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Posted 4/28/2012 5:03 AM (GMT 0)
She's right. I keep reading the junk that is all over the net about PCa. Then I freak out! My latest scare is that I am awaiting results of a thoracic xray to determine what a spot is on my spine that turned up on my bone scan. So then I read somewhere that the survival rate for PCa that has spread to the bones is 1 to 3 years. I really need to hear from some folks on here about what the statisics really are when it spreads and causes mets on the spine. I won't have results on the spot until next Wed. With a gleason score of 7 and a PSA of 7.4, and no back or leg pain I am very shocked that it might have gone to my bones already. Hope to hear from you real soon. Thank you. 
Posted 4/28/2012 6:16 AM (GMT 0)
 With a gleason score of 7 and a PSA of 7.4, and no back or leg pain I am very shocked that it might have gone to my bones already.

your numbers are similar to mine.  i'll bet the spot turns out to be something else.  but if it isn't you'll be around alot longer than 1 to 3 years.  i know when i was first diagnosed i had to log off this forum for a couple of months until i was well into treatment.  do whatever you have to do to take care of yourself and i wish you the best.

ed

 

Posted 4/28/2012 8:11 AM (GMT 0)
When was the study done? Based on what years? The study could be 20 years old. Internet is NOT your friend, have to be really careful on what you read.

So I have prostate cancer in the bones, I was diagnosed last July, when did the little critters decide to move into the bones? Has got to be before last July.

Yananow - You are not alone now - has stories of men with worse stats than mine who are still around.

From the American cancer society
The 5-year relative survival rate compares the number of people who are still alive 5 years after their cancer was found to the survival of others the same age who don't have cancer. Of course, patients might live more than 5 years after diagnosis. These 5-year survival rates are based on men with prostate cancer first treated more than 5 years ago. Treatment has gotten better since then and for recently diagnosed patients this may result in a better outlook.

For distant - The relative 5-year survival rate is nearly 30%

keep in mind that every man is unique and the statistics can't predict exactly what will happen

My plan is to dance at my granddaughters (3 month old) wedding. My Medical team knows that.

From - www.cancer.net/patient/Cancer+Types/Prostate+Cancer/ci.Prostate+Cancer.printer
Cancer survival statistics should be interpreted with caution. These estimates are based on data from thousands of men with this type of cancer in the United States each year, but the actual risk for a particular individual may differ. It is not possible to tell a man how long he will live with prostate cancer Because survival statistics are often measured in multi-year intervals, they may not represent advances made in the treatment or diagnosis of this cancer.

Bud yeah
Posted 4/28/2012 8:40 AM (GMT 0)
Bud, my heart melted when I read about your desire to dance at your Grandbabe's wedding.  Already 3 months old?  Now is when they really start to notice you.  May you enjoy her growing up moments.  I hope your PSA numbers go down!  Ron just had his tested this week. 

Wishing you the best Blue Velvet!  There are very supportive and helpful people here at the Healing Well community.  Some websites can provide inaccurate information.  Please keep us posted!

Peace,

Aimzee

Posted 4/28/2012 10:49 AM (GMT 0)
Bluevelvet.

My PSA was 22+ when I had a scan that turned up bright hot spots on my shoulder. The doc put his hand over the pot and asked if I could think of any recent injury or reason that area would have been stressed. Yep! A Mossberg 500, 12 ga. shotgun.
The scan was redone 10 days later and I was clear. (darn squirrels!)

So, there are two takeaway messages here:
1) Is it possible your hot spot is a recent injury?
2) Use a 20 ga. or 410.

Good luck
J
Posted 4/28/2012 11:27 AM (GMT 0)
I also had a spot turn up on both a bone scan and MRI. Both my Uro and radiation oncologist said they were darn sure, based upon the location, that it was PCa. They recommended spot radiation. Scared the hell out of me. Turned out, based upon a second MRI that it was just a tangle of blood vessels within the bone. Never heard of this, but now understand that it is quite common.
Posted 4/28/2012 3:44 PM (GMT 0)
Bud, I have seven grandchildren with the eighth one due in Dec. You are right, I need to start planning for alot of weddings. Thank you for all the information you provided. Ed, very good advice. Thank you. To everyone else, thank you for your support.

Bill
Posted 4/28/2012 6:55 PM (GMT 0)
I know how you feel... Went through (if not still going through) the same thing. A word of advice, always stop at a good news story and walk away. In the quest for information it is easy to get caught up. I try to only read positive posts even here. I've been jumped on before on this site for only sticking with the positive but it works for me. After awhile you can learn to skip entire topics just by looking at the person that posts them.
My wife can now tell when I'm starting to get down and will ask about what I've read.
In the words of my Uro... "There is a lot of outdated and misinformation out there.". He has even mentioned this one as having the facts skewed.
In the quest for reassurance, I wish you the best. In the quest for good health, you are already on the right track.
Posted 4/28/2012 8:02 PM (GMT 0)
Bluevelvet,

It is very rare to see bone mets with a PSA under 20.  (I just happen to be one of those rare birds, but ------ I'm not going away anytime soon.)  I must restate this --- it is very rare.

Hang in there and take it one step at a time.  Regardless what the results, there are many new drugs and therapies that are now available for PC. 

Take what you read on the Internet with a grain of salt.  There is some very good information and some really bad information.  Some very timely information and a lot of very old information.  You get the extremes.  From thousands of sites that claim to have cured PC to sites that say that you only have 1-3 years if you have PC with bone mets.

There is one place that you have already found that is the best place for PC information and support.   

Keep us updated...and hang in there...

Jerry L.

Posted 4/28/2012 9:38 PM (GMT 0)
Hello all, I am new to this forum. I had a bone scan that showed some unknown spots in my hip bones. [Don't ever take the bone scan CD home and open it on your home computer!! I opened mine and I looked like a Christmas tree!!] Anyway, they sent me to have a bone biopsy of my hip and it came back negative, so we scheduled my surgery. Please don't overthink this issue. Trust your doctors. And if you don't, get new ones!!

Biopsy in Dec 2010.
DX with PC in early 2011.
Radical Prostatecomy in June 2011. Laporoscopic (sp?)
Post-surg result was clear margins
Posted 4/28/2012 9:42 PM (GMT 0)
Bluevelvet,

I do believe that this forum is part of "the internet"
Posted 4/28/2012 10:40 PM (GMT 0)
bluevelvet, if this is the last thing you read on "the internet": get Patrick Walsh's book, "Guide to Surviving Prostate Cancer".
Posted 4/29/2012 1:58 AM (GMT 0)
I'm not judging, but in my personal opinion there are only a few places on the internet where a new prostate cancer patient should really go, and should stay away from just about everything else:

Good stuff includes:

Most other sources on the internet are either out-of-date, written by non-specialists who don't know what they're talking about, or ridiculously optimistic or pessimistic. STAY AWAY.

That isn't to say there aren't good sites that are more specialized, or more for experienced and knowledgeable patients. But the above list, plus the books mentioned by others are a good start.

Post Edited (proscapt) : 4/28/2012 8:02:47 PM (GMT-6)

Posted 4/29/2012 9:51 AM (GMT 0)
The Internet can be dangerous/difficult for anyone doing any kind of "research". This ranges from informing yourself about a disease or researching the quality of hotel rooms in Paris. Unfortunately there are many nut jobs out there, negativity, false self promotion and pure misinformation.

I think that ideally, although this is impossible, we would rely strictly on what actual medical professionals tell us until we ourselves become well versed in our disease.

Sure there is good stuff out there, but at first that stuff gets typically gets buried at the bottom of all search engine query results.

I was lucky in that the only site I saw in detail while I was still in shock was Yana. Here I was able to read personal accounts and reach out and communicate with actual peers who ended up telling me their experiences. This was both a realistic and reassuring approach for me.

There is also the issue of internet use post treatment. Unfortunately from what I have witnessed the majority of people who hang around sites like this are people who unfortunately are still dealing with disease related issues ranging from mild to severe. Those that have treatment and do fine tend to move on. That's good for them but not as good for newbies who come by looking for a realistic peer to peer experience of what to expect.

I personally cannot stay away form the Internet and even subscribe to numerous PCa related social media pages. But my family are constantly telling me to let go of all that and to move on. They tell me I should just do my PSA tests assuming nothing will change and to deal only with my doctors. Pointless telling me to do so, it's like telling the Hunchback of Notre Dame to walk straight, but probably good advice nonetheless.
Posted 4/29/2012 1:44 PM (GMT 0)
bluevelvet, my oncologist said the usual progession is from prostate-to lymphs-to bones. I had two spots on my liver found during cat scan before surgery and it really worried me, but my oncologist assured me PCa didn't normal jump without lymph involvement first. Turned out to be two small vein bundles that were probably there since birth.

Tests can show a lot of anomalies and they each have to be investigated. But with your numbers and no apparent lymph involement, the odds are the anomaly is something other than PCa.

wishing you the best, hj
Posted 4/29/2012 3:27 PM (GMT 0)
Herman, I was happy to read your post this morning.  This is the same thing that happened with my husband; however, the doctors seem unconcerned.  Stats look similar, but Ron is still dealing with the ED.  Take care!

I had two spots on my liver found during cat scan before surgery and it really worried me, but my oncologist assured me PCa didn't normal jump without lymph involvement first. Turned out to be two small vein bundles that were probably there since birth.

 


Posted 4/30/2012 12:42 AM (GMT 0)
Aimzee, hope your husband can successfully get treatment for his ED.  In my case I believe the ED would have come along anyway.  A lot of folks blame the surgery and it's true the traumatized nerves take a while to heal.....but most guys approaching 70 can appreciate the help of modern ED treatment regardless.  I also believe ED is a by product of a use-it-or-lose it situation... whether you've had surgery or not. 

At 4 months post op without a full errection my surgeon's NP at Moffitt suggested we aggresively address the ED. She said, "use it or lose it" and refered me to an ED specialist that believes in making an attempt at errections 3 times a week.  Pills, pump, and shots... whatever it takes.  I'm now taking trimix injections once a week and using the pump twice a week. I don't need to perform every time, only get the errection. However, if the mood is right..... intimacy happens. 

The pills don't work for me.  They don't give me a full errection and give me a headache and runny nose to boot.  I've tried Cialis, Viagra and Levitra without success.  They're bad enough on me, but who feels like trying to have sex with someone with a brain splitting headache, constantly sniffing and wiping thier nose?  Needless to say trimix is our first choice for the serious stuff.  The trimix injection gives me a little ache sometimes but I can live with it.  The pump isn't too bad, but doesn't feel natural to me.  Wife says she can't tell the difference.  hj

Posted 4/30/2012 1:34 AM (GMT 0)
3 weeks ago I had an implant in my heart to close a hole. I got home and started to do some research to see how others made out with the implant. By the time I was done I had every side effect anyone had reported. I told my wife and her answer was stay off the internet. Women are so wise.
I hope all of my health issues are no behind me. In the past month I found out I've had 5 additional brain instances since my stroke in 2004. My GP says if the hole had been closed in 2004 (if it had been found) I might not have had the 5 events. Even feels if it had been closed years ago I might not have had a stroke.
On the plus side my son showed up unannounced on thursday (to me) to help me celebrate my 70th b'day today. He and my wife had planned a wonderful celebration since January.
Best weekend I've had in a long long time.

I pry for an uneventful summer for all of you. I wish all of you well.
Gerry
Posted 4/30/2012 11:16 AM (GMT 0)
Thank you for your information Herman!  I will pass this to my husband.  He has made it clear that he won't do the injections.  Like yourself, he has had side effects from the pills.  Right now, he is healing from testicle surgery.  Poor guy has had his share of pain (every day).

Gerry, I hope all your health issues are behind you, too!  If you have been around here, you may know there are more than a dozen women who do the research work for their husbands or fathers.    Sounds like you have been through quite a bit with the heart problems.  May your implant surgery be successful!  I still agree with your comment that, "Women are so wise." yeah

Peace for all,

Aimzee

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