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Posted 4/13/2013 12:39 PM (GMT 0)
Welcome to both 49 and Winning,
As you can see from this thread, there are a lot of people here with a wealth of experience and advice. As newbies, I encourage you to look back through the threads and research your particular situation. He search bar up top is a great way to zero in on the information you are looking for. Knowledge is power in your fight against this beast.
Good luck to you both,

Paul
Posted 4/13/2013 6:19 PM (GMT 0)
Here's a little pick-me-up, 49 . . . I'm a G-9 with a pre HT of 511, prognosis was horrible . . . 1.5 to 3 years. I'm at 6 years now and swinging! Dx was at 52 and I've managed to double my score through HT and positive thinking. This site can't help but pick up your spirits. I can't believe how much info there is on here let alone the upbeat people.

I've found that doing as much research as possible while helping others really chases the blues away. If you are having Chronic Pain (CP) issues, check out the CP forum here. My wife is disabled and so am I from all the HT SEs. The CP forum can help you there as well. Well, best of luck and the Least of Pain . . . Q
Posted 4/13/2013 9:13 PM (GMT 0)
Hi everyone! This is 49's fiancé. I am so thankful he found this forum. Your words of encouragement have meant so much to us both. You have helped him in ways I couldn't. We are putting together a plan in the event we need radiation. Our consult is April 24th with a radiation oncologist at Shands in Jacksonville, Fl. Again, thank you all! Your posts have warmed my heart.
Posted 4/13/2013 10:50 PM (GMT 0)
Since you live in Jacksonville, you may also want to look at proton therapy. There are less than a dozen of these facilities (maybe more, now) in the country. When I did my SRT, proton therapy was still not covered by my insurance. You have one right there in Jacksonville. Reach out to someone here who has done the proton therapy.

Cheers,
Paul
Posted 4/14/2013 12:28 AM (GMT 0)
Thank You!

So, most likely I will need adjuvant RT first right? I'm seeing the oncologist urologist in Jax FL. In fact it is at the proton therapy institute. From what I've read and my diagnosis getting started with both RT AND HT may be the protocol ? Can anyone give me some insight.
Posted 4/14/2013 4:21 AM (GMT 0)
I looked into the proton therapy over the IMRT. Proton therapy allegedly does less damage to healthy tissue while inflicting more damage on the targeted cancer. My insurance would not cover the proton therapy because there was not enough data about the success of the treatment. I would give them a look before committing to radiation. If anyone who has had the proton therapy could give more insight, it would be great.

Paul
Posted 4/14/2013 4:47 AM (GMT 0)
49er and fiancé,

We've had some spirited debates here about proton therapy. Almost everyone agrees that they are wonderful machines for some purposes -- particularly for treating small tumors in hard-to-reach places surrounded by other tissues you don't want to radiate. For treating a whole prostate bed, where the idea is to radiate a fairly large swath of tissue because you don't know exactly where the cancer could be it is a bit like cooking a turkey in a toaster oven. It can be done but there isn't a lot of research that shows it works any better than other more common radiation technologies such as IMRT or IGRT (x-rays).

There's no reason for this to worry you (protons work fine) as long as your insurance is OK with paying for them. Sometimes insurance carriers get balky and prefer something else that works about as well on prostate cancer and is cheaper.

I think that I mentioned that I suspect you will be looking at both HT and RT. Often that will mean two different doctors -- a medical oncologist to monitor your hormone therapy and an radiation oncologist to do the radiation treatment. I see both at my cancer center. I will probably be seeing less of my radiation guy now -- his work is done and I only see him occasionally to make sure I am not having any late-breaking side effects (which, mostly I am not). I'll continue to see me medical oncologist for a longer time since he will be overseeing the remainder of my 2 years of ADT and will montior my PSA to watch for signs of recurrence.

Here are a couple of threads where we've talked about proton therapy:

www.healingwell.com/community/default.aspx?f=35&m=2279281
www.healingwell.com/community/default.aspx?f=35&m=2587809
Posted 4/14/2013 5:43 AM (GMT 0)
49er and fiance...so glad you jumped in here. I was heart broken thinking 49er was going through this alone. Good luck and keep us posted....do you have a date...WEDDING date that is?
Posted 4/14/2013 2:59 PM (GMT 0)
DGV
We are thinking next spring (wedding). We want to get the treatment issue figured out first. Also, my son will be graduating HS next year and going to college or the Airforce. This will leave me only 2 of 5 children in the house remaining. Currently, I have a 20 yrld in the Airforce and my 19 yrld is making her way up north. The two remaining g girls are 5 and 13 and I will gain a step daughter 16.
Posted 4/15/2013 12:02 PM (GMT 0)
Hi 49yrsold,

My situation is similar to yours, maybe worse. I had my RP in Jan 2011, then started HT and had 40 sessions of ART to pelvic bed and lymph nodes. ART completed in March 2012. No major side effects of RT. I had my last hormone injection in June 2012 so HT is over as well. PSA is undetectible and hope it will stay there forever.

• Pathology Report:
o Gleason 8 (4+4) tertiary 5
o Pathologic staging : pT3b.
o Tumor is bilateral, extraprostatic seen posterolaterally on the right at the apex and posteriorly at the left base
o SVI : Involvement of left seminal vesicle
o pN0 : No regional lymph node metastasis. (3 lymph nodes examined)
o All surgical margins negative
o Extraprostatic extension present
o Perineural invasion present
o High grade prostatic intraepithelial neoplasia (PIN)



So, most likely I will need adjuvant RT first right? I'm seeing the oncologist urologist in Jax FL. In fact it is at the proton therapy institute. From what I've read and my diagnosis getting started with both RT AND HT may be the protocol ? Can anyone give me some insight.

Posted 4/15/2013 1:08 PM (GMT 0)
49, the best thing you can do is be positive you have kids to fight for allowing the depression and panic put you down is not going to help you, you have to keep the faith when I got the dx about I had PC I was in shock too there were 3 days of crying of feeling sorry for myself asking me why me? but at the third day I say this freaking disses is not going to put me down I have to be strong because I have to fight agains this beast my family need me, so I started to do my life normally the people who knew I had PC told me looks like you don't have cancer.
49, I am going to pray for you.
Leo
Posted 4/15/2013 2:28 PM (GMT 0)
Thanks  Leo and Traveller! Some days are good and others are bad!  I have a problem sleeping at night.  Manly because I have an urgency to pee!  I have to take a Zanex so ill fall asleep!  Also, I’ve been reading where a Bone Scan or Ct isn’t really that reliable.   I want a CT or MRI to confirm no Mets!  Does anyone have any incite on this!   PS:  It’s been about a month since surgery and sometimes especially in the morning I pee almost copper color.. Maybe even darker! Any info on that... is that normal?    Thank u!
Posted 4/15/2013 2:46 PM (GMT 0)
Hello 49,
To my knowledge, a bone scan taken at the dx time would be used to compare with a bone scan taken years later to find out if there are any mets. At this point, I don't think any screening test whteher it is bone scan or CT or MRI would show mets if there are any.
Are you drinking enough water everyday?
take care
Posted 4/15/2013 2:52 PM (GMT 0)
58

No, I’m not drinking enough water! I drink a nutritious shake in the morning and it makes me pee every 5 to 10 min. If I drink too much I can’t go to sleep because the urge to pee all night! I’m kind of in a catch 22!
Posted 4/15/2013 3:27 PM (GMT 0)
Hi 49,
Prior to starting hormones my prostate was so large I was unable to empty my bladder completely. A stone formed in my bladder because of that and those particular stones cause bleeding as they are.spiny and cut the bladder walls. They also make you.feel like you have to pee all the time. Its just something to look into. Todd
Posted 4/15/2013 3:30 PM (GMT 0)
49,
I don't know the change in the color of your urine is related to some nutrition, medication or else. You should consult with your doctor. Why don't you stop drinking the nutritious shake that creates a lot of problems for you. Please read below:

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Urine gets its yellow color from a pigment called urochrome. That color normally varies from pale yellow to deep amber, depending on the concentration of the urine. Darker urine is usually a sign that you're not drinking enough fluid. "Your body needs a certain amount of fluid to function, so the body will hold on to fluid and the urine will become very strong and concentrated. When that happens, it will turn a darker color," Griebling says.

The opposite is also true. If your urine is very pale, it means that you're either drinking a lot of fluid, or you're taking a diuretic -- a drug that forces the body to get rid of excess water.

Urine can turn a rainbow of colors, and an unusual hue isn't necessarily cause for alarm. Certain medications can turn the urine fluorescent green or blue, carrots can tint it orange, vitamins can give it a yellow hue, and an inherited disease called porphyria can shade it the color of port wine.

Seeing red is typically a sign that there is blood in the urine, but before you panic, know that a little blood can produce a dramatic color change. "What I always tell patients is it takes one drop of blood to turn a toilet bowl red," Smith says.

That said, just a little blood in the urine can be a sign of something serious, like an infection or cancer, and it warrants a visit to your doctor or urologist. If you're seeing blood and your urine is also cloudy, there's a good chance you've picked up an infection,
Posted 4/15/2013 4:03 PM (GMT 0)
49er,

Feel free to talk to your urologist about your frequency and urgency but I don't think they are anything to worry about one month out of surgery. At one month you still have stitches in your urethra. They don't dissolve, actually, your body attacks them and absorbs them (except for a few bits that you can find in your urine from time to time). The stitches are a bit irritating and can cause that "always kinda have to go" feeling. That will gradually get better.

The color of your urine is almost certainly from not drinking enough water in an effort to sleep through the night. I'd drink a bit more and not worry about it. Actually, even if there were a few drops of blood that would probably be OK, too. Sometimes as part of a stitch works its way loose (when your body has chewed through one side of the loop) you can bleed a bit around the stitch. Happened to me. Not a big deal.

Your insomnia will probably get better after you talk with your radiation oncologist. It's reassuring to have a plan.

After surgery your bladder is going to wake you up from time to time. That's just going to happen. The trick is to be able to get back to sleep. I had pretty bad insomnia (mostly before my surgery). I would go to sleep normally, sleep for 3 1/2 hours, wake up to pee and then lay there worrying until it was time to get up. I tried sleeping pills. The problem is that if I took them at bedtime they wore off about when my bladder woke me up. I didn't want to take them at 4 am since that wouldn't give me enough time before I drove to work. In the end, two things worked: one was to set an alarm clock to wake me up at 1:30 am to pee and take a sleeping pill, the other was that once I had a better plan for my treatment my anxiety subsided and I didn't need the pills to sleep any more.
Posted 4/15/2013 4:41 PM (GMT 0)
1963,  58 & Peter. Thank you!  After your post I immediatly drank a bottle of water...  Went pee about 10 min later and was significantly lighter... Thanks again Traveller !!  Peter ... You articulated my delema exactly...so now I dont think Im the only one sleep deprived from the worry and blatter issues....  Great idea regarding the alarm clock and the meds...also, I think your wright about the Radiologust Oncologust.... Im anxious about that and a control freak, so the not having a plan is a major stressor! Todd  or 1963   You’re Awesome Brother...Since I did have a spot on my bladder neck; I will mention it to the Oncologist....  They did a CT scan with contrast of my entire pelvic area before surgery.... they said they saw nothing suspicious with my bladder other than calcium deposits. Also, I did have some blood in my urine for about a week after surgery.   My Uro said that was normal at that point!   My pee is more of a brownish copper... and is usually only in the morning!    PS: I need to do kegals (sp?)...  How important are they and did they really help!
Posted 4/15/2013 4:44 PM (GMT 0)
Should have checked the spelling on that one... sorry.....  Texting while on phone!  
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