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Having a life after Kidney Cancer

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

Holiday greetings to everyone who pops into this board. I'm here to tell you that having hope for a future, the support of friends and family, and some goals for yourself will go a long way toward reaching those goals.

It's been 4 1/2 years since I was "sort of" given a terminal sentence of 5-7 months with metastatic (Stage IV- T2N2M1) Clear Cell RCC. Surgery in 2006, and 2 recurrences with surgery in 2007 and 2008, have taught me a lot about having a good attitude and my desire to live.

This week has really brought home how important my desire to be with my family is. The previous three nights have been filled with a high school music concert for the 14 year old grandson, and primary and pre-school concerts for 6 and 4 year old granddaughters. The 11 year old grandson gets us in the spring and fall to watch baseball and soccer.

My daughter in law was pregnant at the time I was first diagnosed. The goal I made was to be at the baby's wedding some year in the future. Last week, we did a grandma/g-daughter shopping trip. She picked out a dress for her pre-school concert, hair ribbons, small stuffed animals for her and her sister, a frog for grandpa's birthday (yesterday) a family game and a pair of snazzy tennis shoes. Then we went to a subway shop for lunch. In between we talked.
You can't put a price on the fun we had and the silly things we talked about. Her mom said she was over the moon for the next two days. I smile a lot as I recall her saying "Stay, dinosaur" to a box that tipped off the shelf edge.

And by the way, I saw my oncologist yesterday, too. I've had so many CT's in the past few years that we are going to do an abdominal untrasound w/chest x-ray in three months. If everything looks unchanged since the September CT, we'll switch to just 1 CT a year with ultra/xray in the intervening time.

Sooo, whatever you celebrate, enjoy your time together and look to the future. It does get better.
Donna

EarthMama
Posts: 12
Joined: Dec 2010

thank you for choosing to live. you are an inspiration to me. =)

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

Donna,

Over the past year I have tried to give hope and encouragement to the new members of our club especially to those whose journey started as Stage I like mine and whose survival rate is close to 100%. Your story reaches out and gives hope and inspiration to those members whose Kidney Cancer was caught in later stages. I hope you can join me to help those whose diagnosis I can not personally relate to, but you can.

I plan to be at the weddings of each of my 5 grandchikdren ages 14.13.12.11 and 9 going on 19. How close are you to your grandchildren's weddings?

Best wishes during this Holiday Season.

Icemantoo

amurillo63
Posts: 29
Joined: Sep 2010

Thank You Donna!! I can relate so well to your story about your grandchildren, I have 8 grandkids soon to be 9 any day now and they are my pride and joys. As for your story of survival,it is inspirational to me and I'm sure to anyone who reads it. It just goes to show how important it is to have a positive outlook no matter what we are faced with.
Thank you for sharing your story with us Donna!
Anna

RBindy
Posts: 3
Joined: Dec 2010

Donna,
Thank you for sharing. I am brand new to this site and with Kidney Cancer.
Quite anxious about recurrence of the cancer since surgeon, oncologist and internist are all concerned since my tumor was graded a 4 (fuhrman grading) aggressive. (I have RCC Clear Cell with 95% sarcomatoid features)
Since the tumor was only removed Oct 12, 2010, by robotic laparoscopic surgery (partial nephrectomy w/ 10% kidney removed), I was so positive and confident that the next steps would be periodic scanning. Tumor found early and small- 4cm. Surgeon's pathologist claimed stage 1a and surgeon advising I was 95% cured!
With my hubby and I having nagging questions about this cancer to our surgeon, we did get referred to an ocologist. His pathology dept. advised: cancer invaded fat tissue, you are stage 3 plus the tumor removed did not have clear margins. So back to surgeons I went and am now facing open radical nephrectomy on Jan 3, 2011 (that's the soonest the surgeon felt comfortable in performing another major surgery on my body.) This will be with a different surgeon (same medical group as oncologist). 2nd opinion was valuable.

With all that said, my point is that after hearing your story,you have brought me more hope and helps me continue my positive thinking. I have been overwhelmed with all the events. It has been a roller coaster that has not finished yet or at least leveled out some.
I am enjoying my family and friends (& co-workers) and accepting their help and support. I feel a bit odd since I usually take on the role of caregiver. I'm trying to hold back my anxiety about the upcoming surgery until Jan 2nd, along with my worry about those cancer invaders roaming my body from after the last surgery.

Merry Christmas to All/ Happy Holidays to All / Happy New Year!!

amurillo63
Posts: 29
Joined: Sep 2010

Hi RBindy,
My thoughts and prayers will be with you for your upcoming surgery. I wish you all the best.

DebsGirl
Posts: 8
Joined: Dec 2010

My name is marianna... my mom called me dec 16 2010 and said that when getting a ct for arthritis in her hip they discovered something on her kidney... on dec 17th she had another scan to see what it was... today she called to say that she has stage 1 rcc on her kidney... thing is she has only one kidney (horseshoe kidney) we knew this already and after thursday i began researching and found that ppl with a horseshoe kidney are 8x more likely than the general population to develope rcc... she has an 8cm cyst on the right portion of her kidney and the cancer is in that... on jan 10th she will travel to mayo clinic for a second opinion and a minimal invasive laproscopic surgery to remove the right portion of her horseshoe kidney leaving her with diminished function... my sister in law is a surgical assistant and lives 1hr from the mayo clinic so will see my mother thru recovery... she talks like they will get it all and it will be over... but i think she is trying to cover for the sake of her 6 kids 6grandbabies... #7 is on the way... i want to know the full story... my research tells me this is more serious than she is letting on... also how do i help her through the coming months...

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

Marianna,

I read your post and to my knowledge this is the first one here dealing with RCC in an only kidney. I am sure she will be in the best hands at Mayo Clinic and other than wishing her the best I for one would have to leave these medical questions to her doctors.

Icemantoo

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

Just when I think I've read about everything, I see someone has a horseshoe kidney. Sorry about your mom and I wish her well.

I'm sure my daughter is sitting back waiting for something to zing her. Me with RCC, her dad with Stage III Kidney failure (let his BP go to high) and our son had kidney stones and was Dx'd with a "sponge kidney" in half of one.

You just have to have hope for recovery and the future.
Donna

DebsGirl
Posts: 8
Joined: Dec 2010

i feel like in talking to her and my siblings all of whome deal with these sorts of things waay dif than i... myself being the type to want to talk about whats happening... reach out to friends and family for prayers and well wishes... when im faced with something that scares me i try to take back some of the control by making myself an expert on the matter... this being rcc... my thoughts are to 'prepare for the worst... pray for the best... and remember that no matter what happens its all in gods hands' i dont want to feel like this cancer knows my mom better than i know it... it being the cancer... so ive chosen to educate myself on rcc so that im not heartbroken or blindsided if things dont go our way... my siblings however want to act like its not happening and say... 'after moms surgery this will all be over and we wont ever have to think about it again...' not to say that im not optimistic that they could remove it all and not have it return or spread... this of course being my wish and my prayer... however i want to be prepared for what could happen and not lose my mom and never see it coming and be left angry and confused... mom is telling all of us its no big deal that they will remove it and she will be fine... i know she wants to protect us but im the second to youngest of 6 kids im 25 and i would much rather know whats really going on... maybe im just freaking out over nothing... really tho what are the odds of her beating this the first time around and having it never come back?

amurillo63
Posts: 29
Joined: Sep 2010

Hi Marianna,
I don't know much about the odds for someone in your mother's situation but I can say what she probably needs from you is someone to listen to her fears. Someone to be optimistic when she has none. Remind her that amazing things happen all the time when we have faith. I was told by my oncologist that I would certaintly die in surgery without a blood transfusion which I do not accept due to my beliefs. I had a radical Nephrecomy on Oct. 7th. Needless to say I not only came out of surgery but it went better than anyone expected. NEVER LOSE HOPE!!

corey50
Posts: 73
Joined: Feb 2009

dear donna-lee,
i know i've told you this before but wanted to say again what an inspiration you've been to me thru out my journey. i had my 6 month ct scan and bloodwork in november and every thing was good. what a relief that is.it can be very trying having these scans every 6 months but i try not to think about it as best i can.
i love to hear about the fun you have with your grands and the joy you get out of them. i have tried to live the same way by enjoying the little things. my daughter was just in a play at school and my son in a concert at his college and whenever i'm at these things i always think "this is what its all about". and i just thank God for allowing me to be here to enjoy them.
i wish you and your family a wonderful and blessed christmas and the healthiest and happiest new year.
to everyone else on the board please take donna's advice and enjoy the life we have.
corey

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

Hi everyone-
Thanks for the feedback you've offered and the encouraging words. We all need those sometimes. Yes, I've been the caregiver, more than several times. It's hard to be so weak and helpless that you need assistance getting out of a chair (or other things you need to sit on.)

We had a housefull for Christmas Eve. Daughter/spouse and boys staying for 4 days, Son/spouse, girls, and my husbands mom up from town for dinner and presents. We had a great time. One granddaughter asked why we didn't have a real tree? Because of the allergies, I said. And we live in Oregon, the heart of west coast Xmas tree farms, and make our living in the forest. Ironic, isn't it?
By Sunday, I was tired. The boys eat, and eat and eat. And the younger one has extreme allergies, so most was from scratch. Trying to come up with flavors is a challenge, but I did find and/or create some new things (at least to all of us) that were pretty good.

Happy New Year to all and be a Survivor.
Donna

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