Medical Forum / Diseases and Disorders / Prostate Cancer / December 2005
Questions from a Newbie
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Allan - 27 Nov 2005 03:58 GMT Good Evening to All! I¹ve been reading your posts for a week or so now and am impressed with how the group seems to be so supportive of one another. I¹m hopeful you can find room for a newbie with questions.
I¹m a 53 year old white male in otherwise good health.
Just two months ago my family Dr. suggested we do a PSA while checking my cholesterol level. When he got the results back, he was more concerned about my PSA level of 28 than my cholesterol. He very quickly got me into a urologist for a consultation. Ten days later the urologist did a biopsy and then a week after that gave me the bad news that I had Prostate Cancer.
The urologist has been very good about explaining my options and emphasized when he gave me the news that it was NOT a death sentence. He wanted to find out if it had spread beyond the prostate so ordered a CAT Scan and a Bone Scan. I got those results back about ten days ago. Thankfully, it has not spread and so the urologist has recommended treatment with Radiation.
I¹m not consciously worried about dying though that may be a concern somewhere in the back of my mind. Based on where I find myself looking on the internet, I seem to be more concerned about the quality of life now than the length of it.
I¹m blessed with a wonderful wife of 25 years who is very supportive and much more optimistic than I. Our relationship is much more than sex evidenced by the fact we¹ve gone weeks without being intimate simply because we¹re both very busy and often fall into bed at night totally exhausted with little more energy than to say ³maybe in the morning².
My urologist has recommended and started me on Casodex and will begin Eligard this week. At some point in the next few weeks, I will have an appointment with a Radiologist to prepare for and begin Radiation Therapy. My urologist has also given me lots of reading material. And I guess that, combined with what he has told me about the side affects of different treatments and medications, is why I¹m here.
I don¹t see a lot of discussion here about the concerns I have, so maybe they don¹t need to be a concern. But if I could lay them out on the table, maybe someone could respond and let me know what kind of experience the group has had.
Incontinence is a real concern. I¹m a professional who works in an office setting with a number of other people. How should I prepare for it?
Should I tell my co-workers? I don¹t want people treating me different because of this. Is that something I should worry about?
My wife is great! She assures me that if I become impotent as a result of the medication or the radiation therapy that it wont affect our relationship. But I guess I have some concerns there, not in our relationship surviving, but in the quality of our physical relationship. Though we have gone weeks before, we always knew we would eventually get our chance.
How has radiation therapy affected others? I¹ve read some comments on dry orgasms, but aside from the obvious, am not sure what that means.
Thanks in advance for any an all help members of the group can provide.
Allan
I. P. Freely - 27 Nov 2005 06:23 GMT > the urologist has recommended treatment with Radiation. And another might have recommended surgery, or a different radiation protocol. The REAL question is what your OWN weeks of intensive research in PC books and REPUTABLE PC websites and your consultations with both surgical and radiation oncologists has led you to. Unless your urologist is significantly better than average, knows you intimately, and HAPPENS to be biased towards whatever treatment is REALLY your best solution, s/he is not the person best qualified to decide your treatment. That person would be YOU, with your wife's help.
Every PC treatment -- there are up to half a dozen different ones -- has its own suite of immediate and/or long term benefits and side effects, every PC case has its own set of parameters, every patient has his own set of priorities, and every physician has her own treatment biases and presumptions about their patients. There are two primary ways to resolve the scores of dilemmas this complexity presents: put your life (both its span and its quality) in the hands of a stranger by taking her word for everything, or do a TON of research and manage your future -- which starts tomorrow -- yourself with reality checks from your medical staff.
You MUST at the very least study one or two of the PC books we talk about all the time [e.g., Walsh, Lange (Dummies), Scardino, Strum]. You must also study a couple of the top websites, such as those of the ACS, NIH, and especially the PCRI (Google will take you right to them). After you've done a few hundred hours of research, you'll be ready to start asking your urologists the right questions and telling them the right things about you and your priorities so all of you can start thinking about the right treatment for you and your cancer.
Start reading. Keep asking us questions. Start asking your doctors (at the very least surgical and radiological oncologists), your SELF, and your wife questions. You shouldn't even consider favoring one treatment over another until you've read a couple of PC books; I'd suggest maybe Walsh and Lange as your first choices, with Strum (from the PCRI) as a more technical mind-blower for those who crave details, but there are 8-10 very good ones. Many of us read 'em all.
I suspect that the only way to avoid years of second guessing is to keep doing research until you KNOW in your heart that you've made THE right highly informed decision FOR YOU. Then you can then act and get on with the rest of your life secure in the knowledge that you've taken charge and done your best. That will be extremely comforting if and when your cancer returns some year way down the road, but maybe even more important it will comfort you as you deal with side effects you WILL face -- some immediately, some later.
I..P. Freely
Steve Kramer - 27 Nov 2005 11:48 GMT First of all, Allan, welcome to the club for which no one ever applies. You are correct in your assessment that there are some pretty great guys here, not to mention a couple of guys' gals, who provide a tremendously wide array of anecdotal and sometimes nearly professional opinions and data. We have no doctors here, at least none dedicated to the group, per se; just a couple who are also afflicted. Now as to your post....
> I¹m a 53 year old white male in otherwise good health. One of the more important data elements in making a treatment decision. At 46, assuming there was no spread outside the prostate, my choices were limited to surgery. At 75, surgery is usually out of the question. At 53, generally, people lean towards surgery, but there are some who opt for radiation and are very happy they did.
> my PSA level of 28 > find out if it had spread beyond the prostate so ordered a CAT Scan and a > Bone Scan. I got those results back about ten days ago. Thankfully, it > has > not spread and so the urologist has recommended treatment with Radiation. Two more relevant criteria in making a decision. At 28 (that's pretty high, but not devastating), your PSA might (and I say "might") cause one to lean away from surgery only because it, combined with a high Gleason, might indicate a progressive and/or advanced cancer and surgery might (that word again) not get it all. But, to be honest, you need to consider the Gleason and Stage scores and you have not listed them here. If your Gleason total is a 6, you might make a different decision than if it is a 7. Please let us know.
I appreciate your doctor's recommendation. But, there is no substitute for personal knowledge and active participation in this battle. Patients come and go for doctors, especially cancer patients that are often passed onto radiologists, oncologists, etc. But, there is only one of you and there are a few option with several suboptions for your to consider. It is difficult for any urologist to keep up with it and impossible for them to recommend a perfect fit for you. So, take the time necessary to research the options. Read books by Patrick Walsh and Steven Strumm. Ask questions here. Search the archives on the word "fired" and read how some people in this NG met with less than satisfactory results when their doctors missed something or recommended the right treatment for the doctor, but the wrong treatment for the man, or his value system. MAKE IT YOUR DECISION and then don't look back with remorse that you didn't pick another.
> I¹m not consciously worried about dying though that may be a concern > somewhere in the back of my mind. Based on where I find myself looking on > the internet, I seem to be more concerned about the quality of life now > than > the length of it. Quality of life is tops on almost every man's list. Personally, having watched my father die from this bastard, I decided long ago I would never go through what he did just to live. I am pleasantly surprised, however, at the advances that have been made in treatment, both curative and pallative, since my father died. So, I will probably fight it through to the end, but only if I have some 'life' left.
> I¹m blessed with a wonderful wife of 25 years who is very supportive and > much more optimistic than I. Our relationship is much more than sex [quoted text clipped - 10 lines] > our > chance. Congratulations! I can remember as a kid when 25 years was a minor milestone, but even with people living decades longer, it seems now to be a daunting challenge. There is no substitute for a supportive wife. Helping to figure our treatment options is her first charge. Taking care of you when you get home is her next and making sure you don't get fat and lazy closely follows. There will be some sexual interruption, but a loving wife can find ways to make you happy; and visa versa.
> My urologist has recommended and started me on Casodex and will begin > Eligard this week. At some point in the next few weeks, I will have an [quoted text clipped - 3 lines] > combined with what he has told me about the side affects of different > treatments and medications, is why I¹m here. Casodex will not hurt, regardless of which treatment you choose. But, I caution again, do some research before exposing yourself to radiation. I had surgery, then radiation, and now hormone treatment. They are all easy to get through, but they all have serious side effects and some that last the rest of your life. Please don't choose one or another based on a doctor's paradigm. Even if you select radiation later, you'll be happy you made the decision.
> I don¹t see a lot of discussion here about the concerns I have, so maybe > they don¹t need to be a concern. But if I could lay them out on the > table, > maybe someone could respond and let me know what kind of experience the > group has had. Our favorite role.......
> Incontinence is a real concern. I¹m a professional who works in an office > setting with a number of other people. How should I prepare for it? Incontinence is immediate with surgery and almost always disappears or slows to a trickle within a year. While recuperating at home, you'll wear a diaper. Soon it will be a J-pad. You can go to work with a J-pad and no one will ever notice. But, remember, that is surgery. As I understand it, radiation causes incontinence down the line, not always immediately. So, hold on for a radiation patient to tell you about that.
> Should I tell my co-workers? I don¹t want people treating me different > because of this. Is that something I should worry about? I had surgery and was off the job for six weeks. I had to tell them. Now, people in my business (there are almost 1500 in my business) that get prostate cancer come to me for advice. There is no down side. No one treats me special, but I help people; at least one annually, I guess. So, it's up to you.
> How has radiation therapy affected others? I¹ve read some comments on dry > orgasms, but aside from the obvious, am not sure what that means. Surgery will immediately eliminate all the fluids that come with ejaculation. Radiation almost always causes the same effect. But, there is nothing wrong with a dry orgasm. Your wife might like it. At first, however, there is some urine instead of semen, but it is clean and many women don't mind (refer to "Loving Wife" paragraph).
Good luck. We're all counting on you.
Allan - 28 Nov 2005 03:52 GMT Thanks Steve,
My Gleasons Score was 6 when the biopsy was done.
Quality of life... My father also had PC when he was in his 70's. His Dr. treated it the same way my urologist is recommending for me. My father was cured and did not die from the PC but from a stroke several years after. I wasn't near my father when he went through it, but my brother who lived next door to him at the time tells me that he was very tired during the treatments. He wasn't sure if it was because of the treatments or from the long drive (3 hours each day) to receive the treatment.
I appreciate the other comments, and I'll search out the reading material both you and I.P. have recommended.
I have to say that so far I'm very comfortable with the treatment I've received from my urologist. This seems to be a major portion of his practice. Actually I'm glad he didn't want to immediately start cutting. Based on what I've read so far, I'm OK with where this is going. I think I've got plenty of time before the radiation therapy starts to do more research. And the urologist is the Dr. who will supervise the treatment regimen, referring me to a radiologist who also specializes in this kind of treatment.
So thanks for the help, I'll keep reading, here and in books and on websites and keep the group informed as to my progress.
Allan
On 11/27/05 3:48 AM, in article 72hif.142611$tD4.136281@tornado.ohiordc.rr.com, "Steve Kramer" <skramer@cinci.rr.com> wrote:
> First of all, Allan, welcome to the club for which no one ever applies. You > are correct in your assessment that there are some pretty great guys here, [quoted text clipped - 129 lines] > > Good luck. We're all counting on you. Steve Kramer - 28 Nov 2005 10:55 GMT > My Gleasons Score was 6 when the biopsy was done. That's good. I was expecting at least a 7. All the more reason to reconsider surgery.
> Quality of life... My father also had PC when he was in his 70's. His Dr. > treated it the same way my urologist is recommending for me. My father [quoted text clipped - 7 lines] > the > long drive (3 hours each day) to receive the treatment. Contrary to popular opinion, recent studies seem to indicate that prostate cancer in fathers (except when the cancer occurs in his forties), does not make the son more susceptible to prostate cancer. More pertinent, your cancer is not your fathers. About 20% of all men have prostate cancer by their 70s. It goes up from there with age. Fortunately for them, prostate cancer grows very slowly in older patients. Prostate cancer is a slow-growth cancer in most cases regardless of age, but it grows much fast in a 53-year-old. I suspect you do not know his PSA, Gleason or Stage, but it matters not, because you cannot make a decision based on his success.
However, radiation will cause fatigue. I slept one extra hour every night and my wife told me I still was fatigued. I didn't realize it at the time, but later I did feel more energetic. Urinary track and colon problems can be anticipated as well, but also can be prepared for.
> I have to say that so far I'm very comfortable with the treatment I've > received from my urologist. This seems to be a major portion of his [quoted text clipped - 5 lines] > of > treatment. And THAT, is exactly where you want to be at the beginning of your battle. Knowledgeable and comfortable with your chosen treatment. I salute you.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05 PSA .07 .05 .06 .05 .08 Non Illegitimi Carborundum
TW - 28 Nov 2005 14:11 GMT Allan, I'm a newbie plus three months. I was dx'd in Sept. with very early PCa and had open RP in Oct. My initial thoughts and reactions were the same as yours. My first thought was "I could be impotent", second was "I might wear diapers the rest of my life" and a very distant third was "This could kill me". As with a number of initial reactions to PCa, this is a.s backwards. Treatment priorities are always cure, urinary control and erectile function. It took me awhile to understand but I got it.
With radiation vs surgery I thought "Do radiation first and if it doesn't work have surgery later". Again, IMHO backwards. Having surgery first gives me more options later if needed (knock on wood). Open RP was the least attractive option to me initially but after doing A LOT of reading in a short period and asking for help here, I decided it was right for me. The thought of having cancer in my body was hard to handle. I wanted it out and soon.
I'm a fit 57 and am almost 8 weeks post op. I had 95% urinary control when the cath came out at 2 weeks and stopped using small pads 2 weeks after that. Stress incontinence was a biggy for me because I play a brass instrument for a living it could have ended my career. I went back to work at 6 weeks with zero discomfort, zero leakage and zero loss of strength. Erectile function is coming back slowly but surely. The wiring is intact but it takes a while for the signal to come through. It's not the big deal I feared. Being cancer free puts a lot of things in perspective. Hope this helps. Take care and good luck.
Tom
I. P. Freely - 28 Nov 2005 17:23 GMT > Treatment priorities are always cure, urinary > control and erectile function. My uro onc surgeon was a little surprised at that order, adding that many pts place potence at the top of their list. We've all heard women say we think with the wrong head, and that proves it for some cases.
I.P.
Allan - 07 Dec 2005 04:35 GMT On 11/28/05 9:23 AM, in article U1Hif.10629$Fq3.9862@fe02.lga, "I. P. Freely" <fuhgheddaboutit@noway.nohow> wrote:
>> Treatment priorities are always cure, urinary >> control and erectile function. [quoted text clipped - 4 lines] > > I.P. I personally wouldn't suggest that erectile function should be to much of a concern, but for those with a healthy sex life or for those with a relationship where sex is a VERY big part, it can't help but be something that crosses a mans mind. After all if your partner expects it, is she going to stick by you when you can't get it up?
I'm not there yet, so haven't had to deal with it. I'm confident though that my wife places a higher value on my life than just that part of our relationship.
Allan
Ron B - 07 Dec 2005 16:01 GMT Allan, mll6388@cox.net wrote about the importance of erectile function:
"but for those with a healthy sex life or for those with a relationship where sex is a VERY big part, it can't help but be something that crosses a mans mind. After all if your partner expects it, is she going to stick by you when you can't get it up?"
Sounds correct.
I would think that this is at the crux of a lot of fears.
Ron B.
Chicago
I. P. Freely - 07 Dec 2005 18:11 GMT > Allan asked >> is she going [quoted text clipped - 3 lines] > > I would think that this is at the crux of a lot of fears. D'ya think a lot of relationships are based just, or primarily, on sex? Isn't a relationship that shallow DOOMED to fail once either partner loses ability or drive, when any MEANINGFUL difference outweighs the sexual attraction, and/or when a better lover strolls by? Is that even a RELATIONship, or is it just a PASSING ship? Isn't finding out NOW how shallow the relationship is an advantage over investing more years in it when there's a REAL relationship out there somewhere? Isn't sex merely PART of a great relationship, rather than the whole PARCEL?
I.P.
Justin Case - 07 Dec 2005 22:24 GMT : ...I'm not there yet, so haven't had to deal with it. I'm confident though
: that my wife places a higher value on my life than just that part of our : relationship. : : Allan Same here, Allan. My wife and I haven't had a sexual relationship now in more years than I care to mention. RPP surgery to remove a diseased prostate put an end to that. I used to think, when I was more in control of the situation, that I could initiate the act at my pleasure, now that I can't I miss it greatly. My wife was present with my oncologist when he explained the seriousness of the situation and asked us both to consider our answer carefully. We didn't go into it blind; the prostate was definitely cancerous and it was a joint decision. Our marriage hasn't suffered in the least. It's a part of marriage that is denied us now but love is based on a whole lot more than that, and after all, we had about 50 years together to get to know one another pretty well.
Ken Bland
Brian - 07 Dec 2005 22:46 GMT >>> Treatment priorities are always cure, urinary >>> control and erectile function. [quoted text clipped - 10 lines] > that crosses a mans mind. After all if your partner expects it, is she > going to stick by you when you can't get it up? That depends on whether you are (to her) a sex-toy with a paycheck, or a love-of-her-life. In this regard, losing your ability to achieve an erection is possibly a great blessing in disguise. You wind up separating a HEALTHY RELATIONSHIP from a MUTUAL SATISFACTION OF PHYSICAL INTEREST, which are worlds apart.
Steve U - 27 Nov 2005 13:08 GMT Allan, I'm sorry for your trouble. I was 50 when I got the bad news. I picked surgery as best for me, so my experience is not with radiation, but there is overlap. Be sure to check out all your options. There is no rush.
I went back to work day 6 with a leg bag. After the catheter was removed at day 7, I was totally incontinent. It is more manageable than you might think. There are diapers and pads that do collect ALL the urine, and they don't smell if you change them often enough. They fit under clothes very well, and I'm fairly thin. I was dry by 3 months.
I told people at work. They could all tell I was preoccupied anyway, and once they knew the reason, things were more "normal". They were very understanding, and all wanted to help me out. Let people help you!
My already wonderful 27 year relationship with my wife got even better. Nobody wants adversity, but facing it together pulls people together in ways that the good times can't. The erection drugs are wonderful. Don't be afraid to try the shots. I've had a huge amount of fun with them.
I don't miss ejaculation at all. Pre-op, I was most worried about the impotence side effects of surgery. My sex life after surgery has been excellent. People on hormones can tell you better about the libido effects.
The emotional suffering was 99% of the challenge for me, not the physical stuff. I found that seeing a psychiatrist Good luck. Steve U
Allan - 28 Nov 2005 04:14 GMT Steve,
I appreciate your candor. These are difficult questions to ask, and it helps knowing that there are others out there so willing to talk about their experience.
I guess I'm preparing myself psychologically for this as I've already been looking at incontinence products just so I'll know what I might use if needed.
I'll keep the group posted on the progress. And I will tell my staff so they won't have to wonder what's wrong.
Thanks, Allan
On 11/27/05 5:08 AM, in article 1133096920.152761.217410@z14g2000cwz.googlegroups.com, "Steve U" <smu53@aol.com> wrote:
> Allan, > I'm sorry for your trouble. I was 50 when I got the bad news. I picked [quoted text clipped - 26 lines] > Good luck. > Steve U I. P. Freely - 28 Nov 2005 07:31 GMT > I will tell my staff so > they won't have to wonder what's wrong. My wife found that many of her coworkers ask her about PC (not about ME, per se . . . about PC as it applies to them) knowing that she has followed my case very closely.
I.P.
Steve U - 27 Nov 2005 13:10 GMT Last line was supposed to say "seeing a psychiatrist was very helpful". Steve U
ron - 27 Nov 2005 16:49 GMT Allan wrote...snip...
> When he got the results back, he was more concerned about > my PSA level of 28 than my cholesterol. He very quickly got me into a [quoted text clipped - 6 lines] > Bone Scan. I got those results back about ten days ago. Thankfully, it has > not spread and so the urologist has recommended treatment with Radiation. Hi Allan...As Steve K. has already noted, a PSA of 28 is rather high. While it may be caused by an infection, it may also be a signal of systemic disease. The scans that your doctor ran only detect systemic PCa when it is quite advanced. My point is that you might want to take further steps to try and determine whether or not your disease is systemic, before you try invasive therapies that can only cure local disease. Other staging information such as DRE results, pattern of PSA progression, Gleason score, number of needles positive for PCa and maximum percentage of PCa in any needle in conjunction with the Partin Table (and other nomographs) might help shed light on this question. Measuring your PAP (prostatic acid phosphatase) can also provide information about the likelihood of systemic disease.
Radiation therapy or surgery can be a curative treatment for local disease. They can also help slow the growth of systemic disease (tumor debulking). For a man as young as you RT is practiced somewhat less frequently than surgery for the following reasons: 1) If there is any indication of lower urinary tract issues (urination problems), RT will exacerbate them. 2) Secondary cancers typically occur in the 10-20 year timeframe post-RT. These cancers have been found to occur at the 3-5% level at 10 years post-RT, with the number expected to increase further with time. For young men this is an issue that needs to be considered.
Under the old rubric of "two heads are better than one", it may well be to your advantage to get additional opinions from qualified medical personnel on your situation. In particular discussing this question of local vs. systemic disease, and then treatment options, with an oncologist who specializes in PCa may prove helpful...Best wishes and good health, Ron
Steve Kramer - 27 Nov 2005 17:12 GMT Every once in a while, I read a post where there is no excess, no fat, just great information. This is a keeper.
> Allan wrote...snip... >> When he got the results back, he was more concerned about [quoted text clipped - 41 lines] > oncologist who specializes in PCa may prove helpful...Best wishes and > good health, Ron Steve Jordan - 27 Nov 2005 17:17 GMT On November 27, Ron wrote,in pertinent part:
Regarding radiation therapy:
> 2) Secondary cancers typically occur in the 10-20 year timeframe > post-RT. These cancers have been found to occur at the 3-5% level at > 10 years post-RT, with the number expected to increase further with > time. For young men this is an issue that needs to be considered. If correct, that is certainly alarming. Would Ron please cite his source?
Thanks.
Steve J
ron - 27 Nov 2005 17:57 GMT Steve...some relevant references include:
Gastroenterology. 2005 Apr;128(4):819-24; Increased risk of rectal cancer after prostate radiation: A population-based study; Baxter NN, Tepper JE, Durham SB, Rothenberger DA, Virnig BA.
Int J Radiat Oncol Biol Phys. 2003 May 1;56(1):83-8; Radiation-induced second cancers: the impact of 3D-CRT and IMRT; Hall EJ, Wuu CS.
Cancer, Volume 88, Issue 2 , Pages 398 - 406; Second malignancies in prostate carcinoma patients after radiotherapy compared with surgery; David J. Brenner, D.Sc. 1 *, Rochelle E. Curtis, M.A. 2, Eric J. Hall, D.Sc. 1, Elaine Ron, Ph.D. 2
...Ron
Steve Jordan - 27 Nov 2005 18:11 GMT Ron replied to my request for citations:
> Steve...some relevant references include: > [quoted text clipped - 9 lines] > David J. Brenner, D.Sc. 1 *, Rochelle E. Curtis, M.A. 2, Eric J. Hall, > D.Sc. 1, Elaine Ron, Ph.D. 2 Thanks. I'll check them out. I'm wondering why Strum & Pogliano don't mention such an important consideration in their book.
Regards,
Steve J
Allan - 28 Nov 2005 05:13 GMT On 11/27/05 8:49 AM, in article 1133110145.251225.7750@z14g2000cwz.googlegroups.com, "ron" <oitbso@yahoo.com> wrote:
> Hi Allan...As Steve K. has already noted, a PSA of 28 is rather high. > While it may be caused by an infection, it may also be a signal of [quoted text clipped - 3 lines] > systemic, before you try invasive therapies that can only cure local > disease. Other staging information such as DRE results, DRE results found no abnormalities.
>pattern of PSA progression, Gleason score, Gleason score was 6
>number of needles positive for PCa and Positive needles for PCa was 8 for 8
> maximum percentage of PCa in any needle in conjunction with the Partin > Table (and other nomographs) might help shed light on this question. [quoted text clipped - 7 lines] > 1) If there is any indication of lower urinary tract issues (urination > problems), RT will exacerbate them. I'm not aware of any issues. I've always frequented the bathroom when opportunity presents but can wait if needed. I also drink a lot of liquids, coffee, water and have always attributed the need to urinate to that.
> 2) Secondary cancers typically occur in the 10-20 year timeframe > post-RT. These cancers have been found to occur at the 3-5% level at [quoted text clipped - 7 lines] > oncologist who specializes in PCa may prove helpful...Best wishes and > good health, Ron Good advice, I'll look for an oncologist for another opinion.
Thanks, Allan
Alan Meyer - 27 Nov 2005 19:05 GMT You've already gotten a lot of good advice. I'll weigh in with a few more comments.
On the issue of radiation vs. surgery, there is good evidence that both approaches are effective. Each has its advocates and its particular set of advantages and disadvantages. Radiation generally treats a larger area than surgery, and your doctors may have recommended it on the theory that, with a PSA of 28, it is very likely that you have cancer at, and possibly beyond, the margins of the prostate. Surgically removing the prostate might be less likely to treat all of the cancer than radiation.
However, as others said, it is a good idea to read as much as you can and, possibly, get a second opinion from a surgeon, if you haven't already seen one.
On the question of metastasis, as others have said, the bone and cat scans don't prove there is no metastasis, only that there is no _detectable_ metastasis. There might be colonies of prostate tumor cells that are too small to show up on the scans established elsewhere in the body. However, it seems to me that, with no evidence of metastasis, and especially at your relatively young age, it is worth taking the chance and trying curative treatment, i.e., radiation or surgery. If the treatment fails and your PSA continues to rise after treatment, it might still have given you some benefit in reducing the total amount of tumor in the body.
Now as to specific questions you raised:
1. Incontinence.
This is rare with radiation. Although I don't remember where I read it, the numbers I recall are 1-3% of radiation patients experience incontinence. The opposite problem, inability to urinate, is much more common. Usually it is treatable with drugs and, usually, it clears up by itself a few months after radiation ends.
2. Impotence.
The numbers I've seen on this are 30-50% of radiation patients experience this. As with surgery, older patients are more likely to have the problem than younger ones. Potency may decline during a period of one to two years after radiation rather than falling all at once.
Impotence is a relative problem. Some men are completely impotent. Some are partially impotent - perhaps able to achieve erections but not as hard, and not sustained as long, as before treatment. Men in the latter group can often benefit from Viagra or similar drugs.
Even complete impotence doesn't have to end one's sex life. Oral sex, manual sex, or any other form of sex not requiring actual penetration, is still possible. Orgasms are still possible even with a limp penis. Sex need not be any less satisfying for either partner. And for those who must have erections, injectable drugs typically work for everyone - even those who don't respond to any other physical or chemical stimulation.
3. Other issues.
Your doctors have acted very, very promptly. It's very possible that they are saving your life. I particularly like the fact that they got you scans and a biopsy in such short order (most of us had to wait much longer), and immediately started you on hormone therapy. The HT should halt the progression of your disease, and will reduce the size of the prostate, making it a better target for radiation.
You can expect that your sex drive will disappear sometime around 6-8 weeks after the HT injection. That's unfortunate, but if you try to engage in sex anyway, you may surprise yourself by finding that the old feelings come back once you get into it.
HT and radiation will both drain you of energy. To compensate I suggest getting plenty of rest, and plenty of exercise. Start now to build up your strength and keep it up.
Best of luck.
Alan
Allan - 28 Nov 2005 05:51 GMT Alan,
You get strait to the point, I appreciate that. It had not even been suggested that there might be cells outside the prostate even though the scans did not detect anything.
I guess I can see advantages to both approaches, but at this moment am not sure what's right for me. Not getting cut on definitely had it's pluses. And as I see it, it can be an option for later if the RT is not effective. Does that make any sense to anyone besides me?
It sounds as if most of the group has had surgery. I'm wondering if there are others who have had RT and what their results were. My father apparently responded very well to his RT some 15 years ago. I'm sure that in that time, the RT has been fine tuned wouldn't you?
On the issues of incontinence, impotence and other issues, you give me cause for optimism.
Thanks, Allan
On 11/27/05 11:05 AM, in article 5bOdnWg-obMDnhfenZ2dnUVZ_tmdnZ2d@comcast.com, "Alan Meyer" <ameyer2@yahoo.com> wrote:
> You've already gotten a lot of good advice. I'll weigh in > with a few more comments. [quoted text clipped - 80 lines] > > Alan Heather - 28 Nov 2005 06:37 GMT > Alan, > [quoted text clipped - 10 lines] > effective. > Does that make any sense to anyone besides me? No....surgery after radiation is extremely difficult to do. The reverse is not.
My husband had a newish procedure done here in Canada. It is called HDR brachytherapy, which is high dose radiation done by inserting 18 needles into the prostate and the radiation is only actually in the prostate for about 9 minutes. It worked well. However, a year later we found out that it had mestatasized obviously before treatment, and he is now on hormone therapy. A CT scan and a bone scan however showed no cancer in the prostate area.
As you are in the US, then this is rather expensive and you could see if there are any trials being done with it. I believe it is about $50,000 US.
Good luck....Heather PS...several have had radioactive seeding and Alan had the HDR treatment.
> It sounds as if most of the group has had surgery. I'm wondering if > there [quoted text clipped - 99 lines] >> >> Alan Alan Meyer - 28 Nov 2005 16:56 GMT > You get strait to the point, I appreciate that. It had not even been > suggested that there might be cells outside the prostate even though the > scans did not detect anything. With 8 out of 8 cores positive for cancer, I would guess that the odds are very high that the cancer has penetrated the prostate capsule wall.
Extending beyond the prostate capsule is not the same thing as "metastasis". In metastatic cancer, the tumor cells travel through the circulatory system and lodge elsewhere in the body, at bones, lungs, liver, brain, or wherever - usually but not always in bones first (which is why a bone scan is important.) Extensions beyond the prostate wall are typically in the first few millimeters, which is treatable by radiation. If the cancer goes further, into the seminal vesicles or lymph nodes, treatment becomes more difficult.
I suggest that you ask your doctor about all this and get his opinion on how far your cancer may extend and what that means for treatment.
> I guess I can see advantages to both approaches, but at this moment am not > sure what's right for me. Not getting cut on definitely had it's pluses. > And as I see it, it can be an option for later if the RT is not effective. > Does that make any sense to anyone besides me? As Heather said, surgery is not generally done after radiation. The reason is that the radiation damages tissue in such a way that if surgery is attempted on it, it almost always produces bad complications. However radiation is possible after surgery.
> It sounds as if most of the group has had surgery. I'm wondering if there > are others who have had RT and what their results were. My father > apparently responded very well to his RT some 15 years ago. I'm sure that > in that time, the RT has been fine tuned wouldn't you? Yes, RT has improved significantly since then. The biggest changes came from increasing dosages and from using newer techniques that are able to increase the dose delivered to the target area while delivering no more radiation to the healthy tissue around the target.
There have also been improvements in aiming technology - to more precisely locate the exact position of prostate and other internal organs.
I had a combination of external beam radiation plus high dose rate brachytherapy. Treatment ended for me in January of 2004. So far (knocking furiously on wood) I seem to be okay and my side effects have been small and manageable.
I would think that in your case, if you choose radiation, external beam by itself or in combination with brachytherapy, would be prescribed. In my case, the brachytherapy was the main treatment for the prostate itself, but external beam was used to treat the area one centimeter all around the prostate.
Good luck.
Alan
golfmansav@webtv.net - 28 Nov 2005 21:15 GMT hello i am a 57yr/o mw i have just had surgery 7 weeks ago my gleason score was 3+3 clinical was T1C and the 2 biopsy that came back were 15% my psawas 3.93 it had spked to 4.5 during my yearly physcial i elected to be ct beacuse i am in good health and no other problems my cancer as contained in gland and had not spread any where last wed i got my psa back from dr and it was 0 which is what i was looking for i have been married 35 yrs and my wife and i went thru ths together i figured if i get rid of cancer and live another 30ys would be great unless something out there has my number but prostate cancer won't i would like some one out here that had surgery and had a hard time with incontinent please e mail me i know i have only had cather out for almost 5 weeks but i still dont have any feeling when i need to go to bathroom thanks jimmy
I. P. Freely - 28 Nov 2005 23:50 GMT > i have only had cather out for almost 5 weeks > but i still dont have any feeling when i need to go to bathroom It's not clear to me what your problem is. Do you simply cut loose without knowing it until it's running down your leg? Do you feel the urge but have a hard time staying dry until you reach the bathroom and get pointed at the target? Are you simply free-running, as though there were no valves between bladder and outside world?
If any of the answers is "Yes", welcome to the world of early RP recovery. At just 5 weeks out nothing except full control should surprise us. I quit soaking my diapers daily many months post-op, and at a year still soak one occasionally. Some people are dry in just a few weeks, some never get dry; I'm in the middle and still improving at 13 months, and gather I'm not that far from average.
Can you deliberately shut off and resume the stream while peeing? Then your Kegel muscles are intact. I could start and stop my flow at will several times during one trip to the toilet beginning the day I took my catheter out, empty my bladder apparently completely, then dribble more while walking AWAY from the toilet than I did walking TO it with a full bladder. "Could", I said? Heck, I still do fairly often.
You're still in a very steep part of the healing curve. These guys who are dry by your stage are freaks of nature -- LUCKY freaks of nature whom most of us envy. Now THAT'S penis envy!
I.P.
golfmansav@webtv.net - 29 Nov 2005 00:59 GMT thanks ip hopefully all will work out i dont mind e mail or calls to discuss my problems with others like me i can also call thanks jimmy
judamd@aol.com - 29 Nov 2005 00:03 GMT Much of the time since surgery over two years ago I have no feeling of a full bladder when I know it's full (for instance, mornings after sleeping all night). Other times I get the urge to go (some bladder discomfort) only an hour or so after a previous emptying. The discomfort is also different than it used to be pre-op. Now it has a sharper edge to it whereas before it was more of an ache. So, who knows what nerves were damaged. I too (as does I.P.) leak more after emptying than before. I think the full bladder pushes down on the urethra squashing it closed.
No matter, you're only 7 weeks out and major leaking after such a short time is not at all uncommon.
By the way, have you ever heard of capitals and periods? Dave Perry
Steve Kramer - 29 Nov 2005 00:56 GMT Hi, Jimmy. Welcome to the club.
I was using a J-pad for six weeks after surgery. I finally dried up about six months later.
Some are continent right away; some are continent two years later. I recommend a little patience and kegels.
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05 PSA .07 .05 .06 .05 .08 Non Illegitimi Carborundum
> hello i am a 57yr/o mw i have just had surgery 7 weeks ago my gleason > score was 3+3 clinical was T1C and the 2 biopsy that came back were 15% [quoted text clipped - 9 lines] > but i still dont have any feeling when i need to go to bathroom > thanks jimmy golfmansav@webtv.net - 29 Nov 2005 01:31 GMT thanks steve im doing the kegels and i can stop in mid stream but like mywife told me i have no patince but will work on it feel free to e mail me jimmy
Steve Kramer - 29 Nov 2005 10:43 GMT If you can stop midstream, you're half way there!
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05 PSA .07 .05 .06 .05 .08 Non Illegitimi Carborundum
> thanks steve im doing the kegels and i can stop in mid stream but like > mywife told me i have no patince but will work on it feel free to e > mail me > jimmy Steve Kramer - 29 Nov 2005 00:44 GMT .
> And as I see it, it can be an option for later if the RT is not effective. > Does that make any sense to anyone besides me? It seems logical. However, it is not a practical option. The general order of things is surgery, radiation, hormone, chemo, death. Surgery and radiation can be curative. You can skip the surgery and go straight to radiation. But, after radiation, the mass that used to be a prostate is nothing that can be cut out or should be attempted. It has been tried, but not with much success.
> It sounds as if most of the group has had surgery. I'm wondering if there > are others who have had RT and what their results were. My father > apparently responded very well to his RT some 15 years ago. I'm sure that > in that time, the RT has been fine tuned wouldn't you? As I already related, age is a huge factor in making your decision. Very few 53-year or younger men choose radiation over surgery. Of the 500+ people visiting this NG since I've been here, 168 of them were 55-years or younger. Of those, 8 men tried radiation treatment or radiation with hormone treatment. I include their email address so you can contact them. I can provide for you also the 160 who chose surgery.
We here believe that this NG is not fully represented of all PCa patients. We know that there are many more younger members here than the national average would seem to indicate. We believe that is because there are more younger men using computers than older men. But, it doesn't make sense that only surgery patients are attracted to an NG.
kpearson@surewest.net Kurt Pearson Pearson, Kurt 46
dtaylor@dreamscape.com Doug Taylor Taylor, Doug 52
ford.lightning@verizon.net Ford Lightning Lee 52
quercus@sympatico.ca ric Jordan, Richard 52
alioop9@webtv.net alioop 9 53
dan@invalid.invalid dan 54
beverly.brown28@verizon.net Beverly Brown, Beverly for George 55
T-6@ex.mindspring.com carriertech Mills, Terry 55
Kurt last reported a PSA of 4.9 during February 2004. Doug had a 1.88 11/13/03. Lee had a 0.6 in May 2004 Ric had a 0.3 in January 2004 Alioop reporte bone mets in June 2004 Dan was undetectible this past July Beverly's husband is undetectible Terry was 0.63 during August 2004
 Signature PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05 PSA .07 .05 .06 .05 .08 Non Illegitimi Carborundum
m_spivack - 29 Nov 2005 21:32 GMT Allan Wow this post certainly got a lot of activity. My modality was Surgery (Open RP) with what I thusfar consider excellent result and hence my bias.
8 posisitive needles out of 8 with nothing felt on DRE seems to me to be either a very skilled URO, 8 lucky shots on lots of PC.
If you opt for Radiation be aware that it is difficult to near impossible to have salvage surgery. Salvage surgery has been described as trying to remove a tennis ball from concrete.
As has been recommended earlier Read study ask questions make your own decission, go for it and do not regret it.
You'll be a supportive poster in no time
Mike S <.1 for 15 months
Glassman - 29 Nov 2005 07:22 GMT > Good Evening to All! > [quoted text clipped - 3 lines] > > I¹m a 53 year old white male in otherwise good health. I don't have time to read all the responses you already have, so here's my answers. Go and get another opinion for treatment ASAP. Preferably with a really great surgeon. Radiation is OK but you need to examine all your options before you get "fried". If radiation doesn't fix you, than there's a pretty good chance you can never have the surgery afterwards. If you have the surgery, than you can add radiation if need be later for a cleanup. You're the same age as I was when I got the news, and I am now 3 years post surgery, and am doing pefectly fine in all departments. I have erections and sex, and now pee like a barnyard animal. Your wife is a good egg, and by all means use her strength as much as you can. As for your office workers and being covert. Listen up man........ YOU HAVE CANCER. Most of us aren't ashamed or embarrassed in the least about it. In fact we feel that's it's important to tell everyone we know, so they can get it diagnosed early, as you and I have, and get it beat. Good luck, I'm sure you'll be fine.
 Signature "I'm not pompous and agrogant, I'm SNARKY" JK Sinrod Sinrod Stained Glass Studios www.sinrodstudios.com Coney Island Memories www.sinrodstudios.com/coneymemories
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