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Would love to hear from any long term survivors of RCC

autumn4
Posts: 18
Joined: Oct 2010

I also have RCC. Had surgery last month to freeze the tumor. Will have a cat scan in 6 months if not sooner because their is blood in my urine and still running low grade temp, losing weight and no appetite. I'm still greiving over the diagnosis and would love to hear from long term survivors. I know their is hope and my faith is strong.

icemantoo's picture
icemantoo
Posts: 1529
Joined: Jan 2010

Autumn4,

I remember how I felt when I was told I had RCC. It was not fun.

Your tumor was small enough for the freezing procedure. That puts you in the 50 to 60% of people with RCC, myself included whose survival rate is close to 100%. Hopefully the other issues resolve themselves. My surgery was on 8.1.2002 with a 2.6cm. tumor and my continued care for the RCC over the last 8 plus years has been limited to CT Scans and ultrasounds. Boy are those contrast beverages for the CT Scans delicious.

Icemantoo

autumn4
Posts: 18
Joined: Oct 2010

No it is not fun to hear you have cancer that's for sure! Thank you for the encouraging words and stats. Come to find out I have a bladder infection so that explains why I have been feeling crummy.Wow 8 years cancer free! That's awesome! May God continue to watch over you. And yes those contrast drinks are delicious! NOT!

donna_lee's picture
donna_lee
Posts: 402
Joined: Feb 2009

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

autumn4
Posts: 18
Joined: Oct 2010

So If I am reading this correctly you were only given 5-7 months and that was 4 years ago! That is wonderful!! I'm sorry to hear of the mets and nodes. Still learning about all that! My treatment plan is the same as yours, will have 1st ct follow up scan in March. Your enthusiasm is awesome! Thank you so much for the wonderful advice, it is very uplifting!

donna_lee's picture
donna_lee
Posts: 402
Joined: Feb 2009

Keep up the good work. And I'm 67, not 57. Freudian slip...or hit the wrong key.

As an aside, my daughter in law was the only person available to dash into my internists office to be with me at the time of diagnosis. Molly was 6 months pregnant with their second child. When I went into this, and got all the surgeons saying they felt certain they could remove everything that was evident, my vow was to be present at the baby's wedding, whenever that may be. Well, she's 4, was Tinkerbell for Halloween, and found out what Trick-or-treating was all about. After hanging back a bit shy, she started leading her sister up to the doors. Wow! Candy!!!

CT's and the inevitable anxiety they bring -from about a month prior until the results are in-can be a stressful time. Don't be afraid to acknowledge the silent stress. Let youself tell your family what is bugging you, even if it is just that you're tired of being the maid or the laundry lady, etc. Because you are impatient to get the test over, you may be impatient with people and other events.

I'm leaving on vacation tomorrow, but will be glad to keep in touch and encourage you thru this journey.
Donna

autumn4
Posts: 18
Joined: Oct 2010

How fun that is to watch the grandkids, I have 3 little grandaughters myself and I didn't get to see them in their costumes this year but it is so much fun to see how excited they are! I hope you have a wonderful time on your vacation! That's what I need! Thanks for your support!

Sasa
Posts: 10
Joined: Feb 2011

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?

Sasa
Posts: 10
Joined: Feb 2011

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?

Sasa
Posts: 10
Joined: Feb 2011

Yes. It was nice to have something to laugh about. They are soooo delicious aren't then? lol..... The CT Scan and IV are a breeze compared to the "contrast beverages."

lauries
Posts: 1
Joined: Dec 2010

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!

DebsGirl
Posts: 8
Joined: Dec 2010

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...!

jellison3
Posts: 2
Joined: Jan 2011

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.

clbl77
Posts: 6
Joined: Mar 2010

Hi Lauries,

My mom was diagnosed in April 2007. Since then she has had mets to the lymph nodes in the chest area and in August 2010 to the brain. She took sutent which worked for her for about 4 months and is now on Torisel. Please keep us posted as to how she does on the Afinitor. I pray each day that there is a miracle medication for this terrible disease. I can empathize with you and will keep you and your mom in my prayers! God Bless!

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

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!

jellison3
Posts: 2
Joined: Jan 2011

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.

rccwife
Posts: 1
Joined: Jan 2011

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.

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

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.

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

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!

MandyBear
Posts: 14
Joined: Jan 2011

I was diagnosed when I was 29 years old. I had a radical nephrectomy and they removed the adrenal gland as well. The tumor was encapsulated and was the size of a football. Huge! I had a wonderful surgeon who went in through my front and clipped off all the bleeders. He took out the entire kidney/adrenal and portions of the feeder veins plus he took many biopsies from all areas and they all turned out negative.
I am now almost 60. I have had no recurrence but have changed my lifestyle. I mainly eat vegetarian, no red meat, exercise about an hour or so a day. I have outlived my whole nuclear family. Sometimes 'it's lonely at the top'. When I was diagnosed, it seems nharly anyone survived this and the Am Can Society was less than helpful. I am glad to see these discussion boards. Yes, the diagnosis is scary. And yes you have to diligent with all kinds of tests and making sure the remaining kidney is functioning well. It's worth it. I have many things yet to accomplish in my life. And you do too. Remember we are human beings who had cancer..not just the cancer itself.

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