Newly diagnosed - and scared!

Hi Jo,

Everyone here has been in your shoes in one way or another, for me it has been just over four years.  Cancer is a very scary word, but the emotions and fears can work for you or against you, its your choice.  Start working on a take no prisoners attitude right now, attack with extreme prejudice.  You are most likely facing surgery, get prepared for it physically and mentally, you are about to learn that you are much stronger than you thought, you can do this.  You probably will not know very much until the pathology report post surgery when you will learn stage, grade, sub-type, etc. and if it has escaped the confines of your kidney, at that point a plan for what actions are required will be made.  This could be as little as surveillance tests and scans or more aggressive like drugs and trials if needed.  Your tumor is big, but we have had members here with much larger ones that have returned to their "normal" lives, no reason at this point to think that you won't be joining them.  The gang here will support you anyway they can, even if you just need to vent to an understanding ear or need a shoulder to cry on, we're here, so keep us posted.

Good luck and Godspeed,

Gary

icemantoo said:

Ditto

Joan,

 

I agree with garym. This part is not fun for anybody, but you have to have the surgery. We all did. Mine was 11 years ago.  The recovery is not fun either, but it beats  the alternative, Get thru that and follow up with all the scans etc. and anything that comes your way can be conquered, There are medicines and procedures available today taht were not available 5 and 10 years ago to give positive resukts to those of us who start with larger tumors. The important thing is to get it out now so it can not spread.

 

Icemantoo

 

 

Jojo, you can and will do this. Most of us have. And if you notice, we are here to tell you about it. My diagnosis and nephrectomy were only a few days apart. No time to worry. I actually don't worry to much because I believe we can recover from almost anything.  I'd suggest you push for surgery and get it done soon. Then think about the long term effects. Lots of options are available. There are several different treatments being recieved by our forum members. You'll find the appropriate one and will be counseling newbies in a few years yourself. It's the club no one wants to join. But here we are.

....since 'welcome' doesn't sound quite right to say on this site!

My name is Terri, I'm 46 and was diagnosed in mid-September.   I had an open radical nephrectomy a month ago (on Oct. 2)

I am very sorry for the run-around you apparently got (and your family doctor really needs an education in kidney tumors).   I had a CT scan on a Friday morning (for a completely unrelated reason) -- and my family PA called me with the news that I had a mass in my left kidney that same afternoon.   He'd already set up my urology appt. for that Monday.   My urologist would have done my surgery that very week, but I had tickets to a Chicago Blackhawks game on Sept. 28, and I wasn't about to let a little thing like cancer keep me from that!   

The good news is, when a kidney tumor is confined to the kidney, surgery is THE treatment -- and no further treatment is required.   I will be praying that this is the case for you -- and will be watching for updates.

I am alive said:

Jojo,
   Are there any kidney

Jojo,

   Are there any kidney cancer specialists - we call them RCC (renal cell carcinoma) experts - in your area? Or nearby? That's who you want to see, if you can manage it. Not a generic oncologist. If you want this bugger out ASAP then let the oncologist you have onboard now do the surgery, but do your followup with an RCC specialist if at all possible.Where do you live?  In the States? We can recommend cancer centers near you, and perhaps even doctors. Followup is important. After surgery you will need to know what kind of kidney cancer you have - clear cell is the most common, non-clear cell (of which there are several sub types) is less common. Then you just wait to see if the cancer comes back. Just have regular scans and get on with your life. Yes, you will get nervous around scan time, but you will learn to deal with that. It'll take about a month to recuperate from surgery. Maybe 6 weeks before you feel your old self again. Try to remember that everyone's cancer is different.  At some point you should stop Googling. Your cancer may never return and you don't want to waste any more of your precious life worrying about what "might" happen. And if it comes back, you will deal with it. As others here have said, you are stronger than you can even imagine right now. I had an 11 cm tumor 9 years ago. Four years after my nephrectomy metastases appeared. So I had another surgery. Three years later another met popped up. So I had a bit of radiation. Six months after that a couple of other mets showed thier ugly selves. So I joined a clinical trial. Bottom line: I'm still here. I'm in the game. And I'm happy. Anything can happen.  You know, you probably got a bad feeling with the urologist because your radar picked up that something ontoward was going on. Their complete mishandling of their communication with you is inexcusable. It made a bad situation worse. I wouldn't read anything more into your intuitive feelings than that.

JoJo.. welcome to our club.. sorry you need to be here..  One thing this olde guy has learned... let it rip... have a good cry, yell, use all the nasty words...  Heck yes you are scared, just like all of us... but that one good cry will make you feel better than holding it up inside..  I know that once the surgery is over you will breathe a lot easier...  And feel free to holler at us any time you need it... We are here for you... we know your fears.. and we all try to move forward and enjoy every day....

Ron

Jojo61 said:

Thanks, AngeC,
I hope to hear

Thanks, AngeC,

I hope to hear that my surgery is soon. I have learned quickly that you guys are the ones to talk to!

 

God bless!

Hi Jo Jo... I just re-read your initial post...  You have a large tumor... you need the right Dr, not just any Dr..  Is this surgeon familiar with Kidney Cancer..?  If not you need to find one, period.   Keep calling and keep vigilant..  Sorry I can not sugar coat it, but the surgery will not be fun, but you can and will do it... 

Ron

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. 

twinthings said:

It'll be OK

I know how anxious you must be, waiting for answers.  In fact, waiting was the hardest part for me...even harder than the surgery itself.  My cancer was an incidental finding, in mid May.  My radical nephrectomy was the end of May.  The minute the doctor told me I had a cancerous tumor, I begged him to get it out of me ASAP.  He said his surgery schedule was pretty full...so I cried louder and begged harder...he worked my surgery in.  I was back to working from home within two weeks and back at my office within 5 weeks, which, was no easy feat considering I live in Oklahoma and work in Ohio. 

It certainly sounds like you will be having surgery soon.  You and I are about the same age, so hopefully you'll have a speedy recovery, like I did.  Granted, your tumor is more than double the size mine was, so your surgery may be open vs laparoscopic.  If so, you'll have a longer recovery period. 

Interestingly, I also read my diagnosis.  I was not told about it.  Had I not requested my medical records, I likely would not have known about the cancer until becomming symptomatic.  But, I learned a valuable lesson and, from now on, I will always request my medical records.

You are getting ready to learn just how strong you really are.  I'll keep you in my prayers and am sending positive energy your way.  Keep us posted.

 

 

Good Luck JoJo.

Listen to twinthings.  They found my mass during a gallbladder ultrasound and the doctor was going to do the gallbladder and did not mention the mass.  Get all your records.