Surveillance protocols...

[AdrianB1971]

Please read this article and post here your opinions

http://annonc.oxfordjournals.org/cgi/content/abstract/13/10/1616

[merc]

My opinion

Hello,

Well, I trust CT scans more tha anything else.

This article was interesting, but still... it was just yet another article, which probably contraddicted other articles in the same field.

What I found scary, though, is the number of relapses. I am in surveillance, and I do worry about cancer coming back. This number in this article are telling me that the median relapse percentace is 11.4%, which is a painful number to watch. I could be in that 11.4 percent. In fact, my chances are higher because I didn't have chemo.

I guess it's a good reminder that we should enjoy life.

Merc.

[AdrianB1971]

Hi

merc, you are right. every checkpoint in TC surveillance protocol is like a new, powerful, start of life. Any problems disappeared and are too small than the TC relapse threat. Especialy for me, because the TC relapse is equivalent with DEATH.[I dont see any sense of life living mutilated by the treatment (RPLND and second line of chemo)]. The life is wonderful...but can also be a hell. The quality of life is essential for us, at ours age.
By the way, I'm also very very concerned about the relapse rate !!! Even on this forum I observed there are a high relapse rate.
...yes...I'm afraid....

[AdrianB1971]

me again

I forgot to mention : In case of relapse, I'm decided to try an alternative treatment. Maybe Breuss diet. Who knows....maybe it works If not, I'll go to make a short travel to haven (or hell) and I'll came back in another body, more performant and without programming bugs like now

[Krokar]

Adrian,
I understand your fear about relapse also because tomorrow I have my check date.
But I don't agree with you about relapse=death thinking. We all must be aware that sometimes problems with TC are not solved with one chemo and can be very painfull. I can see a lot of stories of heroic persons which went troug many surgeries, chemos, radiations..., but finally they won.

I believe we should all fight till the end.

[merc]

Not sure...

Hi Adrian,

I am heavily freaked out myself. My life has never been the same... and at the same time, it has been.
I decided that I would never, ever do something I hate doing. And guess what I am doing right now as a job? Something I hate! (Fortunately, only temporary. But still...).

However... I read all of your posts (I am an editor, which more or less means "I remember everything I read, and am also cursed by it"). I must say that I am worried about you - even though I don't even know you.

I have to tell you a secret: you are going to die.
So am I.
So is Anna, my partner whom I dearly love.
So is everybody.

This is very sad. At the same time, it's also... part of life. It's our slice of existence.

Here is another secret: you are likely to suffer a lot in the process of dying. If it's cancer, it will be pain. If it's a car accident, it will be the impact. If it's old age, a number of things will be inflicted upon you. So, a part from a few lucky people, you are most likely going to suffer considerably before dying.
So am I.
So is Anna, my partner, whom I dearly love.
So is everybody (well, nearly everybody).

I am a Buddhist. A lot of people in this forum are Christians. We all believe in something (even if it's the absence of God). In the end, we all live our lives.

I feel (I may well be wrong) that you are living your life in constant, immense fear of treatment again. How long do you spend, every day, worrying about it? How intense are those thoughts?

I can't tell you how you live your life. However, if it's true that you are gonna relapse and get sick again (who knows?), that's *later*.
Now, it's a different story. Now, it's life.

Don't let hypothetical futures destroy your life (I'm using your own words here). Don't let the past affect you.
You are here, now. Do what you want to do.

Right now, you are not dead. Right now, you are not in the middle of immense suffering. Right now, you are not about to die.

Celebrate that.


Merc.

merc, you are right. every checkpoint in TC surveillance protocol is like a new, powerful, start of life. Any problems disappeared and are too small than the TC relapse threat. Especialy for me, because the TC relapse is equivalent with DEATH.[I dont see any sense of life living mutilated by the treatment (RPLND and second line of chemo)]. The life is wonderful...but can also be a hell. The quality of life is essential for us, at ours age.
By the way, I'm also very very concerned about the relapse rate !!! Even on this forum I observed there are a high relapse rate.
...yes...I'm afraid....

[AdrianB1971]

thx merc

Very nice words merc. I'm trying to enjoy the present and sometimes I succeed. But the remember of TC, the terible trauma I had, becoming from a handsome young man, with very great future plans and a lot of girlfriends ....a CANCER survivor, at 34 years, half mutilated(eunuc) and with continously perspective of going thru the hell again and again....as I said...this memory is permanent in my mind, even when I laugh...even when I sleep. Maybe I'm weak, maybe this trauma is the begining of a depresive episod...who knows....Maybe I'm not prepared to live at ANY cost. What is alarming indeed, is the fact that I'm haunted by death thoughts. I steel have moments when I'm waiting to break this nightmare and return to reality where all is like before. Remember : I never had depresive simptoms. IT'S NOT DEPRESION, because if somebody tells me : 'Ok Adrian, you are completly cured and no surveillance is nedeed..so go home and live your life as you want', then all the problems, all the dark thoughts would be ended. I think I'm also ok with testosterone level because I have near normal libido, near normal sex drive and normal hair growing. What is the worst think is the posibility of cancer relapse...whole the life. The continuous threatening of cancer relapse is enough for me to going mad. Simply I feel I dont have enough strenght to fight TC again. I hope and I'm praying to GOD that TC will never return.

And now, according to your advice : 1-2-3+ ...beers and some multiplayer games with my friends . And totmorow.....let to be what the God wants.

All the best

[Mom]

Adrian, I am upset with you. You are focusing on the negative not on the positive. Are you saying if you found a woman you loved and she had only one ovary you would have a problem and dump her? This "half-enuc" stuff is bull@#!&. I read the article on the link and it was alarming. However, numbers are numbers, you can make them be anything you want. With a different cohort you could have different numbers. There is no reason that you can't have the same future you had before TC. You are holding yourself back. It takes more than balls to make a man just like it takes more than breasts to make a woman. And you are one lucky guy because you sure as heck haven't lost your looks!! I pray that you do not have a reoccurrence, and if you do I pray that you will not give up. You will know when it is time to give up, like Andrew, so until that day comes, enjoy your life to its fullest. Mom/Dianne

[nutless1]

Hey Adrian,

living with the possibility of recurrance is really difficult, we each must find our own way.

If it helps and I'm not sure it will, today I am am told that (1 year on from RPLND) the doctors are pretty sure I am 90% cured. I don't know about you but I reckon thats a pretty good position to be in. A 1 in 10 chance it will come back.

Next time you are in a place with a few healthy girls you should feel really sorry for them. It's my understanding 1 in 7 are a breast cancer case waiting to happen.I think they are in a much worse position than you and me.

I really hope you can try to forget about it,never completely maybe, and move on.

One thing you must learn is never to worry about things you have no control over, they will or will not happen wether you worry or not.

Best Wishes.

Mark

[AdrianB1971]

.

'Mom'...thank you very much for the answer. Someone told me : the TC is sometimes 80% a 'mental disease' ! Indeed, if I could completly ignore the TC trauma.....
Maybe a memory reset However, I HAVE to do something because I see all in dark and I'm hopeless. The first steps could be: to accept I'm a TC survival, to accept I'm a CANCER PATIENT [.....CANCER!!!!!] and trying to live as normaly as I can. Nothing can be like before and sometimes I remember the happy days before TC. But...it's our destiny !
At the end : thank you very much and I'll post you the Friday checkpoint results.


Adrian

[Karen]

Adrian,
You say that if you were told you were cured all the problems and dark thoughts would end. I bet they would not end but that you would shift to worry about other potential lurking cancers and illnesses. I've been there, done that. You should seriously consider speaking to a Dr about your feelings...which sure sound like depression to me. That IS something you can take control over and improve your enjoyment of life. I didn't realize how depressed I was was until I finally realized seeking help wasn't a sign of weakness and went to a shrink. When my husband was diagnosed wit TC, I was able to be strong and aggressive with his treatment, look for the positive and be hopeful going forward. Six months ago I would have had a breakdown. Please. please, please don't permit this to take joy out of your life.

[TCLEFT]

Adrian,
I noticed in previous Avatar that you're a Musician. I've been playing guitar since High School and like to Muse a bit. I wrote this after my diagnosis and then about a year later after the death of a friend from colon cancer. Don't you just hate that word! Anyway, I've had a fair amount of demons keeping me awake at night since all of this as well. I'm taking things more day to day now, and as the title states "All Right Now". I'm really going out on a limb sharing what lurks in my brain, so I truley hope in some way it connects and helps. Best of Life to you,
TCLEFT
Here goes:

All Right Now

Ain’t Life a Funny Ride?
It can slide you side to side
Can make your bones shake and rattle
So please be careful on the saddle
Cause the life you once knew
May be departed from you

Still the key here is to adjust
But only as much as you must
It ain’t the cough that carries you off
It’s the coffin they carry you off in
So please don’t be afraid to laugh
It’s wisdom’s truest path

And I can still look around me
I’ve never been a trend setter
It’s bad, but I think it’ll get better
And I can still smell the roses
All the flowers still look pretty
Even when the orchids get sh*tty


And for those who’ve gone before us
A tear goodbye in mournful chorus
With just a moments reflection
To genuflect life’s inspection
So please don’t be afraid to cry
Just don’t waste you time asking why

And I’m still looking around me
Don’t recall ever being first
But it can’t get no worse (can it?)
And I can still place the roses
And though the thorns hurt my fingers
These memories still linger


Ain’t Life a Funny Ride?
It can slam you side to side
But don’t let your demons confine you
While there are those who’ll remind you
Cause the life you once knew
May be departed from you

[Don]

The thought of reoccurence bothers us all!!!! I,m dealing with this also!!! The images of me sitting in a hospital bed , in intensive care ,with heart monitors,TPN,Chemo,Cathader, 4 seperate IV lines,Unable to get out of bed, Weighing 131 lbs(down from 210lbs)being told that my kidney is shutting down and I,m turning septic -Having tubes installed into my kidneys so they could drain-while getting Salvage chemo,blood transfusions and plattlets and being shot-up with 8 mg of morphine per hour, being told buy several surgeons that nothing more could be done for you so where going to start you on anti depressants and more pain meds to make you comfortable(while your dying- Those words weren't spoken but I could read between the lines)-- All of this happened in 1 day while my wife, Daughter(7 at the time) and son 5(at the time) were all in the room with me--My kids kept asking me if I was coming home tomorrow... At the time I didn't think I would ever be going home...the fear of never seeing my wife and kids again truly marked me for life... I think of this daily, several times a day, It scares the hell out of me!!! I can't stand the fact that I might have or get cancer again!!!!!! I also beleive that all of these events gave me the strength to pull through an illness that was beyond the piont of being cured according to the experts!!! I can't do hardly any of the thing I used to do with my kids, I can't be nearly as active as I used to, I was a diver in the US Navy(long before TC)- I can never dive again.. This disease has taken many thing away from me-- I consider myself half the man ,physically, that I used to be, But 10 times the man mentally!!!!! You have to reinvent yourself!!! Live for the things that YOU enjoy and the things that make YOU happy!!! If you have a reoccurence..You'll beat it!!! You already know how to do that!!! And you'll do it again..Not because you want to..Because you have to...Deal with reoccurence when the doctor say " I'm sorry Adrian but you have cancer again". Until you hear the words and this fact is confirmed ,you need to move on from what this disease has done to you... you have already beat cancer , yet you continue to let it ruin your thinking and your life.... It's O.K. to worry--It's human-- I worry because I would have to do High-dose with Bone Marrow because I've already had Salvage and the RPLND.. You have many more options than I have to beat cancer ,IF you need to, in the future.... You need to control your life , Not cancer.... Your right , life will never be the same again--Life is only going to be as good as you make it!!! Best of luck to you!!!! I hope you get good results on Friday!!! If you do that means it's time to move on!!!!! DON

[Apache]

you got that right Don. you have to make it happen. you are in control. each person's story motivates me, and I could envision every bit of what you just illustrated while you were in the hospital. we'll pull through. it's the mental part that is the challenge.

[AdrianB1971]

a little better

Don, indeed your are a hero. Really !! I simply cannot imagine how you felt going thru this experience.
The big good news for me is that the persistent severe low back pain has almost disappeared !!! And the anxiety too

Back in time, yes I was musician [proffesional hobby my job is software engineer but I really love electronic music]. I still have a home studio and the old friends are pushing me to restart to compose songs. Maybe I will, but for moment I dont have enough strength and my mind is not prepared for that. Still the TC experiance is alive in my thoughts and when I'm beginning to forget...I have to undergo thru another surveillance checkpoint and so on.
I'll try to steal a little courage from you guys.

Now, about antidepressive medication, maybe I'll consider it but I'm convinced that is no need it. I bealive the one should avoid this medication until it's absolutely necessary. Oh, no, I forgot !!! A glass of wine, maybe two, is the best antidepressive medication as I know. And it works

Finaly, about life and death...
3 days ago on 9 March, a beatiful pop-rock singer girl has died in a horrible auto accident together with her future husbend and 3 months unborn child . It was a true tragedy. She was only 38 and her future husband 36. She was waiting many years a baby and when she finally succeded her life was brutaly ended.
Now she's in haven together with her lover and their child.

Just for photos....

http://www.laurastoica.ro/index2.html

So, maybe I should be very happy because I'm alive and still have a near normal life.

Thank you guys for your thoughts... I'm already feeling better and ready for blood test on Friday.

I wish you all the best