Medical Forum / Diseases and Disorders / Prostate Cancer / March 2004
Confused Wife
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Angela M - 28 Mar 2004 09:23 GMT Hello everyone, Can anyone help me see things more clearly, back in September Martin, (aged 59) my husband, had a DRE (enlarged, smooth) PSA 4.9, six weeks later psa 5.9 he had a biopsy (6 core) 3 weeks later. His urologist said there was a small area of concern. He got a second opinion from one of his colleagues, who said there was a very small area of cancer. Martin had a 12 core biopsy on 10th March, that came back negative. The urologist say "nothing to worry about, come back 17th May for a psa test) How can you have a small area of cancer and not be worried.
Martin's brother died of prostate cancer 3 years ago aged 62.
Any advice please, Martin thinks it is all over and done with (we DO live in the North of England!!! :) ) and thinks I am over concern.
All the best to you all
Angela
Leonard Evens - 28 Mar 2004 13:16 GMT > Hello everyone, > Can anyone help me see things more clearly, back in September Martin, (aged [quoted text clipped - 10 lines] > Any advice please, Martin thinks it is all over and done with (we DO live in > the North of England!!! :) ) and thinks I am over concern. Without more details, we can only guess. Also, we are not ourselves pathologists or urologists, so we can only try to relate this to our own experiences and reading. It would be best to ask the urologist about it.
Having said that, let me make a stab at it. Sometimes, one of the prostate samples may seem to be borderline as to the presence of cancer. A second biopsy with more samples convinced the urologist that there wasn't anything currently there. But he is continuing to follow the PSA to see if it keeps rising. If it does, he will probably order another biopsy further down the line. There is also another test called a free PSA test. There are two kinds of PSA, and the percentage of so-called free PSA can help determine whether the rise in PSA is more likely to be due to cancer as opposed to other benign causes. Men with high free PSA percentages typically don't have cancer and can avoid repeated biopsies. You or your husband might ask his uroloist about such a test.
It does seem that your husband's urologist is continuing to monitor the situation. The likelihood is still that your husband doesn't have prostate cancer, but he should definitely go for further PSA tests as recommended by his urologist. Worrying about something that probably won't happen is not going to make it less likely, so at this point you should assume the best rather than the worst. But just make sure that your husband does go back for more PSA tests.
> All the best to you all > > Angela jimhoney - 28 Mar 2004 16:13 GMT > Hello everyone, > Can anyone help me see things more clearly, back in September Martin, (aged [quoted text clipped - 14 lines] > > Angela Angela,
By asking about this, you may be saving your husband's life. So my compliments to you.
Now I am not a doctor, so I can't give any medical advice. But in cases where it is questionable whether or not the biopsy has found cancer, it is usual to request a second opinion on the biopsy slides. How you get that from the NHS I don't know. Persistence, I guess. And you specifically want to ask for the Gleason score. That is a predictor of whether or not the cancer will spread. http://urology.jhu.edu/Partin_tables/
I'm an American, but my wife is British and we have flats in both countries. So I know that the NHS has a different attitude toward prostate cancer than doctors in the States. Because the NHS is so short of money, it does not even do PSA screening. I think that in your husband's case, because it cannot be demonstrated for certain that this cancer will kill him, the doctor is doing what is called "watchful waiting." I predict that Martin will only be offered treatment if his rising PSA or a subsequent biopsy justify it.
I found that approach unacceptable when I was diagnosed at age 52. I had my case cured by surgery here in the States, knowing that if I took a chance and waited, and by then I was retired and in the UK, the NHS would watch-and-wait just as it is doing with your husband.
So how exactly do you get action out of the NHS? Is there an ombudsman at your local NHS trust? Would it be too embarassing to go to the local paper or your MP? What about that new system of sending overflow patients to France? French surgeons have been reporting excellent results with radical prostatectomy for years.
jimhoney
Ron Carter - 28 Mar 2004 17:24 GMT There are others in this NG far more knowledgeable than I am who will no doubt provide a more informed response, but it sounds to me as if Martin does indeed have very little to worry about. Given his family history, it's possible that he has some cancer just beginning to form that the biopsy may have missed. If that's the case, he has plenty of time to monitor the situation and investigate treatment options. Like him, I was ready to throw in the towel when I was told I had prostate cancer, but I have learned since then that my fears were groundless. If caught early, this disease is almost 100% curable.
> Hello everyone, > Can anyone help me see things more clearly, back in September Martin, (aged [quoted text clipped - 14 lines] > > Angela Lillian - 28 Mar 2004 17:39 GMT Angela:
Did the urologist who said there was a small area of cancer give you any other information, such as his gleason score or tumor level like t1c ect? When the cancer is small it can sometimes be missed in a biopsy. This is a slow growing cancer, however the earlier you do something about it the better. Most men are in denial, and are looking for the "come back in 3 months" so they can ignore it a little while longer. My husband wasn't even going to go for the biopsy, but I nagged him into it. If his brother died of prostate cancer, I would not put off doing something about it. If caught early enough this does not have to be a death sentence. Are there any other urologist in your area? Seems like a second opinion might help.
You will get some great advice on this ng from the guys, and the few wives that post here.
Husband DX age 55 Jan 2004 PSA 3.9 Gleason 6 (3+3) T1C Robotic LRP 3-15-04
jk - 28 Mar 2004 17:57 GMT > Hello everyone, > Can anyone help me see things more clearly, back in September Martin, (aged [quoted text clipped - 14 lines] > > Angela Get yourself another opinion RIGHT NOW. Travel if you have to. Bring copies of the pathology report.
 Signature JK Sinrod Sinrod Stained Glass Studios www.sinrodstudios.com Coney Island Memories www.sinrodstudios.com/coneymemories
Steve Kramer - 28 Mar 2004 18:20 GMT Hi, Angela. Welcome to our little newgroup.
We are not doctors, but in my opinion, you are not getting told accurate information or not hearing it accurately.
Hundreds of thousands of men are dx'd with prostate cancer annually, so it is common enough that you should be concerned for Martin. A PSA above 4.0 is further cause for concern. It is usually a sign of some prostate problem, not necessarily cancer. A rise from 4.9 to 5.9 in six weks is further cause for concern, but still maybe not cancer. The DRE showing an enlarged prostate is still more concern, but still not necessarily cancer. And, being smooth, it might be less concern for cancer. But, at this point something should be done for Martin. He should have been put on Cipro or another heavy duty antibotic to see if that had an effect on the prostate. The can help reduce the concern for cancer.
Now on to the biopsy. If he had a 6-core biopsy, I'd fire the urologist that did it. If he can't tell whether there was cancer, I'd fire him again. I would then take the "suspicious" core to someone who is an expert at grading cancers. That 12 core sampling doesn't change the suspicious core they found on the first one.
However, on the bright side, if Martin has cancer, it must be very, very small and in it's very first stages. I agree, at this point, going for another PSA in May is a viable option. At that time, he should ask specifically for a FreePSA test. That will give your doc(s) a better indication than just a straight PSA.
Prostate cancer can be heredity-based (mine certainly is), but usually only when it occurs very early in life, like in the 40s.
You are correct. It is not over and done with. Something is causing Martin's PSA and enlarged prostate. He's got to find out what it is. Right now, without a May result in hand, I'd say there is a better liklihood that his problems are benign, but he has to find out.
> Hello everyone, > Can anyone help me see things more clearly, back in September Martin, (aged [quoted text clipped - 10 lines] > Any advice please, Martin thinks it is all over and done with (we DO live in > the North of England!!! :) ) and thinks I am over concern.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03
Angela M - 28 Mar 2004 19:05 GMT Hi Everyone,
Thanks so much for your advice, it is very much appreciated, I will let you know how things go.
Take good care of yourselves.
Angela
Leonard Evens - 28 Mar 2004 19:43 GMT > Hi Everyone, > > Thanks so much for your advice, it is very much appreciated, I will let you > know how things go. Let me add that you might find the book Guide to Surviving Prostate Cancer by Patrick Walsh helpful. See in particular the sections on pp. 140-145. What your doctor did sounds very similar to what happens when "atypical" results are found on biopsy.
> Take good care of yourselves. > > Angela Ed Paul - 28 Mar 2004 22:24 GMT Hello, Angela.
I can only speak from personal experience (boy! can't we all?) and tell you that this nsg is a great source of information on this topic. Hang in here and you'll quickly learn quite a bit about prostate cancer and what people that post here are doing (have done) about it.
I'm 57 and in my own case, except for an elevated PSA, I was completely asymptomatic the entire time I was being worked up for prostate cancer. That is, right up until the final diagnosis and subsequent RRP (radical retropubic prostatectomy) I had this past Feb.
Prior to my final diagnosis, all my DREs were normal. I had no associated symptoms, such as enlarged prostate, nodules, urinary frequency, burning, pain, discomfort, etc., just an persistently elevated PSA that, ironically, actually kept getting lower each time it was taken, though it still remained above the 4.0 ceiling.
My first biopsy (a 12-core transrectal ultrasound) was "normal" except, like in your husband's case, the urologist found "an area of concern," that turned out to be PINs (prostatic intraepithelial neoplasia), a marker or pre-cursor of subsequent prostate cancer. Realizing that the transrectal ultrasound biopsy only had access to the rear (posterior) side of the gland and missed the entire front and lateral sides, we decided to pursue a transpubic MRI-assisted needle biopsy in the hospital under general anesthesia, taking a sample of 24 cores from both front and rear as well as right and left sides of the gland -- considerably more thorough than my earlier 12-core transrectal biopsy.
This follow-up biopsy resulted in 6 of the 24 cores of tissue sampled showing up as "positive" for cancer, with a Gleason staging score of 6. The Gleason score is a way of assigning an "aggressivity" grade to the cancer tissue, with a 6 being in the middle of the range and not generally associated with metastases or cancer spread. It would be informative to know what your husband's Gleason score is.
Well, needless to say, there was nothing else to find out or decide. I had cancer of the prostate and, to sum up, I subsequently decided to have the prostate removed. I read a lot of posts here, including those that referred me to outside reasding materials. These were all intrumental in helping me decide on treatment options I would pursue.
During this process I learned that the risk of developing prostate cance among men goes up tremendously if a primary male blood relative, such as a father or brother, has been diagnosed with it. So, I quickly alerted my brother (3 years younger) and cautioned my son to start thinkking PSA when he turns 40. I noted in your post that your husband's brother, in fact, died of prostate cancer.
So, in my humble non-medical opinion, I would encourage your husband to pursue this further and not close the book on it, since he does appear to have an "area of small cancer" that, given all the facts you've provided, appears to still be at a very early and, thus, curable stage.
Mine's all gone and never spread beyond the prostate, according to the pathology report I received from the surgeon. I'm thankful that my urologist and I decided to persist and pursue this to the very end. I'm confident my decision to do so has added quite a few years to my life.
Best wishes,
Ed
> Hello everyone, > Can anyone help me see things more clearly, back in September Martin, (aged [quoted text clipped - 14 lines] > > Angela Danny McCarty - 29 Mar 2004 01:13 GMT >Subject: Confused Wife >From: "Angela M" angela@maliaa.freeserve.co.uk [quoted text clipped - 19 lines] > >Angela The fact that the 12 core biopsy was negative is irrelevent. The cancer found in the 6 core biopsy is difinitive. Your husband has prostate cancer. At this stage there is a very good chance of curing it. I am not a physician and am not giving medical advice, but find yourself another physician. If the Gleason Score was 2 or 3, you could wait, probably, but your physicians' colleague said the word "cancer". 17 May of 2004 is only 6 weeks away- you can wait that long safely. If he has prostate cancer, his PSA should be about 7.0 by that time, at the rate of increase he had between the first two readings.
Leonard Evens - 29 Mar 2004 01:57 GMT >>Subject: Confused Wife >>From: "Angela M" angela@maliaa.freeserve.co.uk [quoted text clipped - 28 lines] > safely. If he has prostate cancer, his PSA should be about 7.0 by that time, > at the rate of increase he had between the first two readings. I don't mean to picky, but I think several people who have responded have assumed that the first biopsy showed cancer. Not being there, we can't really know, but we shouldn't try to second guess a qualified urologist, whom we know nothing about. As I've indicated, my guess is that the first biopsy didn't find any cancer but did find some "atypical" tissue, which might be a precursor to cancer, might indicate there is cancer elsewhere in the prostate, or might not indicate anything at all. In this connection, remember that autopsy studies have shown that large numbers of men who died of other causes had subclinical cases of prostate cancer that never bothered them. There is an ongoing debate in the medical community about the meaning of that fact. Certainly no one would advocate removing the prostate or zapping it with radiation in a case like this if, as may be the case, two biopsies did not turn up cancer.
I happen to agree that this man should not just forget about the whole thing. He needs to be followed up with continuing PSA tests, possibly a free PSA test, and probably biopsies further down the line. But that seems to be what his urologist is recommending. And we all agree that his wife shouldn't let him just forget the whole thing if that is his inclination.
Steve Kramer - 29 Mar 2004 23:16 GMT I agree that there is a lot we don't know and, as I stated, a lot of that may rest in the apparent possibility that Angela and/or her husband missed some fairly salient points or didn't report them here. And, I recognize that I form a paradigm on less data than is probably the norm, but I do have a good record for hunches and I have a hunch his uro is not the PCa expert that he needs right now.
Personal note to Angela: That doesn't mean I think he has cancer.
 Signature Prostate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1 Lupron 7/03, 8/03, 12/03
> >>Subject: Confused Wife > >>From: "Angela M" angela@maliaa.freeserve.co.uk [quoted text clipped - 50 lines] > his wife shouldn't let him just forget the whole thing if that is his > inclination. Angela Malia - 30 Mar 2004 19:15 GMT Thanks Steve, I take on board what you are saying.
Angela
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