What matters when we have PC ?

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goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 9/24/2010 8:46 AM (GMT -6)   
I was struck by a comment as a thread was being locked because of some spirited discussion.
 
"Let's get back to things that matter"
 
Is the only thing that matters when we are diagnosed with PC the quality of the surgeon, radiologist, oncologist, etc. ?  We talk a lot about QOL.  Is QOL good if we are continent and can get an erection?  Is that what makes QOL good.
 
It is my opinion that we are missing a big piece of the puzzle if we ignore the emotional and mental healing that must go on as a part of the PC recovery process.  It becomes obvious to me at least, that there are men on this forum that may have attained some level of healing through surgery, radiation, seeds, Cryo, TFT, etc. etc., who have not had a good emotional and mental recovery.
 
It is usually evidenced by posts that have anger and bitterness woven into them.  They are argumenative, and generally don't agree with much.  Some have a woe is me tone to them.  I'm going to die any way, so what's the use.
 
Maybe we need a way to express how we are dealing with our PC from our emotional aspect, without the fear of offending someone because we mentioned religion, or yoga, or meditation, or satanic rituals.  I for one, am curious how other men are handling their fears, their depression, anxiety, whatever.
 
It matters to me, and I think it is very important.  If I am in a healed physical state, and walking around crying, or sitting at home because I can't face life, I'm not sure that life is good for me.
 
How can we do this and still keep the spirit of the forum ?
 
Goodlife

NEIrish
Regular Member


Date Joined Aug 2010
Total Posts : 245
   Posted 9/24/2010 8:56 AM (GMT -6)   
Beautiful post and one very appropriate at this point in my husband's recovery. A thread entitled "GFMMH" (good for my MENTAL health) would be a great way to start this sort of recovery. Emphaszing the positive, listing the things that are working for QOL. Your idea, Goodlife - you go first!
Husband 60yrs., no symptms: PSA 10/04 2.73, 12/06 3.64, 5/09 3.9, 10/09 4.6, 1/10 5.0w/ free PSA 24
6 core biop 4/1/10 path rept: rt mid: adnocarc. G=3+3, 5% of core; R apx v. susp. minute ca, R base bnign w/ mod. atrophy, L side atrphy only; 2nd opnion JH confrmd
MRI - 15mm nodule
BiLatRP surg 7/6/10, path: T2c, nodes, sem.ves, extra caps. neg., adenoc both sides G=3+3 cntinent, Viagr-8/27 ED

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 9/24/2010 8:56 AM (GMT -6)   
Goodlife...I will come back to this later...I think you are on track to something and need to give it some thought. I am very optimistic so I don't have those fears...but my wife is just the opposite. So I want to think on it before injecting my thoughts.
You are beating back cancer, so hold your head up with dignity

Les

Signature details in Sticky Post above - page 2

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/24/2010 9:13 AM (GMT -6)   
Goodlife, you pose an interesting question and one that is not easily answered or has one correct answer.

There are two words used frequently on this forum: recovery and healing. They are not always the same thing but often can be depending on the mental outlook of the individual.

You've cited those who are angry over their diagnosis and the change it has had on their lives. Anger is often the result of fear - I know that when I am very afraid, I tend to get angry.

We all want good quality of life...I think the difference is that some of us are willing to work for it and some of us want it given to us. It's kind of the old the glass is half full/the glass is half empty syndrome...it all depends on how the individual is "built" and how they choose to view the world. Sadly, for some people being "cured" of their disease is not enough.

While we cannot change what has happened in our lives, we do have the power to change how it affects us. It's a conscious choice made by every person: do we rejoice in each day and in every person in our lives, or do we sit in a corner and chew our nails over something we have no control over?

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 9/24/2010 10:07 AM (GMT -6)   
Good post

My first thought was that I was reminded of the old man who, when asked what he liked most, he answered "Waking up."

We have been through a lot, we may have a lot to come, but taking each day at a time and being grateful for that is a start.

I also think it is important to get on with other stuff. To try to force yourself not to think about PCa at all. To perhaps have some PCa-free time. You nay only be able to start with a few seconds per minute or a few minutes every hour, but if you can get occupied you may suddenly find you are getting through whole chunks of the day without it rearing its ugly head. (Two hours at a movie is a good way to start tricking your brain. As is one of those "you-can't-put-it-down" books) I also got a break by spending hours search the web for photos of butterflies for a friend's daughter doing a school project. having half a dozen friends round to do and talk about normal stuff also worked wonders.

It was an attempt to get away from PCa overload was part of my reasoning for staying away for the Forum for several weeks. And the attempt worked. I got my brain to concentrate on work and hobbies and reading and tv and being with my wife and realising that. "Hey today it really does not matter if I do not surf the net etc to find out what the latest thinking is on RT or side-effects or ED or whatever."

And as ever we are all different and will find different ways to cope, but I think we all need to find something to help us with the bigger picture in addition surgeons etc.

So to practice what I preach I probably now won't look at the forum for a day or so.

Alf

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 9/24/2010 10:14 AM (GMT -6)   
Good topic,
Speaking for myself (as a guy that took early retirement 4 years before diagnosis) if I sit around the house I dig myself into a pit of anger thinking about my missed chance at a diagnosis or fear of the positive margins and odds of future BCR. I have recovered from surgery, my healing is ongoing and is of the mental type.

The way I deal with it is I stay active, I volunteer at a local no-kill shelter, go 4-wheeling every chance I get, work on the property etc. I'm also a member of a group that deals with another potentially fatal disease that has a pretty good method of dealing with bumps in the road of happy destiny (big hint).

I accept that there is a very good chance I'll die of this disease given my pathology and age, the real bummer would be if I spent the years I have left sitting on a pity pot and missed all the fun life has to offer.

It would be great to have a thread where we could speak of other things which help, but with the anger some people have for various aspects of some people's recovery it would quickly become another cancer eating at the whole forum. People just can't keep their feelings locked in one thread.

Gotta run, got a lift to put on my new expedition rig ('98 Cherokee)
Cheers
Dave in Durango CO
Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, Tumor focally present at left resection margin, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04....... 06-07-10 PSA <0.04..... 08-03-10 <0.04
05-03-10 1 week without pads
06-28-10 ;-)

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 9/24/2010 10:38 AM (GMT -6)   
I dunno, it would seem to me that if a given post took on an overly religous overtone, to the extent that others didn't like it, they could choose to no longer participate in that given post. If someone injected religion into EVERY post, then it is they that needs to be dealt with. I hesitate to join the train of thought that suggests that some heal better, emotionally of physically, because someone tried harder or wanted it more, or even the work "choose".. for each cancer is different, each of us is in a different place in our lives, and I trust that NONE of us chose to want to even know about this website.

A 5+4 in a 40 year old guy has different implications than a 3+3 in a 76 year old man. There's just no denying it. We cant talk about it as if it is one cancer - "ours" to share.. the cancer is unique to us, the "experience" is what we offer each other here.

I am humbled by the people, extended family and old friends that have come out of nowhere to make sure that I know they are thinking of me and supporting me. I'm not an overly religious man myself, I consider the mirror my religion, if I can look into it with my head held high, i'm doing ok. But nearly EVERY ONE of these people who have and continue to reach out to me tell me the same thing "I pray for you often". While that likely makes them feel better than me in a religious sense, it certainly makes me feel good that they care. Yet we're not going to allow "religion" to have ANY part in any of the dialog? I dunno.

That said, we have loving wives on here who have to listen to grumpy old men talk of sex and body parts all the time. I think we have a pretty tough crew that can handle just about anything. Good luck all (Was going to say GxD Bless, but until know I didn't realize I couldn't).
First ever PSA test Jan 2010 @ 51 years old. 4.0.
Digital exam in March 2010 showed 1 side hard, other soft.
Biopsy, positive in 3 of 12.
Davinci @ Boston Medical Center, May 17, 2010.
Was suggested prior to it was likely contained.
June 1 advised 3+-4 was really 4+3 per pathology. Pos margins.
Listed on patholgy as PT3, but with extraprostatic extension,
microscopic invasion of the bladder neck, PT3A is perhaps the case.
Catheter removed June 1.. 1 pad/day, doing ok. ED, but not in rush.
Sore as heck down there, but doing much walking with my wife.
To meet with my Uri (1st meeting since) June 17 - 1 mo point, to discuss.
BMC already has me setup to meet with radiology.
Felling a little better each day. Cant tell if my expectancy just went from 10-15 down to 5-7, the information out there appears to be all over the place. I WILL NOT radiate my insides to the point of being a veg for the sake of a few years. QOL is primary to me. Selfish I guess. I pray for all of you as I do for myself, but must remember that i've had a pretty good 50+ years, and know others who have lost their children to disease.. so I dont have the nerve to complain! Update 7/14/2010: When I tried changing this sig a few days after creating it, system was broken. My new rad oncologist are discussing IMRT.. though he says he can see why waiting a bit and watching the PSA on super sensitive basis might make sense. I am leaning towards IMRT.. thinking is my body is pretty strong now, i'm 51, and if I can rid my body of this while trying to minimize the side effects.. I dunno. No really Good answers. When I said I didnt want radiation to the point of being a veg.. I really meant there is a limit as to where I wish to go in order to realize only a small increase in life expectancy.. and not that I am an unreasonable person. I do, after all, have an obligation to my wife and kids.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 9/24/2010 11:07 AM (GMT -6)   
Goodlife,
You are assuming that the PC made these people bitter and arguementative. I have found that these types of individuals have always had these personality traits and they now just have a different subject. Personalities just don't change.
I spent 6 months in a ward with severly injured young men, most were double or quadruple amputees whose lives were changed in an instant. It was pretty obvious that there were two distinct groups, ones who considered it a new challange to overcome and the others who were full of self pity and now had a built in excuse for the rest of their lives. The injuries didn't cause these, what the person was before the injury determined how he reacted to his new situation.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/24/2010 11:36 AM (GMT -6)   
John T, that was exactly what I was trying to say! Excellent response...and this is a great topic. Will be interesting to see how others weigh in - hopefully we can keep this one going.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3741
   Posted 9/24/2010 12:04 PM (GMT -6)   
John T,

Good observation. I would venture to guess some of the grumpy sorts were grumpy before the diagnosis.

As a point of reference I was a mental case before PCa. I figure, pee pads or no, I'm still one.
An understanding spouse helps a lot. A LOT!

Jeff

Thank you dear. I promise I will clean the kitchen scale now.

gold horse
Regular Member


Date Joined Nov 2009
Total Posts : 360
   Posted 9/24/2010 12:47 PM (GMT -6)   

Goodlife very nice topic.I remember my very first post,I mentioned God,and I was accused by few

of many things.like one of our brother said whom ever is a grump will always be I grump and they know who they are. yeah yeah tongue


kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 9/24/2010 12:48 PM (GMT -6)   
This is the attitude I make my best efforts at;

God grant me the serenity to accept the things I cannot change;
courage to change the things I can; and wisdom to know the difference.

<Edited the Reinbuhl prayer>
No problem TC. I apologize for the post, but I was just trying to be helpful to others.

However, here's the link if anyone wants to check it out.

http://www.cptryon.org/prayer/special/serenity.html

I sincerely hope that this does not offend anyone, but I make no apologies for my beliefs. If it bugs ya, then skip on past it. That's what I do.

I have accepted that I have PCa. This I cannot change. What I can change is my lifestyle...diet, exercise, weight, and becoming educated about prostate cancer, so that I will be prepared to know the differences between what I can change, and what I cannot.
I'm eating smarter, I've lost 30 lbs (6'2", and 197), and moving on with life. I still have a beautiful, sexy, loving, and supportive wife. I still have two children, and two grandchildren. There is still grass to mow, peas to pick, and trash to haul off. Life goes on.
As Dr Meyers states in his book, using a golf analogy; We can only play the ball from where it lies. So to is PCa.

I cannot become solely focused on what I coulda, shoulda done ten years ago, or two years ago. I am where I am, and forward is the only path. Let's all hope for tomorrow and what beauty, joy, and happiness it will bring.

I can promise almost everyone, that there is someone else in this world who would swap places with us in a heartbeat.

k

Moderator message:
kbota I edited out the Reinbuhl prayer as it likely goes farther than what will keep the peace here. I do not disagree with it at all but I would like to try to keep a thread like this from argument and being locked. I believe that it serves the better good to have such an open discussion that does not straddle the line of what is or isn't over the top as they say. Please forgive me I you disagree. I invite you to write to me offline if you wish to discuss this. ~ TC-LasVegas
Age 57 at Diagnosis
May, 09 PSA 2.26
June, 10 PSA 3.07 Free PSA 18%
Met with Uro, DRE +
June, 10 Biopsy, 7 of 12 cores, up to 60%, 4+5=9
July 21, 2010 - RRP
Nodes negative
Vesicles negative
tumor contained in capsule, still 4+5=9
perineural invasion extensive
Aug 5, 10 catheter out
Sept 3, 10 PSA - 0.00 (great big whew)
As of 9/3/2010, I'm 99% continent - only occasional stress incontinence !

Post Edited (kbota) : 9/24/2010 4:14:22 PM (GMT-6)


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 9/24/2010 12:53 PM (GMT -6)   
Great post. After my surgery and pathology report, I was depressed. I remember walking on the beach at S. Padre Island and feeling less than all the other men out there. I was wearing a pad and with 100% ED, I was a defective product. Over the next few month I became continent, trimix took care of ED and I resumed my normal life. I still have anxiety before every PSA test and wonder when will my Gleason 8 show its ugly head again. I don't believe I'm depressed but PC is always in the back of my mind. It never really goes away.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 5 months
2 months PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005

JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 9/24/2010 2:49 PM (GMT -6)   
Goodlife,

Very thought provoking....one of the best. Thanks.

English Alf,

I too fear becoming addicted to PC. Have been taking more days off from HW lately...lot's of fish out there still to catch.

John T,

Great point. Everyone is afraid at some point in their lives....it's how they deal with that fear that defines their ongoing QOL.

Joe
Age 67 PSA 4.5 Biopsy 9/4/09 Bostwick Labs 5 of 8 sections (5 of 11 cores) positive-Gleason 3+3=6 Stage T1
BT on 12/11/09 (84 seeds of Palladium 103) Home same day/no catheter. Some burning, frequency, urgency for 6 weeks. No incontinence, mild ED. Normal activity within 3 days. 25 IGRT sessions ending 3/22/10 - some fatigue until 30 days after last treatment. PSA on 5/26 - 0.1 PSA on 9/1 - 0.1

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 9/24/2010 3:56 PM (GMT -6)   
Personally, i'm doing ok. I've got a ways to go, a lifetime in fact. But I must say, I am surprised at the tone of some...

a double amputee feeling self pity, and you mock them? What is wrong with you?

Next time you tough guys shed a tear, or someone you love gives you a hug, let me know so I can make note that YOU graduated to having human emotions.

WOW!
First ever PSA test Jan 2010 @ 51 years old. 4.0.
Digital exam in March 2010 showed 1 side hard, other soft.
Biopsy, positive in 3 of 12.
Davinci @ Boston Medical Center, May 17, 2010.
Was suggested prior to it was likely contained.
June 1 advised 3+-4 was really 4+3 per pathology. Pos margins.
Listed on patholgy as PT3, but with extraprostatic extension,
microscopic invasion of the bladder neck, PT3A is perhaps the case.
Catheter removed June 1.. 1 pad/day, doing ok. ED, but not in rush.
Sore as heck down there, but doing much walking with my wife.
To meet with my Uri (1st meeting since) June 17 - 1 mo point, to discuss.
BMC already has me setup to meet with radiology.
Felling a little better each day. Cant tell if my expectancy just went from 10-15 down to 5-7, the information out there appears to be all over the place. I WILL NOT radiate my insides to the point of being a veg for the sake of a few years. QOL is primary to me. Selfish I guess. I pray for all of you as I do for myself, but must remember that i've had a pretty good 50+ years, and know others who have lost their children to disease.. so I dont have the nerve to complain! Update 7/14/2010: When I tried changing this sig a few days after creating it, system was broken. My new rad oncologist are discussing IMRT.. though he says he can see why waiting a bit and watching the PSA on super sensitive basis might make sense. I am leaning towards IMRT.. thinking is my body is pretty strong now, i'm 51, and if I can rid my body of this while trying to minimize the side effects.. I dunno. No really Good answers. When I said I didnt want radiation to the point of being a veg.. I really meant there is a limit as to where I wish to go in order to realize only a small increase in life expectancy.. and not that I am an unreasonable person. I do, after all, have an obligation to my wife and kids.

reachout
Veteran Member


Date Joined May 2009
Total Posts : 739
   Posted 9/24/2010 4:38 PM (GMT -6)   
My brothers.  We're all in the same boat, though some of our boats float better than others.   But let me tell you, I would much rather be in the PC boat than in others.  I was just informed that a family member has a brain tumor, and the prognosis of that is very poor.   So what matters when we have PC?  That the majority of us have many years, maybe an entire natural lifetime, to look forward to.  That we have options, so many that it makes our head hurt.  That even if some of us piss on ourselves or can't get it up we can ***** about it and try, try, again.  Man, I sure don't want to change boats.
 
 

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 9/24/2010 6:27 PM (GMT -6)   
goodlife said...
I was struck by a comment as a thread was being locked because of some spirited discussion.


"Let's get back to things that matter"



Is the only thing that matters when we are diagnosed with PC the quality of the surgeon, radiologist, oncologist, etc. ? We talk a lot about QOL. Is QOL good if we are continent and can get an erection? Is that what makes QOL good.



It is my opinion that we are missing a big piece of the puzzle if we ignore the emotional and mental healing that must go on as a part of the PC recovery process. It becomes obvious to me at least, that there are men on this forum that may have attained some level of healing through surgery, radiation, seeds, Cryo, TFT, etc. etc., who have not had a good emotional and mental recovery.



It is usually evidenced by posts that have anger and bitterness woven into them. They are argumenative, and generally don't agree with much. Some have a woe is me tone to them. I'm going to die any way, so what's the use.



Maybe we need a way to express how we are dealing with our PC from our emotional aspect, without the fear of offending someone because we mentioned religion, or yoga, or meditation, or satanic rituals. I for one, am curious how other men are handling their fears, their depression, anxiety, whatever.




Goodlife


Since I'm the only guy here who had TFT then this is a personal attack on me. I didn't know goodlife was a shrink for he's diagnosed me with not having a good emotional and mental recovery after my PCa treatment.

Post edited as a continuance of an attempt to put a religious or political flavor to these posts.

I'll be the bigger man here and let the personal attack go for I am the more emotional and mentally stable of we two goodlife it seems. You have never ever saw me questioning any ones emotional and mental recovery after fighting cancer, post treatment.

Post Edited By Moderator (James C.) : 9/24/2010 6:02:21 PM (GMT-6)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 9/24/2010 6:45 PM (GMT -6)   
Ziggy,
I think you are taking this way too personal; ease up a little.
Bob,
As one who has walked in their shoes I don't pity anyone with a disability. I respect those that have overcome their disabilities and not used them as an excuse for their personal failures. Pitying someone or self pity is the highest degree of disrespect.
JT 

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 9/24/2010 9:01 PM (GMT -6)   
John.
With all due respect;

I lived for 4 years in a hospital school in Canton Mass, unable to walk.. awaiting double hip replacements. I lived with kids who, unlike myself had REAL problems.

While in that hospital, as an 11 year old kid, I tried convincing the medical staff that my tummy ache was more than "whining".. hours later they rushed me to ER and performed an emergency apendechtomy.. which, ironically, is so noted on my pathology report for my prostate operation - noting that the internal scarring from that operation, 40 years prior, created serious issues for my urologist during the operation.

I've sat in a mangled car for over an hour while they tried to cut it in half to get me out.. the resultant broken pelvis and compound fracture of my ankle touching my knee impacts me still.

So John, I am not asking for your pity, and I certainly doubt that YOU have walked in "THEIR" shoes. The next time you DONT hear a fellow prostate cancer survivor reaching out in this forum for help, you might ask yourself if their situation was worse than your's, if you are alive and they have passed, and then tell us all how you didn't care because it would be "disrespectful".

You have walked in NOBODY'S shoes but your own buddy. Any self gratifying thought on your part that you have is pitiful in itself. In my opinion. And for the record... i'm as stron as any of you here, so i'm not saying this so I can get pity!!!
First ever PSA test Jan 2010 @ 51 years old. 4.0.
Digital exam in March 2010 showed 1 side hard, other soft.
Biopsy, positive in 3 of 12.
Davinci @ Boston Medical Center, May 17, 2010.
Was suggested prior to it was likely contained.
June 1 advised 3+-4 was really 4+3 per pathology. Pos margins.
Listed on patholgy as PT3, but with extraprostatic extension,
microscopic invasion of the bladder neck, PT3A is perhaps the case.
Catheter removed June 1.. 1 pad/day, doing ok. ED, but not in rush.
Sore as heck down there, but doing much walking with my wife.
To meet with my Uri (1st meeting since) June 17 - 1 mo point, to discuss.
BMC already has me setup to meet with radiology.
Felling a little better each day. Cant tell if my expectancy just went from 10-15 down to 5-7, the information out there appears to be all over the place. I WILL NOT radiate my insides to the point of being a veg for the sake of a few years. QOL is primary to me. Selfish I guess. I pray for all of you as I do for myself, but must remember that i've had a pretty good 50+ years, and know others who have lost their children to disease.. so I dont have the nerve to complain! Update 7/14/2010: When I tried changing this sig a few days after creating it, system was broken. My new rad oncologist are discussing IMRT.. though he says he can see why waiting a bit and watching the PSA on super sensitive basis might make sense. I am leaning towards IMRT.. thinking is my body is pretty strong now, i'm 51, and if I can rid my body of this while trying to minimize the side effects.. I dunno. No really Good answers. When I said I didnt want radiation to the point of being a veg.. I really meant there is a limit as to where I wish to go in order to realize only a small increase in life expectancy.. and not that I am an unreasonable person. I do, after all, have an obligation to my wife and kids.

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 9/24/2010 9:05 PM (GMT -6)   
By the way, if dying, sad, confused, isolated and scared peiople can't find a little pity here, where do you suggest they go instead, a bottle of Jack, a bag of crack.................?
First ever PSA test Jan 2010 @ 51 years old. 4.0.
Digital exam in March 2010 showed 1 side hard, other soft.
Biopsy, positive in 3 of 12.
Davinci @ Boston Medical Center, May 17, 2010.
Was suggested prior to it was likely contained.
June 1 advised 3+-4 was really 4+3 per pathology. Pos margins.
Listed on patholgy as PT3, but with extraprostatic extension,
microscopic invasion of the bladder neck, PT3A is perhaps the case.
Catheter removed June 1.. 1 pad/day, doing ok. ED, but not in rush.
Sore as heck down there, but doing much walking with my wife.
To meet with my Uri (1st meeting since) June 17 - 1 mo point, to discuss.
BMC already has me setup to meet with radiology.
Felling a little better each day. Cant tell if my expectancy just went from 10-15 down to 5-7, the information out there appears to be all over the place. I WILL NOT radiate my insides to the point of being a veg for the sake of a few years. QOL is primary to me. Selfish I guess. I pray for all of you as I do for myself, but must remember that i've had a pretty good 50+ years, and know others who have lost their children to disease.. so I dont have the nerve to complain! Update 7/14/2010: When I tried changing this sig a few days after creating it, system was broken. My new rad oncologist are discussing IMRT.. though he says he can see why waiting a bit and watching the PSA on super sensitive basis might make sense. I am leaning towards IMRT.. thinking is my body is pretty strong now, i'm 51, and if I can rid my body of this while trying to minimize the side effects.. I dunno. No really Good answers. When I said I didnt want radiation to the point of being a veg.. I really meant there is a limit as to where I wish to go in order to realize only a small increase in life expectancy.. and not that I am an unreasonable person. I do, after all, have an obligation to my wife and kids.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3741
   Posted 9/24/2010 9:20 PM (GMT -6)   
Ziggy,

If I didn't mention TFT,of which I really just learned about the other day in Tatts post, I would be accused of not recognizing someone's treatment mode. I was trying to include us all.

I am sorry that you think I was talking about you in my attempt to be inclusive.

We all have some issues regarding PC. at least that is my opinion. I am not attempting to be a shrink, nor am I accusing anyone of anything.

I just think I need to be able to talk about subject matter here without being accused of proselytizing, making personal attacks, promoting religion, whatever the beef is.

I have no beef with anyone on HW. I am getting tired tho of not being able to say certain things which may be thought to be in violation of rule #11. We are all grown men here. If you don't like or agree with what I or other HW members post, why can't you just ignore it ? Why is it that guys feel the need to throw rocks and ridicule men who are talking about what's important to them ? How I cope with a Gleason 9, and no prostate, and ED is very important to me. There are those on here that may like to hear how men have coped with the emotional and mental side of this disease. Their explanation may include religious talk. No one is trying to convert anyone. They are talking about what is important to them. Why do you feel you have to accuse them of trying to convert you in some way ? Are you that unsure of what you believe that someone may inadvertantly change your mind ? I think not.

Let's all just agree that we will disagree on some areas and ignore the threads we don't want to participate, or at the least, insert our two cents worth without blasting the other posters. This site would be a better site. Your claims of allowing certain topics in here would destroy it actually serves to weaken it in my opinion.

I know this is a long post, but the long and short is that we need to be able to talk about all aspects of our PC. I really believe that we can do it on here without starting WWIII. We all need to respect each other, and allow each other to just talk, without fear of hacking someone off.

Goodlife on Jeff's computer enjoying the GFMPH get together

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3741
   Posted 9/24/2010 9:27 PM (GMT -6)   
John,

I cannot disagree with you. I would only add that even non-grumpy guys like myself get grumpy over this stuff.

I have found personally that I can cope with it by stepping back and looking at a bigger picture.

I think even a grumpy guy could learn a technique or two from others when he is more grumpy than usual.

Goodlife from Jeff's computer
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%. 8/9/10 Now at 0.24 still 90%
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. "There must be another issue."
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 15 "Short sphincter"
7/15/2010 one year: 2 pads per day. 140 ml/day, dry in bed.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04
1/14 6 months - 0.05 (Siemens Centaur)
4/14 9 months - 0.04 (Siemens Centaur) and <0.01 (Roche ECLIA).
7/12 1 year - 0.03 (Siemens Centaur, direct chemilum); <0.01 (Roche Cobas 601 ECLIA)

Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 9/24/2010 10:19 PM (GMT -6)   
Worried Guy said...
Ziggy,

If I didn't mention TFT,of which I really just learned about the other day in Tatts post, I would be accused of not recognizing someone's treatment mode. I was trying to include us all.

I am sorry that you think I was talking about you in my attempt to be inclusive.

We all have some issues regarding PC. at least that is my opinion. I am not attempting to be a shrink, nor am I accusing anyone of anything.

I just think I need to be able to talk about subject matter here without being accused of proselytizing, making personal attacks, promoting religion, whatever the beef is.

h


Whoa!!!! So you're both goodlife and worried guy? I mean it was goodlife who started this thread mentioned TFT and who you are now answering as worried guy. Why do you feel the need to have multiple names in a PCa cancer forum? In respect to James C I will not continue to have a discussion of religious postings in this forum.

But I am right in that bringing in inflammatory subjects of religion and/or politics will destroy this forum as they have other forums and newsgroups. One thing that happens early on are sock puppet posters. That's where an individual goes by a number of different names as to increase his "supposed" support there worried guy/goodlife

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 9/24/2010 10:23 PM (GMT -6)   
Ziggy, goodlife is using Worriedguys computer and his PCa forum access to post here, so although it appears as coming from worriedguy, it is goodlife who is talking. Goodlife did say at the start of using worriedguys computer, while at the GFMPH weekend, that he was doing so, there should be no confusion as to who is who. I hope.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh
ED continues: Bimix .30cc & Trimix .15cc PRN

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7082
   Posted 9/24/2010 10:23 PM (GMT -6)   
Ziggy,
 
Looks like all the guys at the GFMPH weekend are posting under Worried Jeff's login, with an added "who posted" line at the end.
 
Caught me off guard at first too.
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