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Scared

pauley13's picture
pauley13
Posts: 35
Joined: Jun 2013

I am new to all this, just diagnosed with Clear Cell Renal Cell Carcinoma Grade 2. I have spent so much time reassuring my family that all be ok, when i actually i am scared to death.  My tumor is a little under 3 cm on the upper lobe of my left kidney, i dont know what to think or do.  i see my dr June 19th to plan for surgery...what do i do until then??  I have 3 babies (10, 7, and 5), do i tell them, do i not?  How long will i be in the hospital, how long will i be off work...Wow alot of questions??

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

Pauley,

 

The truth is that you will be fine. You are having surgery to attack and remove a small tumor in your body. There is CANCER and there is cancer. You got the little one and you will be fine. It is normal to be scared when you here the word cancer and surgery at the same time. All of us on this board have either had Kidney cancer or are caregivers for someone who had kidney cancer.

You are one of the lucky ones whose cancer was found early and a full recovery from the surgery alone is in the cards,

You will be in the hospital for a couple of days, home on the couch for a few weeks and backto work in a month or 6 weeks depending on what you do.

The surgery is not  fun, but it beats the alternative. Mine was 11 years ago. Faye across the street is 82 and hers was 18 years ago, 

 

Icemantoo

 

 

pauley13's picture
pauley13
Posts: 35
Joined: Jun 2013

Thanks Icemantoo.  My mother went into the hospital 3 years ago, for what we thought was dehydration. She was producing urine on Sept 8, on Sept 9th she wasnt and 2 days later on dialysis and passed away on October 15th. So the whole kidney thing in general scares me. What actually caused all that we dont know.  So when my nurse (who was a good friend of mine) found blood in my urine thought I should be checked out after everything my mom went through. I am glad i listen, that is when my tumor was found.  CANCER is just such a powerful word to scare anyone.  Reading alot of posts tonight have really helped calm me a little.  The word surgery scares me alot!!  I appreciate the info Smile

 

Crystal

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

Even though its the most natural reaction of all.

Find some comfort in (as Iceman also writes) that you have been caught early. The outlook for RCC is very good when caught early and with such a small tumor. You will be around for many years to come.

/G

pauley13's picture
pauley13
Posts: 35
Joined: Jun 2013

Thanks G!  i have 3 beautiful babies i want to see graduate college!!  I have always been healthy, i dont smoke, i am not overweight or have any other health issues, so this was a big shock for me.

 

Crystal

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

For stage 1 RCC, which is what it sounds like you have, the treatment hurts a lot more than anything else.  With that said, you need the treatment, which is surgery, as you know.

You will get through the pain, and with a little luck, will be back to normal by mid july.  Or you will define a new normal.

I had my surgery on June 19, 2012.  It has been hard; my tumor was somewhhat bigger, and has matastistised.  But, I am still alive and typing.  And living.  Make sure you have help at home for the first 3-4 weeks, and possibly up to six.  But, the long term prognosos is excellent.  You should live to see your babies get married.

pauley13's picture
pauley13
Posts: 35
Joined: Jun 2013

After all this i am really starting to feel a little better.  Most things you find online are so negative, its good to hear some POSITIVE Smile

 

Crystal

Darron's picture
Darron
Posts: 242
Joined: Jun 2013

I had a much larger tumor - more than 15 cm and was out of the hospital in 3 days. I was out of work a total of 3 weeks after surgery. I recovered quickly with lots mild short walks, lots of water and rest. My surgery was a hand assisted laproscopy.

I am a fellow non smoker, healthy, 43 year old with 11 and 14 year old boys. We told the boys early and have involved them with some limtations. Cancer impacts the entire family, not just you. You are scared of the unknown, they are too. There are plenty of caregivers on this site too.

if you only have a urologist at this point, I would suggest an oncologist meeting as well. IF you ever do need follow up treatment, you will already have an established relationship. Find an oncologist that specializes in kidney cancer, not just any oncologist. Kidney cancer can be sneaky, and a eye trained to look will do a better job of reviewing your follow up scans.

keep in mind when you read anything from the internet, you are reading old data. If you look at a five year survival rate, you are looking at 5 year old data And treatments.Most of the treatments you see mentioned have been released in the last couple years, if not months.

Stay positive and know you can beat this, and you will!

 

DonMiller's picture
DonMiller
Posts: 102
Joined: Feb 2013

I agree with Darron and believe both of his comments are important.  I think the phrase " When one person has cancer the entire family has cancer" is really true .  I did not handle telling my children well.........especially my daughter. In retrospect I would have been straight forward and omitted the false bravado at home and in the office which I think exhausted me  

I also had a much larger Stage 3 grade 3 tumor, but believe his advise on finding an oncologist is critical. As I have mentioned before I had a great deal of confidence in my urologist as a surgeon but less so as a Doctor.  My oncologist specializes in kidney cancer and his active survaiellance with CT scans and blood tests makes alot of sense to me.

The surgery is not that bad.  A few days in the hosipital and a few weeks ar home and you will be fine.  You have to make sure you have a TV with cable and netflix and not to try to do too much too soon.  It is great news that they caught it is so early and it can be cured by surgery.  I never had any symtoms at all even though my tumor was 11 CM which I still find hard to be believe.  You are really lucky and will be fine

 

Don 

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

Most of the stuff on line is about more advanced cancer:  mets and all.  Without mets, the cancer is likely cured with surgery, particularly, if it is low grade (you will know that after the pathology report).  You still have the followup scans and all, but that is it. 

Regarding what you read on line, 1) it is based on data that is 5+ years old.  In addition, individuals that blog tend to write about problems.  Even on this board, with one or two exceptions, the people that are here a lot have more advanced cancer.  So, it makes things look bad.  But even those with advanced cancer are still here...Fox, Texas, and others (myself included).

BLKJAK
Posts: 108
Joined: Apr 2013

I agree with dhs1963 that what you read online is old data. That old data will make your mind race and can fill you with fear. I made the mistake just today of going to the beginning of this particular category which goes back to 2002 or 2003. Outlooks back then were pretty grim. I got freaked out and worried. My wife reminded me that those posts are a decade old and there are so many more treatments and better outcomes now. I'm still pretty worked up emotionally. It doesn't help that a high school friend's 21 year old son's funeral was today. He passed away from bone cancer. I think it's time for a lorazepam to calm me down.

Stay focused, stay strong and live!

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I remember that feeling of  first "What the hell did he say," and then breaking the news to family and keeping a calm demeanor while my mind was reeling.

I am four weeks out from, surgery as of today. Mine was 4.5 cm, grade 3.  The procedure was a hand assist Laparascopic radical nephrectomy (you'll learn this jargon pretty quickly.) I am fine and I will continue to be fine as long as I remain positive and follow through.  I am planning on being shot by a jealous husband on my 93rd birthday.  I feel you will have equal prospects! Wink

Be grateful it was found early and you have a loving family to support you!  Bring them into the loop.  They need to know what is happening and why, adjusted to age appropriateness. They also need to see you armed with a positive attitude and an understanding of what is going on.  They deserve that.

Use this site for your education.  There are lots of people here whop have gone through this whole process and can help you allay any anxieties.

If you have to be in a club like this, you have picked a good one!  Welcome, with all the regrets for needing to be here!

Michael

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Scared heck yes.. but..  If you heard anything about Cancer over the years.. it is that early detection is the key..  You just won the Cancer lotto..  There are a bunch of us here, living (no not dying) with a lot more advanced Cancer..   Consider this just another one of life's pain in th butt.. No wait, that is not whree it will be a pain for a few days... :).   Once the deed is done, you will look back and sigh...  I agree, tell the kids.. you really think they do not know something is up..??  Yes, they likely know something is not right... tell them how lucky you are that it was caught early.. (turn the negative in to a positive)    However, keep in mind that until they get that little sucker out, they are only guessing at the fine details.. and DO get the follow ups, no matter what.  Most likely you will be in the clear.. but you gotta be sure..

Oh and no oogling at the pretty nurses... save that for us ugly single guys..  :)

Be Well...

Ron - figthing the good fight...

ajens2528's picture
ajens2528
Posts: 11
Joined: Apr 2013

Definitely scary Pauley! I am 24 and had a 3.2 cm tumor removed from my kidney on April 18th. It was in the cortex which is up and away from all the renal veins and other things that affect your kidney function. That sounds like where yours is, so thats great news right there! It was stage 1 and grade 2 which was excellent. They got it all and the chances of it coming back are slim! You will likely share the same story :)

My advice to you is let your family help you out with some of your stress. (Maybe not the kiddos, but other close friends and family) I did not so much, and I had a short episode of some PTSD for a day. Not fun. Also, learn as much as you can and write up a list of questions at every appointment. I went in with 2 pages of hand written questions and my doctor took the time to answer every one. You want to know as much as you can! Keep asking questions- even the hard ones!

But otherwise it was just like everyone said! 2 days in the hospital, 3 weeks off from work. My recovery went fantastically, I felt completely  normal by 5-6 weeks post op! Good luck!

donna_lee's picture
donna_lee
Posts: 438
Joined: Feb 2009

Just tell them there is something inside you that makes you sick, the Drs. are going to take it out and that you'll be sore and not be able to bounce them on you lap or tummy.  Kids are very perceptive and will pick up on your cues. They'll be able to visit and will be curious about bandages. tubes, IV's.  When you're able, let them push the IV pole while you take a walk with them.  My grandson's about wore me out walking around the unit.  Time in the hospital can vary depending on what the docs find, how long the surgery lasts, how invasive they must explore, how soon you recover from anesthesia, can do all the required's (eat, pee and poop and walk).  2-3 days up to 4-5 days in hospital.  Rest, fluids, and help with housework and kids at home.  As you begin to sleep comfortably, walk without tiiring, etc. you'll know when to add a little more activity.  Don't overdo it, even when you think you are flying on top of the world at about 4-5 weeks.

I've Been There, Done That, and here to talk about it 7 years ago this month.

Good Luck, Safe Travels, and have a happy LaLa land.

Donna

pauley13's picture
pauley13
Posts: 35
Joined: Jun 2013

Thanks everyone!! I really appreciate it and it truly helps.  I try to figure things out on my own and keep things to myself, but I think this time I will need help of friends and family to get through this. I have a great fiancé who is really doing everything he can to keep everything on the positive side. My biggest worry with my kids is scaring them.  I didn't know how to include in my care and them not worry?!? 

Thanks again for everyone words of wisdom. my anxiety level has dropped a few levels!!

Crystal :) 

AprilandChuck's picture
AprilandChuck
Posts: 104
Joined: Feb 2013

Our grandson who is very close to us..is 4 he has been apart of this process from the beginning.  Our oldest his Mom is a nurse...and wanted him to understand why Papaw could not do certain things for awhile..Chuck was inthe hospital for almost 3 weeks after he was diagnosed Kaleb visited often and got to know Chucks Drs...he is very comfortable with them and at visits..he says they are going to fix Papaw he's 4 he gets limited info but enough that he's comfortable...our children are older than yours but our youngest left for college after his nephrectomy.. that was tough on her..we promised not to hide anything and she comes for appointments when she can...if kids think parents have  a big scarey secret (because they pick up more than we think) it makes them uncertain and insecure...all the best huggggs

P.S. congrats on hitting the cancer lottery early detection is an awesome thing!!

 

pauley13's picture
pauley13
Posts: 35
Joined: Jun 2013

Thanks for the information.  My kids come home this week from a 2 week vacation with their dad.  I want to try to explain things without scaring them. Do i tell them i am having surgery becuause of cancer? is that too much for them to handle? 

P.S. Thanks

tlr2e
Posts: 10
Joined: Feb 2013

Pauley I totally understand.  I am a nurse, and my natural instinct is to care and worry for and about others.  When I was diagnosed in December I spent my Xmas break being positive and cheery for my family and extended family but was so scared waiting for a plan of treatment.  My kids are 11 and 14.  My husband and I told the kids as soon as we found out about my tumor.  We have always been very honest with them as I did not want them to think we were hiding anything.

Your treatment and hospital stay will be dependent on other factors, which through my reading on this board is specific to each person.  I have not yet returned to work and my surgery was 1/25/13, however I have had a few complications such as a pulmonary embolism, hospitalized for extreme dehydration, and discovery of bone mets in March and needed radiation therapy.  As sick as I was before I had a diagnosis and then surgery, the doctors frequently remind me that I am making progress.  My nursing job is very physical and the oncologist is not yet ready to release me for work.  I have been a lurker on this site for several months and have read so many different things, but the one thing I do know is that you will receive tremendous support from others on this board.

pauley13's picture
pauley13
Posts: 35
Joined: Jun 2013

I am also in the medical field, which i think makes it tougher.  It so easy to stand by a patient, be honest but always look at the positive outlook on everything.  Now that i am the patient, i am scared and up until i found this website, could not find anything positive. 

 

After the surgery, then whats next??  One kidney? New diet? restrictions? 

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

Crystal,

 

After the surgery you are going to have to lineup full time child care for at least a month while you are recouperating. After about 3 weeks tou can partake o=in your usual activities, but not 8 hours a day, Maybe a couple hours a day after 3 weels. The best thing you can do for your kidney health wise is watch your blood pressure. Diet. There are plenty of sources for a healthy 1 kidney diet. I keep telling myself I am going to have to address it more seriousky soon. Restrictions, do not push yourself.  Roller coasters are going to have to wait until next summer.

 

And don't worry about being aroudn for the kids graduating high school. With your prognosis think about their college, weddings and grandchidren.

 

 

Icemantoo

Stros2013's picture
Stros2013
Posts: 31
Joined: Aug 2012

Pauley13,

Couple of thoughts As a 44 year old father of four (14,12,3.5,2)......

1) it's natural to be scared as well as its hard to diminish the fear with anything other than time and education.  Stick with SmartPatients.com or this board for input and guidance.  Stay away from google.  In time,  the shock will deminish and you'll resume some resemblance of the life you had..But..you'll have to learn to live as a survivor.  Living though is the key word.   it takes some of us longer than others but you will feel better after some time down the road.  Personally, I'm viewing the entire experience as more of a gift these days.  I never really noticed the trees, the wry smile of my littlest in her impish mannerisms, the beauty outside. Etc..etc..etc   It's a gift to value more greatly that which we were fortunate to have not lost.

the second thought is to see if there's a local support group/network for kids who have parents with cancer.  Here in Austin,  my two oldest joined Wonders and worries and have gone monthly for over a year.  It's free thanks to fundraising and monies from Livestrong.  The chance for kids, with a therapist, to express their pain, confusion and fear was/is huge and while I am fine and doing well, they too fell the anxiety of Upcoming scans.

welcome aboard.  You'll do fine and as mentioned  above, early detection is a very, very good thing.

Astros2013

pauley13's picture
pauley13
Posts: 35
Joined: Jun 2013

Thanks. I never thought about a group for them.  I will definitely check into that.  Getting them involved is scary for me.  I just dont want them to worry. 

I am really all so new to all this.  i just dont know how to handle it all myself.  What is all the steps.  I was diagnosed with Clear Cell Renal Carcinoma, he said surgery, now what?  I go back Wednesday to get more details and plan.  I am more than overwhelm at this point and time.  My fiance is being so great to let me cry when i need to cry, ramble when i need to ramble. He is my rock.  I just dont know what to expect.  I guess its like a emotional rollercoster.

Stros2013's picture
Stros2013
Posts: 31
Joined: Aug 2012

What you're doing is the process.  This is emotional.  You've been told that you have cancer.  Continue to lean on your fiancé, friends and this board for support.  We've all been where you are.  

The hard part is trying to understand the significance of your tumor size.  That's the education piece.  Smaller rumors have a very good chance of non recurrence.  Believe in that as best you can.

expect to be in the hospital for a few days.  Expect some level of pain afterwards (dependent on your procedure for removal of the tu,or).  Expect to continue with highs and lows emotionally even after the surgery.  Plan to have help around the house for three or four weeks.

the big thing that helped me was having someone with me in the doc meetings.  Emotionally I couldn't take it in.  My wife wrote everything down and askEd all of the questions we had written down the night before.  It was huge.  Later,  when I was less numb we went over what the doc had said and I was a little more able to separate the fear from reality.

you will be fine.  Keep putting one foot in front of the other.  Keep on, keep on.  You'll do great.

 

garym's picture
garym
Posts: 1651
Joined: Nov 2009

That's great advice!!!

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Well said! 

Your kiddos are only young, not stupid.  They are looking for the same truth  and openess from you that you expect from them.  I think I'd tailor it to age appropriate, and look for a group for them as well.!

I'm wishing all the best for you and your family!  You will handle this!  Believe me!

Michael

Bellweather
Posts: 52
Joined: Jun 2013

One step at a time, you will get through this!!

Beautiful family by the way Stros!!!

Bellweather
Posts: 52
Joined: Jun 2013

Pauley, I too am scared sometimes.  For me it helps to read a good book, play board games with my family, anything to pre occupy my mind.  I think everyone here has their moments of aprehension as it is natural.  Stay as active as possible and keep moving forward.  I hope this helps, our prayers are with you.

pauley13's picture
pauley13
Posts: 35
Joined: Jun 2013

So i meet with my urologist/oncologist/surgeon Wednesday...i am nervous what all will go on.. we are suppose to schedule surgery. But is that it, diagnose then surgery? Nothing in between??  My CT shows that i have a "focal lesion" on my left side of my uterus (my rcc is in left kidney). What does that mean? can anyone help

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Pauley,

Surgery usually precedes final diagnosis with this nasty little bugger.  It did in my case for sure.  With a very healthy remaining kidney, it was the least risky option.  I didn't officially become a "cancer patient" until after the pathology report.  If your mass is intact and fully encapsulated, they don't want to risk a biopsy is my take.  There are others who can speak with more authority on that.

Life with one kidney can be very very normal.  My mother had a radical and a partial nephrectomy in 1966.  She lived a very full life until 2001. It means some modifications, but no diminishing of the quality.

Hang in!  It is the anticipation that is your greatest enemy right now.

Michael

 

Djinnie's picture
Djinnie
Posts: 914
Joined: Apr 2013

Hi Pauley, 

We have all been in your shoes, it is a scary situation to be in. Try not to let your mind create a blue print of a negative outcome, you will come through this and have your whole future to look forward to.

I know you are in a dilemma about whether to talk to you young family about this. You know children pick up on things very quickly, they are intelligent and intuitive. They will take their cue from you, if you appear scared then so will they be. If it were my choice I would explain to them so they know what to expect, and just reassure them that you will be fine. Because you will be:)

I had major surgery when my daughter was just six years old. We bought her a nurses outfit and a doctors bag, and made her my special nurse. She loved coming in to take my temperature and listen to my heart. It was not a frightening experience for her at all. Might be worth thinking about something like that for your little one.

Don't worry too much about the lesion right now, wait to hear what your doctor says tomorrow. Quite often small lesions seen on the uterus are polyps or small fibroids.

There is usually no where else to go now but surgery, I hope they give you an early date. All the best for tomorrow:-)

 

Djinnie x

 

 

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hey Djinnie.. sorry, but I have no uterus..!  Oh, you meant the surgery..  In today's medicine, the Scan you had is good enough for the Doctor to have a real good idea of what that mass is.  I think doctors differ on the biopsy, yea or nay..    Hang in there... remember the fear is far worse than the reality..  It sounds like you will be just fine..!

Be Well..

Ron

canadiancruiser's picture
canadiancruiser
Posts: 7
Joined: Apr 2013

I had my 3.5 cm tumor taken out sept 13th 2012. it was on the upper lope on my right kidney. my doctor took 30% of the kidney as he said with my age (52)  that should something happen to the other one i would still be able to get alone with 70% that he left.i was in hospital for a week and down for a total of 6 weeks. there was pain but nothing like the pain i felt telling my 14 year old daughter after trying not to worry her. she knew something was up as the phone calls from doctors and the hospital were coming in.. i came home one day to find her crying and asked whats up she said she knows there is something wrong and wanted to know now what it was. so i told her all about it and she was hurt that i didnt tell her from the start.. so i have learned that kids know when things are not right and trying to keep it away from them only makes them more uneasy and worried. so keep them informed as much as you can and they will take it better then you think. good luck and not to worry it is not as bad as your mind wants you to think its is you willl be fine and live a long life.. bye for now jim

 

pauley13's picture
pauley13
Posts: 35
Joined: Jun 2013

Thanks Jim.  I actually took my kids to the cancer center with me one day while i pre reg for my surgery. They actually got to meet they entire surgery team, (doc, assist, and the 2 nurses).  Everyone was awesome with them.  i gave them a few days to let it sink in then while we were on the front porch one evening my middle child decided she had questions and then they all had questions.  we set out there (no phone , no tv, no distractions) and discussed it for about a hour or so.  they are smart kids, they have been around the medical field (their dad owns a ambulance company and i have always worked at the hospital) so they understand and know alot about things.  But i still kept it down to age appropriate when discussing it. 

Almost a year later now for you, how are you doing??

Thanks

Crystal 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Well played!  Well played indeed!

canadiancruiser's picture
canadiancruiser
Posts: 7
Joined: Apr 2013

yes its almost a year now how time flies. did my blood work, next month is xray, then sept is a cat scan then done for 6 months..after my surgery couldnt do much for 6 weeks so i got lazy and put on 20lbs..now i have that to take care of also..lol.i have been working since april so thought it would come of easier but no luck..are they going to take your whole kidney or part of it as you are younger than i am. my spot was at the top of my kidney so they took about 30% of it.my family wanted them to take it all, so i talked it over with the doc and he said they are finding it better to leave as much as they can in case of a problem with the other one which make sence..when are you going in for yours..    talk later

FiatDriver
Posts: 11
Joined: Jul 2013

We told our 12 and 9 year old kids.  I am not sure we could have not told them.  They are very perceptive.  I had almost the same tumor you have.  Make sure you feel comfortable with the surgeon.  My first urologist said he would have to remove the entire kidney because he wasn't experienced with robotic surgery but luckily he refered us to one of the leaders in robotic kidney surgery in Philly and he didn't present any option other than saving the kidney.  

I feel pretty lucky.  I had one bad episode of pain and decided to go to the doctor who sent me for a ct scan.  The surgeon said most primary physicians would have blown it off.  She saved my life.

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