Advice please

Dear Karen,

All of is on this board have faced a diagnosis of Kidney Cancer or possible Kidney Cancer as a patient or relative. When you meet with the Urologist he (usually all men in this field) will be able to tell you what you are facing. Sometimes the CT is not 100% conclusive.

The good news is that even if it is Kidney Cancer at 1.9cm it is a close to 100% curable as it could be with surgery alone.

Being scared is normal. I sure was when I was diagnosed at age 59 almost 12 years ago. So was Faye across the street who was diagnosed at age 64. She is 84 now and still walks Ernie everyday, rain or shine, because her husband can not walk very well..

We both as well as almost everyone on this board had the surgery. Not fun,  but an easy choice to get rid of the tumor.

In my day everyone had a nepherectomy (removal of the Kidney). Now a they are doing partial nephs and procedures  for very small tumors.

The fear will pass as well as any necessary surgery. Your summer will be a little slower, byt everything should be fine.

My surgery was on August 1, 2002. The following June as part of a gathering for my 60th birthday, I went water skiiing. Because you are much younger I expect you will be able to do much more. Just not this summer.

After you meet with the Urologist come back on with the details and we will be able to help you thru it.

Icemantoo

Hi Karen!  Nice to meet you but sorry for the circumstances. 

I know what you are going thru and how scared you must be.  I truly believe that waiting is the hardest part of this whole coaster ride you are on.  At least, it was for me. 

When I first came here, to this site, and people would say, "oh, but your tumor is so small, it's likely 100% cure with surgery", it would literally piss me off...just keeping it honest here.  To me, it didn't matter if it were microscopic, it was cancer.  And, once you hear the word cancer, you can't unhear it.  Nor will another day pass without me thinking about having had cancer and wondering when it will rear it's ugly head again. 

I was scheduled to wait several weeks to see a urologist, following an incidental finding of a 4.7cm "probable renal cell carcinoma" tumor on and in, my right kidney.  I called every doctor within many miles trying to find someone who could see me sooner.  Just so happens, I have friends in high places that could pull some strings and get me seen immediately.  Before I knew it, I was in the hospital having a radical nephrectomy.  My small tumor just so happened to be growing directly over a vein, making it even more dangerous.  So, size doesn't always matter.  Location, location, location. 

The best advice I can offer is to get your medical records.  Every single time you have bloodwork or scans, ultrasound, x-ray, MRI, whatever the case may be.  It's so important!  In fact, it's how I learned I had "probable renal cell carcinoma".  Do not rely on your medical staff to tell you everything that's included in your reports.  History has proven time and time again that, more likely than not, I learn something from looking at my records myself, that the doctor failed to share with me.  I know that the general concensus is, if it were important, the doctor would have said something.  I couldn't disagree more.  My health will never be as important to any doctor as it is to ME!  If I have an enlarged lymph node in my lungs, by God, I want to know about it.  If it causes me undo stress, so be it.  But, I know I will not drop the ball on myself...I will make sure it gets followed and closely watched.  For once in my life, I have made myself numero uno. 

I am less than a year into this and already, I can say, this has had a positive impact on my life.  Never in a million years would I have believed those words would come out of my mouth, but, it's true.  This will make me sound like a looney, but I really thought I was going to die.  I went so far as to give things away.  From the minute I suspected I had cancer, I thought my days were numbered.  Then, I found this site.  I wish I had found it sooner, before my surgery.  I attribute ALL of my change to my fellow survivors on this forum.  I have gained an inner strength I never knew I was capable of. 

I am glad to hear you have a great support system.  Lean on them.  Talk to them.  Talk to us.  Learn as much as you can because knowledge is power.  In the event you have kidney cancer, it may very well change your life but it's not likely to take your life.  I've always heard the old saying, 'what doesn't kill us makes us stronger', but never really got it until this experience.  I am most definitely a stronger woman today than I was this time last year.  Physically and emotionally.  Kidney cancer took alot from me and out of me but it also gave back.  It gave me a new found appreciation for life, love and happiness.  It's encouraged me to live a healthier lifestyle and It brought me closer to God.  So, all in all, I can't really complain.  And, because I've had cancer, I am guaranteed scans every 3-6 months, for atleast the next few years.  So, should anything else arise (like an enlarged lymph node) it will likely be caught early. 

So, hard as it may be right now, try not to freak out too much.  Put all of your energy in to learning all you can and be proactive in your treatment.  Look for the postives.  There are many, you just can't see them...yet!

Keep your chin up and keep us posted.

Sindy 

Karen0074 said:

Ron that was exactly what I

Ron that was exactly what I was going to ask that there is something in my kidney I don't need to know for sure what it is I just want it gone, and then the drs can tell me exactly what it was after. Why waste time with a biopsy something I will definately bring up. It might not be cancer but all my worried mind is telling me that it is.

Sindy, what you have written is exactly what I'm thinking. It is a scary word and once it's associated with you I thought that's it. Every ache and pain in the future I will be worried about. I would hope that I will be given regular screening if not on the NHS here in the UK. Then I will pay for it privately.

my sister told me about this site, I'm so glad she did I'm looking forward to asking you guys so much and getting and offering support as much as I can.

 

Karen

I no doubt was one of those who pissed Sindy off by telling her that the cure rate for her tumor size was near 100% from the surgery alone. She had enough to deal with hearing the big C word during what was an otherwise normally healthy life. Should I have said that over 40% develope other issues even thogh she was not in that 40%?. I think not.

The point is that we all come on this board scared and pissed off. One newbie left right away when we called our group a club after and each member was initiated by  having surgery thinking we were making a joke of it.

I as well as others read as much as we can about the responder's situation and other posts. I try to be helpful and accirate. Sometimes I get it a little wrong and wish I had not written something I had written.

I hope that we can all think and write responsibly even though it may not always  be taken as positive and some may be offended where no offence was intended.

As you all know I have stayed away from politics lately which did piss people off and vice versa.

Icemantoo

APny said:

Sindy, you have articlulated

Sindy, you have articlulated so perfectly what I, and I’m sure many of us, are thinking. Hearing that word just changes your life forever. Thank you and bless you for your incredible empathy.

 

Karen, I too was and am scared but I do try to be optimistic that surgery can remove all of it. Is there a chance for recurrence, of course, and as Sindy said, that thought will always be with me. But I try to take comfort from the fact that they got it early. No guarantees, but the odds are in our favor when they get it early. I think that’s what Iceman is trying to say too. That our chances are better than if it had been discovered much later. Best of luck to you; the surgery isn’t fun but not as horrible as I had feared either.

 

Welcome to our forum, Karen!

I was also scared when first diagnosed in October. But this forum has helped me realize that RCC ican be looked at as more of a chronic disease.  Treatment has come leaps and bounds in the past couple of years. In October, the urologist told me that if I was stage IV, I was "done" - that there was no treatment. I am still stunned that this young doctor had this outdated information and attitude! Luckily, this young urologist had the good sense to refer me to a superstar uro-oncologist who gave me great care. I also was lucky to be stage III. My kidney (and 13 cm tumor I named "Arnold") was removed and the follow up scan gave me an all clear.

I am glad you found this great source of support and knowledge. This wonderful group of people will help you through whatever comes your way!

And, as Sindy said, it can change your outlook on life. You appreciate the good things so much more. (Great new pic, Sindy! What a cutie beside you!)

Hugs and smiles

Jojo

Jojo61 said:

Welcome to our forum,

Welcome to our forum, Karen!

I was also scared when first diagnosed in October. But this forum has helped me realize that RCC ican be looked at as more of a chronic disease.  Treatment has come leaps and bounds in the past couple of years. In October, the urologist told me that if I was stage IV, I was "done" - that there was no treatment. I am still stunned that this young doctor had this outdated information and attitude! Luckily, this young urologist had the good sense to refer me to a superstar uro-oncologist who gave me great care. I also was lucky to be stage III. My kidney (and 13 cm tumor I named "Arnold") was removed and the follow up scan gave me an all clear.

I am glad you found this great source of support and knowledge. This wonderful group of people will help you through whatever comes your way!

And, as Sindy said, it can change your outlook on life. You appreciate the good things so much more. (Great new pic, Sindy! What a cutie beside you!)

Hugs and smiles

Jojo

 

Yes we are all scared... does not matter if you are a patient or caregiver..  the fear cuts deep.  We do try to keep in a bit light around here... this does not "work" for everyone.  There is another site called Smart Patients, they keep in very dry and to the point.  Both have their medits for sure..!  Yes we make jokes at times.. but always show compassion and sympathy when needed.  And sometimes we all need a polite kick in the back side too.  It is easy to be negative and in a very bad mental state... this does not help anything... so at least a few of us try to lift our spirits..   I know it is difficult.. just try to keep looking forward..    Every day has some sunshine in it... well it does for me...  I do not know what I would do without the people around here... they all help me every day..!

Ron

icemantoo said:

Should we apologize to Sindy?

I no doubt was one of those who pissed Sindy off by telling her that the cure rate for her tumor size was near 100% from the surgery alone. She had enough to deal with hearing the big C word during what was an otherwise normally healthy life. Should I have said that over 40% develope other issues even thogh she was not in that 40%?. I think not.

The point is that we all come on this board scared and pissed off. One newbie left right away when we called our group a club after and each member was initiated by  having surgery thinking we were making a joke of it.

I as well as others read as much as we can about the responder's situation and other posts. I try to be helpful and accirate. Sometimes I get it a little wrong and wish I had not written something I had written.

 

I hope that we can all think and write responsibly even though it may not always  be taken as positive and some may be offended where no offence was intended.

 

As you all know I have stayed away from politics lately which did piss people off and vice versa.

 

 

 

Icemantoo

Iceman, there isn't a single person on this forum, that owes me an apology.  If you took what I said personally, well, that's too bad.  I wasn't directing my comment to you.  I have always been very appreciative of advice, good or bad.  Just the fact that someone reached out to comfort me during a very scary time meant more to me than what they said.  You were indeed one of those people who reached out to me, and I will always be grateful.  

Just because I said I got pissed off when people would tell me my tumor was so small it was likely 100% curable, doesn't mean I was justified in feeling that way.  Feelings don't have to be justified tho...we can't help how we feel.  Maybe you can, but I can not.  Many years ago, at four and a half months pregnant, I lost my baby.  I can't tell you how many people told me it would be OK, that I was young and would have other babies.  As tho other babies would lessen the pain of the one I lost.  And no, it wasn't OK.  It's never OK to lose a baby, no matter the (gestational) age.  Yep, you probably guessed, it pissed me off.  Everytime I heard it.  I think each person who said that to me thought they were comforting me.  Each one of them had good intentions.  But, whether justified or not, I was livid each and every single time I heard those words. 

My point with all this is that, even tho you offer advice with the best of intentions, you can't make someone hear your words the way in which they were intended.  And just because that statement is offensive to me doesn't mean it offends others.  I would venture to guess most people would find comfort in those words.  I am not like most people...clearly.  So, I make no apologies for how I feel nor should you apologize for your well intended words.

Keep doing what you do, Iceman.  I (almost) always value what you say

twinthings said:

adorable little one

Thanks, angec!  That adorable little boy is my one and only grandchild.  He's 2, his name is Cooper and he is the bomb.com! 

I'm glad to hear your mom is stable.  May she continue to be stable for many years to come!  Having lost both parents to cancer, I can imagine how hard this has been on you.  Don't forget to take care of yourself. 

 

Sindy

Sindy, that little Cooper sure is da bomb! I want to squeeze him up!  Please shower that little face with kisses for me....  Thanks about your well wishes for mom. I hope so too! Sorry about your loss!  Sending big hugs to you... be well!  XXOO

a_oaklee said:

Welcome

Hi Karen, 

I just want to say I'm sorry for all you are going through right now, and I'm very glad you found this site.  I wish I could offer more helpful information, but those members who have already written have eloquently covered anything I had to offer.

Twinthings:  I am so impressed with the knowledge you shared and the way you expressed yourself.  I think you have a gift of expression and the ability (obviously) to help others. 

Iceman:  I think that you always take the time to welcome the newbies, and I appreciate your style of calm reassurance.  (and you've done a fantastic job of not bringing up politics)  Keep up the good work.

Annie

Thank you for the kind words, Annie, but you give me too much credit.  I am very expressive but most people don't see it as a gift, just an annoyance. 

Happy Easter!

Sindy