Newly diagnosed - and scared!

Jojo61

I am alive said:

He said WHAT???????

Your blundering urologist said "If it spreads you are done"? I'm sorry, but I have to say it - what an ****. Look, it it spreads it is not curable, that is true (though a tiny percentage of very lucky people do get remission from an IL2 therapy, more on that down the road). We like to view metastatic kidney cancer through the prism of "chronic disease."  Like diabetes or Crohn'sdisease. You manage it. Hot spots pop up and you deal with them. True, there are only a handful of drugs that RCC responds to, but there are more of them than there were 5 years ago, and 5 years from now there will be even more options. Yes, some people's cancers are aggressive and spread quickly. But others don't. It's all kind of a crap shoot. But to label you "done" at the first sign of spread is unconscionable and, frankly, ignorant. (In the broader sense, we're all "done"  the second we take our first breath!) From reading these forums you can see that people can live for years with kidney cancer. Do you know about the SmartPatients.com site? Check it out. Its an excellent source of up-to-the-minute info on the latest clinical trials, drugs, ect. It's another forum like this. I believe there might be a Canada-specific tag there with links to Canadian RCC sites. If you don't see it start a conversation asking about it. Good news that you are near a top cancer hospital, and good news that the oncologist you are waiting to see is so highly regarded. I'm betting that once you put distance between yourself and this idiot urologist you will start feeling a lot more confident about things. 

You guys are wealth of

You guys are wealth of information. I like your way of looking at things, I Am Alive. I especially like the idea of looking at metastic kidney cancer like through the prism of chronic disease". Ï find it reassuring.

I will check out that website.

 

Thanks!

 

Jojo61

bcbigb said:

we sound like twins

we both seem to have the same story.friday before sept.long weekend was diagnosed with a kidney tumor 15cm by 8 cm at the age of 51.had cat scan on sept.3, met surgeon on sept.6,and had total removal of kidney ,tumor 14 lymph nodes .the scariest part for me was everything went so fast.at home now recovering and feeling better everyday.hopefully everything goes well and you to can be at home a cancer surviver.

good luck and my prayers are with you.

brian c.

Hi Brian,
You got worked on

Hi Brian,

You got worked on very fast! Glad you are feeling better.

You didn't say if you had it done via laperoscopy or open nephrecomy?

Also am curious....prior to your surgery, did you feel discomfort on the opposite side of your tumor? I am feeling discomfort on both sides.

And what were your symptoms for them to find your tumor?

Take care!

Jojo

bcbigb

no symptoms

I had no real symptoms,went in for general physical,thought had problem with prostate. Going to washroom every hour or so,did a ultrasound and found the large tumor.I was lucky unlike yourself they get me in in 2 weeeks,had great doctors.Total naphectamy,tumor ,right kidney and 14 lymph nodes removed.The only symptoms I had were in the week before my surgery,pain in the right side .Nothing on the opposite side.The docter said the pain was because the tumor had grown 2 cm in  a week and a half ,the time from my cat scan to my surgery.The main thing is if you have no blood in your urine or your blood tests come back with nothing out of the norm.Hopefully you get everything resolved with the right docter, I was seeing a urologist and he was great.Looks like we caught everything on time ,but it could have been differentif went in 6 months to a year from now.So make sure you force the issue get in early .

Thinking of you and praying for you.

Brian C

Jojo61

bcbigb said:

no symptoms

I had no real symptoms,went in for general physical,thought had problem with prostate. Going to washroom every hour or so,did a ultrasound and found the large tumor.I was lucky unlike yourself they get me in in 2 weeeks,had great doctors.Total naphectamy,tumor ,right kidney and 14 lymph nodes removed.The only symptoms I had were in the week before my surgery,pain in the right side .Nothing on the opposite side.The docter said the pain was because the tumor had grown 2 cm in  a week and a half ,the time from my cat scan to my surgery.The main thing is if you have no blood in your urine or your blood tests come back with nothing out of the norm.Hopefully you get everything resolved with the right docter, I was seeing a urologist and he was great.Looks like we caught everything on time ,but it could have been differentif went in 6 months to a year from now.So make sure you force the issue get in early .

Thinking of you and praying for you.

Brian C

Hi Brian,
Thanks for your

Hi Brian,

Thanks for your feedback. I am wondering if mine has grown. I also wonder if I notice it more because I am more aware that there is a beast within! lol

But I have to say I am having a lot more discomfort and sometimes actual pain than I did a month ago. I have never had my urine tested either. I told him that I have to pee every hour as well, and he balked at that saying it had nothing to do with the tumor...to cut down on my coffee. He also wasn't too concerned about my edema in my feet.

I didn't realize that a tumor could grow that fast. The urologist I saw insinuated that I have had this for years. Who knows?

I am more convinced to keep on it and try a more direct route to get an appt. with that uro-oncologist.

Take care!

Jojo

 

Babsokl

Prayers

I will be praying for a quick resolve to your situation. I know that sometimes doctors just don't think about what a patient is going through and forget the humanity of us all. But..not all doctors are that way. I'm 50 and recovery was hard and painful..but I'm one year out and doing better. I still have so e things to improve on..diet and exercises..big am so great flu to be alive and cancer fre. Surgery is what will get this RCC out and hopefully gone from your life! I too lost my mom on July 2. So etimes it seems like things happen all at once! I was diagnosed, surgery last October, huge devastating tornado in Moore, Mom died in July..all in a years span! One thing I will change in the years ahead is to instill in my grandchildren resilience and that life isn't always fair or easy! All we have is our faith, love, family and friends. Nothing else matters! Prayers your way! 

Jojo61

Babsokl said:

Prayers

I will be praying for a quick resolve to your situation. I know that sometimes doctors just don't think about what a patient is going through and forget the humanity of us all. But..not all doctors are that way. I'm 50 and recovery was hard and painful..but I'm one year out and doing better. I still have so e things to improve on..diet and exercises..big am so great flu to be alive and cancer fre. Surgery is what will get this RCC out and hopefully gone from your life! I too lost my mom on July 2. So etimes it seems like things happen all at once! I was diagnosed, surgery last October, huge devastating tornado in Moore, Mom died in July..all in a years span! One thing I will change in the years ahead is to instill in my grandchildren resilience and that life isn't always fair or easy! All we have is our faith, love, family and friends. Nothing else matters! Prayers your way! 

Hi Babsokl,
Things do seem to

Hi Babsokl,

Things do seem to happen all at once, don't they....sometimes in a one year span...sometimes in a 5 year span! lol

I am sorry for the loss of your mom. There are so many times I want to just call her! Especially now

You are so right, Babsokl! Faith, love, family and friends. Nothing else matters. Thank you for your prayers. I will send some your way as well.

God bless!

 

 

cran1

Hang in there Jojo.

Hang in there Jojo.

twinthings

Babsokl said:

Prayers

I will be praying for a quick resolve to your situation. I know that sometimes doctors just don't think about what a patient is going through and forget the humanity of us all. But..not all doctors are that way. I'm 50 and recovery was hard and painful..but I'm one year out and doing better. I still have so e things to improve on..diet and exercises..big am so great flu to be alive and cancer fre. Surgery is what will get this RCC out and hopefully gone from your life! I too lost my mom on July 2. So etimes it seems like things happen all at once! I was diagnosed, surgery last October, huge devastating tornado in Moore, Mom died in July..all in a years span! One thing I will change in the years ahead is to instill in my grandchildren resilience and that life isn't always fair or easy! All we have is our faith, love, family and friends. Nothing else matters! Prayers your way! 

Moore, OK

Brian, first of all, I'm so sorry for the loss of your mom. 

I noticed you made reference to Moore, are you from Oklahoma?  It just so happens, the day I came home from having my nephrectomy, I had to make a run for the storm cellar, as tornadoes tore through the skies all around us.  I sat in that cellar for 4 hours, till the threat was gone.  Mostly because, I knew the challenge I faced getting out and, I knew I could not possibly make it down there a second time, with staples in my belly and in a fair amount of pain.  Granted, the devestation of the Moore tornado just two weeks earlier, still fresh in my mind, played a huge roll in keeping me in that cellar. 

If you are in the OKC area, do you know of an oncologist who specializes in RCC?  I'm having the darndest time finding one.  I see a wonderful urologist at Integris but all he's doing at my 6 month post-op, later this month, is an x-ray of my chest and bloodwork.  The more I read from fellow survivors on this site, the more I come to realize x-rays aren't the standard of care and therefore, aren't sufficient in detecting mets...in my opinion.  I think I will feel better if I see an oncologist.

And you're right, all we have is our faith, love, family and friends.  It's all we need!

Sindy

Jojo61

cran1 said:

Hang in there Jojo.

Hang in there Jojo.

Thanks Cran!
 
And I want to

Thanks Cran!

 

And I want to tell everyone that some of your prayers have been answered! I just got off the phone with my LTD rep from work. There is an  "Oncology Overseer"who I can call and will be in contact with doctors, etc. to move things along for me.  Baby steps. What a relief I am feeling!

I will keep you all posted!

 

 

GSRon

Jojo61 said:

Thanks Cran!
 
And I want to

Thanks Cran!

 

And I want to tell everyone that some of your prayers have been answered! I just got off the phone with my LTD rep from work. There is an  "Oncology Overseer"who I can call and will be in contact with doctors, etc. to move things along for me.  Baby steps. What a relief I am feeling!

I will keep you all posted!

 

 

A Good Start..

A good start JoJo..!  IF it is RCC, you should know that it typically is very slow growing.  The numbers I keep hearing are less than 1 cm per year.  Some slower than that.. but yet some a lot faster.  The sooner the surgery the better, but a week or two most likely will not make a difference.  Often the true size of a tumor is different than what the scan shows.. I so not know why.. but I hear that.. heck my surgeon said mine was bigger than the scan..!

I know right now your head is spinning... normal.  Just keep vigilant and get the deed done..!

Again, we are all here for you... darn near 24 / 7.

Ron

Jojo61

GSRon said:

A Good Start..

A good start JoJo..!  IF it is RCC, you should know that it typically is very slow growing.  The numbers I keep hearing are less than 1 cm per year.  Some slower than that.. but yet some a lot faster.  The sooner the surgery the better, but a week or two most likely will not make a difference.  Often the true size of a tumor is different than what the scan shows.. I so not know why.. but I hear that.. heck my surgeon said mine was bigger than the scan..!

I know right now your head is spinning... normal.  Just keep vigilant and get the deed done..!

Again, we are all here for you... darn near 24 / 7.

Ron

Thanks, Ron!
I keep learning

Thanks, Ron!

I keep learning more and more from you guys!

Take care!

izzycohen

It's OK to get pushy with the doctors.

There seems to be some foot-dragging and a lack of people being pro-active on your behalf.  Don't be bashful about "nudging" them into action.

Your tumor is relatively large.  It can be dealt with.  As others have pointed out, surgery, soon, is the first step.

There will be many of us following your progress and praying for your recovery.

 

Izzy

izzycohen

It's OK to get pushy with the doctors.

There seems to be some foot-dragging and a lack of people being pro-active on your behalf.  Don't be bashful about "nudging" them into action.

Your tumor is relatively large.  It can be dealt with.  As others have pointed out, surgery, soon, is the first step.

There will be many of us following your progress and praying for your recovery.

 

Izzy