Newly diagnosed

So....here I am where everyone thinks they will never be. I am a 43 yr old mom of 2 teenagers...had a robot assisted partial nephrectomy about a week ago and got pathology results 2 days ago. Rcc clear cell type grade 2 stage 1, tumor was 3.5cm oval shaped on very top of right kidney. Scheduled now for bone scan and chest ct then scans every 3 mos for awhile. This tumor was found "accidentally" after a ct scan at the emergency room for something totally unrelated. I go back and forth between feeling shocked that I had cancer and feeling blessed that it was found and removed. Would love to hear from others with similar diagnosis...I have the feeling that I want to change what i eat, medicines I take, my daily habits so that I don't cause this to come back...would love to hear from long term survivors...I am hoping to be around for a long time

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Comments

  • billmc
    billmc Member Posts: 9
    Hi Septemberzoe,
    I am new

    Hi Septemberzoe,

    I am new here also. My father had scans also for an unrelated issue. They ended up finding a 1cm mass on his right kideny. Lower part. His surgery is now Oct 18th. i have done a lot of research and it sounds like its a moderatly low grade tumor and is on the smaller side. Survival rates are very good for Stage 1. My father was diagnosed 8 years ago for Stage 3 colon cancer and he is doing great. Be glad they caught it early. I can only speak from a 3rd person point of view. Others here can give you personal insight. People are amazing and so willing to help here. I would be confidnet and dont let this consume your life. Best chance of a full cure is early detection which it looks like you had.


    Take care,
    Bill

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    billmc said:

    Hi Septemberzoe,
    I am new

    Hi Septemberzoe,

    I am new here also. My father had scans also for an unrelated issue. They ended up finding a 1cm mass on his right kideny. Lower part. His surgery is now Oct 18th. i have done a lot of research and it sounds like its a moderatly low grade tumor and is on the smaller side. Survival rates are very good for Stage 1. My father was diagnosed 8 years ago for Stage 3 colon cancer and he is doing great. Be glad they caught it early. I can only speak from a 3rd person point of view. Others here can give you personal insight. People are amazing and so willing to help here. I would be confidnet and dont let this consume your life. Best chance of a full cure is early detection which it looks like you had.


    Take care,
    Bill

    I am old

    Zoe,

    Cancer was always what somebody ekse had and whoever heard of Kidney Cancer. Welcome to our exclusive club. Mine was 11 years ago ar a young 59. Faye across the streey had hers at 64 and she is onky 82,

     

     The big C word. Surgery, Recovery. A little overwhelming at first. But things will get better.

     

     

    Icemantoo

  • Eskimo lily
    Eskimo lily Member Posts: 43
    Hi Septemberzoe,
     
    I am

    Hi Septemberzoe,

     

    I am recently new here as well but the advice I can offer and from what I've read, prognosis for stage 1 is very good. If you're interested in what you eat, Neil here is like a nutrional encyclopedia and I'm sure he will give his 2 cents! In the meantime, if you're interested, I recommend a few books to read that tell you a little bit about living with cancer and lifestyle, including nutrional changes you can make to optimize your health and keep your body in an environment that doesn't promote cancerous cells to grow.

    1. Life over Cancer by Keith Block

    2. Anti Cancer by David Servan-Schreiber

    Another very informative video that I recomend to watch is about angiogenesis as well, it's a ted talk, "can we eat to starve cancer?" by William Li and I love it: 

    http://www.ted.com/talks/william_li.html

     

    Hope this helps!!!

  • Septemberzoe
    Septemberzoe Member Posts: 49

    Hi Septemberzoe,
     
    I am

    Hi Septemberzoe,

     

    I am recently new here as well but the advice I can offer and from what I've read, prognosis for stage 1 is very good. If you're interested in what you eat, Neil here is like a nutrional encyclopedia and I'm sure he will give his 2 cents! In the meantime, if you're interested, I recommend a few books to read that tell you a little bit about living with cancer and lifestyle, including nutrional changes you can make to optimize your health and keep your body in an environment that doesn't promote cancerous cells to grow.

    1. Life over Cancer by Keith Block

    2. Anti Cancer by David Servan-Schreiber

    Another very informative video that I recomend to watch is about angiogenesis as well, it's a ted talk, "can we eat to starve cancer?" by William Li and I love it: 

    http://www.ted.com/talks/william_li.html

     

    Hope this helps!!!

    Thanks so much ....a bit

    Thanks so much ....a bit overwhelmed by info right now. Maybe someone cc an help me answer this question....too much was going on in my brain at the dr.'s office and I didn't ask...pathology said T1aNxMx stage 1 but no lymph nodes were removed or biopsied....silly question but how do they know its stage 1 if they didn't check lymph nodes? I remember asking about this before surgery and the dr said the nodes didnt show up on ct or MRI so they were not involved...

  • NanoSecond
    NanoSecond Member Posts: 653

    Thanks so much ....a bit

    Thanks so much ....a bit overwhelmed by info right now. Maybe someone cc an help me answer this question....too much was going on in my brain at the dr.'s office and I didn't ask...pathology said T1aNxMx stage 1 but no lymph nodes were removed or biopsied....silly question but how do they know its stage 1 if they didn't check lymph nodes? I remember asking about this before surgery and the dr said the nodes didnt show up on ct or MRI so they were not involved...

    Dietary considerations

    Hi Septemberzoe,

    Your lymph nodes must have appeared completely normal so they were not removed.  And, of course, that meant that they were not biopsied.  That is what the "Nx" refers to.

    If you are interested a dietary approach that can help to fight and/or prevent any future metastases I have prepared a concise document that explains the science and rationale behind what I call "proper" nutrition for cancer patients.  It is 59-pages long and is a .pdf file so I will need to send it to you via direct email.

    Please send me an email at:

    [email protected]

    So I can respond with my guide attached.

    Best wishes,

     

    -Neil (NanoSecond)

  • Djinnie
    Djinnie Member Posts: 945

    Thanks so much ....a bit

    Thanks so much ....a bit overwhelmed by info right now. Maybe someone cc an help me answer this question....too much was going on in my brain at the dr.'s office and I didn't ask...pathology said T1aNxMx stage 1 but no lymph nodes were removed or biopsied....silly question but how do they know its stage 1 if they didn't check lymph nodes? I remember asking about this before surgery and the dr said the nodes didnt show up on ct or MRI so they were not involved...

    Hi Zoe, 
    I am glad to hear

    Hi Zoe, 

    I am glad to hear your surgery went so well. You had the same surgery as me my tumour was also at the very top of my right kidney. Mine was T1b Grade 3 though. I believe the grade is determined by the degree of change within the kidney cell. I also retained my lymph nodes as they appeared to be clear.

    The most important change you should make, is to ensure you drink plenty of water each day. Once you feel better you could start introducing some changes to your diet. Cutting out sugar is very important,if you need a sweetener use a natural organic Stevia, the liquid is best. Reduce red meat,  and perhaps eat more fish. Use a sea salt, the grey Celtic is good, it is full of minerals, instead of table salt which is an industrial byproduct.

    I am sure you are taking things very slowly right now, try and walk a little each day to build your energy levels. You will probably feel very fatigued for some considerable time,that is normal.

    All the best with your scan, let us know how it goes!

     

    Djinnie

     

  • Sandi45
    Sandi45 Member Posts: 25

    Dietary considerations

    Hi Septemberzoe,

    Your lymph nodes must have appeared completely normal so they were not removed.  And, of course, that meant that they were not biopsied.  That is what the "Nx" refers to.

    If you are interested a dietary approach that can help to fight and/or prevent any future metastases I have prepared a concise document that explains the science and rationale behind what I call "proper" nutrition for cancer patients.  It is 59-pages long and is a .pdf file so I will need to send it to you via direct email.

    Please send me an email at:

    [email protected]

    So I can respond with my guide attached.

    Best wishes,

     

    -Neil (NanoSecond)

    PDF

    Hi Neil,

    I sent you an email and asked if you would send me the pdf also.

     

    Thanks!

     

    Sandi

  • NanoSecond
    NanoSecond Member Posts: 653
    Sandi45 said:

    PDF

    Hi Neil,

    I sent you an email and asked if you would send me the pdf also.

     

    Thanks!

     

    Sandi

    PDF

    Yes, it's on it's way to you Sandi.

    It goes without saying that I am happy to send it to anyone else who is interested.  It's free and contains plenty of food for thought...

  • Sandi45
    Sandi45 Member Posts: 25

    PDF

    Yes, it's on it's way to you Sandi.

    It goes without saying that I am happy to send it to anyone else who is interested.  It's free and contains plenty of food for thought...

    Thank you!

    I will let you know my thoughts after I get a chance to read it. I appreciate it!

  • My wife had a full removal

    My wife had a full removal last year.   She is 43 as well and we have four kids.  Her's was also approximately 3cm.

    Her's was discovered in a post scan after she had a stone in the OTHER kidney.

    I am very happy that thy found it early on you.  We just went to her one year scan and she is clean and her remaining kidney is now handling all of the output.

     

  • Septemberzoe
    Septemberzoe Member Posts: 49

    My wife had a full removal

    My wife had a full removal last year.   She is 43 as well and we have four kids.  Her's was also approximately 3cm.

    Her's was discovered in a post scan after she had a stone in the OTHER kidney.

    I am very happy that thy found it early on you.  We just went to her one year scan and she is clean and her remaining kidney is now handling all of the output.

     

    Thanks for sharing....what

    Thanks for sharing....what are the ages of your kids? Ours are 16 and 19....the 19 yr old is away at college and I have a hard time not really knowing how he's doing with this whole process. If you don't mind me asking do you know why they removed your wife's whole kidney with a "small" tumor? I wonder if I did the right thing with a partial removal. Would love to hear more about how you guys are doing....I feel like we are relatively young to be going through this and none of our friends can really relate....thanks! It is so great to hear that your wife is doing fine after a year.

  • danbren2
    danbren2 Member Posts: 311

    Dietary considerations

    Hi Septemberzoe,

    Your lymph nodes must have appeared completely normal so they were not removed.  And, of course, that meant that they were not biopsied.  That is what the "Nx" refers to.

    If you are interested a dietary approach that can help to fight and/or prevent any future metastases I have prepared a concise document that explains the science and rationale behind what I call "proper" nutrition for cancer patients.  It is 59-pages long and is a .pdf file so I will need to send it to you via direct email.

    Please send me an email at:

    [email protected]

    So I can respond with my guide attached.

    Best wishes,

     

    -Neil (NanoSecond)

    PDF

    Hi Neil,

         I would love a copy of the document also, so I have sent my email address as well.

                                                        Thanks so much!

  • NanoSecond
    NanoSecond Member Posts: 653
    danbren2 said:

    PDF

    Hi Neil,

         I would love a copy of the document also, so I have sent my email address as well.

                                                        Thanks so much!

    PDF

    It's already on its way via direct email.  So please let me know if you don't receive it.

  • foxhd
    foxhd Member Posts: 3,181 Member

    Thanks for sharing....what

    Thanks for sharing....what are the ages of your kids? Ours are 16 and 19....the 19 yr old is away at college and I have a hard time not really knowing how he's doing with this whole process. If you don't mind me asking do you know why they removed your wife's whole kidney with a "small" tumor? I wonder if I did the right thing with a partial removal. Would love to hear more about how you guys are doing....I feel like we are relatively young to be going through this and none of our friends can really relate....thanks! It is so great to hear that your wife is doing fine after a year.

    Yep, no one wants to be here.

    Sort of like an exclusive club in reverse. Or being sentenced to jail time. Unfortunate to have to be here. But fortunate to be on the wardens list of possible parolees. Some of us have been doing real well and you most likely will too. Lots of friends and information here. We all know the drill. Good luck to you Zoe.

  • LynninNC
    LynninNC Member Posts: 16
    Kids' responses

    Hi September. I had a full nephrectomy, open incision almost a year ago. At the time my oldest son was a sophomore in college 1000 miles away from me, my second a senior in high school and my youngest an 8th grader. I was concerned about all my kids but most about my college age son because I could not see his reaction to our conversations. There was only 3 weeks from discovery to surgery. He did not come home for the surgery but did come home at Thanksgiving. I shared pretty much everythng with all the kids. i downplayed my fears but was honest about the medical side of things. In sharing the results of the pathology, (stage 3, grade 3, some sarcomatoid features) I was honest but did not emphasize the negative.  The kids have asked questions and stayed involved in conversations as I have participated in a clinical trial with votrient. I think in general kids will mirror a parent's attitude and emotion.  Be honest with your kids. Watch their response and tone it down if they seem stressed.  Actually, I think I use that philosophy with my friends and extended family too.  Listen to your gut...it will not lead you wrong.     All my best with your recovery.   L~ 

  • Septemberzoe
    Septemberzoe Member Posts: 49
    LynninNC said:

    Kids' responses

    Hi September. I had a full nephrectomy, open incision almost a year ago. At the time my oldest son was a sophomore in college 1000 miles away from me, my second a senior in high school and my youngest an 8th grader. I was concerned about all my kids but most about my college age son because I could not see his reaction to our conversations. There was only 3 weeks from discovery to surgery. He did not come home for the surgery but did come home at Thanksgiving. I shared pretty much everythng with all the kids. i downplayed my fears but was honest about the medical side of things. In sharing the results of the pathology, (stage 3, grade 3, some sarcomatoid features) I was honest but did not emphasize the negative.  The kids have asked questions and stayed involved in conversations as I have participated in a clinical trial with votrient. I think in general kids will mirror a parent's attitude and emotion.  Be honest with your kids. Watch their response and tone it down if they seem stressed.  Actually, I think I use that philosophy with my friends and extended family too.  Listen to your gut...it will not lead you wrong.     All my best with your recovery.   L~ 

    Mom

    Thank you Lynn...interesting to hear from another mom. This is so new for my kids I think it might take awhile to see how they are doing with it....I try to share everything I know with them without stressing them out....my son left for college the weekend after I found out there was "something" on my kidney.how have yours done this past year and how are you doing?

  • LynninNC
    LynninNC Member Posts: 16

    Mom

    Thank you Lynn...interesting to hear from another mom. This is so new for my kids I think it might take awhile to see how they are doing with it....I try to share everything I know with them without stressing them out....my son left for college the weekend after I found out there was "something" on my kidney.how have yours done this past year and how are you doing?

    Doing well

    We are all doing well. My kids still ask questions and celebrate each clear screen with me. I have tolerated the votrient well so I am not very "sick" and have carried on regular life. I have had 3 clear CT scans since surgery.  My 14 yr old daughter has scolded me on occasion when I have bemoaned the fact I ran a 5 k race instead of the half marathon. I guess that was her way of cheering me on!  My 18 year old is close to 800 miles away now also in college. Life goes on....I just appreciate it a little more now!  Take care of yourself so you can take care of the kids!  L~

  • Septemberzoe
    Septemberzoe Member Posts: 49
    Congrats Lynn

    Congrats on clear scans Lynn. Tomorrow is 2 weeks since my surgery and I have to go for some more scans...chest CT and bone scan...praying for an all clear so that I can get back to some kind of "normal". Thanks so much for writing back...and hope things continue to go well for you. 

  • Septemberzoe
    Septemberzoe Member Posts: 49
    :)

    Just heard from doctor's office that my chest CT and bone scan were "negative" and "normal"....two of the sweetest words I've ever heard

  • foxhd
    foxhd Member Posts: 3,181 Member

    :)

    Just heard from doctor's office that my chest CT and bone scan were "negative" and "normal"....two of the sweetest words I've ever heard

    Good reports!

    Keep up the good work! You can do this!