Scared and Seeking Comfort

Andy,,

Your story is similar to mine 12 and 1/2 years ago with a similar tumor size and diagnosis and being told you need major surgery right out of the gate. Like you hearing the word Cancer was to say the least unsettling. And whoever heard of Kidney Cancer. As part of your workup before surgery you will have at minimum a chest xray which would identify nodes in the lung over 8mm which could be a concern. More recently they have been using chest CT's. They have the advantage of identifying smaller nodes and the disadvantage of identyfying smaller harmless nodes.

Absent an unexpectantly aggressive tumor on the pathology after surgery, the surgery is usually a full and complete cure for a 4.5 cm tumor. The surgery is not fun.There is no way to sugar coat it, but it is better than the alternative of doing nothing.

There is one piece of utter misinformation in your post. The statement that your survival rate is 5 or 10% if it spreads is utter nonsence and has no basis in fact. The reason for frequent scans after surgery is to identify any concern and nip it in the bud. At 4.5 cm even if it spread which is the exception rather than the rule your chances for a full and complete recovery remain very high.

After you are diagnosed, the belief that every ache and pain is the Cancer spreading is pshchiatric rather than physical.

You will be fine. You will recover. After a while you will ask why in the world did I worry so much .

Wecome to the club which no one in their right mind would volunteer to join on their own.

Keep us posted on your journey and that not so fun surgery. We have all been there and done that.

Icemantoo

Andy you're story is shockingly similar to mine.  It was also caught when they were checking my gallbladder and abdomen.  I agree with Ice up there, too... 5-10% survival once it spreads?  I thinks thats way too low.  You have to remember a lot of info found on the internet can be up to 20 years old.  There are so many treatments right now that there are options for most situations.    

One of the things I did when I first saw the MRI report was to "fill in the blanks," which is what you're doing right now.  I nearly drove my wife crazy.  Unfortunately you don't know enough to make ANY kinds of assumptions. Neither do the doctors.  They're not going to tell you anything until they get the tumor out and look at it under a microscope.  Really, the scariest time for me was waiting for the pathology to come back.  At that point I knew it was a tumor; I was just hoping it wasn't anything too crazy or rare.

The reality is: 85% or so of cancerous tumors in the kidney are clear cell RCC; and if that's caught Stage 1 and removed completely, the cure rate is over 95%.  Worrying about metastases or other things that you don't know right now is pointless.  I know that sounds crazy, but really you just need to deal with what's in front of you one step at a time.  It sounds like it WAS caught fairly early... so try to stay on the positive side which is: better caught now rather than 5 years later when it's over 10 cm.  

Get the surgery, get it out and go on from there. 

AndyE said:

How long arter surgery did

How long arter surgery did you start to notice relief from symptoms?  That is assuming you had some.  For instance fatigue, low grade fever, dizziness, vertigo, muscle weakness in arms and legs, etc.  

Andy,

After the surgery you are going to feel very weak and in some pain for a week or 10 days. Pain medication will help, but it causes constipation and no one in their right mind wants to be constipated a week after a neph.

In all likelihoood the aches and pains following surgery will be different from those before. It will take 4 to 6 weeks to feel  "nrmal".

Write down and save any questions for your doctors. Initially the surgeon and than your GP.

Absent the unexpected you will be fine and those of us who have had a neph. have earned the right over time to laugh about it.

Recovery is in large part related to your age and general health which you have left out.

Icemantoo

foroughsh said:

take a deep breath

Hi Andy

Your feelings are very similar to mine. More than three months ago I was deadly shocked. I had a little flank pain, they found a 10cm mass in my right kidney, and I did open radical nephrectomy just 4 days after the diagnosis, and got the primary pathology report three days after the surgery, so I was still in a big shock when they gave me a paper with a "kidney tumor" written on it!!!! I couldn't believe it; it was like a nightmare to me. So I feel you but look, there are some good things on your side, the tumor is small so you can be hopeful that it hasn't spread and it's stage 1 which makes it easier to deal with. You have found this forum which is more than helpful so soon, it took me almost one month to find it and since that day things changed in a better way for me. It helps when you have someone to fully understands. My friends and family are wonderful to me but nobody except us (cancer patients, or let's say cancer survivors) can really understands what's on our minds, so come here and ask all you questions and seek help, people are great in this forum, they'll help you.

I had all possible symptoms of brain, lung, bone mets right after knowing it was a cancerous mass. Terrible headache, coughs, difficulty to breathe, vomiting, horrible bone pains in almost all my body, I could almost hear the sound of my heart!!! But here I am, three months post surgery and HEALTHY with no evidence of disease based on my last week CT report and no symptom. So they were not real symptoms, they were fake and created by my mind!!!  Mental or psychosomatics, believe me stress can kill.

 I can't tell you, don't worry because it's impossible but do your best to stay positive, find the best urologist who is expert in RCC because it's very important who is doing your surgery especially  for partial nephrectomy, don't hesitate asking  all your questions even the craziest one from your doctor and finally trust them.

Andy,  It's not a dream, but we have to face it,  this is not the end of the world, here in this forum many ones are stage 4 and are living their life, yesterday was my birthday, first birthday after diagnosis with stage 2 RCC and I enjoyed every details  of it, that's good thing cancer brings, you enjoy all detail of your life the way you could never imagine earlier.

Come back after surgery and give us good news

Forough

Hi Andy

Welcome, first of all don't google. Like others have said statistcs are out of date.

i was diagnosed with a 2cm tumour in April this year and the weeks that followed were awful, I never want to go back there ever again. like you mine was discovered after an ultrasound for gallbladder issues (gall bladder was fine) I freaked out and I was more worried about my chest CT wondering if it has spread (It hadn't). I have also suffered lightheadnesis for years and pain in left rib. In a way the CT finally gave me a diagnosis of rib pain, degenerative bone in my spine and as my lungs were clear there was no need for head CT, I have just put it down to stress.

the good news your tumour is small and on the very positive side it was found incidently, you are one of the incredibly lucky ones and good luck is on your side already.

you have joined this incredible group who helped me so much at that terrible time of diagnosis And as a member said to me, which I always remember, think of this as a new exciting time in your life your new normal and it will be an exciting journey.

You will prob have a partial nephrectomy laparoscopic which in my opinion was not to bad and not very painful.

if you are worried or have any questions check here first rather than dr google, 7 months down the line I am putting it all behind me and enjoying my new normal I don't think I'll be waterskiing anytime soon as icemantoo suggested back then, not because I can't but because I'm too scared!

The members on this board gave me lots of good questions to ask the urologist, because as soon as I went into the office my mind was blank. I found out so much info from those questions.

Good luck

Karen xx

Skagway Jack said:

Had the same question myself when I was waiting.

RCC is actually fairly slow growing at least in early stages.  I waited a month between diagnosis and surgery and that was considered common. My Dr. actually offered that I could wait longer if needed...I was all about getting it out as soon as possible.  Good luck and sorry you had to join the club here.

 

Jack

Andy,

You will see if you read enough posts that those with large tumors get their surgery either within a few days or weeks. I waited about 2 months as mine was during golf season for the doctors.

This is one line where you do not want to be the guy taking cuts.

Icemantoo

avdoty said:

Mind Games

I experienced the same mind games you're going through. I've been to the emergency room 3 times since my surgery which was only 6 months ago. Nothing was wrong with me each visit. The reality is that I've had a pretty easy recovery. I was back at work in less than 2 weeks from the surgery date.  Within 7 weeks I did a sprint triathlon and since then I've run in a 5-K, 3 10-Ks, a half marathon and next week I'm going to run in a full marathon.  My current view is that I may be in better shape than I was before surgery because my body used to be busy fighting the tumor and now it doesn't have to waste that energy. Trust your doctors and try to have positive thoughts. 

By by the way, my surgeon told me that kidney tumors grow pretty slowly and suggested that I could wait to have my surgery. I ended delaying my surgery for a few months in order to take a planned vacation. My pre-surgery CT scan estimated my tumor to be 2.1 cm. Actual size ended up being 1.9 cm. I have to admit though that I thought about the tumor the whole vacation. 

My surgery was a little more than 2 months after the diagnosis of a 3.4 cm tumor and my surgeon said there was no dire rush. Of course you don't want to wait forever but a month or two is not going to make much of a difference in a tumor that size. But I totally get the mind games. I often get lightheaded and dizzy and of course brain mets is the first thing that flits through my mind. It's hard not to let your mind go there.

APny said:

My surgery was a little more

My surgery was a little more than 2 months after the diagnosis of a 3.4 cm tumor and my surgeon said there was no dire rush. Of course you don't want to wait forever but a month or two is not going to make much of a difference in a tumor that size. But I totally get the mind games. I often get lightheaded and dizzy and of course brain mets is the first thing that flits through my mind. It's hard not to let your mind go there.

Everything in medicine is triaged.  That means the most urgent go first.  If they tell you that the surgery will be tuesday, that is when you worry.

I think being scared and anxious is totally normal. I am now 3 month post surgery and I am still scared. 

One of the thing I am learning is that waiting is part of the "game". I am not what is called a very patient person. But for the last 4 months, I found myself always waiting for something I can't control. Waiting for the results of my first tests, waiting for 1st meeting with the urologist, waiting for results of scans to see if it's spread, waiting for surgery( 4 weeks of unknown, I agree with you, it's long) and now waiting for my next blood tests and ct scan in February and March ... That waiting is the worst for me.

As others have said, don't Google too much and keep yourself occupied as much as you can so you won't think about that crab all the time. 

Stay strong

Dave

Skagway Jack said:

Had the same question myself when I was waiting.

RCC is actually fairly slow growing at least in early stages.  I waited a month between diagnosis and surgery and that was considered common. My Dr. actually offered that I could wait longer if needed...I was all about getting it out as soon as possible.  Good luck and sorry you had to join the club here.

 

Jack

Jack, I was just given the shocking news 4 days ago. I have a 6.7 cm mass on my kidney. Of course it has me freaked out but what is impacting me more is the wait before my surgery. Reading your post regarding a similar time period was reassuring to say the least.