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Scared and Seeking Comfort

AndyE
Posts: 51
Joined: Nov 2014

Hello all,

I must say that this is my first post, but I have really been encouraged after reading many of the other posts on this thread.  I was just diagnosed with a mass on my kidney this week, and I was told that there is a 95% chance it is cancer.  The tumor is 4.5 cm in diameter, and seems at this point to not be tangled up with the main veins of the kidney. I have not seen any blood in my urine at all, and the flank pains I have are sort of dullish.  They found this tumor while checking for gallbladder stones.   I am encouraged to read that the "cure" rate is very high if this cancer is localized to the kidney; but on the other I am scared out of my mind to read that the survival rate is 5-10% once it spreads out of the kidney.  I have a scan next week to check my lungs, and a meeting with the urologist the following week to discuss the surgery to remove this unwelcomed guest.  I have noticed several things that are concerning me:  I have been having lightness and balance issues off and on--these have gotten worse over the last two days after I heard the unfortunate news.  I wonder if this is a result of the stress, blood pressure fluctuations, and anxiety--but of course I always think the worst, that it may be a brain met.  I have also had some pains in my ribs on the same side as the tumor, so of course I think it is a lung met.  Others have told me that the likelihood of this thing having spread at 4.5 cm and away from the main veins is minimal and that I should stop worrying and just go through the screenings---I, on the other hand, am on the verge of checking myself into the hospital and demanding a CT scan of my head and chest tonight (as if I could actually get that to happen).  How concerned should I realistically be about this thing setting up camp in another campground?  If it does move into my lungs or head, am I a gonner?  I hate to ask these kinds of questions to you all, but I must admit that I am scared beyond belief and haven't been able to sleep or eat for 3 days.  Any advice would be greatly appreciated.

 

Andy

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Andy, welcome to our club.  I understand your fear, but I am going to recommend to you what friends recommended to me. Stop reading and thinking what can go wrong, because that will inevitably make you more afraid and cause you unnecessary stress.  You have scans scheduled next week, and it seems you have everyhing lined up with your urologist.  You have to trust your medical team.  Short circuiting the process by checking yourself into a hospital this weekend will not accomplish much.  It may do more harm than good, and you probably would not get the results on any scans until next week anyway.This is coming from a person who was scared as hell going into my surgery.  But at a certain point, I had to accept what was ahead for me, and put trust in my medical team.  Everything turned out great for me, and many others here.

 

I hope this helps.  Remain calm.  And think positive thoughts.  I am a big believer in the power of positive thinking. 

icemantoo's picture
icemantoo
Posts: 3317
Joined: Jan 2010

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

 

AndyE
Posts: 51
Joined: Nov 2014

I cannot thank you enough for these replies.  I am in freak out stage right now. I think they are looking at lapriscopic surgery, so at least that should be a bit quicker recovery time, although, as you said, I am sure it isn't fun surgery either way....as if any surgery is fun.  I worry about another spot on my original CT as well...opposite side of my infected kidney...an object that should not have been there...it wasn't attached to an organ, and the doctor wasn't sure what it was.  That alsoc concerns me....maybe an isolated tumor or something?  Maybe a glitch in the CT...hopefully. 

jason.2835
Posts: 337
Joined: Nov 2014

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
Posts: 51
Joined: Nov 2014

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.  

icemantoo's picture
icemantoo
Posts: 3317
Joined: Jan 2010

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

jason.2835
Posts: 337
Joined: Nov 2014

Andy,

I was lucky.  I obviously had a very experienced surgeon when it came to using the robot to do the surgery.  Honestly, my pain was never that bad.  They gave me morphine at the hospital the first night even though I didn't really need it.  I took aspirin only and an occassional tramadol at night.  I stopped taking everything after about 10 days.  Pain is all about how invasive the surgery will be.  Open version is bad, laparoscopy is much less bad.  For me, the pain was more of a general thing in the abdomen; almost like I'd done a REALLY tough day of abs at the gym.  There never was any sharp, stabbing pain in one place.  

The first week there was some low grade fever and your blood count will be a little low so you will be cold (assuming it's colder temps).  I didn't have dizziness ot vertigo.  I also didn't really notice too much marked muscle weakness.

Here were the bad things:

Appetite and digestion was really bad for about a week.  It took me three days to get down more than a few bites of anything; I would feel full immediately.  I think I moved my bowels on the third day... understand you will do a bowel prep the day before surgery with magnesium citrate and it will clean you out.  Then you pretty much won't eat anything the day of the surgery... so there's not really going to be anything to poop out (pardon the colloquialism).  After the surgery, your nurse is going to want you to get out of bed and take a short walk as soon as possible.  You must be as ambulatory as is possible.  It helps with your digestive system, which shuts down during surgery and needs to be restarted.

That leads us into the fatigue... for me that was probably the worst thing.  But it did go away pretty quickly.  First week, a short walk would wind me.  I would probably put it this way.  The first week of recovery I probably slept 12-16 hrs a day.  Second week 10-12 hrs, third I could get by with 8-10.  It does get better every week.  There will be times when you will feel tired randomly.  Those times get less and less frequent and last less time.

Hope this helps.   

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014



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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

Karen0074
Posts: 64
Joined: Apr 2014

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

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

1) Cure is not a word that is good to use.  Think of kidney cancer as a chronic condition.  

2) The survival statistics are based on old data....there have been signficiant advances in treatments.  I am approaching two years NED, after the diagnosis of RCC with a met to my lung.  

It is a scary thing to hear, but 4.5 cm is not that big of a tumor.  Assuming there are no mets (and there probably are not), then you will be stage 1.  

Other than recovering from a major surgery and followup scans for the next [depends on pathology] years, there probably will be no long-term consiquences.

 

Now, my story is similar to yours in a way.  I had a 5.5 cm primary tumor. It was removed, but mine was an agressive pathology.  6 months later, a let was found and removed.  So far, no other metastisis.  

 

Recovering from the kidney surgery was hard.  I am not at 100% 2.5 year later, but I had some complications:  an infection that impacted healing with more agressive scaring.  This is scary.   I know.

AndyE
Posts: 51
Joined: Nov 2014

This is all great feedback everyone!  I feel much more confident now, even if there are mets....which from the sounds of it is unlikely.  Here is another question for you (sorry again for be paranoid).  The tumor was scanned and measured 4.5 cm for the first time on Tuesday November 25.  How fast do these things grow?  I don't meet with the surgeon until Dec. 9, and the surgery will be after that...no idea how long after that...a week, two weeks, who knows.  I am so afraid that I am waiting too long to get this thing out and it may grow, spread, or become worse.  How long is too long to wait?  Stupid question I know, but your input thus far has made a tremendous impact on my well-being.

Skagway Jack's picture
Skagway Jack
Posts: 224
Joined: Oct 2013

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

icemantoo's picture
icemantoo
Posts: 3317
Joined: Jan 2010

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's picture
avdoty
Posts: 62
Joined: May 2014

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. 

APny's picture
APny
Posts: 1998
Joined: Mar 2014

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.

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

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.

 

 

lovelyoldgal
Posts: 1
Joined: Dec 2014

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. 

Skagway Jack's picture
Skagway Jack
Posts: 224
Joined: Oct 2013

Lovely,  My time took one month from point of gross hematuria occurring and having a urologist appointment.  In that month I had two total incidents of hematuria.  I was diagnosed within a week of my original appointment with the urologist and then the operation occurred roughly a month later.  August 3, 2013 first event to 15 October surgery.  I was not experiencing pain or other symptoms that would have caused them to hurry the procedure.   My tumor was 7x5cm and I was staged 1B after the biopsy.   Original measurements from the CT were slightly larger than the actual tumor.   Hang in there.  One year later I am living a normal life and I am confident you will be too.

 

Jack

aamdsi
Posts: 284
Joined: Apr 2014

First - I must agree with the others - stop googling!  I too did that after my diagnoses and thought I had everything from cancer to MS!

I was found ot have a tumor of 5 cm which was discovered due to an eye appointment believe it or not!  Surgery followed 6 weeks latler - the longest 6 weeks ever.  I wish I had found this site during those 6 weeks turst me!

I had an open partial and within 2 months after surgery was back to running, swimming, and racing.  Now granted it took a bit to get back to being able to race - but it just shows that you will come back after.

It is slow and surgery SUCKS!!! (hate that word, but it works here).  But you will get through it.  And once on the "other side" you will be able to start living a new.

Questions are great and with all the experience on this site - someone should be able to answer.  BUT do remember; ask your Doctor anything an everything.  THe right answers and knowledge are what will help you.

Hugs

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

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

 

DonMiller's picture
DonMiller
Posts: 109
Joined: Feb 2013

I had a large Stage 3 grade 3 tumor which invaded the renal vein and pretty much blew out the renal sinus.  No symtoms. It's been two years but I have another scan in January and the aniety is starting to set in a little.  Don't read the internet!  Geez. According the nanograms I would be dead already.  I don't brag but dont apologize either for taking a few valium in the week before mt scans

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