Medical Forum / Diseases and Disorders / Prostate Cancer / May 2007
anyone in his position who has undergone radiation and their results long term after RPx
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orchids58 - 25 Apr 2007 19:32 GMT I am Charlotte wife of Isaac. Ike had the surgery 7/ 18/ 2002. He had the same outcome as some of you, but his PSA started rising about 9 months ago from 0.01 to .3 and is undergoing IMRT starting tomorrow. I need to know if anyone know anyone who is like this. He is in good shape, will have 37 sessions at 6600 each. He is 69, but seems much younger. His PSA was 10.9 when he finally went for surgery. His gleason was 4 + 3 = 7, T2a , every thing was clear. I need to know of anyone in his position who has undergone radiation and their results long term?
Sorry to bother you, but thanks in advance , Charlotte
Justin Case - 25 Apr 2007 23:28 GMT I have interspersed comments within your questions.
: I am Charlotte wife of Isaac. Ike had the surgery 7/ 18/ 2002. He : had the same outcome as some of you, but his PSA started rising about : 9 months ago from 0.01 to .3 and is undergoing IMRT starting : tomorrow. I need to know if anyone know anyone who is like this. Somewhat similar, Charlotte, and it's no bother, I assure you. That's what we're here for.
My PSA initially was higher than Isaac's (28.4) and surgery (RPP) was recommended. Following surgery my PSA dropped and then began to rise slowly, 0.2 to 0.4, whereupon Lupron-L was injected on two occasions. The hormone treatment was deemed unlikely to be successful and radiation was recommended, five times per week for seven weeks. (I do not recall the intensity but I believe the local radiation oncologist goes for 7600-7800.)
He
: is in good shape, will have 37 sessions at 6600 each. He is 69, but : seems much younger. His PSA was 10.9 when he finally went for : surgery. His gleason was 4 + 3 = 7, T2a , every thing was clear. I was 71 when my surgery was performed in 2001. I do not recall the specifics, but I believe it was Stage II or T2a. Gleason score was 3 + 4.
Radiation was not begun until about one year following surgery (after hormone therapy was tried and discontinued).
I
: need to know of anyone in his position who has undergone radiation : and their results long term? : : Sorry to bother you, but thanks in advance , : Charlotte Now, five years post-radiation my PSA is 0.04 and has never been higher, although my urologist isn't ready to declare me "cured" for another five years.
Radiation makes the patient very tired, lethargic, and there is always the possibility (probability?) that concomitant damage will be done to bowel and intestines. I had four colonoscopies and sigmoidoscopies with argon laser cauterization performed and there are still some residual problems (but I'm not ready to undergo that remedy again yet).
I'm now six years post-detection and surgery, five after radiation. My PSA has been reduced to a negligible level and has not risen. If you trust your doctor and radiation is recommended for your husband, and he's in relatively good health, considering his age, I doubt that he'll have any more problems than I did. And I hope not.
Ken Bland
Burney Huff - 26 Apr 2007 02:06 GMT Charlotte Adams is pretty urgently in need of some information and support. Unfortunately, she is unable to see the messages posted here. I suspect she has a problem in the configuration of her news client since she can post; but, not read new messages.
In the meantime, PER HER REQUEST, I'm asking all of you who may want to help Charlotte to respond to her via email at orchids58@yahoo.com.
Ken, I copied/pasted your response in an email to her. She'd probably appreciate a quick follow up from you. I'll continue to cut/paste other responses until we can help her figure out how to see what is posted here.
I encourage any of you who think you can help to respond to Charlotte. She feels pretty much "out in the cold" and "all alone" right now. I understand that because that's where I unintentionally put my wife when I was in the position of Charlotte's husband. I imagine at least some of you have similar experiences.
Thanks Burney
>I have interspersed comments within your questions. > [quoted text clipped - 48 lines] > >Ken Bland J - 26 Apr 2007 04:27 GMT > Charlotte Adams is pretty urgently in need of some information and > support. Unfortunately, she is unable to see the messages posted [quoted text clipped - 17 lines] > Thanks > Burney She's reading and posting through Google and something's wrong with Google's archiving, so we can see her posts but she (or anyone using Google to access newsgroups) cannot see hers nor our replies. Google may or may not be aware of it. If she wishes she can report the problem (to them) via http://groups-beta.google.com/support/bin/request.py "Report a technical problem"
This is an alternative way to access the group and it seems to be archiving okay.
http://talkaboutsupport.com/group/alt.support.cancer.prostate/ Please let her know ? J
Burney Huff - 26 Apr 2007 15:54 GMT >She's reading and posting through Google and something's wrong with Google's >archiving, so we can see her posts but she (or anyone using Google to access [quoted text clipped - 8 lines] >Please let her know ? >J I did pass the message along to her. Hopefully she can use the alternate method you suggested and get into the group promptly. I tried it and it does seem to work OK.
Thanks!
orchids58 - 26 Apr 2007 19:52 GMT Hey, I am on, both sites now, if one doesn't work, the other will. I will check with Google like J suggested. I have a mac by Apple and use Safari and Google. Thanks again, I am now not as crazy worried as yesterday, last day before treatment started. I know I can only support him now and with all your help, I will be there watching for any problem and catch it in early stage, hopefully. first treatment down this morning. I will keep you updated. He is sleeping through his Astro game in his chair as we speak. Charlotte Adams *********
> >She's reading and posting through Google and something's wrong with Google's > >archiving, so we can see her posts but she (or anyone using Google to access [quoted text clipped - 14 lines] > > Thanks! Burney Huff - 26 Apr 2007 20:51 GMT Welcome, Charlotte. Now that you can get both sides of the conversation I'm sure you will find plenty of people here who are able and willing to help you and Isaac. Most of us have been in a situation similar to Isaac's. Most of us have wives who have been in your situation. We all manage the best we can. Support from others won't hurt and will almost certainly help - sometimes a lot!.
The first two or three weeks of radiation will probably be a snap and Isaac probably won't see or feel any effects. After that, he'll probably notice fatigue starting to set in. But, since he's otherwise healthy, it'll likely go just fine.
Keep us posted and feel free to ask anything you want to know about. NOTHING (relating to prostate cancer and it's treatment) is off limits here.
Take care!
Burney
>Hey, I am on, both sites now, if one doesn't work, the other will. >I will check with Google like J suggested. [quoted text clipped - 26 lines] >> >> Thanks! orchids58 - 27 Apr 2007 05:42 GMT > Welcome, Charlotte. Now that you can get both sides of the > conversation I'm sure you will find plenty of people here who are able [quoted text clipped - 46 lines] > > >> Thanks! Hi Burney, Thanks for the HELP !!! Delicate but pertinent, and please don't check spelling.
He is expecting problems in the sex department, but not much else. I wish I could be so trusting. Excuse bluntness, but they don't tell you that after RPx surgery and reconecting all , that the penis will be about an inch shorter !!!!! I didn't know that either after all the help I had before his surgery, is it just Ike or has anyone else noticed that? How much time before radiation will effect him, would you know ?
Thanks in advance? Charlotte
Burney Huff - 27 Apr 2007 16:55 GMT >> Welcome, Charlotte. Now that you can get both sides of the >> conversation I'm sure you will find plenty of people here who are able [quoted text clipped - 61 lines] >Thanks in advance? >Charlotte Good morning, Charlotte!
I think you'll find a lot of people who have experienced the "shortening effect" and I would guess that few, if any, of them were warned about that beforehand. I still don't know where it went! If you read here for a while, you'll get the impression that doctors generally do not do a very good job of telling about side effects, for either surgery, radiation, or hormone therapy. There are probably lots of reasons for that. My feeling is that the biggest reason is that doctors are interested in treating the problem that they are facing with the patient today. Side effects come later and will just have to be dealt with when they show up.
I can tell you my experience with radiation. In reading about the experiences of others, I think it is fairly typical, although there are certainly variations in the nature and severity of side effects. I noticed nothing at all for the first couple of weeks of treatments. Then, I started feeling more tired. Keep in mind, I was having radiation treatments very early every morning and working full time. Since I drove north for radiation and then drove south to work, driving alone, added about 50-60 minutes to my day. So, my days were somewhat longer than normal, too. The fatigue continued to increase throughout the treatment and for another couple of weeks. Then, it seemed to level out for a while and I gradually started getting my energy back. It's hard to say how long it took to "get over it"; but, it wasn't more than a couple of months, I think, and it was really no big deal.
Ike will probably have blood draws to check his red blood cell count. Radiation going through the pelvic bones damages the marrow and impairs production of red blood cells. If the red blood cell count goes too low, he may be put on iron supplements. That helps the red blood count. It can also cause constipation - something he should watch for and try to prevent. I imagine Ike was told about that. With that much radiation going through the area, intestines can start "acting up" and the rectum can get pretty sensitive (I thought of it as being like chapped lips - if you'll excuse the analogy).
Now, to what I think you were really asking..... The radiation is cumulative. Not much happens immediately. It just continues to add up. Sexual function was impaired during the later stages of treatment, mostly because I was tired, I think. After radiation, it just never seemed to come back to the level it was before radiation. (And, surgery had already taken it's toll on the process about five years before!) There are some ways to counter the reduced sexual function, if you and Ike don't already know about them. Viagra and similar pills can help; but, they may have their own side effects that make them unsatisfactory for some men. In some cases they can give the guy such a bad headache, he's not interested in much other than getting rid of the headache. I think that's why the docs will give samples to try them out before you have to buy them. There are also shots that generally work well. Ike's doc can explain them and teach him how to give himself the shots if that seems to be something Ike wants to check into. There are other alternatives that Ike's doc may want to offer - and the doc is the one who should be relied upon to suggest things that may work. The doc knows Ike. I don't!
I hope this helps. If there's anything I didn't address that you want to know, just ask. I hope others will respond and share their thoughts and experiences, too.
I imagine Ike gets the weekends off from radiation treatments. That will be good for both of you. Have a great Friday and a wonderful weekend.
Burney
orchids58 - 02 May 2007 05:48 GMT > >> Welcome, Charlotte. Now that you can get both sides of the > >> conversation I'm sure you will find plenty of people here who are able [quoted text clipped - 129 lines] > > Burney Burney, This was never mentioned, but I am watching for it now:
Ike will probably have blood draws to check his red blood cell count. Radiation going through the pelvic bones damages the marrow and impairs production of red blood cells. If the red blood cell count goes too low, he may be put on iron supplements. That helps the red blood count. It can also cause constipation - something he should watch for and try to prevent. I imagine Ike was told about that. With that much radiation going through the area, intestines can start "acting up" and the rectum can get pretty sensitive (I thought of it as being like chapped lips - if you'll excuse the analogy).
Thanks, Charlotte
Justin Case - 27 Apr 2007 21:31 GMT My comments at the bottom. <Considerable text snipped>
: Hi Burney, : Thanks for the HELP !!! [quoted text clipped - 10 lines] : Thanks in advance? : Charlotte I was about to respond to your inquiries until I read Burney's answers; he's covered everything quite well.
A man's penis will be shortened by the length of the urethra removed when the prostate was excised. About an inch is not uncommon.
Again, Burney's assessment about tiredness and lethargy is exactly like mine: no effect for a week or so, then it seemed as if I was sleeping or napping all the time. Eventually vitality resumes, but maybe a bit less than before. I noticed considerable loss of pubic hair; no big deal, but it made me wonder. If the intestinal tract was damaged by radiation, as mine was, this shows up later.
BUT...it appears that radiation has thus far gone a long way toward destroying those stray cancer cells.
Keep the questions coming. You'll be unlikely to find a more helpful and cooperative group that you will here.
Ken Bland
Claude - 27 Apr 2007 22:23 GMT > My comments at the bottom. <Considerable text snipped> > [quoted text clipped - 35 lines] > > Ken Bland I would be grateful if any who have undergone radiation treatment would discuss their rectal problems. Even without radiation, I have some symptoms of proctitis. Because of that I have almost ruled out salvage radiation if my PSA starts going up. I am 5 years from my RP and 69 years old. My feeling is that if salvage radiation would cause even more rectal problems, from a quality of life perspective I would probably forego it. One of the reasons I chose RP as my treatment is because radiation would be a fall-back. I wish I could still feel that way, but the idea of bowell incontinence is a nightmare thought.
Steve Jordan - 27 Apr 2007 23:04 GMT (snip)
> I would be grateful if any who have undergone radiation treatment would > discuss their rectal problems. Even without radiation, I have some symptoms [quoted text clipped - 5 lines] > fall-back. I wish I could still feel that way, but the idea of bowell > incontinence is a nightmare thought. Radiation just might be contra-indicated where the patient has pre-existing proctitis. Ask a rad onc.
However: there is a means of delivering RT that is said to be so accurate that the rectal area can be avoided. It is called image-guided radiation therapy (IGRT). I know two men who have been txd in this manner, and neither had any bowel incontinence. Of course, what works for A might harm B, so such anecdotes must not be relied upon when making a selection of tx.
IGRT is a refinement of IMRT. More can be found at: http://www.medicalnewstoday.com/medicalnews.php?newsid=28221 And on Google.
One last thought, FWIW: if salvage tx is declined due to QOL issues, what sort of QOL is to be expected as the cancer takes more and more control?
Regards,
Steve J
"The thing is to expect nothing in particular, but (to) be aware of the lack of enforceable guarantees or enforceable contracts with nature/god/entropy as to the condition or durability of our bodies." -- Brian Brunner, PCa survivor, December 12, 2005 on The Prostate Problems Mailing List Thank you, Brian.
kh - 28 Apr 2007 15:11 GMT > A man's penis will be shortened by the length of the urethra removed when > the prostate was excised. About an inch is not uncommon. [quoted text clipped - 5 lines] > made me wonder. If the intestinal tract was damaged by radiation, as mine > was, this shows up later. I had 25 IMRT sessions followed by Pd Seeds in 2005. A month after the seeding I was exhausted and had multiple cognitive issues (memory, focus, analytical, moods). Some of that *might* have been the radiation, the radiation induced tiredness, and getting up several times a night to pee. You're not sharp if you don't get a good night's sleep. If you go weeks without solid rest, yeah, expect some moodiness.
I think it was the Lupron. At the worse of the symptoms, I had been on Lupron for months. My fasting blood sugar was hitting 300; that in itself can cause cognitive issues.
I've seen mixed reports on the penis shortening. Some websites claim that it's an optical illusion, that the bladder descends to fill the one inch space. Others say that it's just the surgical site getting puffy.
As a natural shorty of just over 5 inches, I can't imagine losing an inch or more. I'd be, what? FOUR inches? Three and a half? One of life's great experiences is the first, slow, gradual, sinking in, making that moment last.
-kh but then, my tongue only protrudes about a half inch.
rosbif - 28 Apr 2007 16:45 GMT >-kh but then, my tongue only protrudes about a half inch. I see there's a link for a "miraculous VP-RX tongue lengthening pill. Increase your tongue length a whopping 6+ inches. overnight! * Forget implants..."
LOL!!! The mind boggles. Even in Brave New World they didn't have a pill for that! Unfortunately the link is dead so I think you might have missed the boat there kh.
Claude - 28 Apr 2007 17:40 GMT >>-kh but then, my tongue only protrudes about a half inch. > [quoted text clipped - 5 lines] > pill for that! Unfortunately the link is dead so I think you might > have missed the boat there kh. And just think how wierd we'd all look if they developed a Viagra for the tongue.
kh - 02 May 2007 21:59 GMT > I see there's a link for a "miraculous VP-RX tongue lengthening pill. > Increase your tongue length a whopping 6+ inches. overnight! * Forget [quoted text clipped - 3 lines] > pill for that! Unfortunately the link is dead so I think you might > have missed the boat there kh. Darn! What I could do with a 6 inch tongue! Even 4 inches would let me touch my eyebrows.
Ice cream cones too, think of the fun there.
-kh
Steve Kramer - 03 May 2007 13:25 GMT > Darn! What I could do with a 6 inch tongue! Even 4 inches would let > me touch my eyebrows. > > Ice cream cones too, think of the fun there. Or pulling the cherry out of a Manhattan....
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