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lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

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.

nonnatoo
Posts: 34
Joined: Nov 2007

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.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

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.

LisaJo
Posts: 13
Joined: Apr 2006

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's picture
lbinmsp
Posts: 266
Joined: Jun 2006

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!

nonnatoo
Posts: 34
Joined: Nov 2007

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.

lda40
Posts: 5
Joined: Dec 2007

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?

Chicago's picture
Chicago
Posts: 74
Joined: Apr 2004

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
Posts: 4
Joined: Dec 2004

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
Posts: 3
Joined: Jan 2008

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
Posts: 13
Joined: Apr 2006

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.

sviessman
Posts: 3
Joined: Jan 2008

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?

AndrewDer's picture
AndrewDer
Posts: 10
Joined: Feb 2007

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.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

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
Posts: 13
Joined: Apr 2006

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's picture
AndrewDer
Posts: 10
Joined: Feb 2007

Lisa
I have learned we have to all be a little bit crazy to not take things to seriously :o)

igotfaith
Posts: 6
Joined: Jun 2002

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
Posts: 45
Joined: Apr 2003

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
Posts: 43
Joined: Nov 2008

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
Posts: 3
Joined: Dec 2008

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
Posts: 2
Joined: Jan 2009

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.

janepjohns
Posts: 4
Joined: Jan 2009

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

mbates09
Posts: 6
Joined: Feb 2009

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
Posts: 52
Joined: Apr 2009

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's picture
donna_lee
Posts: 429
Joined: Feb 2009

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
Posts: 52
Joined: Apr 2009

You are my hero!

Doc P
Posts: 4
Joined: May 2009

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!

s_d_l
Posts: 3
Joined: Nov 2009

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!

dgilly's picture
dgilly
Posts: 16
Joined: Sep 2009

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
Posts: 76
Joined: Feb 2009

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's picture
dgilly
Posts: 16
Joined: Sep 2009

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!

KCFighter's picture
KCFighter
Posts: 50
Joined: Jan 2006

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!

Diamonds11
Posts: 1
Joined: Nov 2009

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.

frank kirkey
Posts: 8
Joined: Oct 2009

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's picture
lbinmsp
Posts: 266
Joined: Jun 2006

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
Posts: 27
Joined: Dec 2009

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.

icemantoo's picture
icemantoo
Posts: 1627
Joined: Jan 2010

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's picture
lbinmsp
Posts: 266
Joined: Jun 2006

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
Posts: 1
Joined: May 2010

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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