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RCC and Re occurrence new member

flojoe
Posts: 4
Joined: Mar 2012

Hi my name is Joann,

I recently had my right kidney removed last August 2011. I am 43 years and was devastated to learn that I had a 10 by 14 cm tumor in my kidney. It was a stage 2 (due to the size) grade 1. My oncologist said it is 20% chance of re-occurrence and my urologist said 5-15%. As seen most post they both said they got it all but like most others it comes back. Not only do you have to get over the pain and thought of losing your kidney now you worry about cancer and it coming back. I know I go for chest x-rays and ultrasounds every 3-6 months. I feel so out of control and have to get over this fear. I know it normal but it is not healthy. Every time I fell pain I think the worst. I feel like there is more I should be doing. I heard so much like no meats cheese dairy - vegan way. Expensive Supplements I can not afford. It is just so much running thru my mind. I am flank pain on both side and back pain all the time. I had a full open kidney removal. I am thinking with pain on both sides something has returned. I go Thursday for my ultrasound and praying for the best. I know I have to stay positive and hopefully someday I can calm my fears. But from what i am reading everyone goes thru these emotions. I am blessed that at the time the cancer was contained even thou the tumor was large it still was contained. I found it by accident thought i had acid reflux and PC DR kept saying you do not need an ultrasound as she thought I was a picture of health but thru my persistence I urged her to schedule one. I believe I did not go thru all this to give up now but some days are harder than others. With God's guidance he will pull me thru this.

icemantoo's picture
icemantoo
Posts: 1510
Joined: Jan 2010

Joanne,

Sorry you had to join our club. When I started my journey almost 10 years ago it was very difficult if you were not stage 1. Since then they have had a number of break throughs which allow you to live a normal life even if it returns. So far it has not returned and with your vigilence and pro active attitude with your doctors it doesn't stand a chance. You are already seeing an Oncologist and at this point there is nothing more to do than stay positive. Worrying excessively is not going to help. Even the most pessimestic out look is a lot less than many survivors have faced and conquered.

Best wishes.

Icemantoo

PS I haven't had one of my kidneys for almost 10 years and I don't even miss it.

flojoe
Posts: 4
Joined: Mar 2012

Thank you for the kind words of encouragement. It really helps to talk about it with folks that have been thru it. Friends and family think
I am cured and blessed and as I believe that as well it is good to speak to those that have been thru it as well

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

I was diagnosed with a stage 1, post surgery they said, stage 3, even they are worried of recurrence, and we just don't know. Maybe I will be OK after all ?

Tests like these are mirrors, they reflect what is already going on in our bodies. That said, we have to go through these anxieties now, at each step, there will be tests, we will look within, but would you rather not ?

The bliss of ignorance no longer exists. The choices are difficult. It worries me to nausea, I am not exagerrating, but what can I do ?

All I can now do, pray, that there is a higher power managing all this. The more religious people will help better in that regard.

My best wishes,
R.

DogRescuer's picture
DogRescuer
Posts: 50
Joined: Feb 2012

Having cancer simply changes who we are in many ways. For example we seem to be hyper vigilant of aches and pains now. But then we also have a new appreciation for waking up and enjoying each day.

I was nervous about going in for scans every 3 mos too (my tumor was 8.5 cm), but my dr had a very different perspective which helped my attitude immensely. While there's a 15-20% chance of it recurring, we'll be watching you very closely so that if something does turn up, we'll simply deal with it and treat it.

Somehow, that really helped my peace of mind.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Hi FloJoe,

Sorry you had to join our club here. I can relate to what you're going through and feeling and I guess everyone else here can as well. It's like we were a certain person before the cancer diagnosis and we will now forever be different people after the diagnosis. It's all about finding a new normal, I guess. The other thing for me was, here I was just living my life and then I hear the words, "you have cancer" and then you're thrown into surgery and come out with your head spinning. I didn't even begin to deal with this until after surgery. It all just went too quickly. I'm still dealing with it today, somewhat.

Sometimes I try and put things into a different perspective, too. For instance, my little sister lost her only child, my 16 year old nephew, to a car accident 7 years ago this past March. Erik was 3 years younger then my son. We both had 1 boy. Now Erik is gone and my sister has no children and never will. She will have no grandchildren, either. Personally, I'd rather have cancer then lose my son. Sometimes I look around and there are just so many people out there that are worse off then I am. By saying all that, I don't mean to minimize what you, I or any of us are going through. It doesn't make it much easier to be in our situations, but maybe it helps a little to deal and live with it. When I think of my sister, I consider myself blessed to have only had cancer and if it kills me some day, which I hope it doesn't, at least I still have my son.

Also, my doctor told me I had around a 5% chance of recurrence. I couldn't stop thinking about that, but then I turned it around and thought, but that means I have a 95% chance of it never coming back. (I can't remember if I came up with that on my own or if someone here said that to me. Fuzzy, old brain of mine.) So, that helps me to try and remember that, too.

Well anyway, sorry to get so long winded. I'm glad you found us. It really helps to have people to talk to that can relate. Family and friends are wonderful, but they don't fully get it unless they've been through it, too.

Blessings,
Lisa

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Joanne, You are being vigilant. Keep your follow up appointments and have regular scans. Otherwise, you are going to drive yourself crazy worrying too much. I've mentioned several times that that would be spending too much energy in the wrong direction. Stay positive. Do like the song says, "Don't worry, be happy." Enjoy your life. Don't suffer through it.

flojoe
Posts: 4
Joined: Mar 2012

Thank you everyone I can not tell you how great you all make me feel. My doctors have been supportive thru all this. As my urologist told me let me do all worrying for you. I thought easier said than done. But is true there is nothing I can do but keep getting my scans and thinking positive. I grateful it was found in time before it spread.

My mom has renal cancer Stage IV so it is hard becuase all we do is focus on cancer. She was diganosed in July 2011 and I shortly after that in AUG 2011. I was being persitant with my DR as I wanted to be checked even thou she felt it was not necessary. I know my mom saved my life becasue I did not have any symptoms. I feel awful becuase my mom's road is much harder than what I am dealing with and I feel silly even crying about my situation.
God does work in mysterious way.

I know my cancer was found for a reason becasue I have so much more life to give and live.

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Hi Joanne,

I am happy to hear that your cancer was caught early and most likely will never bother you again. I think a positive attitude is a must for all of us survivors. We can't let the illness WE HAD rule our life. I truly believe a strong positive attitude keeps our immune systems operating at peak performance. I wish you and your Mom the best. Hopefully, she will be able to take advantage of some of the new drugs and live a long and healthy life.

Health and happiness to all,

Wayne

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

As others have said, fear is very understandable and very normal. I'm so glad, though, that your doctors are following you very closely. As most of us know, the only 'cure' for RCC is surgical removal so IF IF IF it comes back, you and they will catch it early while surgery is still a good option.

My initial diagnosis indicated that it should not come back - Stage I, Grade 2, contained within the kidney, no renal vein involvement, no lymph node involvement. But still, I found that I wasn't living - but just going through the motions between scans. I became so ANGRY at myself - because by allowing the fear to control me, I was letting cancer control my life. It was almost a physical battle but I chose to live life one day at a time - nobody knows what tomorrow can bring, but I would get up in the morning and say to myself - today you're alive and healthy and it's a glorious day! I reached the point where I only got scared a few days before the next set of scans. I chose LIFE - whatever that meant - I traveled, played, had a few great adventures - and laughed as often as possible.

I've had a couple of recurrances - but I've continued to travel, play, laugh - LIVE. I intend to keep doing all of those things - one day at a time. As I've told my friends and doctor - God's driving this bus now - I have no control - but I intend to enjoy the scenery until the bus stops!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Joann,

Very sorry to learn what you and your mom are going through, there are therapies available to her today that did not exist a few years ago. The "magic bullet" may be just around the corner ending the need for this club of which you now are officially members.

Pay close attention to what Lisa and lb have said, their posts are spot on. It is very easy to get sucked into the darkness of dread and fear that comes with cancer, but that's what IT wants, that's how IT wins, don't let that happen. "Odds" are for Vegas, but if you knew there was an 80-85% chance of winning wouldn't you place a big bet? Staying positive reduces stress, reduced stress levels strengthen your immune system, when coupled with vigilance and medical advances the "odds" on long term survival can only increase. Heck, odds are we'll get hit by lb's bus before cancer gets us. You are in my thoughts and prayers.

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