Having a hard time believing in what my doc says...

Freenc

Some of you already know my story. I went in for lower left abdomen pain only to be told that I have a stage 1 4.5 mass in my RIGHT kidney. The doc is saying there is no blood vessel or lymph involvement but due to location they have to do a radical. My problem comes in the fact that I am obsessing and I mean OBSESSING about recurrence. The doc is stating 5 percent chance. The doctor keeps saying that I am going to be cured and then I read threads here where recurrence seems to be routine. 

I know there is still a small chance this is benign..less than 8 percent but that still has not stopped or affected my outlook.

I have my neph on November 12.

Can the brilliant folks here help me out? I am going out of my mind. I am on Xanax, now Wellbutrin. 

I think I just need to hear from the folks that have been where I am. I am only focusing on the 5 percent negative and not the 95 percent positive cure rate.

I honestly feel like I am losing my mind. I cannot eat or sleep and now my wife has had enogh of this that she is getting angry with me.

 

I am so desperate to believe and to feel normal.

 

Thanks,

 

Tom

DonMiller

Scaniety

I was Stage 3 Grade 3 11CM at surgery on October 5, 2012. I spun out of control reading the internet and at the time the "great" Robert Motzer  put my odds at about 50%.  Three years later it is less, but I will always be at high risk.  

Although your odds are good there is no sense trying to pretend it isn't a life changing event.  Every scan is stressful.  Every unexplained pain brings anxiety.  Although most of my energy returned gradually, I am not as strong as I was and my internal tempeture clock is different. I can't say ir gets easier but I think the important thing is is live you life!  ( and drink plenty of water with less protein).    

Allochka

DonMiller said:

Scaniety

I was Stage 3 Grade 3 11CM at surgery on October 5, 2012. I spun out of control reading the internet and at the time the "great" Robert Motzer  put my odds at about 50%.  Three years later it is less, but I will always be at high risk.  

Although your odds are good there is no sense trying to pretend it isn't a life changing event.  Every scan is stressful.  Every unexplained pain brings anxiety.  Although most of my energy returned gradually, I am not as strong as I was and my internal tempeture clock is different. I can't say ir gets easier but I think the important thing is is live you life!  ( and drink plenty of water with less protein).    

It is fully understandable

It is fully understandable that you are stressed. But you are not quite correct in saying that recurrence is a routine here. It depends on the initial stage of the cancer. The overwhelming majority of Stage 1 folks here do not have a recurrence, at least in the period they hang out here. And Iceman has no recurrence in 13 years (and will never have ). 

So please concentrate on Stage 1 stories, not more complicated ones, where recurrence probability is much higher.

Also try to look at it from different perspective. Only 5 % chane is not that bad for someone who had cancer. Do you know that every 10th woman gets breast cancer in her life? That means that any gealthy woman has a 10% probability to gave breast cancer. I'm a girl, that means that I have 2 times bigger probability to deal with cancer in the future than you! Does it mean I shoul live my life in fear? Hell no! :-)

You are going to be all right. And hopefully yoy'll be more optimistic after surgery is over and you can leave the whole thing behind.

 

icemantoo

Allochka said:

It is fully understandable

It is fully understandable that you are stressed. But you are not quite correct in saying that recurrence is a routine here. It depends on the initial stage of the cancer. The overwhelming majority of Stage 1 folks here do not have a recurrence, at least in the period they hang out here. And Iceman has no recurrence in 13 years (and will never have ). 

So please concentrate on Stage 1 stories, not more complicated ones, where recurrence probability is much higher.

Also try to look at it from different perspective. Only 5 % chane is not that bad for someone who had cancer. Do you know that every 10th woman gets breast cancer in her life? That means that any gealthy woman has a 10% probability to gave breast cancer. I'm a girl, that means that I have 2 times bigger probability to deal with cancer in the future than you! Does it mean I shoul live my life in fear? Hell no! :-)

You are going to be all right. And hopefully yoy'll be more optimistic after surgery is over and you can leave the whole thing behind.

 

We all felt like you in the begining.

Tom,

 

You will get better. You are scheduled for a Cancer free recovery. We all felt like sh-- in the begining. Some members with more challanges than you would almost die for a prognosis as good as yours. Sending good karma for your neph. I would wish for a painless recovery  as well, but I would be laughed off this board.

 

 

Icemantoo

danbren2

So Hard!

Tom,

     I think we have all gone through what you are going through.  First advice is stay off the internet!!! Everyone is different.  You want reassurances you have come to the right place, most of the people on here were told things were not looking to good for them, but they are still here and going strong.  Read the stories on here and I promise within a few hours of reading you will feel so much better.

   When I first came on here I was told to stop worrying about today and concentrate on living.  Worrying is not going to change anything, but living can make you feel better and stronger! I am was diagnosed as Stage 4 and supposedly only had a 12% chance of making it 5 years, well right kidney removed, bottom portion of right lung removed, and two brain tumors and I am here still going strong. Oh and I will make that 5 year mark in 9 more months! Do as they say, live, laugh, and love!

                           Wishing you the best!

                            Brenda

marosa

danbren2 said:

So Hard!

Tom,

     I think we have all gone through what you are going through.  First advice is stay off the internet!!! Everyone is different.  You want reassurances you have come to the right place, most of the people on here were told things were not looking to good for them, but they are still here and going strong.  Read the stories on here and I promise within a few hours of reading you will feel so much better.

   When I first came on here I was told to stop worrying about today and concentrate on living.  Worrying is not going to change anything, but living can make you feel better and stronger! I am was diagnosed as Stage 4 and supposedly only had a 12% chance of making it 5 years, well right kidney removed, bottom portion of right lung removed, and two brain tumors and I am here still going strong. Oh and I will make that 5 year mark in 9 more months! Do as they say, live, laugh, and love!

                           Wishing you the best!

                            Brenda

Sometimes our mind is our worst enemy!

Tom,

Our minds can be our worst enemies sometimes if we let them run wild!  I took a 9 hour flight to Paris Sunday night to have my 1st year check-up today and I was such a mess I did not think it wise to come here and share!  That was the smothest flight ever in 27 years going back and forth from the D.R. to Paris but for me, the skies were falling, the plane too, and I made my system crack like crazy with adrenalin, let alone making my poor husband miserable all flight long.

Today was my check-up.  Everything is fine!  Im NED and sending it along for you all !  You must lovingly take control of your thoughts.  We create all that misery and it's such a waste of energy!  I know, we have been dealt a hard game of cards but it's very much up to us how we live our life and fear is maybe the worst way.  I get you, believe me!  My kids, my husband, my parents, my friends, my doctors, they all said:  Yor are happy and smiling today!  How long will that last until you start worrying again?   That shook me up!  I don't want to live like that any longer and it's mostly up to me.

It takes effort and willpower but you can do it!  We need to trust, be it in ourselves, God, your doctors, life... and we need to relax and let go of a control wich we don't have.  You really have such good odds Tom!  You will soon feel much better and calm.

I am alive

11 years in, here's what I know........

It doesn't pay to worry. Worry gets you absolutely nothing. It kills your day, your mood, your energy level, your peace of mind, your sense of well being. You can lose weeks and months of your life worrying about something that never comes to be. You don't get that time back. Fear and anxiety is another kind of cancer that can eat away at your life. With time, you will get your equilibrium. You will understand that you have no control - but you never did. So practice putting your fears in a drawer & shut it. They are there. They haven't gone away. They are just contained. They are not running rampant Through your day.

But know that if something  bad does happen, you will deal with it. You are so much stronger than you think.

foroughsh

Tom, If I want to explain

Tom,

 

If I want to explain how I felt 15 months ago I would use exact words you use. I was stressed, anxious,hopeless, and depressed. I'm stage two and all I focus on was30%. I spent hours and hours googling to find exact answer to this simple question, will I survive? Clearly there was no answer and after two weeks or more I knew it but I couldn't stop googling. I cried at least once a day and felt self pity because no one understood me. Every one including my lovely hubby focused on 70℅ and reminded me to be grateful to find out soon enough so a surgery could be the cure but what they don't understand is how this ugly word which begins with C can change one's life for ever. No matter if one needs drug,chemo,surgery,.... The problem is how frightening this word is. It took me some months almost six months to slowly find hope and back on track. I think during the 7th month I finally made my decision to go to a therapist as I always thought I could handle it on my own but then realized  I need help. And he really helpeda me . the very first thing you need to do is to take it out of your body,then take rest and take care of your body to find your strenght back. Focusing on having a healthy life style help you feel better and more hopeful. Then talk to your Wife, as the very last thing we need is an argue with our partner. There's a book in the bookstore in my country with this name,coping with cancer. My oncologist gave it to me as a gift, and when I read it it made my cry, because it was explaining how patients normally react to this diagnosis and I found my self normal, I asked my hubby to read it and also one day talked to him and told him what I expect from him,and how he can help me by showing his empathy and not being a teacher keep telling me I must be grateful. He understood and behaved much better since then.t Joining this board was also a wonderful and correct decision but plz pay attention that usually people who are in need,or stressed or have just been told about cancer diagnosis or mets join this board and when they feel OK they don't see the necessity to log in anymore So this isn't a board of all survived ones and you can't figure out the reccurance rate by looking at this or any other boards.Wishing you a successful surgery.Forough

 

 

 

 

 

Freenc

foroughsh said:

Tom, If I want to explain

Tom,

 

If I want to explain how I felt 15 months ago I would use exact words you use. I was stressed, anxious,hopeless, and depressed. I'm stage two and all I focus on was30%. I spent hours and hours googling to find exact answer to this simple question, will I survive? Clearly there was no answer and after two weeks or more I knew it but I couldn't stop googling. I cried at least once a day and felt self pity because no one understood me. Every one including my lovely hubby focused on 70℅ and reminded me to be grateful to find out soon enough so a surgery could be the cure but what they don't understand is how this ugly word which begins with C can change one's life for ever. No matter if one needs drug,chemo,surgery,.... The problem is how frightening this word is. It took me some months almost six months to slowly find hope and back on track. I think during the 7th month I finally made my decision to go to a therapist as I always thought I could handle it on my own but then realized  I need help. And he really helpeda me . the very first thing you need to do is to take it out of your body,then take rest and take care of your body to find your strenght back. Focusing on having a healthy life style help you feel better and more hopeful. Then talk to your Wife, as the very last thing we need is an argue with our partner. There's a book in the bookstore in my country with this name,coping with cancer. My oncologist gave it to me as a gift, and when I read it it made my cry, because it was explaining how patients normally react to this diagnosis and I found my self normal, I asked my hubby to read it and also one day talked to him and told him what I expect from him,and how he can help me by showing his empathy and not being a teacher keep telling me I must be grateful. He understood and behaved much better since then.t Joining this board was also a wonderful and correct decision but plz pay attention that usually people who are in need,or stressed or have just been told about cancer diagnosis or mets join this board and when they feel OK they don't see the necessity to log in anymore So this isn't a board of all survived ones and you can't figure out the reccurance rate by looking at this or any other boards.Wishing you a successful surgery.Forough

 

 

 

 

 

You all are so much wiser than I am...

I hope one day I can be as wise and calm as you all. I am listening to your advice and I pray for the understanding that you all have. 

I will make an appointment for therapy after the surgery. I guess it will just take time for this to fade but time is such a struggle. I feel as if I will never be happy or laugh again.

 

foroughsh

And one more thing, don't let

And one more thing, don't let your mind kills you before you are really dead. You don't believe me if I tell you I had all sorts of lung,brain,bone mets symptoms, just because my mind was obbssed with those mets. I couldn't breathe, couldn't speak the morning after I was diagnosed just because I spent the e whole night reading about mets, but it wasn't lung met , it was anxiety. So stay realistic and not negative.

Srashedb

Obsession

Tom:

your post sounds like you have never had surgery; if true, that first time is frightening.

i am unclear where your doc came up with stage 1, 5% recurrence since there is no pathology report. As for having a radical v a partial, make sure you get a second opinion. If there is any renal vein involvement , get the radical one. My husband had  radical in 2013 and honestly, it was not a big deal.

keeping the other kidney healthy will be your challenge.

as for the "obsession", it will ease  time goes on.

my husband was dx with stage 4, grade 2 in 7/2013 and now is doing well. That does not mean it will not come back because that is a very strong possibility. 

Stastistics are simply guesses based on many factors known only to researchers and are not a personal route. 

so, do whatever calms you and remember , all will be well, all will be well.

Sarah

I am alive

Srashedb said:

Obsession

Tom:

your post sounds like you have never had surgery; if true, that first time is frightening.

i am unclear where your doc came up with stage 1, 5% recurrence since there is no pathology report. As for having a radical v a partial, make sure you get a second opinion. If there is any renal vein involvement , get the radical one. My husband had  radical in 2013 and honestly, it was not a big deal.

keeping the other kidney healthy will be your challenge.

as for the "obsession", it will ease  time goes on.

my husband was dx with stage 4, grade 2 in 7/2013 and now is doing well. That does not mean it will not come back because that is a very strong possibility. 

Stastistics are simply guesses based on many factors known only to researchers and are not a personal route. 

so, do whatever calms you and remember , all will be well, all will be well.

Sarah

Happy

Tom,

You WILL be happy and you WILL laugh again. You will amaze yourself. I promise you that.

Now go surround yourself with the people you love. I find that it helps to plan activities, to have something to look forward to. It can be as simple as a gathering with old friends, lunch with a favorite person, dinner out and a movie, a trip, a party - any no-stress occasion that makes you smile. Don't just hibernate with your worries. Make yourself GET OUT. If  you're not the people person in your relationship, ask your partner to plan the activities. That's a valuable way they can help. (That's my husband's role in our relationshi. I call him my concierge. It makes a HUGE difference in day-to-day emotional life.)

What you don't need is to be around people who bring you down, for whatever reason. I just skate on by those folks. No time or interest in the drama. Got better things to do. It's freeing. You'll wonder why you didn't edit them out years ago! 

Jan4you

I am alive said:

Happy

Tom,

You WILL be happy and you WILL laugh again. You will amaze yourself. I promise you that.

Now go surround yourself with the people you love. I find that it helps to plan activities, to have something to look forward to. It can be as simple as a gathering with old friends, lunch with a favorite person, dinner out and a movie, a trip, a party - any no-stress occasion that makes you smile. Don't just hibernate with your worries. Make yourself GET OUT. If  you're not the people person in your relationship, ask your partner to plan the activities. That's a valuable way they can help. (That's my husband's role in our relationshi. I call him my concierge. It makes a HUGE difference in day-to-day emotional life.)

What you don't need is to be around people who bring you down, for whatever reason. I just skate on by those folks. No time or interest in the drama. Got better things to do. It's freeing. You'll wonder why you didn't edit them out years ago! 

Tom, you can ask yourself

Tom, you can ask yourself this: What do you gain by worrying? Trust your doctor and pray for him/her.

LIVE the LIFE you are given and the rest will work itself out. You are expending much needed energy

you'll need to heal from surgery. You are using up precious energy you need to love yourself, love your

wife, to relax and enjoy each moment you are given.

You can do this! Keep telling yourself that!

When you start to fret, obsess, distract yourself by helping out someone who needs help NOW~

You'll fee better, ( I promise) and they will be ever so grateful for your kindness.

Here is the Serenity prayer it helps me in times of stress:

(God) Grant me the SERENITY to accept the things I cannot change

the COURAGE to chance the things I can, (your outlook) and

the WISDOM to know the difference.

 

We'll walk this journey along side you, so remember that!

Gentle hugs, Jan

medic1971

perspective

Hi Tom,

You need to try and get some perspective about your situation.  First off you are not dead or even dying.  You have a 4.5cm mass in your right kidney and you don't even know if it's cancer or not.  Secondly you are lucky that they found it now and not 4 or 5 years from now when it could have been 8 or 9 cm and spread beyond your kidney.  Third, you have a good doctor and a good plan for treatment/cure.

I understand your worry about it coming back one day, but you can't live like that man.   You need to live in the moment and plan for the future.  I saw comment in this forum from a user who has stage 4 cancer and it struck as so profound that I think about it a lot.  Here's what he said "I didn’t die yesterday, I am still alive today, I don't plan to die tomorrow, but beyond that I don't know". That statement is true regardless of your health status.  Tom, I've worked in healthcare for over 20 years, mainly in emergency medicine, and I can tell you there are no guaranties for another tomorrow in this world. Seriously, you could die in a car accident next week so why are you worrying about something that probably won't happen?  Weather you live another 50 years or not, you will never get THIS day back.  Enjoy your life, enjoy your family.  In the blink of an eye your kids will grow up and you will wonder where that time went so please for them and yourself don't waste it worrying about what-ifs.   

 

Yes there's a chance this could reoccur and if it does you deal with it  You've also got to think that there are a lot of new treatments for rcc that will be coming out soon. Hell there could even be a cure for rcc that's in clinical trials right now!  I think over the next few years we will see a revolution in the treatment of cancer.

Hang in there brother!

Jason 

angec

Hi there, sorry to hear that

Hi there, sorry to hear that you are having a hard time. It is only natural.  I don't know if i missed something, but...  you didn't have the surgery yet?  Did they do a biopsy? How do they know it is cancer?  If you had the biopsy and they confimed it then ok.  But until the surgery is done they can't really be so sure, if you didn't have a biopsy.  The other thing i want to add is that my  79 year old mother was stage 4 in 2012, she had plenty of spots and they told us it wasn't looking good. She has been on homeopathic meds and Votrient and thus far is NED.  So, it is easy to say, but try to calm yourself down. Get the surgery, the results then go from there. If nothing is showing up anywhere else that is a good sign. If it is cancer then you have an excellent chance the sugery will be a cure. Hoping it goes your way.  Praying for a speedy recovery!

Footstomper

angec said:

Hi there, sorry to hear that

Hi there, sorry to hear that you are having a hard time. It is only natural.  I don't know if i missed something, but...  you didn't have the surgery yet?  Did they do a biopsy? How do they know it is cancer?  If you had the biopsy and they confimed it then ok.  But until the surgery is done they can't really be so sure, if you didn't have a biopsy.  The other thing i want to add is that my  79 year old mother was stage 4 in 2012, she had plenty of spots and they told us it wasn't looking good. She has been on homeopathic meds and Votrient and thus far is NED.  So, it is easy to say, but try to calm yourself down. Get the surgery, the results then go from there. If nothing is showing up anywhere else that is a good sign. If it is cancer then you have an excellent chance the sugery will be a cure. Hoping it goes your way.  Praying for a speedy recovery!

What will happen, will happen

The chances of anything other than a cure are miniscule. This is what you have told us.

To quote soldiers from world War I

"Pack up your troubes in your old kit bag and smile smile smile.

While youve a Lucifer to light your **** smile boys thats the style.

Whats the use of worrying?

It never was worthwhile!

So pack up your trouble in your old kit bag and smile smlie smale!"

 

The Lucifers and fags are not compulsory. Actually neither is the smile. But whats the use of worrying?

Youre in the hand of experts. Trust them, they know what they are doing. Your job is to turn up have a nap, then do what youre told when you wake up. Easy

APny

Footstomper said:

What will happen, will happen

The chances of anything other than a cure are miniscule. This is what you have told us.

To quote soldiers from world War I

"Pack up your troubes in your old kit bag and smile smile smile.

While youve a Lucifer to light your **** smile boys thats the style.

Whats the use of worrying?

It never was worthwhile!

So pack up your trouble in your old kit bag and smile smlie smale!"

 

The Lucifers and fags are not compulsory. Actually neither is the smile. But whats the use of worrying?

Youre in the hand of experts. Trust them, they know what they are doing. Your job is to turn up have a nap, then do what youre told when you wake up. Easy

“The doctor keeps saying that

“The doctor keeps saying that I am going to be cured and then I read threads here where recurrence seems to be routine. “

Don’t go by the board’s rate of recurrence. Most likely those who are stage 1 and with no issues or recurrence stop posting here and move on with their lives. So it makes sense that those for whom it unfortunately returned would come here seeking support, help, advice, and doing the same in return for others. So it’s really a skewed sample. There are no guarantees of course and yes, unfortunately even a stage 1 can recur. But the odds are in your favor.

The stress and fear is completely understandable. It will hopefully lessen with time for you.

aamdsi

trust in your Doc.

I too was diagnosed wtih stage 1, but tumor was a 5.5 mass.  This was almost 2 years ago.  I started reading everyting on the web and was positive I was going to turn into one large cancerous lump.  Every twinge every cough was my last.

So first advice, stop reading internet. 

I had an open partial and (as said earlier) am almost 2 years past and have been NED. My Dr. told me the same that I had a 5% chance of reaacurance, but that that decreases after 3 years!

As for your wife not being happy....My husband got a bit annoyted as well.  But he also understood that no one knows how they will react when they find out they have cancer.  It still is terrifing that I had/have cancer, but (with a lot of work) I have decided that I can't live my life worrying about it anymore. 

You will be all right. The next couple weeks will suck after surgery - but you will survive!

Good luck tomorrow.  Will hope to hear from you back here soon.

Positive_Mental_Attitude

APny said:

“The doctor keeps saying that

“The doctor keeps saying that I am going to be cured and then I read threads here where recurrence seems to be routine. “

Don’t go by the board’s rate of recurrence. Most likely those who are stage 1 and with no issues or recurrence stop posting here and move on with their lives. So it makes sense that those for whom it unfortunately returned would come here seeking support, help, advice, and doing the same in return for others. So it’s really a skewed sample. There are no guarantees of course and yes, unfortunately even a stage 1 can recur. But the odds are in your favor.

The stress and fear is completely understandable. It will hopefully lessen with time for you.

"Most likely those who are

"Most likely those who are stage 1 and with no issues or recurrence stop posting here and move on with their lives."  APny is right about this.  I was diagnosed in April/May 2014 as stage 1, had my surgery in July 2014, and my first 2 scans have come back clean. While I am not not ready to declare victory and be a permanent friend of NED, I have had to attend to other things in my life, including my business, my wife, children and other priorities in life.  I would love to participate more here and post more often, but I feel that I don't have that much to add, especially when it comes to advice for stage 4 patients.
  At some point I read another interesting statistic about stage 1 patients.  There is a good percentage that don't bother following through with their follow up scans.  I think a lot of folks just move on and want to forget about ever "having cancer".  I still feel strange about saying I "had cancer."   I am optimistic but vigilant and determined to follow through with my scans.

marosa

aamdsi said:

trust in your Doc.

I too was diagnosed wtih stage 1, but tumor was a 5.5 mass.  This was almost 2 years ago.  I started reading everyting on the web and was positive I was going to turn into one large cancerous lump.  Every twinge every cough was my last.

So first advice, stop reading internet. 

I had an open partial and (as said earlier) am almost 2 years past and have been NED. My Dr. told me the same that I had a 5% chance of reaacurance, but that that decreases after 3 years!

As for your wife not being happy....My husband got a bit annoyted as well.  But he also understood that no one knows how they will react when they find out they have cancer.  It still is terrifing that I had/have cancer, but (with a lot of work) I have decided that I can't live my life worrying about it anymore. 

You will be all right. The next couple weeks will suck after surgery - but you will survive!

Good luck tomorrow.  Will hope to hear from you back here soon.

Thinking about you and

Thinking about you and wishing you a speedy recovery.   Let us know how you are doing when you can.  Be well.