Would love to hear from any long term survivors of RCC

lauries said:

My mom as diagnosed 6/09
My mom as diagnosed 6/09 with stage IV. Mets to brain were noticed first and then found primary. Her drs at first were horrible and gave up hope with her. WAIT and see. She started to hemorage and went to a different hospital. Wonderful dr.s there. She had 2 craniotomies and radical nephrectomy all in 4 weeks. She started sutent and it worked for 11 months. SHe is currently on Afinitor. We will find out next month if it is working. SHe is a miracle. SHe has been positive the whole time. I have read about many long term survivors and I tell my mom often about them. Each day new meds are being made and there will be a cure for this horrible disease. My prayers are with you!

LOVE the stories of long-term survival
I LOVE reading all of your stories of long-term survival... it is so encouraging! My mom went in for a scan of her hip as a result of arthritis pain... they were looking for a tear to pursue treatment options... but the arthritis in the hip became a small blip on the radar when they found a mass in her uterus... no sweat jst another uterin cyst... shes had those b4... back to the hip... wait a minute... whats that... 8cm mass on the kidney... wait a minute... whats with this kidney... theres only one... she has one large horseshoe shaped kidney where two should be... ok... she knew this she was born this way... her two kidneys were fused together at the top... no biggie... but that 8cm cyst has a 5cm rcc inside it! ok forget the hip this woman has cancer... this all happened over a 3 day period 2 weeks ago when all she wanted was treatment for arthritis... well lucky for us my sister in law lives one hour from mayo clinic and is a surgical assistant... 01/10/11 my mom will receive a second opinion at the mayo clinic with (depending on results of second opinion) surgery to follow... partial neph using a minimal invasive laproscopic technique... but heres the thing... im not sure im a fan of this... i wish she would opt for the open partial neph... heres why... first of... this is not your everyday kidney cancer... this is kidney cancer on a horseshoe kidney... we dont have a kidney to lose here... also... in my research...(this is how i deal... i become an expert on that which scares me and takes my control away... therefor regaining control and diminishing the fear) ive found that the chances of a partial turning into a radical are much higher with lapro surgery... because A- they cannot see as much B- they have less space to maneuver and often end up removing the entire thing... HELLO PPL we dont have a kidney to lose here... theyre going into the realatively unknown removing cancer from a horseshoe kidney... not a horseshoe that is fused at the top but still functioning as 2 sep kidneys but a horseshoe thats fused at the top functioning as one... i hope the docs at mayo have a better idea... all my research looks grim... not a lot is known about rcc... not a lot of options are out there... and so far as far as prognosis goes... most research extends 5 years then becomes a black hole ... what does this mean... do ppl not live longer than five year with kidney cancer... or does the research only go that far in the future then your considered cured after five years... i want to hear from someone whom has lived 10 years... 20... 30... my mom is not yet 60... she has 6 children 6grandchilren all 5 and under... and one grandchild due in 5 weeks... SHE CANNOT DIE... she has no living parents... no siblings... 2 cousins... i was expecting a good 30more years with my mother... someone out there please tell me this is acheivable... everything ive read is no good... point me to something positive... give me a website that shows research on ppl who have BEAT kidney cancer... no recurrance... remove it... and DONE! also id love to hear from someone whom has had care for kidney cancer at mayo and what was your experience like... also i have so many questions... is it resonable for me to request to talk to one of her doctors to aleviate some of my fears...? im new at this and trying desperately to grasp hold of some sort of control here where it feels like this cancer is in charge...!

Still here
I was diagnosed with RCC in 2001 - had a left radical nephrectomy - tumor was 7.0 cm and localized to the kidney. I had close followup and was nearly at the 5 year mark when I was found to have a very early breast cancer. While prepping for radiation for that, it was found that I had lung tumors - biopsy showed metastasis from the RCC and had a lower lobectomy. That was nearly 5 years ago now and I'm still here! YEAAAH! Again I'm being watched closely and will be for the rest of my life. However, the experts say that my chances are better due to the long period of time between the original and the recurrance.
So - no matter what happens - as long as we're upright and able to communicate with each other, life is good!

DebsGirl said:

LOVE the stories of long-term survival
I LOVE reading all of your stories of long-term survival... it is so encouraging! My mom went in for a scan of her hip as a result of arthritis pain... they were looking for a tear to pursue treatment options... but the arthritis in the hip became a small blip on the radar when they found a mass in her uterus... no sweat jst another uterin cyst... shes had those b4... back to the hip... wait a minute... whats that... 8cm mass on the kidney... wait a minute... whats with this kidney... theres only one... she has one large horseshoe shaped kidney where two should be... ok... she knew this she was born this way... her two kidneys were fused together at the top... no biggie... but that 8cm cyst has a 5cm rcc inside it! ok forget the hip this woman has cancer... this all happened over a 3 day period 2 weeks ago when all she wanted was treatment for arthritis... well lucky for us my sister in law lives one hour from mayo clinic and is a surgical assistant... 01/10/11 my mom will receive a second opinion at the mayo clinic with (depending on results of second opinion) surgery to follow... partial neph using a minimal invasive laproscopic technique... but heres the thing... im not sure im a fan of this... i wish she would opt for the open partial neph... heres why... first of... this is not your everyday kidney cancer... this is kidney cancer on a horseshoe kidney... we dont have a kidney to lose here... also... in my research...(this is how i deal... i become an expert on that which scares me and takes my control away... therefor regaining control and diminishing the fear) ive found that the chances of a partial turning into a radical are much higher with lapro surgery... because A- they cannot see as much B- they have less space to maneuver and often end up removing the entire thing... HELLO PPL we dont have a kidney to lose here... theyre going into the realatively unknown removing cancer from a horseshoe kidney... not a horseshoe that is fused at the top but still functioning as 2 sep kidneys but a horseshoe thats fused at the top functioning as one... i hope the docs at mayo have a better idea... all my research looks grim... not a lot is known about rcc... not a lot of options are out there... and so far as far as prognosis goes... most research extends 5 years then becomes a black hole ... what does this mean... do ppl not live longer than five year with kidney cancer... or does the research only go that far in the future then your considered cured after five years... i want to hear from someone whom has lived 10 years... 20... 30... my mom is not yet 60... she has 6 children 6grandchilren all 5 and under... and one grandchild due in 5 weeks... SHE CANNOT DIE... she has no living parents... no siblings... 2 cousins... i was expecting a good 30more years with my mother... someone out there please tell me this is acheivable... everything ive read is no good... point me to something positive... give me a website that shows research on ppl who have BEAT kidney cancer... no recurrance... remove it... and DONE! also id love to hear from someone whom has had care for kidney cancer at mayo and what was your experience like... also i have so many questions... is it resonable for me to request to talk to one of her doctors to aleviate some of my fears...? im new at this and trying desperately to grasp hold of some sort of control here where it feels like this cancer is in charge...!

your mom
You need to be a part of this. Call and ask these Drs. the questions that you have. I am getting phone calls from my brothers doctor as well as he is. That way I can help him understand it. We are 3 hrs away from the hospital taking care of him but his cancer is large and has metastisized we think so the docs here did not want to touch him. Also his cancer is growing into the IVC vein and that presents alot of difficulties. But please feel free to speak with your moms doctors. I wrote a lot below writing back to someone else......but please get yourself checked. Any siblings and such....and your kids. My mom had kidney cancer in both kidneys, she did not survive that. I had it in one kidney and had a radical nephrectomy.......mine was the size of the whole kidney. Now it seems my brother has it and they had always told me it was not hereditary. I dont believe that now. God Bless you and be strong for you mom. I bet she is going to do well.

rccwife said:

RCC can be hereditary
I found this information from Cancer.net:

"If a person’s first-degree relatives (parents, brothers, sisters, children) have had kidney cancer, or if there are many cases in the family (including grandparents, aunts, uncles, nieces, nephews, grandchildren, cousins), there may be a chance that kidney cancer runs in the family."

There is plenty of other information on the internet discussing kidney cancer in families. My husband was diagnosed in 2008, and we learned that several of his aunts and uncles had already had RCC earlier in their lives.

Familial kidney cancer RCC
I am 52-year old, had my left kidney removed in 2008, RCC stage IV by then and med to lung a year later. I’m still living and kicking, have run my 9th marathon since. My Mother also discovered her RCC last year at age of 90.

jellison3 said:

RCC
Hi lb..I too had a left kidney cancer that actually took up the whole kidney. That was 5 yrs ago and I am cancer free. I want to share with you and others, that you need to have your immediate family members checked. They say that RCC is not hereditary but I think it is. My mother died from it.....it was found late and she had it in both kidneys. I have survived and happy. Just before the Christmas season, my brother started urinating blood. Went to the ER and eventually had a CT. Yes he had a large mass in a kidney that looked like a cancer. Biopsy shows that it is. His is very large and he is going to go on Sutent to help shrink it some hopefully. He has masses in both lungs and his lymph nodes look to be involved. I can only pray that he will do as well as some of you others who had mets and are still alive and well. God Bless you, it helps me feel that there is hope for him. He has yet to begin the medicine but it will start soon. But please let your children, brothers, sisters and parents know that they may be at risk. It is just too inordinary that 3 of us, immediate family members have gotten kidney cancer and it not be hereditary. I dont know why we didnt think to urge my brother to be checked before his got this big. It would of saved him from a lot of problems and the mets. God Bless us all and thank you for your words also.

No family RCC
but had one brother die of liver cancer, anther from acute myeloblastic leukemia, a sister with melanoma (still living) and then a few breast cancers thrown in. OH JOY! The best for any of us is - early detection and quick surgical removal. God bless!

donna_lee said:

Hi there
What do you consider "long term." When I was Dx'd in May of 2006, the terms palliative care, and 5-7 months were used. I'm still here. The first surgery, 2006, was a Radical without adrenal gland, but it had already mets to the liver and a set of nodes. My gall bladder was removed ,also, because of a congenital defect. The surgeons said they got it all so I didn't qualify for any drug trials -and at that time they were testing sunitinib and sorafanib.

Wait a year, have CT's every 3 months and a node popped up positive on biopsy. Remove it!
That's 2007. Wait another year, Dr. thinks Ct's at 6 months is adequate. Wrong. Another node popped up (like button mushrooms growing in the dark). That was 2008. Since then I have had my blood tested every 3 months at the oncologists, every 4 months by my internist, and am down to CT's every 6 months. No cancer drugs.

I'm 57, work sort of full time, play hooky when I want (we own the business) work in my yard, participate in community activities, play with the grands -all three families went camping a week ago, and am getting ready to go on vacation. So I'm getting to live as a survivor and take every day as something that was not offered over 4 years ago. Yeah....I'm here for the long term.

Keep up your spirits, think positive thoughts, and set goals for a long time from now. Then live your life so you can achieve them.

Good luck. Donna

Longtime Survivor
I have celebrated 1-1/2 years of cancer free, and it is nice to read your post. Everytime I go in for a CT Scan, I become anxious!!! And, it was nice to read your post. I am going to an oncologist - not the urological oncologist surgeon, I originally went to. I feel more comfortable with the staff, etc. So, as long as the oncologist is running all of the tests, CT Scan and blood, and my primary care is running blood work, do you feel like that is sufficient?

DO I NEED TO BE GOING TO A UROLOGIST, AS WELL? I do not know, and this is the part that bothers me. Also, sometimes, like now, I have discomfort in my lower back, near my spine. Does that mean anything?