Survivors

lbinmsp
lbinmsp Member Posts: 266
edited March 2014 in Kidney Cancer #1
I've been coming to this site for a long time and I wonder how many of us are still here. I'd like to believe that many of us have found good doctors, treatments, surgical procedures that continue to give us hope and health. Seems like few are responding to posted messages and I wonder why.

As for me? RCC (Stage 1) diagnosed in May 2001, radical left nephrectomy with close followup(every 3 months) for ALMOST 5 years. Then an early breast cancer where by chance a metastasis (from the kidney) to the right lung was discovered. Right lower lobectomy and, here I am, 1 1/2 years later, still HERE. We all know the statistics but I am here hoping that there are more 'statistical' marvels out there.

And wishing everyone who reads this a peaceful, safe, and beautiful holiday season.
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Comments

  • nonnatoo
    nonnatoo Member Posts: 34
    Happy Holiday to you and yours. Just read your note. I had partial nephrectomy left kidney 10/25/07 and in recovery right now. Had an internal stent to redirect urine from kidney to bladder and a drain placed on my left because the recovering kidney was leaking into abdomen---hospitalized for procedure and came home yesterday. Thanks to the surgeon and hospital staff and their willingness to fit me in so I could be home for Christmas. I'm new to the site and just learning how to navigate..so I was glad to find your message. So glad to see you're doing well - for me RCC was the second cancer. I had total hysterectomy and pelvic lymph node removal,on July 23rd,2007; then radiation for uterine cancer stage 2. Please keep me posted on how you are doing. God bless you.
  • LisaJo
    LisaJo Member Posts: 13
    I am a 3 1/2 year survivor after a Stage one right radical left nephrectomy. I come to the site ever so often to see what people have to say, and I too was pleasantly surprized to see your message. I think of the cancer mainly around the time I go in for a check but it is with me in the back of my mind most of the time. I try to live each day to the fullest and to remember how lucky I am when I'm down. I have lost many family members to cancer so when I was diagnosed I immediately thought I would be with them. My mother died at age 30 from a lymphoma so I have been blessed to live to the ripe young age of 51 and see all 3 of my children grow up.

    I do wonder about follow up care with the stage one diagnosis. My Dr. only recommends a yearly chest xray and a CT scan bi yearly. I do get my mammograms and have regular check ups but can anyone shed any more light on the follow up?

    I appreciate all of you and we are all so fortunate, and I especially feel blessed with good friends and family. I don't take any of these things foregranted.

    Happy Day to all!
  • lbinmsp
    lbinmsp Member Posts: 266
    nonnatoo said:

    Happy Holiday to you and yours. Just read your note. I had partial nephrectomy left kidney 10/25/07 and in recovery right now. Had an internal stent to redirect urine from kidney to bladder and a drain placed on my left because the recovering kidney was leaking into abdomen---hospitalized for procedure and came home yesterday. Thanks to the surgeon and hospital staff and their willingness to fit me in so I could be home for Christmas. I'm new to the site and just learning how to navigate..so I was glad to find your message. So glad to see you're doing well - for me RCC was the second cancer. I had total hysterectomy and pelvic lymph node removal,on July 23rd,2007; then radiation for uterine cancer stage 2. Please keep me posted on how you are doing. God bless you.

    What a blessing to be able to be home for Christmas. Every day is a good one as long as we're still alive and enjoying life! Thanks for responding.
  • lbinmsp
    lbinmsp Member Posts: 266
    LisaJo said:

    I am a 3 1/2 year survivor after a Stage one right radical left nephrectomy. I come to the site ever so often to see what people have to say, and I too was pleasantly surprized to see your message. I think of the cancer mainly around the time I go in for a check but it is with me in the back of my mind most of the time. I try to live each day to the fullest and to remember how lucky I am when I'm down. I have lost many family members to cancer so when I was diagnosed I immediately thought I would be with them. My mother died at age 30 from a lymphoma so I have been blessed to live to the ripe young age of 51 and see all 3 of my children grow up.

    I do wonder about follow up care with the stage one diagnosis. My Dr. only recommends a yearly chest xray and a CT scan bi yearly. I do get my mammograms and have regular check ups but can anyone shed any more light on the follow up?

    I appreciate all of you and we are all so fortunate, and I especially feel blessed with good friends and family. I don't take any of these things foregranted.

    Happy Day to all!

    Thanks for responding - and I'm so happy that you're doing well after 3 1/2 years! The spooky thing about this cancer is that even a Stage I can be sneaky are turn down the line (as mine did). But with all the followup in the world, my recurrence wouldn't have been caught except for a fluke due to the breast cancer. You've been hit hard with your family and I'm glad too that you're such a 'ripe old age' (I just hit 60 so you're still a pup!!!) TOO funny!

    God bless and I hope you continue with good health!
  • lda40
    lda40 Member Posts: 5
    Hello to Everyone. I am new to this site and was trying to become a little more knowledgeble on the topic of kidney Cancer. On July 19, 2005 I had my left kidney Removed. I had stage 2 renal cancer. At That time my doctor told me i would recover just fine and that plenty of people live with just 1 kidney. when my check up came round I had blood and protein in my urine and it just went down hill from there my remaining kidney began to shut down. a new doctor at a bigger hospital has put me on a very high dose of prednisone and cytoxan (a cemo drug)this is suppose to jump start the kidney to working again. since starting the medications i have gone into early menopause. iwas wondering if there was anyone out there with the same problems?
  • nonnatoo
    nonnatoo Member Posts: 34
    LisaJo said:

    I am a 3 1/2 year survivor after a Stage one right radical left nephrectomy. I come to the site ever so often to see what people have to say, and I too was pleasantly surprized to see your message. I think of the cancer mainly around the time I go in for a check but it is with me in the back of my mind most of the time. I try to live each day to the fullest and to remember how lucky I am when I'm down. I have lost many family members to cancer so when I was diagnosed I immediately thought I would be with them. My mother died at age 30 from a lymphoma so I have been blessed to live to the ripe young age of 51 and see all 3 of my children grow up.

    I do wonder about follow up care with the stage one diagnosis. My Dr. only recommends a yearly chest xray and a CT scan bi yearly. I do get my mammograms and have regular check ups but can anyone shed any more light on the follow up?

    I appreciate all of you and we are all so fortunate, and I especially feel blessed with good friends and family. I don't take any of these things foregranted.

    Happy Day to all!

    You are wondering about followup - my doctor told me a yearly cat scan was the only followup for my stage 1 renal cell. I'm also survivor of Stage 2 endometrial/uterine cancer (7/23/07).Followup for that is 3month exams. There is no history of cancer in my family, I am the first, and now worry about my daughters and what they may face in the future. I don't think these thoughts will ever go away. Glad to hear you are 3 1/2 yr survivor..and are doing well.
  • Chicago
    Chicago Member Posts: 73 Member
    I've been one of those away for a while. Two young kids'll do that to ya.

    I appreciate the concern though. I've lost too many friends to cancer as it is. All of a sudden, all contact is just lost, and there is really no way to get the details if you're not in touch with their family as well.

    Just crossed 5 years since they removed a chunk of one kidney, and still going strong.
  • lisa37
    lisa37 Member Posts: 4
    Hi, I've been away from this site for a while too. I had kidney cancer surgery on June 7, 2004. They did a partial nephrectomy on my right kidney. My latest results on Jan 22, 2008, show everything is ok. I am so grateful considering my cancer was found accidently and I probably had up to a year before it was found. I still have alot of pain on my right side,from front to back. Oddly enough the pain started a year before the cancer was found. They say there is no connection to the two. I've had several dr.'s look into it and had 6 months of steroid shots in my head, neck, and back. Nothing works. I am on pain meds and don't like being on them, but I wouldn't be able to function if I didn't. My own kids ages 21 and 18 will have to start being checked for it when they turn 30, because I was so young (36) and the type of cancer. I'm 40 now and have some health issues, but grateful for everday I'm given. I am, though, going through a divorce. My ex made me feel more like a burden than anything. He would not let me talk about it and I needed too. But now I'm happier and in the end he will realize it's his loss!! All of you who have spouses who stand by you, be happy and appreciative. I will keep all of you and your families in my prayers. Take care.
  • sviessman
    sviessman Member Posts: 3
    This is my first time participating in any type of group since I first learned I had RCC Stage 1. I had a radical right nephrectomy February 28, 2007. I still have some issues and am with my third urologists. I have had a hard time finding a doctor with the skills, compassion and understanding that I need. This is all very new to me. I have a fantastic primary doctor but this is not his field of expertise. He has been wonderful in trying to find a doctor to address my health needs.

    My first doctor said that after my surgery this would be a "distant memory". I would like nothing more than it to be just a memory. Has anyone else had challanges finding a doctor to help?

    I am glad that I did visit this site, because regardless of all the great family and friend support I have received, none of them have gone through this experence. It is comforting read about others experiences and know that you are not alone.

    Bless all of you and your families!
  • LisaJo
    LisaJo Member Posts: 13
    sviessman said:

    This is my first time participating in any type of group since I first learned I had RCC Stage 1. I had a radical right nephrectomy February 28, 2007. I still have some issues and am with my third urologists. I have had a hard time finding a doctor with the skills, compassion and understanding that I need. This is all very new to me. I have a fantastic primary doctor but this is not his field of expertise. He has been wonderful in trying to find a doctor to address my health needs.

    My first doctor said that after my surgery this would be a "distant memory". I would like nothing more than it to be just a memory. Has anyone else had challanges finding a doctor to help?

    I am glad that I did visit this site, because regardless of all the great family and friend support I have received, none of them have gone through this experence. It is comforting read about others experiences and know that you are not alone.

    Bless all of you and your families!

    Your situation sounds a lot like mine. My primary car Dr. is wonderful, kind and listens. My Urologist is good at what he does but doesn't have an ounce of compassion or bedside manner. I feel competent in his skills as a surgeon but he also responds to my questions in much the same way yours does. I too had RCC stage I and a radical neph.about the same time as you. No chemo or anything else and yes it was by coincidence they found it. My main question to you is what other issues are you dealing with? Do they concern the kidney cancer? I too wonder if I am up to speed sometimes and if I am getting the best follow up care, so I am curious. Thanks for your input in advance.
  • AndrewDer
    AndrewDer Member Posts: 10
    I have been Stage I - left kidney removed - July 2006 and am in great health and scans clean. It doesn't mean I am not occasionally worried though (there are posts of occasional Stage I recurrances) or needing to stay on top of monitoring protocols and doctors who are too busy to give you consolation. See my other more recent posts for more deatails about my issues. I have been exposed to a myriad of stories from well wishers and medical experts who know of many survivors with Stage I who have completely survived - my family physician told me he is treating 5 others just like me for close to 10 years and they are fine - nevertheless stay proactive - but do not worry too much.
  • sviessman
    sviessman Member Posts: 3
    LisaJo said:

    Your situation sounds a lot like mine. My primary car Dr. is wonderful, kind and listens. My Urologist is good at what he does but doesn't have an ounce of compassion or bedside manner. I feel competent in his skills as a surgeon but he also responds to my questions in much the same way yours does. I too had RCC stage I and a radical neph.about the same time as you. No chemo or anything else and yes it was by coincidence they found it. My main question to you is what other issues are you dealing with? Do they concern the kidney cancer? I too wonder if I am up to speed sometimes and if I am getting the best follow up care, so I am curious. Thanks for your input in advance.

    In response to LisaJo, I have other health issues since the kindey cancer that I did not have prior. I am dealing with ovarian cysts that were discovered on a follow up CT scan that were not there in earlier CT scans. I also have some vascular leg issues that I have not had resolved as of yet. Also my initial symptoms, that were what prompted the further testing and discovery of the cancer, are stil persistant. I have been on an antibotic for the last 5 months. I don't know if these are residule effects of the cancer or what is going on. Are you dealing with any other health issues?
  • lbinmsp
    lbinmsp Member Posts: 266
    AndrewDer said:

    I have been Stage I - left kidney removed - July 2006 and am in great health and scans clean. It doesn't mean I am not occasionally worried though (there are posts of occasional Stage I recurrances) or needing to stay on top of monitoring protocols and doctors who are too busy to give you consolation. See my other more recent posts for more deatails about my issues. I have been exposed to a myriad of stories from well wishers and medical experts who know of many survivors with Stage I who have completely survived - my family physician told me he is treating 5 others just like me for close to 10 years and they are fine - nevertheless stay proactive - but do not worry too much.

    This is really a reply to everyone who posted to my original message. THANK YOU! Wow! It's good to hear from so many of you who are doing, for the most part, so well! Definitely cool!

    I hear you talk about your doctors - my primary physician was completely out to lunch - but my urologist and oncologist are amazing. Even now my (new) primary isn't all that great. I think we'll always be challenged by these issues.

    Anyway, God bless each of you and I hope down the road I'll see positive postings from each of you again!!
  • LisaJo
    LisaJo Member Posts: 13
    Since this posting I have been checking regularly. It is really the first venue I'v had to talk and listen to people in the same position with the same concerns. Let's try to keep this up as I feel it is comforting to hear I'm not totally crazy! I like all the suggestions and hope everyone will keep posting.

    Wishing health and happiness to all of you!
  • AndrewDer
    AndrewDer Member Posts: 10
    LisaJo said:

    Since this posting I have been checking regularly. It is really the first venue I'v had to talk and listen to people in the same position with the same concerns. Let's try to keep this up as I feel it is comforting to hear I'm not totally crazy! I like all the suggestions and hope everyone will keep posting.

    Wishing health and happiness to all of you!

    Lisa
    I have learned we have to all be a little bit crazy to not take things to seriously :o)
  • igotfaith
    igotfaith Member Posts: 6
    Hi just read your message, I am a 4 year survivor, I had my right kidney removed and thanks be to God I haven't had any more evident's of the cancer spreading. I am glad that there are others out there who share in my experience. I don't come to this site much one reason is unlike other cancers the treatment is mostly removal of the affective area if the cancer has not spread. So my treatments consist of CT-Scan's and X-Ray's, thank's for the reminder it's good to remember that you are a survivors. My prayers go out to all.
  • Aquagirl18
    Aquagirl18 Member Posts: 45
    Happy Holiday Season Survivors
    Wow its getting close to the new year 2009 can't believe time goes by so fast.
    I hope people are still coming here and posting its been a while since I have had time to come back myself. I wish everyone here a Happy Holiday season and very Happy New Year!
  • Karmar
    Karmar Member Posts: 42
    First time on this particular site
    I am usaully on the colon cancer site as I am fighting a sever illness and have not yet been DX. But my husband was dx with Kidney cancer dec.2006. He had a total kidney removal since the entire kidney was involved.All found by accident-Our joke is he had diarrea for 9 days so a trip to the er they sent him home with Kidney cancer-Surgery done Dec. 18th-and the pills they put him on for pain gave him Dementhia. He turned 75 this year. And he to does the xrays and cat scans and nothing has changed in 2 years. He was fourtante that no other area was affected. He has done great since the removal.
    Karen
  • Faith2008
    Faith2008 Member Posts: 3
    Holidays
    Yes, it is good to be home for the holidays. This Holiday season is going to mean a little more to my family and I. I was just diagnosed with stage 1 kidney cancer on December 18th. Being home for the holidays is going to mean a lot because last year I spent it in the hospital in the ICU because of other health problems. God Bless.
  • lendog
    lendog Member Posts: 2
    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.