Medical Forum / Diseases and Disorders / Prostate Cancer / February 2004
Decision Time.
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Keith - 30 Jan 2004 20:46 GMT Hello Everyone, I'm new to this site and also new to the realization that I have early stage PC. I have been given four alternatives for treatment, Surgery,Beam Radiation, Seed Implants or Watchfull Waiting. I feel that I am disposed toward the Seeds, but are there members of the group who have seriously considered waiting? My doctor believes that 80% of treatment is carried out uneccessarily, because of the uncertainty of the progression of the tumour. Can a change of diet and lifestyle possibly change the situation? Or is this just wishfull thinking? Thank you in advance, for any advice that you might have. Keith, aged61, U.K.
Bob Oaks - 30 Jan 2004 21:27 GMT > Hello Everyone, > I'm new to this site and also new to the realization that I have early stage [quoted text clipped - 8 lines] > Thank you in advance, for any advice that you might have. > Keith, aged61, U.K. You didn't say what your PSA and Gleason score are. My PSA went from about 2.5 to 4.0 in two years, and my urologist said that in effect we had already done watchful waiting--and watched the PSA go up! I am also your age. If you were 81 or maybe even 71, watchful waiting might be OK in my opinion. It also depends on how long men in your family generally live, but if you expect to live for another 15, 20 or more years, I would think some kind of treatment is called for. I fortunately discovered my PCa early and decided on seeds, which was performed 3 wewks ago. It was really very easy (I slept through the exciting part) and I had no pain or discomfort at all except for some bleeding for 48 hours afterwards. Compared to some of the other experiences on this board, I feel very fortunate.
Steve Kramer - 30 Jan 2004 22:12 GMT > I'm new to this site and also new to the realization that I have early stage > PC. Welcome to the club you did not wish to join. And welcome to the newsgroup. You've come to the right place.
> I have been given four alternatives for treatment, Surgery,Beam Radiation, > Seed Implants or Watchfull Waiting. For a 61 year old, watchful waiting (WW) is not an option. Whoever told you it is should not be listened to.
> I feel that I am disposed toward the > Seeds, but are there members of the group who have seriously considered > waiting? My doctor believes that 80% of treatment is carried out > uneccessarily, because of the uncertainty of the progression of the tumour. If you have prostate cancer and you do nothing, it will kill you. Of course you do not give your PSA, Gleason, or Stage, but I'm assuming, judging from your doc's statements, your PSA is over 4.0 (probably because he failed to find it earlier), your Gleason is 3+3 or 3+4, and your Stage is .... well, I haven't a clue. If that is the case, I cannot imagine under any circumstances why a 61-year-old man would choose WW unless he is riddled with diabetis, heart disease, and a quadraplegic with the life expectancy of a tse-tse fly.
> Can a change of diet and lifestyle possibly change the situation? Or is this > just wishfull thinking? It might have staved it off, but if you got it, you got it. In the future, diet and exercise can stave off recurrence and if it is terminal, stave off death. But, you cannot wish it away.
Run, don't walk, to the nearest bookstore and pick up a copy of Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, the leading book on prostate cancer. You need to find out all you can about the disease before making your decision -- and it is YOUR decision. Also, check out www.phoenix5.org, the leading website on prostate cancer -- built by a prostate cancer victim.
We stand by, ready, willing and able to help. We are not doctors, but the cumulative knowledge of prostate cancer here is proably more than 99% of the doctors in the world.
 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
MH - 30 Jan 2004 22:30 GMT Hi, Keith... Sorry to welcome you to the club, but this is a great group of people. You'll find lots of support here
At your age, I would never consider waiting. Most will agree that the end results with seeds, external radiation, and RP are pretty close to the same. You need to read as much as you can, weigh all your options, and make the decision that you feel is right for *you*.... then don't look back!
Good luck! And feel free to ask questions!
MikeH Age 52 LRP 11/21/02 PSAs undetectable ever since!
> Hello Everyone, > I'm new to this site and also new to the realization that I have early stage [quoted text clipped - 8 lines] > Thank you in advance, for any advice that you might have. > Keith, aged61, U.K. Leonard Evens - 30 Jan 2004 22:38 GMT > Hello Everyone, > I'm new to this site and also new to the realization that I have early stage [quoted text clipped - 8 lines] > Thank you in advance, for any advice that you might have. > Keith, aged61, U.K. Keep in mind that neither I nor the other responders are physicians, so what we say is just based on our personal experience and what we have read. If you doubt your doctor's suggestions, seek a second or even third opinion.
A lot depends on the specific diagnosis. If the cancer is very small, and the PSA and Gleason numbers are also low, then watchful waiting may in some cases be indicated. But it seems to me that 61 is a bit young to choose watchful waiting unless the Gleason score is less than 5.
Also, doctors in England are often more willing to wait than those in the US. Only time will tell which approach is better.
There isn't too much in terms of life style that will make a big difference, but there are some things which might help and can't hurt. A low fat diet might do some good. There is now in the US a clinical trial in progress which is trying to determine if 200 micrograms of Selenium and 400 units of Vitamin E will help prevent prostate cancer. Even if the results turn out to be positive, it won't necessarily mean that it will slow down a cancer already diagnosed. But it probably can't hurt to take Vitamin E and Selenium as long as you are careful not to go above the prescribed dose, particularly for Selenium. There is some evidence that a diet high in Calcium, such as the equivalent of four glasses of milk a day, may encourage the growth of prostate cancer. On the other hand, you don't want to cut out calcium from your diet altogether. There has been some recent evidence that being significantly overweight can encourage the growth of prostate cancer, so if that applies to you, losing some weight may help. It will certainly help your overall health in any case. There is some evidence that cooked tomato products or other foods containing lycopenes may slow down cancers.
jimhoney - 30 Jan 2004 23:09 GMT > Hello Everyone, > I'm new to this site and also new to the realization that I have early stage [quoted text clipped - 4 lines] > waiting? My doctor believes that 80% of treatment is carried out > uneccessarily, because of the uncertainty of the progression of the tumour. Yes, I certainly thought about that when I was diagnosed with PCa (age 52, Gleason 6, PSA 5.7). I can't remember exactly how I came up with the figure, but I think the chances that I could have gotten away with doing nothing were about 15%. I didn't like those odds. (I don't waste my money on the Lottery either.)
I'm not a doctor, so I can't argue with yours. But what springs to mind in response to his/her comment that 80% of treatment is carried out unnecessarily is: if so, then so what? We're not talking about a public health study or the NHS budget here, this is your future. What exactly are your own chances of getting away with doing nothing? (The answer is contained in the Partin Tables, http://urology.jhu.edu/Partin_tables/)
> Can a change of diet and lifestyle possibly change the situation? Or is this > just wishfull thinking? So far as I know, there is no scientific evidence that diet and lifestyle has any effect on prostate cancer after it is present. As for non-scientific evidence, you will want to see the postings pertaining to Martin Howard in the archives of this newsgroup.
> Thank you in advance, for any advice that you might have. > Keith, aged61, U.K. Make an informed decision, and then don't look back.
jimhoney standard RRP, cured, no significant aftereffects
c palmer - 30 Jan 2004 23:42 GMT hi keith - you've gotten good advice here, but in answer to your question about change in diet or lifestyle, we just lost martin howard in your neck of the neighborhood.
he tried that different route and in november was his last post and he felt that he was doing the right thing with his type of treatments and what he was taking.
he said that he wasn't in any pain as compared to what it was in the past, but he passed away in december.
his psa was in the 300's at the time.
bottom line - the lower the number, the more options you have. right now, you have a lot of options on the table and you need to research as to which one is the best for you and what you most comfortable with.
the prostate cancer is not going to go away and you are right, that would be wishing thinking.
hope this helps.
~ curtis
knowledge is power - growing old is mandatory - growing wise is optional
Wakeley Purple - 31 Jan 2004 03:30 GMT > Hello Everyone, > I'm new to this site and also new to the realization that I have early [quoted text clipped - 8 lines] > Thank you in advance, for any advice that you might have. > Keith, aged61, U.K. I'm not too much younger than you, and I recently chose Radical P-ectomy. I am very pleased with the results 2.5 weeks post-op. One of the reasons I decided to act was that I knew I was in good condition health-wise and physically and would probably recover well from the surgery. I plan on living many more years. I had no way to tell what kind of condition I might have been in the future if the PCa had become a bigger problem. Now I have a >80% chance of long-term success (read "cure").
It's a tough decision. You'll get conflicting information from well-meaning people and knowledgeable doctors. In the end you have to make the decision that makes the most sense to you. That can range from my 74-yr old friend's RRP decision last year to Martin Howard's decision to fight it his own way to the end. Nobody can say either was "right", they just chose different paths. None of us are here forever.
Welcome to the club that nobody wants to join.
 Signature Wake
Age 58 PSA 3.8 Biopsy positive 5% in 1 of 10 cores Gleason 3+3 T1c RRP 1/12/04 Pathology agrees with biopsy Negative margins
Alan Meyer - 31 Jan 2004 05:55 GMT ...
> My doctor believes that 80% of treatment is carried out > uneccessarily, because of the uncertainty of the progression of the tumour. ...
Keith,
I've seen these kinds of statements before, but I have trouble believing that they're useful for a 61 year old man.
It has been observed that many older men with prostate cancer die of other causes. If such men never developed serious symptoms, treating them for PCa would have put them through unnecessary trouble.
But these observations can be very misleading. The great majority of men who develop PCa are in their 70's or 80's. Perhaps 80 or 90% of them will die of other causes. They die of other causes because, first, they are already near the end of their natural lifespan and, second, the cancers they have are slow growing, which is why they didn't show up until the men were in their 70's or 80's.
Ask your doctor if 80% of men diagnosed at age 61 will die of other causes if they get no treatment. At age 61, you have a longer time left, and probably a faster growing cancer, than men diagnosed at age 71 or 81.
I would seek treatment if I were you (in fact, I am like you and have sought treatment.)
> Can a change of diet and lifestyle possibly change the situation? Or is this > just wishfull thinking? There is speculation about this but I am not aware of hard data that proves that a man can fight cancer with diet and lifestyle change.
I have always eaten a fairly well balanced diet and gotten lots of exercise, but I was diagnosed with cancer at age 57. Another poster on this newsgroup was running 10 mile races at age 58 when he got diagnosed with cancer. Another poster was an avid bicyclist.
For that matter, who could possibly be in better physical shape than Lance Armstrong - who almost died of testicular cancer?
So I wouldn't put too much faith in diet and lifestyle as a way to stop cancer. It may improve your odds. It may help you deal with treatment and recovery. It may even prolong your life without treatment. But I can't see it as a substitute for treatment.
Alan
PAUL KRAUSE - 31 Jan 2004 13:20 GMT in my case, i had my prostate removed. the cancer was 20% tumor on the left side. the reason i made the decision, i didn't want to wonder every minute "is the cancer still there, after the other procedures offered. its a hard decision and i wish you good luck.
Tom Cular - 31 Jan 2004 15:31 GMT Keith,
I'll add my opinion to those that you've already read. A vast amount of information is available to help you make an informed decision, sometimes so much information that it's confusing, however,at 61 watchful waiting should not even be mentioned unless you have other potentially life threatening illnesses. I'm 62, very active and otherwise in good health, I was dx'd in Nov.03 with T2C, Gleason 6 (3+3) with PSA 5.6 . Started monthly Lupron in Dec. with permanent seeds planned for March 04. My decision for treatment was based upon published information, personal conversations with others who also have pca, lifestyle choices and professional opinions of my urologist ( a surgeon who felt I was a good candidate for seeds) and that of a radiology oncologist. You have a tough decision to make, fortunately pca is normally slow as cancers go and you need not make that decision overnight, but make an informed decision soon.
Tom
> in my case, i had my prostate removed. the cancer was 20% tumor on the > left side. the reason i made the decision, i didn't want to wonder every > minute "is the cancer still there, after the other procedures offered. > its a hard decision and i wish you good luck. Alan Meyer - 31 Jan 2004 17:03 GMT > Keith, > [quoted text clipped - 19 lines] > > minute "is the cancer still there, after the other procedures offered. > > its a hard decision and i wish you good luck. Keith and Tom,
If you decide on getting implanted seeds without supplemental external beam radiation, you might want to get a second opinion on your Gleason score. The reason is, the higher the Gleason score, I believe, the greater chance there is for tumor penetration of the prostate capsule. I can't remember exactly where I've seen this, but if I remember correctly, I have read reports on PubMed that say that people at "intermediate risk" (i.e., Gleason = 7 or 10 < PSA < 20) have a lower rate of cure with pure seeds (no external beam) than people who get both. The reason is that the external beam, given in lower doses than it would be given if used as a monotherapy, is aimed at the area immediately around the prostate and zaps any extensions of the cancer into the surrounding tissue.
I had Gleason 4+3 and a PSA of 8.7 and my doctor prescribed 43 Grays of external beam treatment of the area one centimeter around the prostate, in addition to brachytherapy in the prostate itself.
Gleason scores are _often_ underevaluated. My evaluation was 3+3. But the second opinions from increasingly expert pathologists were 3+4 and 4+3.
The external beam therapy is easy to take - but does take a long time. Mine was 23 treatments, one treatment of 200 centigrays per day, 5 days a week. Every morning I had to show up at the hospital and wait my turn in the waiting room. The treatment itself was just a few minutes - pull down your pants, lie on the table, get lined up, zap four times, pull up your pants, and on your way.
Alan
olfart - 31 Jan 2004 17:30 GMT > > Keith, > > [quoted text clipped - 56 lines] > > Alan I'm scheduled for the external beam IMRT in march for the same reasons you mentioned - makes sense to me to try to "clean up" the area around the prostate before doing the seed implant. As an aside, I'm pretty satisfied with mt Rad Onc who will actually do the radiation and the seed implant. He was originally an Orthopedic surgeon. He developed Lymphoma and evidently beat it. He went back to school and added Oncology and radiology to his skills as a surgeon and has quite a few years in the Oncology practice. I like the fact that he has "been there" so to speak.
olfart - 31 Jan 2004 17:33 GMT forgot my history-
Age - 67 8/12/02 - PSA 3.7 10/13/03 - PSA 4.69 11/11/03 - PSA 4.8 11/18/03 - Biopsy - 10 cores one core-25% of core-Gleason 4+4=8 all other cores benign tissue 12/10/03 - Consult - Oncologist 12/16/03 - Consult - Radiation Oncologist Treatment Plan - HT - started 12/17/03 - Eulixen & Lupron Radiation - IMRT to begin 3/14/04 - for 5 weeks Theraseed implant after Radiation completed
Alan Meyer - 31 Jan 2004 17:49 GMT > forgot my history- > [quoted text clipped - 11 lines] > Radiation - IMRT to begin 3/14/04 - for 5 weeks > Theraseed implant after Radiation completed I see that although your PSA was low and you only showed cancer in one core, but the Gleason was high and your doctor decided to be conservative.
That makes sense to me. IMRT just isn't that bad. The only effects I can attribute to external beam therapy were some sunburn like effects around the anus, some exacerbation of an existing hemorrhoid and, maybe, blood in the semen. I say "maybe" because I had also had a brachytherapy before that which could have been the cause.
Good luck with your treatment. Both radiation and surgery do some violence to the body, but my impression is that radiation does a whole lot less.
olfart - 31 Jan 2004 18:29 GMT > > forgot my history- > > [quoted text clipped - 26 lines] > some violence to the body, but my impression is that radiation > does a whole lot less. Brachy and then Radiation- That's where my Dr seems to disagree with what seems to be a common practice. His feeling is that the Radiation should come first followed by the seeds. He feels that after the seeds are inplace any external radiation might be in fact too much at once and *could* cause damage to surrounding organs(bladder, etc). Glad yours went so well
Alan Meyer - 31 Jan 2004 20:09 GMT > Brachy and then Radiation- > That's where my Dr seems to disagree with what seems to be a common [quoted text clipped - 3 lines] > organs(bladder, etc). > Glad yours went so well There seem to be different opinions.
My brachytherapy was high dose rate (HDR). With that version, they implant highly radioactive seeds for a very short period of time - a total of about 15 minutes - and then withdraw them. After that, I got EBRT for about 4 weeks. Then I got another HDR, then the final 4 EBRTs.
All of this is a black art. IIRC, Heather's Ron got an HDR, then another a week later, then EBRT. Some get 3 HDRs instead of two.
Your doctor's reasoning makes sense. The total dose is the same. The effect on the cancer is the same. But the stress on the healthy cells may be a bit less.
Then of course the opposite theory could also be argued - that the stress on the cancer cells will be a bit more if you give the seeds first and then the RT.
I'm still scratching my head about it all.
Alan
dale.j. - 31 Jan 2004 22:04 GMT
> All of this is a black art. > > Alan This is the best discription of radiation therapy that I've seen. You get five stars Alan.
Dale J.
 Signature Email: dalej2@mac..com
Tom Cular - 01 Feb 2004 00:03 GMT Alan,
What you and others are saying in regard to EBRT in conjunction with seeds seems to make sense to me.
My slides were dx'd by two additional pathologists at different facilities following the original, my youngest daughter is a second year resident and insisted upon plural opinions, it's like having a second mom scolding me, but I realize she's only doing it because she cares as I know the folks on this group do.
Tom
Tom
> > All of this is a black art. > > [quoted text clipped - 4 lines] > > Dale J. Heather - 01 Feb 2004 06:51 GMT > > Brachy and then Radiation- > > That's where my Dr seems to disagree with what seems to be a common [quoted text clipped - 14 lines] > All of this is a black art. IIRC, Heather's Ron got an HDR, then another > a week later, then EBRT. Some get 3 HDRs instead of two. Hi Guys.......
Not quite sure what you mean by a 'black art', but we think the two HDR treatments, followed by 25 EBRT, was an excellent treatment. I also asked the doctor to radiate the lower abdomen as a 'just in case'. Ron had very few side effects......some fatigue being the worst, I guess. But it was only for a few weeks.
His PSA in Feb. of 03 was 11.47......it dropped in June to 10.08. (Assuming that he had the Feb. one too soon after the DRE).
Gleason was 4 + 3, Pca in 80% of left lobe. Bone & CT scans showed no abnormalities. His first PSA on Nov. 1 dropped to 3.5......4 weeks after he finished the EBRT & 3 months after the 2nd HDR treatment. Next week he has his next one......but won't get the results for a few days. Due to distance, we get the test done while he meets with the 'team'.......as he is part of a study, like Alan. We refuse to worry about it because that just plain won't change anything. (G)
So we will let you know how he does, but we have the utmost confidence in Sunnybrook's Cancer Centre. And besides, we now have a trip to the UK to think about.......not what happened in the past. It seems like a distant bad dream now.
For 71.5 years old, he is in excellent shape.......and feeling just fine. The only lasting effect that he has (and we were warned about) is that his bladder is not as 'elastic' as it was.......so he doesn't try to hold it for an hour. But he rarely gets up at night to go.
Night......Heather (and Ron)
TampaSailor - 05 Feb 2004 18:18 GMT Alan, What have you lost from the treatment? I will make a decision on what to do in the next 3 weeks.
rgds, ly
>> I'll add my opinion to those that you've already read. A vast amount of >> information is available to help you make an informed decision, sometimes [quoted text clipped - 54 lines] > > Alan Alan Meyer - 17 Feb 2004 03:10 GMT ly,
Sorry I didn't respond to this. I just now spotted this message.
My treatment ended January 22. The treatment consisted of:
7.5 mg Lupron 22.5 mg Lupron one month later HDR brachytherapy - 10.5 Grays about 3 weeks later External Beam (3D conformal) radiation - 46 Grays 2nd HDR brachytherapy - 10.5 Grays
So far, the after effects are as follows:
Painfull hemorrhoid. Lasted about a week after treatment.
Difficulty urinating - still present but not as bad. I'm down to one Flowmax every two days now.
Radiation burns around the anus - irritated when I sat down. A doughnut cushion was of great help with that. This is mostly cleared up 3 weeks after the end.
Some loss of pubic hair (hadn't known that would happen). It may grow back, don't know yet.
Major loss of libido due to the Lupron. I'm hoping that will come back in another month or so.
Various sexual side effects - can still get an erection, but not as easily - maybe that will come back after the Lupron wears off. No semen appears with orgasm. Orgasm is much less of a climax than before. Also harder to achieve, but I expect to need some more time on all that. Some blood appeared instead of ejaculate - but that should wear off soon.
Effects I did NOT have:
Didn't miss any work except for actual periods of treatment.
Didn't have a catheter or Foley bag except during the brachytherapy procedures themselves.
Very little pain.
No incontinence.
Hope this helps.
Alan
> Alan, What have you lost from the treatment? > I will make a decision on what to do in the next 3 weeks. [quoted text clipped - 59 lines] > > > > Alan
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