Scared

pauley13
pauley13 Member Posts: 35

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??

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Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Tell your family the truth

    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

     

     

  • Galrim
    Galrim Member Posts: 307
    Dont be scared...

    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
    pauley13 Member Posts: 35
    Galrim said:

    Dont be scared...

    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

    :)

    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

  • pauley13
    pauley13 Member Posts: 35
    icemantoo said:

    Tell your family the truth

    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

     

     

    Thanks

    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

  • dhs1963
    dhs1963 Member Posts: 513
    pauley13 said:

    :)

    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

    RCC STage 1: treatment hurts more than the disease

    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
    pauley13 Member Posts: 35
    dhs1963 said:

    RCC STage 1: treatment hurts more than the disease

    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.

    Thanks :)

    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

  • MDCinSC
    MDCinSC Member Posts: 574
    Great advice here!

    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

     

  • Darron
    Darron Member Posts: 310 Member
    pauley13 said:

    Thanks :)

    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

    Crystal

    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!

     

  • dhs1963
    dhs1963 Member Posts: 513
    pauley13 said:

    Thanks :)

    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

    On line stuff

    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).

  • GSRon
    GSRon Member Posts: 1,303 Member
    MDCinSC said:

    Great advice here!

    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

     

    Right..

    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...

  • DonMiller
    DonMiller Member Posts: 109
    Darron said:

    Crystal

    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!

     

    Crystal

    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 

  • ajens2528
    ajens2528 Member Posts: 11
    Definitely scary Pauley! I am

    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
    donna_lee Member Posts: 1,041 Member
    ajens2528 said:

    Definitely scary Pauley! I am

    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!

    All sorts of "Advice'

    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
    pauley13 Member Posts: 35
    donna_lee said:

    All sorts of "Advice'

    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

    Big Help...

    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 :) 

  • BLKJAK
    BLKJAK Member Posts: 108
    dhs1963 said:

    On line stuff

    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).

    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!

  • tlr2e
    tlr2e Member Posts: 10
    Pauley

    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
    pauley13 Member Posts: 35
    tlr2e said:

    Pauley

    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.

    tlr2e

    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
    icemantoo Member Posts: 3,361 Member
    pauley13 said:

    tlr2e

    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? 

    After the surgery

    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

  • AprilandChuck
    AprilandChuck Member Posts: 110
    donna_lee said:

    All sorts of "Advice'

    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

    kids

    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
    pauley13 Member Posts: 35

    kids

    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!!

     

    AprilandChuck

    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