Survivors

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  • janepjohns
    janepjohns Member Posts: 4
    #22
    lendog said:

    RCC
    I just had a left radical nephrectomy on dec 15.Still healing up and have not gone in for ct scan yet.I didn't know we had to have that many ct scans.As far as recovery,I feel like I'm coming around,does it take a long time to heal on the inside?I don't want to over do it.

    I am a 4 year survivor of
    I am a 4 year survivor of metastized RCC. I am healthy, still going strong and no reoccurance since end of original treatment.
  • mbates09
    mbates09 Member Posts: 6
    #23
    janepjohns said:

    I am a 4 year survivor of
    I am a 4 year survivor of metastized RCC. I am healthy, still going strong and no reoccurance since end of original treatment.

    Survivors
    I am a one year survivor of an open right radical nephrectomy for RCC in January of '08. I am 60, and I still have a lot of fatigue and my legs feel heavy all of the time. I have a lot of bloating in the abdomen, but I can sleep on my side now, which is good. It feels funny to sleep on the surgical side, but I can do it if I have to. No numbness in the area, thank goodness but occasional "stabbing" pains in the area. I keep up with my follow-ups with the oncologist (yes, I had a urologist do the surgery, but a friend who has cancer said I must have an oncologist, and I am glad I listened!)and I had a car accident in October and have not been working since I was laid off in November, but in any event, my energy is not up to par. When will it come back? When they talk about survival rates, what about after 5 years, can you consider yourself back to normal lifespan after that?
  • imbkuz
    imbkuz Member Posts: 52
    #24
    janepjohns said:

    I am a 4 year survivor of
    I am a 4 year survivor of metastized RCC. I am healthy, still going strong and no reoccurance since end of original treatment.

    Janepjohns 4 year survivor
    I was so happy to see this post and I hope my post finds you doing well.May I ask when you say you are a survivor of metastasized RCC where did it metastasized to and what was your treatment? My hubby had radical nephrectomy with at least a 10.8 cm tumor removed mets to lungs.Fuhrman nuclear grade stage IV etc. I have hope but can I really have hopes and some dreams added in? Thank You.
    Bless You
    Babs
  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #25
    imbkuz said:

    Janepjohns 4 year survivor
    I was so happy to see this post and I hope my post finds you doing well.May I ask when you say you are a survivor of metastasized RCC where did it metastasized to and what was your treatment? My hubby had radical nephrectomy with at least a 10.8 cm tumor removed mets to lungs.Fuhrman nuclear grade stage IV etc. I have hope but can I really have hopes and some dreams added in? Thank You.
    Bless You
    Babs

    I'm a survivor
    Hi -I keep following "imbkuz" around the website. Read my comments to her under CT Scan Results that she posted and I responded to.
    I was Dx with Stage IV in May 2006. How long it had been there is anyone's guess. I had a very wishy washy Dr. from 2003-2005. Perhaps if he had ordered a routine urinalysis, the hematuria would have shown up and made him look further. As it was, the Dr. who took over his practice and saw me for the first time in 2006, caught it. But the secondary problems of nausea/vomiting that hit every few months from late 2005 were caused by the mets to liver and the congenital defect in the gall bladder. I thought maybe a gallstone, he ordered an ultrasound. Basically, I was having episodes of pancreatitis.
    So here I am - a gutless wonder.
    1987 had all the female works removed because of endometriosis, ovarian cysts that ruptured periodically, fibroids, and cervical polyps.
    2006 said good bye to right kidney, left lobe of liver, several test wedges from the right lobe, gall bladder, and a set of lymph nodes. 2007 a node. 2008 a node.
    Donna_lee
  • imbkuz
    imbkuz Member Posts: 52
    #26
    donna_lee said:

    I'm a survivor
    Hi -I keep following "imbkuz" around the website. Read my comments to her under CT Scan Results that she posted and I responded to.
    I was Dx with Stage IV in May 2006. How long it had been there is anyone's guess. I had a very wishy washy Dr. from 2003-2005. Perhaps if he had ordered a routine urinalysis, the hematuria would have shown up and made him look further. As it was, the Dr. who took over his practice and saw me for the first time in 2006, caught it. But the secondary problems of nausea/vomiting that hit every few months from late 2005 were caused by the mets to liver and the congenital defect in the gall bladder. I thought maybe a gallstone, he ordered an ultrasound. Basically, I was having episodes of pancreatitis.
    So here I am - a gutless wonder.
    1987 had all the female works removed because of endometriosis, ovarian cysts that ruptured periodically, fibroids, and cervical polyps.
    2006 said good bye to right kidney, left lobe of liver, several test wedges from the right lobe, gall bladder, and a set of lymph nodes. 2007 a node. 2008 a node.
    Donna_lee

    Donna lee
    You are my hero!
  • Doc P
    Doc P Member Posts: 4
    #27
    imbkuz said:

    Donna lee
    You are my hero!

    Seven Days post-Da Vinci
    Fellow Survivors,

    I am a 35 y/o male and I had a robotic left partial nephrectomy to remove a 1.5cm tumor from my kidney one week ago today. As you all know, the emotional roller coaster is wilder than any amusement park ride could ever be. I am so blessed to work at and live near the hospital where I had my procedure and that they have Da Vinci. It is a miracle to me, six, one inch incisions is all I have as proof that a surgeon ever touched me.

    We are survivors and are blessed to have the life we live. I have been down, but I was given the gift of life again and a 95% recovery rate so from today forward I will not look over my shoulder and will live everyday to the fullest.

    Godspeed to us all!
  • dgilly
    dgilly Member Posts: 16
    #28
    11 Years!!!
    I just hit 11 years this June. I had Stage I/II RCC, diagnosed 11 months after my mother passed away from RCC. She lived 13 months after her diagnoses. This stuff is scary but I have just kept going and praying that I get a few more years! I wish everyone the best here.
  • corey50
    corey50 Member Posts: 111
    #29
    dgilly said:

    11 Years!!!
    I just hit 11 years this June. I had Stage I/II RCC, diagnosed 11 months after my mother passed away from RCC. She lived 13 months after her diagnoses. This stuff is scary but I have just kept going and praying that I get a few more years! I wish everyone the best here.

    DGILLY 11 YEARS!!!
    thank you for your post. it is so nice and comforting to hear of people who are survivors especially for 11 years. so happy for you. did you have a full nephrectomy? did you have any follow up?
    again thanks for the post.
  • dgilly
    dgilly Member Posts: 16
    #30
    corey50 said:

    DGILLY 11 YEARS!!!
    thank you for your post. it is so nice and comforting to hear of people who are survivors especially for 11 years. so happy for you. did you have a full nephrectomy? did you have any follow up?
    again thanks for the post.

    Hi
    Sorry it took so long, we are in the process of moving and I sing and on, on, on!

    Lets start from the beginning! My mother was diagnosed in June 1996 with RCC, Stage IV, passed July 1997. I was diagnosed June 1998. I had a 5 cm tumore growing up inside my rib cage, pushing the lung up and never noticed a thing. I did end up having a full Radical Nephrectomy of my left kidney, adrenal gland and they took one rib to get the tumor out. I was Stage I/II RCC. I was never so scared in my life yet here I am 11 years later. I go every year for my CT Scan to make sure there is nothing there. They said I will have to do this for the rest of my life. I do have to small spots on my liver but they don't think they are related to the RCC. I do pretty good and yet I have my days where I have pain, mostly when the weather changes but I also have Osteo-Arthur in my back and other places along with Osteoporosis and a few other things to mention. OH, I am thankful for every day the Lord gives me so please don't take this as complaining. I pray for every Kidney Cancer patient out there. My heart aches for them as I have been on both ends of this nasty cancer. I live with fear of it's return yet I LIVE everyday to the fullest. I write and sing Country Gospel and I love living. I will hang on and try to do what I need to do with the time God has given me. One thing about it, the big ugly C word does not always mean death! Hang in there and just keep going!!!! My love and prayers to all who face any type of Cancer. God Bless!
  • Unknown
    Unknown
    #31
    This comment has been removed by the Moderator
  • Diamonds11
    Diamonds11 Member Posts: 1
    #32
    Cancer Survivor
    Hi, I just wanted to let you know that my mother is a long time survivor of kidney cancer. She has had a kidney removed over 25 years ago due to kidney cancer. It took almost 20 years for it to metasticize. It then metasticized to her lung and she has had 2 surgeries for that. Then in August of this year, it metasticized to her adrenal gland on the opposite side. Unfortunately, we were told yesterday that it has now metasticized to both of her lungs and her liver.

    I just want all to know that it IS possible to live for a long time after your diagnosis. Just be diligent in your checkups.
  • s_d_l
    s_d_l Member Posts: 3
    #33
    janepjohns said:

    I am a 4 year survivor of
    I am a 4 year survivor of metastized RCC. I am healthy, still going strong and no reoccurance since end of original treatment.

    "Original Treatment"
    Hi. Just wondering what your original treatment was that has allowed you to keep going strong for 4 years with metastatic RCC. I thought you would have to be in constant treatment. Can you provide any more info? Thanks in advance~and keep up the good work!
  • frank kirkey
    frank kirkey Member Posts: 8
    #34
    Diamonds11 said:

    Cancer Survivor
    Hi, I just wanted to let you know that my mother is a long time survivor of kidney cancer. She has had a kidney removed over 25 years ago due to kidney cancer. It took almost 20 years for it to metasticize. It then metasticized to her lung and she has had 2 surgeries for that. Then in August of this year, it metasticized to her adrenal gland on the opposite side. Unfortunately, we were told yesterday that it has now metasticized to both of her lungs and her liver.

    I just want all to know that it IS possible to live for a long time after your diagnosis. Just be diligent in your checkups.

    Cancer Surviver
    Hi,I am on my 9 month had stage 2 lost a quarter of my kidney plus large mass.Had my surgery Fri. the 13 that was scary thought.But I knew was in good hands surgery was done Cleaveland Clinic plus had a lot of people praying.Just now feeling better had nerve damage lower back.My thoughts in prayers go out to all of cancer survivers good luck.Its almost a new year.
  • lbinmsp
    lbinmsp Member Posts: 266
    #35
    frank kirkey said:

    Cancer Surviver
    Hi,I am on my 9 month had stage 2 lost a quarter of my kidney plus large mass.Had my surgery Fri. the 13 that was scary thought.But I knew was in good hands surgery was done Cleaveland Clinic plus had a lot of people praying.Just now feeling better had nerve damage lower back.My thoughts in prayers go out to all of cancer survivers good luck.Its almost a new year.

    Hello To All!
    I started this particular string a few years ago and have kind of been off the grid for a while. With Christmas just days away I suddenly had the urge to return. What amazing stories from each of you. I'm now 8+ years since my original radical nephrectomy and 3 years since the metastasis to the lung was dealt with. When I read about your challenges finding a good doctor, I can now truly understand. I recently moved to Virginia and called an oncology office that was highly recommended to me. The scheduler asked why I wanted to see the doctor. Gave my history (metastatic RCC and DCIS - breast) - she asked if I had active cancer now - my response - no - she asked again 'why do you want to see the doctor'????? OK - got the appointment - the oncologist kept asking me the same question - 'if you have no active tumor, why are you here'? I had to tell her what tests she should order for me. I received no followup from her or her office - no lab results - no nothing. So I'm off to find another doctor.

    For those of you who have had recent surgeries, my original urologist (internationally known and respected) told me it could take up to a year before I was back to normal and to just listen to my body. Rest when I needed it, try to eat well, keep on with close followup.

    Best wishes to all of you!
  • Time2luv
    Time2luv Member Posts: 49
    #36
    lbinmsp said:

    Hello To All!
    I started this particular string a few years ago and have kind of been off the grid for a while. With Christmas just days away I suddenly had the urge to return. What amazing stories from each of you. I'm now 8+ years since my original radical nephrectomy and 3 years since the metastasis to the lung was dealt with. When I read about your challenges finding a good doctor, I can now truly understand. I recently moved to Virginia and called an oncology office that was highly recommended to me. The scheduler asked why I wanted to see the doctor. Gave my history (metastatic RCC and DCIS - breast) - she asked if I had active cancer now - my response - no - she asked again 'why do you want to see the doctor'????? OK - got the appointment - the oncologist kept asking me the same question - 'if you have no active tumor, why are you here'? I had to tell her what tests she should order for me. I received no followup from her or her office - no lab results - no nothing. So I'm off to find another doctor.

    For those of you who have had recent surgeries, my original urologist (internationally known and respected) told me it could take up to a year before I was back to normal and to just listen to my body. Rest when I needed it, try to eat well, keep on with close followup.

    Best wishes to all of you!

    Only one kidney now and it has cancer too
    By accident discovered cancer in right kidney 10/05, had right kidney removed 1/06. Urologist said I didn't need Oncologist as I now did not have cancer. Family Dr insisted I see oncologist, changed after first one had no clue. Love new one. Please insist on at least yearly or six month CT or MRI's. 3 yrs 11 months after first told I had cancer I now have small cancer in left kidney. Told that since it is 1cm it is too small to treat that we should watch it with new MRI in 3/10 to see if it has grown then maybe remove. They don't like to poke on the kidney and since I only have one.... Does anyone have experience with small cancer on kidney? The Doctors don't seem to not know what to do when it is .5cm grown to 1cm in 6 month time. They say they usually don't even find it until it is much larger. 1st one was 4cm. No symptoms 1st time except for pulling in lower back but Dr doesn't think that was connected. No symptoms this time. Do have foamy urine though.
    I need help with diet ideas. What should I be eating and what not. I know about meds and salt but not much more. This is all so scary! I wanted to retire early but now there is no way as I would not have insurance and with all the cost of scans there is just no way!
    Thanks for the support this site offers.
  • KCFighter
    KCFighter Member Posts: 50
    #37
    dgilly said:

    Hi
    Sorry it took so long, we are in the process of moving and I sing and on, on, on!

    Lets start from the beginning! My mother was diagnosed in June 1996 with RCC, Stage IV, passed July 1997. I was diagnosed June 1998. I had a 5 cm tumore growing up inside my rib cage, pushing the lung up and never noticed a thing. I did end up having a full Radical Nephrectomy of my left kidney, adrenal gland and they took one rib to get the tumor out. I was Stage I/II RCC. I was never so scared in my life yet here I am 11 years later. I go every year for my CT Scan to make sure there is nothing there. They said I will have to do this for the rest of my life. I do have to small spots on my liver but they don't think they are related to the RCC. I do pretty good and yet I have my days where I have pain, mostly when the weather changes but I also have Osteo-Arthur in my back and other places along with Osteoporosis and a few other things to mention. OH, I am thankful for every day the Lord gives me so please don't take this as complaining. I pray for every Kidney Cancer patient out there. My heart aches for them as I have been on both ends of this nasty cancer. I live with fear of it's return yet I LIVE everyday to the fullest. I write and sing Country Gospel and I love living. I will hang on and try to do what I need to do with the time God has given me. One thing about it, the big ugly C word does not always mean death! Hang in there and just keep going!!!! My love and prayers to all who face any type of Cancer. God Bless!

    11 Years! That is Great!
    Dgilly, thanks for your post and thanks to all for keeping this going. It is nice to have a string to talk about survivors to bring hope to us all. Interesting your doc said CT scans for life. That seems like the right idea. My doc indicated he didn't want me to have these tests for the rest of my life (I'm now 40) & that after 5 years, he doesn't think it is necessary. I am not there yet so will do my research in the meantime.

    Since my original diagnosis, March 2006, I have become less nervous about recurrence and even found myself worrying about stupid/petty things...that took a while as I wouldn't even make plans too far in advance initially. Losing that feeling is good and bad. I need this site to keep me focused on the big picture, remind me of what is important and that I need to make the most of my 2nd chance. Should I have a recurrence, I don't want to wish I'd spent my time doing things differently. I read stories of stage I survivors experiencing recurrence and it brings me back to reality. Hearing of survivors, especially long-time survivors gives much needed inspiration.

    My 4 year check is in mid-april, I hope to post that I remain free & clear. I hope to make that post from Maui which is where we are headed in May!
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #38
    Time2luv said:

    Only one kidney now and it has cancer too
    By accident discovered cancer in right kidney 10/05, had right kidney removed 1/06. Urologist said I didn't need Oncologist as I now did not have cancer. Family Dr insisted I see oncologist, changed after first one had no clue. Love new one. Please insist on at least yearly or six month CT or MRI's. 3 yrs 11 months after first told I had cancer I now have small cancer in left kidney. Told that since it is 1cm it is too small to treat that we should watch it with new MRI in 3/10 to see if it has grown then maybe remove. They don't like to poke on the kidney and since I only have one.... Does anyone have experience with small cancer on kidney? The Doctors don't seem to not know what to do when it is .5cm grown to 1cm in 6 month time. They say they usually don't even find it until it is much larger. 1st one was 4cm. No symptoms 1st time except for pulling in lower back but Dr doesn't think that was connected. No symptoms this time. Do have foamy urine though.
    I need help with diet ideas. What should I be eating and what not. I know about meds and salt but not much more. This is all so scary! I wanted to retire early but now there is no way as I would not have insurance and with all the cost of scans there is just no way!
    Thanks for the support this site offers.

    Almost 7 and 1/2 years
    I am coming up on 7 1/2 years since my 2.7 cm tumor and left kidney were removed and at age 66 my doctor says I will die of something else. Nine days until my Carribean cruise and I am looking into having fun like ziplining or parasailing. Obviously I am not going to let the fact that I once had kidney cancer stand in my way. I could try country singing , but I am vocally challanged.
  • lbinmsp
    lbinmsp Member Posts: 266
    #39
    Time2luv said:

    Only one kidney now and it has cancer too
    By accident discovered cancer in right kidney 10/05, had right kidney removed 1/06. Urologist said I didn't need Oncologist as I now did not have cancer. Family Dr insisted I see oncologist, changed after first one had no clue. Love new one. Please insist on at least yearly or six month CT or MRI's. 3 yrs 11 months after first told I had cancer I now have small cancer in left kidney. Told that since it is 1cm it is too small to treat that we should watch it with new MRI in 3/10 to see if it has grown then maybe remove. They don't like to poke on the kidney and since I only have one.... Does anyone have experience with small cancer on kidney? The Doctors don't seem to not know what to do when it is .5cm grown to 1cm in 6 month time. They say they usually don't even find it until it is much larger. 1st one was 4cm. No symptoms 1st time except for pulling in lower back but Dr doesn't think that was connected. No symptoms this time. Do have foamy urine though.
    I need help with diet ideas. What should I be eating and what not. I know about meds and salt but not much more. This is all so scary! I wanted to retire early but now there is no way as I would not have insurance and with all the cost of scans there is just no way!
    Thanks for the support this site offers.

    Wow
    You've got a scary situation facing you - I've read, though, that for small tumors they can actually remove the tumor laproscopically, leaving the kidney intact for the most part.

    as for diet/foods - my urologist and oncologist basically said that one key to keeping recurrence at bay is maintaining a strong immune system. That involves fruits, vegetables, keep sodium/salt level to a minimum, eat 5 - 6 small meals every day rather than 2 or 3 large meals (kidney / system can process food better that way) - lots of fluids and again, my urologist indicated 'any kind of fluid' - coffee, tea, soda, juice - not too much alcohol though and of course we need proteins and complex carbs - staying away from the simple carbs (sugars/sweet rolls/cake/etc.).

    I will admit after my third trip to the operating room for cancer, that I decided pizza was one of MY primary food groups now, as was ice cream. Not gonna face the 'cancer lion in its den' (my body)on nothing but fruits and veggies! If I'm going to go out, it's gonna be with some gusto!
  • lalerosescu
    lalerosescu Member Posts: 1
    #40
    Hi
    Hi , I am Daniela director at Stop Cancer!Movement. It's a very new site about cancer but
    it is not known yet but I want to tell me if you want, your story.How it all began. How you got everuthing done.
    I hope to collaborate. You can write me on stopcancermovement@yahoo.com
    Love , Daniela

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