HealingWell
Search Close Search
☰

Coping tips needed please

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/15/2013 9:26 AM (GMT 0)
Hello all,

I posted the day after I was diagnosed and what an emotional roller coaster ride it's been. My emotions range from "I'll be alright" to "I'm gonna die!". Sometimes my eyes well up when I look at my kids (17, 13, and 6). Work affords me some level of distraction but that's a another headache all together.

I've been educating myself on this thing and have learned that this is a disease of estimates. NOTHING is certain with this thing. I see people with similar numbers to mine with wildly different outcomes. That's what makes it so hard because there is nothing to hang your hat on.

To add to my angst, I started having hip and knee pain the other day. I've had it off and on for years but now I wonder if it's the PCa! cry seems unlikely with my numbers but you never know with this thing!

When my Urologist told me the news he said some discouraging things that I won't repeat but I think that freaked me out. I think he was just only trying to be comforting by telling me I was between two extremes. I think part of my problem is that he never gave me a sense for how bad it is (given the information I have at this point). So I came here. To be honest this forum is encouraging and scary at the same time. You (we) are an amazing community!

The worst is I just can't stop thinking about it. I wake up every morning at about 3:30 with a pounding heart and cancer in my mind. Whenever I get distracted with something else, the cancer thoughts just come roaring back. I'm tired and I have so far to go.

Any thoughts appreciated.

John

PS - I'll do a signature later. Here are my stats :

Age 49
Bx 3/24
PSA 6.5
2/12 cores positive 1%, 10% respectively
PIN also found
G3+3 = 6
Considering options
See surgeon on 4/23

Post Edited (CharlieHorse) : 4/15/2013 11:45:39 AM (GMT-6)

Posted 4/15/2013 9:53 AM (GMT 0)
Charlie,
I too was an emotional mess when my PSA jumped nearly 2 point in slightly more than a year. Your stats look similar to mine, and my urologist was a 'cut it out immediately' kind of guy. I've said it before: I was more frightened of surgery than I was of the disease.
Fortunately for me, one of my friends suggested that I see an oncologist at Wheeling Hospital. It changed everything. This guy explained all of my options and what I could expect from each. I chose LDR brachy.
At this point, I never think about PC. My doctor says that I'm cured. I don't say that word, but I don't argue with him either. I have no trouble with incontinence, and my sex life is great. Better still, my outlook on life is far better than before my PC experience. I now cherish each day as though it were my last even though my stats and my doctor suggest that I will die of old age. My oncologist prefaces that by saying that I have a better chance of seeing old age if I stay off my Harley, but that isn't happening.
Charlie, I'm just saying that I was very near depression worrying about this stuff, and I now could not be happier. There is indeed quality life after treatment. Try to relax and make a treatment choice with which you are comfortable.
God bless you brother
Posted 4/15/2013 11:01 AM (GMT 0)
Thanks GOP!

I have been exploring options an have been leaning toward brachytherapy.

Very helpful!

John
Posted 4/15/2013 11:23 AM (GMT 0)
John, all of these thoughts are normal. But, as others have said on here, you are more likely to die from something else. Not having information is difficult. I felt better after my ct and bone scan and meeting with surgeon. Things got even better once I made my treatment decision. But, I found that if I said to myself "I am having surgery in two weeks" it didn't seem so bad as when I thought "I have cancer and need to have surgery." You will get through this, with the support of your friends and family.

Whatever treatment you choose, be sure you go to very experienced doctors. That factor alone can make a big difference in your recovery.

Good luck!
Posted 4/15/2013 11:27 AM (GMT 0)
Thanks BrooklynGuy!
Posted 4/15/2013 11:27 AM (GMT 0)
Charlie,

I guess we all have to find our way of dealing with PC. From your stats, it would appear that you have a very treatable cancer, and can expect to be around to see your grandchildren grow up.

Probably the biggest problem most of us have to deal with is our mortality. Somewhere in the back of our mind, we know that we will die someday, but expect to be in our 80's when we have to deal with that. Driving to work every day is a high risk situation as well, yet we don't seem to ever worry about that. Many of us have smoked for years, yet we don't consider the odds of us dying from lung cancer.

One of the first things I would recommend to you is to consider what you believe about living and dying, and get your life in sync with what you believe. Once you are able to do that, I think you will find that when you are dealing with the cancer, you can be more rational and approach it factually, and realistically. Most likely, with a Gleason 6, you will die of something else besides cancer. But, you will die someday. That is a fact.

Good luck to you. If you read some of the most advanced cases on here, I think you will find most of the guys have dealt with the worst case scenario, and are now dealing with where they are today with there disease.
Posted 4/15/2013 12:36 PM (GMT 0)
Charlie, as someone who used to post here regularly might point out, it's not surprising that you have prostate cancer. The percentage of men who have cancer in their prostate has been found to correspond roughly with their decade of life. In their 50's, half of men, if biopsied, would be found to have prostate cancer. In their 60's, 60 percent; in their 70's, 70 percent. For most of these men, the prostate cancer will never be discovered, and they will die of something else.

So, the problem becomes what to do when a PSA test leads to a biopsy, which leads to a cancer diagnosis. Suddenly that Gleason 6 cancer becomes a serious problem in your life. With stats like yours, the best answer may be "do nothing at this time." You appear to have a low volume of cancer, and a Gleason grade that is generally non-aggressive. You have a lot of options. So many options that the options themselves can become a problem, but that's the reality of prostate cancer.

I've had no greater shock in my life than the day I was told I had cancer. We've all been where you are now, and all I can tell you is that things will get better. A strategy for dealing with this will come to you. You've just been given perhaps the first palpable clue that you're mortal, and it's not easy to deal with, but you'll find your way through, and we'll be here to offer advice and encouragement. Sure, there will be tough times and tears, but you will prevail. Hang in there.
Posted 4/15/2013 12:49 PM (GMT 0)
Charlie-

I'm also a young guy (41). I was diagnosed in January. Arguably, my diagnosis was worse than yours (more positive cores, higher percentages, higher PSA, and PNI).

I kept calm, collected information, and choose robotic surgery. My surgery was 12 days ago. It went very well. Pathology report was very good. My body feels great (no residual pain, etc, etc). I'm dealing with a bit of incontinence and total ED, which is to be expected this soon after the surgery. See links in my signature below for more info.

While everyone's body/experience/outcome is different, I'm sharing my story with you because our profiles are similar (though yours is "better", as I mentioned above), and my experience dealing with PCa has been smooth and successful. And, I wish you the same!

-Gedman
Posted 4/15/2013 1:08 PM (GMT 0)
Charlie, You have been given great advise from others. I guess all I can add is that the odds are on your side in this fight. Take a deep breath, Your are doing the exactly what you need to do at this point. Get Educated on Prostate Cancer! Feel free to ask questions. All of us have had some if not all of the same feelings.

Keep you chin up and keep us posted. No one fights alone.

Cajun Jeff
Posted 4/15/2013 1:09 PM (GMT 0)
Charlie, I am certainly no one to give advice on the subject of coping, im not good at it. But I might be able to point you in a direction that would help. I started a thread last night titled starting to panic. Even though I'm not diagnosed yet. Please read it there is some great advice there including one from Doug that contains some good points to be considered it might help you little bit.

I'm in a panic, for me I think it's fear of the unknown, meaning fear of not knowing if I will be diagnosed. I don't know how much time you spent on these forums, I spent quite a bit. And one thing I do know is while I'm afraid of getting the cancer, the odds are pretty good that if i do, it's not going to end my life I'm not going to have to say goodbye to my kids. Focus on that if you can.

I wish You only positive thoughts from here and good luck with your situation.

Post Edited (Pratoman) : 4/15/2013 7:12:32 AM (GMT-6)

Posted 4/15/2013 1:45 PM (GMT 0)
Hi John, and welcome to our little corner of the world. You have come to a good place with immeasurable help and knowledge from those that have "been there, done that" with respect to being told we have PCa, learning about the beast, deciding on a treatment path and moving on.  Please keep in mind that with your statistics you have time - time to learn about PCa and the various treatment options - so try to stay focused - we've all been where you are now! 

July 9th, 2012 was the day I was told I had PCa - and I was absolutely floored, not ME!  55 years old and in excellent health, very active, no signs - you know, doing the vitamins, watch what I eat, cardio and weights - so not ME!  Looking back I'm pretty sure I went through what is most often referred to as "The 5 Stages of Grief":


Denial — "I feel fine."; "This can't be happening, not to me."
Anger — "Why me? It's not fair!"; "How can this happen to me?"
Bargaining — "I'll do anything for a few more years."; "I will give my life savings if..."
Depression — "I'm so sad, why bother with anything?"
Acceptance — "It's going to be okay."; "I can fight it."

I very clearly remember going through the first two, not so much on the "Bargaining" part, a little on the "Depression" and now totally and completely in the "Acceptance" part - especially focused on not losing, period....
 
Forums such as this is a great place where you can learn from people that have and are going through what you are.  You'll also want to do as much internet research as you can - but be prepared as the amount of information out there is mind-blowin. When I was at your point in my journey I encountered the "paralysis by analysis" syndrome as I was spending several hours a day doing all of the research and reading as much as I could - but that's o.k. as it will put you in a better place in terms of deciding your choice of treatment. 

There are a number of great books out there as well - Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer" and Strum and Scholz' "Invasion of the Prostate Snatchers" are two that I found incredibly helpful during that part of my journey.

You mentioned you've got an appointment with a surgeon - you should also talk to and if possible meet with as many of the medical experts in the different treatment approaches as you can.  When you do, be sure to ask for their specific outcomes post treatment - % regression free, continency (and have them define what "continent" means - to you and I it means NO issues, while others may qualify that with "only one pad per day" or "only when straining;" same goes with ED.  They all have these statistics and if they say they don't or are unwilling to share that would be a cause of concern for me.

With your stats you may also want to learn more about Active Surveillance; while it's not for everyone again it's just another potential option in the world of PCa.

If you could let us know where you call home, there may be guys/gals out here that have seeked out medical professionals in your neck of the woods which would be helpful as well.
 
We are all out here to help - my very best wishes to you.

Posted 4/15/2013 1:48 PM (GMT 0)

The first thing you have to understand is that right now you have “low risk” prostate cancer.  I say right now, because until you have your prostate removed you won’t know exactly what you have.  The odds of upgrading to a higher grade of cancer are about 30%.   But since you have such a small amount of it on biopsy you probably will stay low grade.  So you are off to the best possible start there is.

Now having said that, I went through exactly what you are experiencing when I was diagnosed.  I was 42 with 2 children, 2 years old and 7 years old.  I thought I was going to die. I had panic attacks and could not sleep for about a month.   It took me about 4 years to understand that Gleason 6 prostate cancer is a completely different type of prostate cancer.  You have gotten lucky as crap if you stay organ confined Gleason 3+3=6.  I have read study after study after study, and looked at survival rates from everything I could find on Gleason 6 prostate cancer.  I will tell you that the worst mortality rate I have been able to find for Gleason 6 prostate cancer was 1 out of 3756 after 15 years of follow up.  That is a 99.97% survival or 3/10 of 1% mortality.  I also recently read a 30 year follow up study that had no deaths up to 30 years out.  Believe me when I say, you have a much greater chance of dying from about 100 other things in the next 15 years.  All of which, like me, I am sure you weren’t worried about before this and still aren’t.

I am not sure what you have read that showed you different outcomes for people with the type of prostate cancer you have been diagnosed with.  I have not seen this.  Everyone I have read about online with organ confined Gleason 6 have all done very well.  Nobody has died…  Your only concern is being upgraded to a higher Gleason score after surgery, if that is what treatment you choose.  If you stay organ confined Gleason 6 you can pretty much put your fears of dying from prostate cancer to bed.  Being classified as a Gleason 6 today is somewhat different then it was previously to 2005.  So you have to take that into account when reading survival on rates on some of these older studies.   That is when they determined that some Gleason 6 prostate cancers should be a higher score then they would today.    Which might account for the 3/10 of 1% mortality I noted above.

So, you are off to the best possible start there is.  Yes you have cancer, but not only is it probably a non-aggressive cancer, but it is also in an organ you can live without.  I went through the same downward spiral and range of emotions you are going through.  The worst thing about cancer is that it brings the fact that we are all going to die someday into a very definite reality. 

I know it’s hard to do at this stage, but try to relax.  Like I said you are off to the best possible start there is.  You will see your grandchildren and I mean even from your 6 year old.

Your knee and hip pain isn't the cancer.  I went through the same thing.  I thought every pain I had was from cancer.  You'll get over that as well.....

 

Dx @ 42 PSA 2.76 GS6
open RP 10/08
pT2 Organ Confined GS6
4 Year PSA <0.03

Post Edited (ChrisR) : 4/15/2013 7:51:07 AM (GMT-6)

Posted 4/15/2013 1:52 PM (GMT 0)
Thanks everyone. I really mean it, thanks.

I have never made friends easily but the genuine concern and support I have already received from this forum makes me glad I reached out to you guys and gals.

I don't know what the future holds but I know I am already changing. My priorities have shifted and I just love my family more than ever. Somethings have changed and will never be the same again. I used to postpone Dr. Appoints in favor of meetings at work. No more. I used to get irritated when my youngest would grab my ankle and want to play. No more. The list goes on. No more.

I don't mean to wax melancholy but I have to get it out somehow. My wife is grieving too and I need to keep her reassured and uplifted. Her presence makes me feel better. I am fortunate in that regard.

My pastor sensed something was wrong with me so he reached out, so I'll talk to him later this week.

I'll get through this and will commit to helping those who come behind me. I already owe all of you a debt of gratitude.

More later

Thanks again,

John

Post Edited (CharlieHorse) : 4/15/2013 7:56:19 AM (GMT-6)

Posted 4/15/2013 1:58 PM (GMT 0)
john,

ask yourself this question. are you a man of logic supported by facts? or are you a man that bases his decisions by emotion only?

you do have PC, yes. you have fairly low PSA. you are at the lowest level of PC at a Gleason 6. the number of positive cores was low - 2. the amount of cancer in the positive cores was very low.

the pains you are feeling, the chances of them being cancer related, is probably less than 1%.

these are your facts. other than technically having cancer, I see nothing there to generate that much fear, panic and worry.

not trying to belittle or downplay your situation, just want you to re-group and look at the facts.

fear, worry, panic, and anxiety are all non-productive emotions, none will help your situation.

what will help? knowledge - of your true situation, your treatment choices, and most important - acceptance of your situation, your new reality. with these in place, you can move on with calm and assurance that you really are alright.

if you feel depressed, perhaps you need to be on short term anti-depressant, no shame or harm there, talk to your doctor. if you are consistently not getting good sleep, talk to your doctor about being on a short term sleep aid. these are things you control, and can change by talking to your doctor.

and finally, and I wish I could elaborate, but we can't here on this subject, is faith. if you are a man of faith, this is the best time of your life to draw upon that asset. enough said about that.

please think about these things I wrote you, I say them out of concern and kindness, and I say them out of first hand experience.

look at my signature, I would never have made it this far with all I have been through, and still going through, had I ever allowed myself to freak out and panic.  plus I have gotten some pretty good support from the guys and girls here at HW PC over the years.

my best to you, never give up hope, fight the fight

david in sc

Post Edited (Purgatory) : 4/15/2013 8:01:42 AM (GMT-6)

Posted 4/15/2013 3:32 PM (GMT 0)
purg: on the button
Posted 4/15/2013 3:42 PM (GMT 0)
When my DH got his diagnosis, we had a rough week until we met with his Uro. During that time we found this site, read Dr. Walsh's book, cried a little, and did a lot of research.

After meeting with Uro and getting the biopsy report, as well as his recommendations, we felt so much better. My DH's stats are very similar to yours other than his age. I don't get why your Uro handled you the way he did.

His Uro recommended AS or seeds if he couldn't handle knowing he had cancer. He also set up an appointment with a RO for us. He was originally going to do AS until he met with RO who convinced him he wouldn't wait for treatment based on his age. His brachy is scheduled for next month.

Good luck with your research and your decisions. From everything I have read, you have every reason to be optimistic for your options and your future.
Posted 4/15/2013 4:00 PM (GMT 0)
John,
What the others have said is correct; there is no way you are going to die from what you have. You are much more likely to die of a heart attack or an auto accident. The only way to combat fear of the unknown is to get knowledge about what you are facing. Once you understand the nature of your disease you will understand that you have nothing to fear. I would strongly recommend "Invasion of the Prostate Snatchers" by Dr Mark Scholz as it is the best reference on "low risk" prostate cancer. There is a very good reason that what you have is called "low risk". 50% of men your age are walking around with what you have, most all don't know it and never will.
Posted 4/15/2013 4:23 PM (GMT 0)
C'Horse:  As Purg mentioned, if you are finding the anxiety difficult to deal with, you might want to talk with your doctor about a medication that could help with that.  There are some SSRIs that can help with both anxiety and depression, and there are some other medication options.  Best wishes, Medved
Posted 4/15/2013 4:30 PM (GMT 0)
CharliHorse,

Welcome ,sorry you have to be here but we all share the same thing and the best thing is we're all here to talk about it .You are in the norm , everybody reacts different ,but is definitely a shock and needs delicate attention . All the posts here are all good but only you know how to utilize this information and make I work for you.I feel I was in too much of a hurry to be rid of cancer and maybe should have seen more than one URO but as you see on my sig where I'm at, it is gone and I have much to be thankful for as others have said.One thing that has given me much balance is Tai Chi , it is somewhat like Yoga but not as physical it has a way of relaxing you and teaches you how to use energy within ,in good way .I do it daily and is part of my life, I was freaking out when my Uro was late for my surgery so I used what I learned from TC on relaxation and the anxiety became much less. Relaxation is key to any healing! Take you time ,get multiple opinions and God Bless !

gams
Posted 4/15/2013 4:46 PM (GMT 0)
Such a nice, well thought out, apt posts from all. Purgatory, I really sense a subtle, but palpable, no pun intended, strengthening of spirit in your post. Its delightful, absolutely.
Posted 4/15/2013 5:43 PM (GMT 0)
All,

I so appreciate all of the wisdom and words of encouragement you all have shared. You've talked me off the ledge for now. This is new territory for me and I'm struggling as you can see. Your support really means a lot.

I live in Atlanta, GA. and my Uro is at Emory University Hospital and so is the surgeon I'm scheduled to see next week. Emory is renowned for a lot of things but I don't know how good their prostate cancer programs are. It would be great if I could be treated there b/c I get the most bang for my insurance bucks there but I will go where ever I have to to find the right doctors. If anyone knows of top notch ROs and surgeons in Atlanta, please let me know.

We also have a ProstRcision center here in Atlanta. I've heard good things about them so I may talk to them too. I'm scheduled to see my PCP on the same day as the surgeon so I'm sure she'll have some other suggestions for me as well.

I WILL PRAY FOR RECOVERY AND RESTORATION FOR ALL OF US!

John redface
Posted 4/15/2013 8:58 PM (GMT 0)
What do you mean we talked you off the ledge for now? very revealing, Charlyhorse, now get over yourself for goodness sake.
Posted 4/15/2013 9:08 PM (GMT 0)
Logoslidat,

"talking someone down off the ledge" is a figure of speech for helping someone calm down when they are feeling desperate. In this case it is self-deprecating humor in that he is exaggerating the depth of his emotional problems with which he is thanking us for helping.

You do find the most peculiar things to comment on sometimes...
Posted 4/15/2013 10:11 PM (GMT 0)
Charlie Horse,

I am so sorry that you have been diagnosed. Clearly was one of my worst days. While you have PCa, like others have said, you have very treatable cancer. There was just a great study done deliberating if G6 metastisises. Most gurus don't think so. I found the only way I could deal wiht my anxiety was to read everything I could get my hands on. Books, articles, videos, and the great info my brothers here on HW were so willing to share.

If that doesn't calm you down, ask your Dr. for a Rx for a relaxant. You have every right to be depressed, anxious, numb, etc that comes with being diagnosed.

The second link on the PCa link is a great list of resources for you to read up on. My cancer center has a great library and access to the best of the interest websites that specialize in cancer, studies, treatments, etc. so you may want to explore that. I drove my wife crazy by reading as soon as I got home from work to late in the evening or in the early morning to learn more about what I was diagnosed with.

To give you perspective, some of us are Gleason 9's, 8's or 7's that would gladly trade places with you, but we have to deal with the deck of cards we were dealt. While you have cancer, you have a good strain to have and you have many great options for medical treatments. YOu do not have to decide within weeks or months on which treatment or treatments you want to puruse. You have time, use it wisely to educate yourself so you can make the best decision for you and your family.

As you already know, we are all here to help you get through this darn disease. Good luck my friend.
Posted 4/15/2013 10:22 PM (GMT 0)
Perhaps so and I will continue to do so. I am fully aware of the meaning of "talking someone down from the ledge" It was the " for now " that was peculiar, to use your word. " peculiar things" need to be commented on when they are presented in a forum such as this, that consciously or unconsciously imply an indeterminant sentence, i.e. the peculiar phrase. Peter please don't presume to lecture me. There is a place for my posts here, along with a multitude of peculiarities posted, charlyhorses phrase being just one example.
✚ New Topic ✚ Reply
12