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  • Melliebean
    Melliebean Member Posts: 53
    aamdsi said:

    try to enjoy

    The summer as much as you can.  Keep walking and getting plenty of exercise - that will help the non-sleeping a bit too.  It will also ease getting back to "normal" afterward.

    Anxiety is almost a good thing, for if you weren't a bit nervious and such about all this, I doubt you would ask all the questions that should be asked.

    I found the waiting for the surgery harder than the surgery and recovery afterward!  I had an open partial in March.  Had a worse time with the pain meds they were giving me (I was trying to get them to stop, didn't need them at all) than anything else.  Once out of the hospital - walk, walk and walk some more.  Moving around helps everything from pain to getting the insides moving (if ya know what I mean).

    NO PICKING ANYTHING OR ANYONE UP!  Now that was hard - but trust me, it's harder if you make the mistake and do it 8-(. Wait the 2 months (or what they tellyou to).  I did, however, use 5 lb weights to keep my arms and shoulders in shape (they were apporved) and it made me feel better.

     

    Once the staples (or whatever they use) are removed even the incision will start getting back to its new normal.

    You will get through this.  I found this site to be very helpful in doing just that!  People here are from all walks and at least one oterh person will have gone through whatever you may be feeling and they will help.

    Hugs to you. Now go enjoy some sunshine (raining here ...again)

    Laurie

     

    Odd symptoms

    I found out today it will be early August instead of September 8. I notice many time people who develop RCC seem to have found out and had little or no symptoms. I have been having a problem with extreme fatigue for several months. It's like once or twice a week for several months I have gotten so tired I feel like my body is sinking into its self. And then I become so drowsy I just can't fight it. Another symptom is severe leg pain, not sure why it's related or even if it really is but it's why I got to the doctor. And just a general feeling of feeling unwell. So I am glad they moved it up. I am ready to feel better and have my energy back. So down a month on the waiting now.

  • dhs1963
    dhs1963 Member Posts: 513

    Odd symptoms

    I found out today it will be early August instead of September 8. I notice many time people who develop RCC seem to have found out and had little or no symptoms. I have been having a problem with extreme fatigue for several months. It's like once or twice a week for several months I have gotten so tired I feel like my body is sinking into its self. And then I become so drowsy I just can't fight it. Another symptom is severe leg pain, not sure why it's related or even if it really is but it's why I got to the doctor. And just a general feeling of feeling unwell. So I am glad they moved it up. I am ready to feel better and have my energy back. So down a month on the waiting now.

    They may or may not be symptoms...

    There are many things that can cause most kidney cancer symptoms....Severe leg pain is one I had not heard before...tiredness could be from your body's imune reaction. But it could be from not getting enough sleep at night.

     

    In my case, I had (in hind sight) four symptoms:  Night Sweats, unexplained weightloss (I was happy about that...lost 25 lbs in 5 months), afternoon fatigue, and a sore back...I was actually going to talk about the fatigue...but then I had the tramatic event that lead to the tumor discovery (Passed out due to abdominal pain...CT scan to rule out admonimal problem, which it did, but found the tumor).  I know things are related to the tumor because, after it was removed, the symptons dissapeared.

    In general the only symptom that leads to a RCC diagnosis is blod in the urine.

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    dhs1963 said:

    They may or may not be symptoms...

    There are many things that can cause most kidney cancer symptoms....Severe leg pain is one I had not heard before...tiredness could be from your body's imune reaction. But it could be from not getting enough sleep at night.

     

    In my case, I had (in hind sight) four symptoms:  Night Sweats, unexplained weightloss (I was happy about that...lost 25 lbs in 5 months), afternoon fatigue, and a sore back...I was actually going to talk about the fatigue...but then I had the tramatic event that lead to the tumor discovery (Passed out due to abdominal pain...CT scan to rule out admonimal problem, which it did, but found the tumor).  I know things are related to the tumor because, after it was removed, the symptons dissapeared.

    In general the only symptom that leads to a RCC diagnosis is blod in the urine.

    If only it were that simple

    dhs,

    I am going to disagree with your last statement. Blood in the urine may or may not lead to Kdney Cancer ( a 25% chance). It does call for a CT which will diagnose Kidney Cancer if it is there,

    Icemantoo

  • rainsandpours
    rainsandpours Member Posts: 136
    icemantoo said:

    If only it were that simple

    dhs,

    I am going to disagree with your last statement. Blood in the urine may or may not lead to Kdney Cancer ( a 25% chance). It does call for a CT which will diagnose Kidney Cancer if it is there,

    Icemantoo

    The original symptom that

    The original symptom that sent me to the doctor in the fall of 2011 was fatigue.  I'm talking bone crushing, I'm gonna be sick, can't get my @ss off the couch fatigue.  It took 3months of testing all kinds of things before my dr happened to look at me and notice my thyroid looked large.  Round 1

    Then in the fall of 2012, while at a visit to my then oncologist, I mentioned I thought something was going on with my kidneys. Nothing specific, but I had crampy type pain when my bladder was full. Never thought much of it, neither did the onc.  Low and behold, 5 months later they found the kidney tumor.  Makes me wonder why the onc didn't follow up on it?

     

    The fatigue I still have.  Mild most of the time, occasionnaly hits me like a ton of bricks.  My get up and go got up and went!  I'm not sure if it has to do with having no thyroid and taking replacement meds (since Synthroid cant duplicate our natural hormones exactly), but I'm tired of being tired!

     

    Another thing I find is a bit of brain drain.  I can't retain info like I used to, and I have to write everything down now.

     

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

    If only it were that simple

    dhs,

    I am going to disagree with your last statement. Blood in the urine may or may not lead to Kdney Cancer ( a 25% chance). It does call for a CT which will diagnose Kidney Cancer if it is there,

    Icemantoo

    Blood in the urine does not

    Blood in the urine does not always call for a CT..  If there is associated pain, then Kidney Stones is the most common cause.  I was sent home with pain pills, and the pain and blood went away for several weeks.  I had two doctors say Kidney Stones...  but when the "stones" were not passing, the Urologist (still saying stones) wanted to see how many and how big they were, he ordered a CT Scan to figure out what treatment I needed.  Needless to say, once that scan was looked at, he had egg on his face and was almost speechless..  However to me, it was a good thing, he gave me 3 days of no worry and more importantly he got me in to Stanford with the best RCC Surgeon in the state.  RCC is still so rare that it goes undiagnosed, current blood tests do not reveal it, nor does any physical exam.  And an X Ray may not find it either.  It usually takes a CT, MRI, and U.S. to find it.

    Notice I said current blood tests do not find it... I met a researcher that is trying to come up with a blood test to discover RCC.  This could improve early detection and give much better life results, should she succeed. 

    Ron

  • rainsandpours
    rainsandpours Member Posts: 136
    GSRon said:

    Blood in the urine does not

    Blood in the urine does not always call for a CT..  If there is associated pain, then Kidney Stones is the most common cause.  I was sent home with pain pills, and the pain and blood went away for several weeks.  I had two doctors say Kidney Stones...  but when the "stones" were not passing, the Urologist (still saying stones) wanted to see how many and how big they were, he ordered a CT Scan to figure out what treatment I needed.  Needless to say, once that scan was looked at, he had egg on his face and was almost speechless..  However to me, it was a good thing, he gave me 3 days of no worry and more importantly he got me in to Stanford with the best RCC Surgeon in the state.  RCC is still so rare that it goes undiagnosed, current blood tests do not reveal it, nor does any physical exam.  And an X Ray may not find it either.  It usually takes a CT, MRI, and U.S. to find it.

    Notice I said current blood tests do not find it... I met a researcher that is trying to come up with a blood test to discover RCC.  This could improve early detection and give much better life results, should she succeed. 

    Ron

    GSRon:  do you think most

    GSRon:  do you think most kidney cancers cause blood, even  microscopic?  I've never had even traces of it.  Mind you, my tumor was 1.3 cm at pathology.  I wonder if it had had a chance to grow undiscovered if I would have eventually had that?  And I'm curious about your opinion on how long i maybe had the cancer? 

  • GSRon
    GSRon Member Posts: 1,303

    GSRon:  do you think most

    GSRon:  do you think most kidney cancers cause blood, even  microscopic?  I've never had even traces of it.  Mind you, my tumor was 1.3 cm at pathology.  I wonder if it had had a chance to grow undiscovered if I would have eventually had that?  And I'm curious about your opinion on how long i maybe had the cancer? 

    Hi Rains.. been reading your

    Hi Rains.. been reading your posts.. geesh.. you have had your fill... good luck with the next op.  Hard to guess, but once the tumor takes hold of the Kidney, then I would think that there may be microscopic traces of blood in the urine.  That said there can be many causes for that besides RCC.  So to answer your first question, I would guess that yes, sooner or later you would have had blood in the urine. 

    As for how long.. gosh.. another difficult question.  I keep reading that RCC "typically" grows at less than 1 CM per year.  I hear the range goes from like 0.5 to 0.8 CM.  But then some types of RCC are more aggressive and some less. At 1.3 my guess would be about 2 years, plus or minus a year.  Perhaps someone else can give more details.

    But, you are on your second Cancer, this is unusual and very rare.  I would suggest good follow up, just in case, but then seems you are doing that already.

    Again, good luck..!  Keep us posted please...

    Ron

  • rainsandpours
    rainsandpours Member Posts: 136
    GSRon said:

    Hi Rains.. been reading your

    Hi Rains.. been reading your posts.. geesh.. you have had your fill... good luck with the next op.  Hard to guess, but once the tumor takes hold of the Kidney, then I would think that there may be microscopic traces of blood in the urine.  That said there can be many causes for that besides RCC.  So to answer your first question, I would guess that yes, sooner or later you would have had blood in the urine. 

    As for how long.. gosh.. another difficult question.  I keep reading that RCC "typically" grows at less than 1 CM per year.  I hear the range goes from like 0.5 to 0.8 CM.  But then some types of RCC are more aggressive and some less. At 1.3 my guess would be about 2 years, plus or minus a year.  Perhaps someone else can give more details.

    But, you are on your second Cancer, this is unusual and very rare.  I would suggest good follow up, just in case, but then seems you are doing that already.

    Again, good luck..!  Keep us posted please...

    Ron

    Thanks Ron :).  Hmm, your

    Thanks Ron :).  Hmm, your explanation makes so much sense.  I wonder if my kidney tumor developed as a result of all the radiation I was subjected to in 2012?  I'm also on blood pressure meds including a diurhetic (which has been known to cause kidney cancer!!).  the funny thing is, last Oct 10th (5 days before my OPN) I had a PET scan- it didnt' pick up the kidney cancer, but noted the chest wall tumor that Im now having removed on Friday.  My Rad onc at the time blew off all the findings saying they were normal physiological activity.  That's not what my BS said.  She was pissed that I wasn't referred back to her in Nov for followup.  It was only after my GP ordered my MRI that I was again sent to the BS.  And now I'm having more surgery.

     

    After this, Im not sure I want to know about any new cancers and/or recurrences.  I hate the testing, and the stress.  My life has been on hold for 2 years. 

  • GSRon
    GSRon Member Posts: 1,303

    Thanks Ron :).  Hmm, your

    Thanks Ron :).  Hmm, your explanation makes so much sense.  I wonder if my kidney tumor developed as a result of all the radiation I was subjected to in 2012?  I'm also on blood pressure meds including a diurhetic (which has been known to cause kidney cancer!!).  the funny thing is, last Oct 10th (5 days before my OPN) I had a PET scan- it didnt' pick up the kidney cancer, but noted the chest wall tumor that Im now having removed on Friday.  My Rad onc at the time blew off all the findings saying they were normal physiological activity.  That's not what my BS said.  She was pissed that I wasn't referred back to her in Nov for followup.  It was only after my GP ordered my MRI that I was again sent to the BS.  And now I'm having more surgery.

     

    After this, Im not sure I want to know about any new cancers and/or recurrences.  I hate the testing, and the stress.  My life has been on hold for 2 years. 

    Rains... OK on Pet Scans..

    Rains... OK on Pet Scans.. they won't likely pick up a small RCC tumor.. this is why PET is not used for RCC often.  Tumors of 1 CM or smaller just do not show up...  Same with X Ray...  There is a reason some Cancers are called "Clear Cell".. it is harder to see in some types of imaging.

    Ron

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    GSRon said:

    Rains... OK on Pet Scans..

    Rains... OK on Pet Scans.. they won't likely pick up a small RCC tumor.. this is why PET is not used for RCC often.  Tumors of 1 CM or smaller just do not show up...  Same with X Ray...  There is a reason some Cancers are called "Clear Cell".. it is harder to see in some types of imaging.

    Ron

    My husband had a CT/PET scan

    My husband had a CT/PET scan prior to surgery.  It showed the RCC mets to his bones (vertebra, shoulder, hip, femur) and one lymph node.  He has clear cell RCC.  Every 3 months he has a CT/PET scan done for the past 2 1/2 years.   It is my understanding that CT/PETS are not used diagnostically to check for tumors in the kidney, but are used to check for metastatic tumors in other locations, definitely bone and lymph nodes.  It is not used for the brain or heart or some internal structures.  MRI's would be used for those areas.  The literature I have read and the personal experience is that a 1/2 cm met can be visible. 

    Add:  A technician told us that because the dye/radioactive material is all excreted by the kidneys is the reason why the entire kidney would light up and they wouldn't be able to differentiate something normal from abnormal.  They also said the brain uses so much glucose and that is why the entire brain lights up and it will not show differentiation of a tumor from normal tissue.

    I would like to say I'm not a doctor and this is just personal experience, or what has been told to me by docs or techs.

    I read in some literature from the American Urological Association that blood in the urine is the "most common" symptom that people with renal tumors present with.  It's probably the most helpful symptom which would make a person seek help and hopefully eventually have a CT scan after they rule out infection.  The other symptoms such as being very tired, or back pain, weight loss are not as helpful to a patient in getting immediate help or help directed at an issue with the kidneys.  For instance, my husbands severe back pain was treated as a strain for months.  Back pain is a nonspecific symptom that wouldn't make a clinician automatically think "kidney".  And the way I figure that's why some people are unfortunate (like us) and get a diagnosis at Stage 4.  RCC is kind of silent.

  • cheatinlil
    cheatinlil Member Posts: 197

    Thanks Ron :).  Hmm, your

    Thanks Ron :).  Hmm, your explanation makes so much sense.  I wonder if my kidney tumor developed as a result of all the radiation I was subjected to in 2012?  I'm also on blood pressure meds including a diurhetic (which has been known to cause kidney cancer!!).  the funny thing is, last Oct 10th (5 days before my OPN) I had a PET scan- it didnt' pick up the kidney cancer, but noted the chest wall tumor that Im now having removed on Friday.  My Rad onc at the time blew off all the findings saying they were normal physiological activity.  That's not what my BS said.  She was pissed that I wasn't referred back to her in Nov for followup.  It was only after my GP ordered my MRI that I was again sent to the BS.  And now I'm having more surgery.

     

    After this, Im not sure I want to know about any new cancers and/or recurrences.  I hate the testing, and the stress.  My life has been on hold for 2 years. 

    MellieBean,
    I'm so sorry for

    MellieBean,

    I'm so sorry for your struggle.  We are here for you. 

    Rains something you said stuck with me  "I hate the testing, and the stress.  My life has been on hold for 2 years. "  First let me say in the wineyest voice I know how "I don't wanna ______________, I don't wanna ______________, I dont wanna ____________."  We can all fill in the blanks.  I'm trying to come to grips with all this myself.  So I say this to you, me and us all: How? how? how?  How do we enjoy our new life on a daily basis, without feeling like we are holding our breath till the next scan/test.  I hope this comes across as compassion as it is intended. 

    I have an obsessive personality so I have been consumed with info.  My husband said on Friday "can we talk about something besides cancer?" It gave me an "ah ha" moment.  We had the best weekend, we pretended like none of this happened.  Of course Monday we were both slapped in the face with the reality that it is still here.  Another strategy I've been telling myself is "I will put the cancer in a box and take it out later to look at it" Like the day of the next test.  I'm asking for help and suggestions.  I don't want the cancer to rule my life.  It is a part of my life but I don't want it to rule it. 

    Big giant hugs to MellieBean,Rains and all you brave survivors.  You are all my heros.

     

  • Srashedb
    Srashedb Member Posts: 482

    Odd symptoms

    I found out today it will be early August instead of September 8. I notice many time people who develop RCC seem to have found out and had little or no symptoms. I have been having a problem with extreme fatigue for several months. It's like once or twice a week for several months I have gotten so tired I feel like my body is sinking into its self. And then I become so drowsy I just can't fight it. Another symptom is severe leg pain, not sure why it's related or even if it really is but it's why I got to the doctor. And just a general feeling of feeling unwell. So I am glad they moved it up. I am ready to feel better and have my energy back. So down a month on the waiting now.

    Tests?

    mellie:

    is there any way you can get scans or some testing done to alleviate your anxiety? My husband did not have fatigue and no blood in his urine. He had pain on his hip that his gp didn't do much with other than physical therapy and Advil for months.

    it was only when he demanded an MRI that the cancer showed up. I am obsessive and highly anxious and the long holiday weekend was about the most I could handle. 

    I think you are making yourself crazy and it would probably help you to be fully tested so that you could know the worst and then begin whatever treatment is needed.

    contact doctors who have renal cancer experience in your area; if there aren't any, be willing to travel some.

    Sarah

  • Melliebean
    Melliebean Member Posts: 53
    Srashedb said:

    Tests?

    mellie:

    is there any way you can get scans or some testing done to alleviate your anxiety? My husband did not have fatigue and no blood in his urine. He had pain on his hip that his gp didn't do much with other than physical therapy and Advil for months.

    it was only when he demanded an MRI that the cancer showed up. I am obsessive and highly anxious and the long holiday weekend was about the most I could handle. 

    I think you are making yourself crazy and it would probably help you to be fully tested so that you could know the worst and then begin whatever treatment is needed.

    contact doctors who have renal cancer experience in your area; if there aren't any, be willing to travel some.

    Sarah

    Not sure.

    Not sure what other tests they will do on me.  My surgery date is for sure August 11th now.  Reading all the above I wanted to note I did have blood in my urine but only seen microscopically. I thought I had a repeat uti right close together. This fatigue has been around a while. It started with my first uti diagnosis and never went away since least August. It's like I described my body just wants to sink I to its self and rest. I am having problems sleeping at night, but on my rough days my body is wanting like 18 hours sleep.  I did read this happens. Read a survivor story where they had alot of fatigue and a bit after surgery they bounced back.

  • rainsandpours
    rainsandpours Member Posts: 136

    Not sure.

    Not sure what other tests they will do on me.  My surgery date is for sure August 11th now.  Reading all the above I wanted to note I did have blood in my urine but only seen microscopically. I thought I had a repeat uti right close together. This fatigue has been around a while. It started with my first uti diagnosis and never went away since least August. It's like I described my body just wants to sink I to its self and rest. I am having problems sleeping at night, but on my rough days my body is wanting like 18 hours sleep.  I did read this happens. Read a survivor story where they had alot of fatigue and a bit after surgery they bounced back.

    Mellie:  as annoying and

    Mellie:  as annoying and frustrating the fatigue is, keep in mind it's also a GOOD thing (strange huh?).  Your body is fighting the cancer with sleep.  Well known phenomena.  It sucks though!  Despite having a serious illness, we still have to soldier on and continue to hold jobs, raise kids etc.  There just aren't enough hours in the day to get all the rest you need.

     

    What I learned from my cancer history is to NOT fight fatigue.  Do not feel guilty about it.  Go sleep when your bod calls for it.  You do yourself no favours by getting run down.  The flip side is you also have to accept a few compromises.  Some of your priorites will have to change. And that's ok!  You need to take care of you now... especially for the little ones in  your life!

     

    Cheatinlil:  Oh I so understand what you said! :).  Let me fill in the blanks lol.

     

    " I don't wanna do this anymore...wash rinse repeat"

     

    I'll admit to secretly hoping I fall through the cracks and no one checks up on me.  I do know this surgery better get it all, cuz I ain't repeatin' it.

  • cheatinlil
    cheatinlil Member Posts: 197

    Mellie:  as annoying and

    Mellie:  as annoying and frustrating the fatigue is, keep in mind it's also a GOOD thing (strange huh?).  Your body is fighting the cancer with sleep.  Well known phenomena.  It sucks though!  Despite having a serious illness, we still have to soldier on and continue to hold jobs, raise kids etc.  There just aren't enough hours in the day to get all the rest you need.

     

    What I learned from my cancer history is to NOT fight fatigue.  Do not feel guilty about it.  Go sleep when your bod calls for it.  You do yourself no favours by getting run down.  The flip side is you also have to accept a few compromises.  Some of your priorites will have to change. And that's ok!  You need to take care of you now... especially for the little ones in  your life!

     

    Cheatinlil:  Oh I so understand what you said! :).  Let me fill in the blanks lol.

     

    " I don't wanna do this anymore...wash rinse repeat"

     

    I'll admit to secretly hoping I fall through the cracks and no one checks up on me.  I do know this surgery better get it all, cuz I ain't repeatin' it.

    Rains
     Lather rinse repeat.

    Rains

     Lather rinse repeat. Lol. That made me laugh.  Thanks for " getting it"

  • Melliebean
    Melliebean Member Posts: 53

    Mellie:  as annoying and

    Mellie:  as annoying and frustrating the fatigue is, keep in mind it's also a GOOD thing (strange huh?).  Your body is fighting the cancer with sleep.  Well known phenomena.  It sucks though!  Despite having a serious illness, we still have to soldier on and continue to hold jobs, raise kids etc.  There just aren't enough hours in the day to get all the rest you need.

     

    What I learned from my cancer history is to NOT fight fatigue.  Do not feel guilty about it.  Go sleep when your bod calls for it.  You do yourself no favours by getting run down.  The flip side is you also have to accept a few compromises.  Some of your priorites will have to change. And that's ok!  You need to take care of you now... especially for the little ones in  your life!

     

    Cheatinlil:  Oh I so understand what you said! :).  Let me fill in the blanks lol.

     

    " I don't wanna do this anymore...wash rinse repeat"

     

    I'll admit to secretly hoping I fall through the cracks and no one checks up on me.  I do know this surgery better get it all, cuz I ain't repeatin' it.

    ThNks

    And at least now I am not feeling the need to explain myself. I let the fatigue go on for a while before the leg pain drove me back to the doctor.  I kniw I had my husband and a few famiky members wondering about me and wondering why I was wanting to sleep so much.  I felt really guilty at first, then I was like you know what I'm tired I'm gonna sleep. LOL then of course I still felt guilty. Now I don't feel guilty at all since I know why. 

  • foxhd
    foxhd Member Posts: 3,181

    ThNks

    And at least now I am not feeling the need to explain myself. I let the fatigue go on for a while before the leg pain drove me back to the doctor.  I kniw I had my husband and a few famiky members wondering about me and wondering why I was wanting to sleep so much.  I felt really guilty at first, then I was like you know what I'm tired I'm gonna sleep. LOL then of course I still felt guilty. Now I don't feel guilty at all since I know why. 

    naps

    I've accepted day time naps as part of the new normal. Sometimes I feel that I can sleep all day. And night. Aw, yes, the "new" normal.