CancerCompass message board discussion started by ewiro on 7/4/2008 http://www.cancercompass.com/message-board/message/all,25726,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I'm new to this site so I thought I would share my story with you. I had been dx with bilateral RCC in Oct.2005. A week later went in to have more than 60% of my left kidney removed. Tumor was close to 5 cent. They also had to remove a rib as tumor was sitting on that. In doing so, my lung partially collapsed and I got a slight case of pneumonia. Was in ICU for 2 days. Went home after 5 days.6 weeks later went in to have my right kidney completely removed. There was no saving it as the tumor was too big and entwined in the renal vein.That was done laporoscopily. Drs said it would be easier. BALONEY ! I never felt worse in my life. I was so sick and weak after that operation. Went home less than 48 hrs later. I thought the 1st operation was bad enough being cut open from front to back but not as bad as the 2nd one.On top of this, the whole change in kidney function or lack of sent me into early menopause. Couldn't sleep, feverish, and side effects from the meds were horrible made me even more nauseous. My complexion was grey and sickly. I was very very sick.I had no enery or strength. But after 4 months I went back to work. I work full time, I had too.  That too was heart-wrenching, no one at work could understand what I was feeling emotionally and physically. They thought since I'm at work that everything must be ok. How wrong they were. They were actually afraid to ask how I was feeling. I never felt so isolated in my life. I thought no one but another person dx with cancer can understand so I looked for support groups, anyone who could help me feel not so alone with this type of cancer. But there is nothing in my area at all. I've checked local hospital where I had my surgery but nothing. My urologist's office contacted me a couple of times since my recovery to talk or meet with a couple of patients who were just diagnosed with kidney cancer to show /explain that under the most gravest conditions, they too can make it, as I did and beat the odds (for now) and hopefully they can too. Afterall I had it on both kidneys and they only had it on 1. There kidneys were not going to be removed just the tumor. So there is hope. there is always HOPE !The only dr's I see are my urologist for my cancer screenings, a kidney specialist, who is awesome and my primary care. I'm still playing the merry-go-round of medications to see what will work best for my little remaining kidney to keep it working and off of dialysis for as long as I can. It's a struggle.I was in great health before this, never smoked, eat sensibly, exercise regularly, slim build for my height and don't even drink cArbonated drinks,  so go figure?No history of any type of kidney problems in my family. I have 6 brothers and 2 sisters. All thankfully still healthy !None of my doctors have recommended genetic testing at all. They have never even asked me any questions relating to environmental conditions that may have caused this? They don't seem to care how or whyI got it? But I would like to know! Have to watch EVERY thing I eat. Can't eat too much protein-must stay under 50 grams a day, have to watch potassium, sodium intake,sugar. I now have high blood pressure due to limited kidney function and cholesterol has spiked up greatly due to meds.I can't explain why I'm still here almost 3 yrs later, only that God must have other plans for me, or there is some lesson I need to learn before I move on. I'm extremely grateful for each and every day I'm blessed to be here with my family. Without their prayers and support I don't know where I would be. Prayer and a positive attitude are essential to your well being.This was not an easy path for me at all. One thing I did not do was waste my time being angry. Why? what would that accomplish except negative feelings and depression. Would it make me feel better, I think not? Was I scared? most definitely ! But I chose to concentrate on living. I had cancer but it was not going to have me. I tell myself every day, cancer you are NOT welcome in my body.. go away !!!! May sound foolish but it's been almost 3 yrs and I'm still cancer free.Love life, embrace it, laugh, and even though it may be the hardest thing to do !  and PRAY ! God does listen ! ewiro Fri, 04 Jul 2008 00:00:00 GMT  On 7/4/2008 ewiro wrote:I'm new to this site so I thought I would share my story with you. I had been dx with bilateral RCC in Oct.2005. A week later went in to have more than 60% of my left kidney removed. Tumor was close to 5 cent. They also had to remove a rib as tumor was sitting on that. In doing so, my lung partially collapsed and I got a slight case of pneumonia. Was in ICU for 2 days. Went home after 5 days.6 weeks later went in to have my right kidney completely removed. There was no saving it as the tumor was too big and entwined in the renal vein.That was done laporoscopily. Drs said it would be easier. BALONEY ! I never felt worse in my life. I was so sick and weak after that operation. Went home less than 48 hrs later. I thought the 1st operation was bad enough being cut open from front to back but not as bad as the 2nd one.On top of this, the whole change in kidney function or lack of sent me into early menopause. Couldn't sleep, feverish, and side effects from the meds were horrible made me even more nauseous. My complexion was grey and sickly. I was very very sick.I had no enery or strength. But after 4 months I went back to work. I work full time, I had too.  That too was heart-wrenching, no one at work could understand what I was feeling emotionally and physically. They thought since I'm at work that everything must be ok. How wrong they were. They were actually afraid to ask how I was feeling. I never felt so isolated in my life. I thought no one but another person dx with cancer can understand so I looked for support groups, anyone who could help me feel not so alone with this type of cancer. But there is nothing in my area at all. I've checked local hospital where I had my surgery but nothing. My urologist's office contacted me a couple of times since my recovery to talk or meet with a couple of patients who were just diagnosed with kidney cancer to show /explain that under the most gravest conditions, they too can make it, as I did and beat the odds (for now) and hopefully they can too. Afterall I had it on both kidneys and they only had it on 1. There kidneys were not going to be removed just the tumor. So there is hope. there is always HOPE !The only dr's I see are my urologist for my cancer screenings, a kidney specialist, who is awesome and my primary care. I'm still playing the merry-go-round of medications to see what will work best for my little remaining kidney to keep it working and off of dialysis for as long as I can. It's a struggle.I was in great health before this, never smoked, eat sensibly, exercise regularly, slim build for my height and don't even drink cArbonated drinks,  so go figure?No history of any type of kidney problems in my family. I have 6 brothers and 2 sisters. All thankfully still healthy !None of my doctors have recommended genetic testing at all. They have never even asked me any questions relating to environmental conditions that may have caused this? They don't seem to care how or whyI got it? But I would like to know! Have to watch EVERY thing I eat. Can't eat too much protein-must stay under 50 grams a day, have to watch potassium, sodium intake,sugar. I now have high blood pressure due to limited kidney function and cholesterol has spiked up greatly due to meds.I can't explain why I'm still here almost 3 yrs later, only that God must have other plans for me, or there is some lesson I need to learn before I move on. I'm extremely grateful for each and every day I'm blessed to be here with my family. Without their prayers and support I don't know where I would be. Prayer and a positive attitude are essential to your well being.This was not an easy path for me at all. One thing I did not do was waste my time being angry. Why? what would that accomplish except negative feelings and depression. Would it make me feel better, I think not? Was I scared? most definitely ! But I chose to concentrate on living. I had cancer but it was not going to have me. I tell myself every day, cancer you are NOT welcome in my body.. go away !!!! May sound foolish but it's been almost 3 yrs and I'm still cancer free.Love life, embrace it, laugh, and even though it may be the hardest thing to do !  and PRAY ! God does listen !Thank you for sharing your story.  My husband  was dx in Dec 07 with bilateral rcc.  His left kidney had a 10cm tumor and  the right had a 7cm tumor.  He took Sutent for 6 months and the tumors shrunk 25%.  He had surgery on 7/1/08 on his left kideny and they were able to save 60% of the kidney.  He will have surgery on the right tumor around 8/11/08. The tumor on the right is smaller but situated in a bad spot we were told.He is 3 days post op and they did a chest x-ray because of fluid in the lung.  Do you know what that could be from?thanks,robin robina Fri, 04 Jul 2008 00:00:00 GMT Dear ewiro,If I had your history of bilateral RCC and lung collapse, I would want to investigate Birt Hogg Dube syndrome, a rare hereditary syndrome that causes bilateral kidney tumors, lung cysts, lung collapse, skin bumps on the face (fibrofolliculomas) and sometimes, colon cancer.  See http://ghr.nlm.nih.gov/condition=birthoggdubesyndrome o http://www.birthoggdube.org/ for more information.  For a free email support group for kidney cancer patients, see http://cancerguide.org/kofaq/ .   Trishpm Sat, 05 Jul 2008 00:00:00 GMT  Thank You  Someone who knows! I have felt like maybe it was all in my mind. I hope you are doing better. And have more good days then bad. I still struggle for emotion,and energy.Its like I have no feelings about anything. This is the hardest for me not feeling happy,sad,fear. I feel no emotion. I went to MD anderson in houston tx, hoping to find out . Why I still have no energy,why I do not feel things . They like everyone else said it takes time.I have found out one thing. I can not eat the food I use to and just about anything I do eat comes back up. And I still gain weight,If I keep gaining weight I want be able to walk.I thank you for listening ,and know I know what you are going threw.I will keeep in touch   nonnie50 Tue, 26 Aug 2008 00:00:00 GMT For some reason I did not get your whole story. Am sorry in the way i replyed. I did not know you are on your way to being cancer free.God must have special plans for you.And did!  Now you talk to others. Share what you have been threw, I know this helps everyone. Thank You for your story, and that you have adjusted and pray you never have cancer again. nonnie50 Tue, 26 Aug 2008 00:00:00 GMT