treat PC. Am I totally ignorant here, or simply jumping the gun regarding any discomfort associated with radiation treatment?
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Peter,
If your urologist doesn´t want to give you numbing, he belongs to the ignorant kind. Maybe so ignorant as not to give you antibiotics. So please make sure of that.
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Hi Peter
In reply to why I had 3 biopsies - I had a high PSA and low fPSA ratio - indicating potential cancer - however the pathologists could not diagnose PCa with the 1st 2 biopsies - which were labelled "atypical" the "highly suspicious". Thats the way it is, if the biopsies are not conclusive you will probably be asked to re test.
Having said that my current uro who did the surgery disagreed with that approach - he would have done a saturation biopsy under general, and taken 20 odd cores (vs 6,6 and 8 over my 3 biopsies) probably would have found the cancer a year earlier. The reality is that you take a very small sample size and the cancer is often missed. If I had to choose again I would have done the saturation biopsy 1st off. Needless to say the proceedure in hospital would be more expensive.
Your uro should maybe ultrasound the prostate for size - the bigger, the more samples they may take.
The other consideration is interpreting the biopsy results - often post prostatectomy the pathology is re rated. In my case biopsy found Ca in one lobe, Gleason 3+3 - clinical post was in both lobes, Gleason 3+4
Best wishes, Tim from South Africa
Re: Rapid Rise In PSA (sould be Unusual Variations in PSA)
Hi Peter
I am doing well, thank you - you can read my story at http://www.yananow.net/Mentors/TimG.htm. I will be visiting my specialist tomorrow to get my 1st post op PSA results and discuss penile rehab. I'll update my blog later
