Recent diagnosis of prostate cancer

Hi Trey

Luckily I have not yet said "why me" and hope I never do. I have accepted my fate in life and just move forward in hopes of licking PC. We are in the same boat, so to speak. I just finished my 17th proton treatment on Friday, March 16. I will soon be 50% through with my proton treatments. I am retired and therefore not working. You should not be working such long hours and your employer should be empathetic to that, unless you are doing this voluntary and pushing yourself too hard. Everyone has a different experience with radiation treatments whether it be x-ray (which you are taking) or proton. I talk to some guys and they have no side effects. You can't pre-judge how you are going to feel down the road by listening to someone who tells you it will get worse before it gets better. I am having some ups and downs with urinary and bowel side effects which are annoying, but manageable. Other than that I feel pretty good. I only seem to feel tired when I am not getting enough rest. So hang in there buddy--this too will pass. I am thinking ahead to the Spring and Summer right now when all of this will be behind me and hopefully everything will turn out ok for the future. Just think positive and start getting more rest to help offset the effects of the radiation treatment. This is an order!

Dave

hey Trey, I think most of us ask "why me" when anything bad happens to us or a family member. but what's important is to get back up and stay positive, which is exactly what you've done. yeah - I think you need to work shorter hours. your body is being bombarded with radiation - surely it needs rest and other healthy things to heal. you're halfway there! you can do it! take care, kat

Hey Trey, I hope you can work less while being treated. I am fortunate that I'm on short term disability and don't have to work. Within what financial constraints you must consider, your most important job at this time is taking care of yourself. I think it's normal to have periods when you feel a little bummed and then more up.

I have completed 38 of 43 treatments. With patience, perseverance, and a little sweet oil, this too, shall pass.

Regards,

Bill

hi trey again today!

it is always refreshing to hear that words of encouragement and comfort help others here when they are in need.  it amazing how none of us has met in person, but we can feel so close.  i don't know what i would have done without the internet to do enormous research after i was diagnosed with PC.  I was also able to network on the internet and exchange e-mails and phone calls which helped me so much in my treatmet decision.  this message board has been a blessing to all of us in so many ways.

i assume that your boss knows about your PC.  if so, i don't know why he would ask you to work extra hours. maybe you just put on a good front around him and he doesn't realize what you are going through physically and especially emotionally.  i think a lot of people tend to play down PC and think it's no big deal because of the potential high cure rate.  until you have been to battle with PC, i guess no one can fully understand its implications and potential complications to a man.

keep thinking positive--our radiation treatments will be over before we know it. cheers!

dave

p.s. if you are not sleeping well consider asking your doctor for a prescription for Ambien CR 12.5 mg.  i am told that it is not habit forming, although it has gotten some bad press lately about people walking in their sleep, driving their car, etc. after taking the pill.  i usually cut the pills in half.  a full pill will really put you to sleep for several hours.  i have not been sleeping well since i was diagnosed with PC and use this pill when i feel i need it to get to sleep.  sometimes i have to get up to go to the bathroom during the night after taking the pill, but i usually fall back to sleep quickly.  it is very important to get sufficient sleep and rest during radiation treatments.

Hi Trey

Thanks for you posting to my thread copied below. Just wanted to repsond to what you said. I don't understand why your urologist didn't authorize a bone scan after your biopsy. after my biopsy i had both a bone scan and MRI of the pelvis. While neither of these tests are 100% accurate (as you doctor said there could be false readings), they are important markers and bench marks in conjunction with the biopsy. I think it was wrong that a bone scan was not taken. Moreover, for a doctor to tell you that a biopsy is pretty conclusive is totally wrong. I had a 29 core biopsy which I believe gives me greater assurance of my stage of cancer, but for a doctor to say conclusively that any cancer is confined only to the prostate is giving you a false sense of security. If the biopsy is 12 cores or less (which seems to be the norm for many members here), it gives you less assurance as to your stage of cancer. Also, you are probably well aware from reading postings on this website that some men after surgery find out that the pathology of the removed prostate is worse than the predicted stage of cancer before surgery, based on the DRE, Gleason score and PSA reading. Check out the Partin tables on the following website to determine your risk of the cancer having escaped the prostate.

http://www.prostate-cancer.org/education/riskases/partin.html

Unless you are in a very early stage of PC, there is a good chance that you will have some risk of the cancer having escaped the prostate (this does not mean that it did--only a statistical projection of the probability). While I am still in an earlier (not the earliest) stage of PC, I think I still have about a 30% risk of the cancer having escape my prostate. Based on my tests before treatment, it is not expected that the cancer has escaped, but that is only a projection which may or may not be true. With radiation treatment (at least proton and probably also with x-ray IMRT or IMGT) they usually radiate beyond the prostate to hopefully catch cancer that might have escaped beyond the prostate, but nearby.

I will have a total of 39 treatments and have completed 21 with 18 to go--so we are close in our treatment schedule! I really haven't had any fatigue other than normal tiredness at times. I started to get urinary and bowel side effects soon after treatment started. While they are annoying at times, they seem to be manageable right now. The side effects vary in intensity. I have had days (usually in the evening and night) where the urine flows heavily with some burning. I also have frequent bowel movements at times, but not diarrhea. Sometimes it just feels uncomfortable in the anal and genital areas. I take Flomax, but I am not sure how much it helps. I also take some Advil first thing in the morning and just before I go to bed at the suggestion of the nurse where I am getting treatment. I am taking Metamucil to help with the bowel problems. I am just taking it in stride as it will hopefully go away after treatment. Continued good luck!

Dave

hi Dave,
I've finished 22 with 20 to go. I think I'm starting to feel the effects of the radiation. I noticed last night when I went to bed that I had a burning sensation in the area of the prostate. It was very uncommfortable. I'm taking Flomax but it did't help this. Just wondered if you are feeling anything like this yet. Today its gone, seems its just at night when I go to bed.
I also asked my doctor if I would have a bone scan. He said the it wasn't necessary; that they would be more concerned about false readings. He said I didn't need one because my biopsy was pretty conclusive that it was confined to the prostate. I hope he's right.. Hope you are doing well! trey 3/24/07

       Hi     ~    Trey,   Bill,   & Dave, JustJulie, John *jeb187chs, Dutch, Sterd82,                                                   Gordy,   DJSydney ,   Cousin Bill, &  "You".....                  Thinking of you and wanted you to know….   Wonderful  sharing of your treatments ~ helping others to understand and learn is a wonderful gift....  Thank you!                                                You are all  “Special”…you know that!        Keeping you close in thoughts and prayers, In Friendship ~ Lee & Buddy

Hi Trey

i went back to your first post in which you indicated your cancer stage stats as well as your nomogram stats based thereon, as follows:

"After a routine checkup, my PSA was 7.2. The biopsy revealed a Gleason score of 6 and a clinical tumor stage of T1c. The nomogram indicated an organ confined disease at 67%, capsular penetration of 30%." You indicate more recently that your DRE was negative. Keep in mind with a DRE, that the doctor can only feel one side of the prostate. While a negative DRE for one side of the prostate is good, it does not rule out what cancer may be on the other side of the prostate which cannot be examined by DRE.

While your doctor says you are in an early stage of PC, keep in mind that a Gleason 6 is not the earliest stage of PC. many of the members here have a Gleason 6 and stage T1c: the pathology after surgery, for those who elect surgery, sometimes shows a higher Gleason score and stage of PC.

Your nomogram stats clearly indicate that there is a 33% chance that the cancer went beyond the prostate, which is what I was discussing in my previous message. if that is the case, i still don't understand why your urologist didn't order a bone scan. my bone scan was negative, but it did indicate something in my knees which we concluded was related to a past injury and not metastases. i think you need to get a clear and sound reason why a bone scan was not done. even though it is not a perfect test, having it done and finding it negative just add a greater comfort level regarding your stage of cancer. my urologist is director of the prostate cancer group at a major hospital. i have to assume that he ordered the full body bone scan and MRI of my pelvis because these are considered standard tests that would be normally taken in conjunction with the biopsy.

In fairness to your doctor, i have done a little research and there seems to be conflicting opinions on under what circumstances a full body bone scan should be performed. my personal opinion is that i would rather have one just to make sure that it did not come out positive for bone metastases. once you are diagnosed with PC, you never know with 100% certainly exactly what stage of PC you have. if you have any doubt in your mind, you could just tell you doctor that you want a full body bone scan for the record--it an easy test (an injection of some dye into your blood stream and lying under the scanning machine thereafter).

our stats are somewhat similar, except i did have one area of the prostate with a gleason 7 (3+4). i think that both of our doctors are saying that we have a good chance of being cured with radiation, but there is no way that they can say that with 100% assurance. after you find out a better reason why a bone scan was not taken, please let us know. cheers!

Dave

Hi Dave,
After my treatment today (which I had to wait almost an hour for), I saw my doctor's partner since he was on vacation this week. I asked her about a bone scan. She reviewed my chart and told me that I was considered low risk based on my scores and that a bone scan was in fact "not recommended" for low risk patients. I'm still not sure that I'm comfortable with this and will ask my personal doctor when I see him on April 9th. Have you ever heard of anything like this? Is there such a thing as such a low risk that they can be confident without a scan? I know that every doctor is different but I'm happy to hear that I'm that low a risk!! What would you do if you were me? Regards, Trey

Hey friends,
I haven't posted in several days and have only seen a couple of you in the chatroom lately so I thought I would give an update. I have finished 27 grays and have 15 to go!! At times, I have the symptoms of a bladder infection, (feeling the need to go, going a little, then still feeling like I need to go immediately afterwards). I didn't feel this until I was well into the treatments so I guess its the grays causing it.
I'm trying to improve my diet by switching to caffeine free Mt. Dew, green tea, and cranberry juice everyday. I had been drinking 4 or 5 regular Mt. Dews a day before. I'm also taking One a Day Men's Health Formula vitamins daily. Still trying to cut back on the cigarettes. I know, I'm terrible!!

One thing I have noticed is very little sex drive. This is not like me at all and its scary! I hope its just temporary. I'll see what my dr. says about this on Tuesday.. I hope everyone is feeling well and moving forward! You guys that have a better half are so lucky! Take care!! Trey

Hi Dave,
Good to hear from you! I'm also taking flomax and the problem is not constant, just at times. I'm drinking the cranberry juice cocktail with is 30% cranberry juice I think. I'm trying to smoke one less cigarette a day than the day before..that helps with the stress of all this trauma!! I am going to quit. I've really been thinking about it a lot lately and thanks for the encouragement!! I think I can do it..
You will finish on Wed., the 18th I guess. Since I have 42, my last will be on the 20th. I'm looking forward to being done with them. I guess we just resume our normal life then! Its hard to imagine that righit now. Again, its great to hear from you. have a good week! trey

     Hey Trey,   Just looking in on you ~ to see how you’re doing from your last update 10 days ago?   Hope the change in diet is working and really glad to hear you’re working on the smoking issues.   Buddy’s sister has smoked since she was 14 and now in her 50’s.   1st year anniversary and still going strong.   Good luck to you on this challenge… it’s a hard one but you can do it!!!   We will be your cheering squad!!      We are thinking of you each and every~day.   Keeping you extra close during this time of treatment.   In Friendship ~ Lee & Buddy

 Trey ~ Thinking of you and wanted you to know……    Touch base soon okay!!!!       Hugs comin’ atchu!!!!!   Xoxoxoxoxo Lee & Buddy