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May I ask how your kidney cancer was detected?

recnac_grl
Posts: 36
Joined: Sep 2008

hello-
I'm just wondering how everyone's kidney cancer was found? My beloved sister's was found stage 4 after having stomach pains for a while. She passed away shortly after her kidney removal surgery (nephrectomy?). I miss her every day and still mourn for her. It has been 2 years but seems like just yesterday. Like everyone else, I hate cancer.
I would appreciate if you would be willing to share your experience of how you were diagnosed. Did you have symptoms? Was it found incidentally? Thank you.
And just so you know, my prayers are will all of you and your families. God bless.

Warmly,
Dottie

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi,
I am not an expert and don't want to speak incorrectly on something so important, and hopefully somebody here who knows more about these kinds of results will respond. What's your stage? Sounds like it would be Stage 3. And the Furhman grade? Grades 1 - 4, with 4 being the worst and 1 being the best (if we can use such a word as "best"). Although cancer wasn't found in the lymph nodes, the cells found in the renal vein indicate that you are at greater risk for metatasis than, say, a Stage 1 or Stage 2. In other words it COULD have spread elsewhere via the renal vein, but there is no evidence that it has. Microscopic cells that escaped the renal vein would eventually grow and become obvious. I would think the option of doing nothing would be to spare you the side effects of the drugs if there is no evidence that it has spread. The drugs option (a trial drug or one that is more commonly used) would work on the assumption that the cells have spread and try to kill them before they grow and spread elsewhere. This is my layman's understanding that comes primarily from reading a lot of stuff here and other places online about kidney cancer. I could be wrong. Your oncologist should be able to explain it to your satisfaction. Your treatment or "do nothing" option will be a decision that you will have to make after consulting with your oncologist.
Wishing you the best,
Mike

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

ejones,

I'm sorry to meet you under these circumstances, but you have come to the right place for support and help as you deal with RCC. We have all been on the roller coaster ride of fear, emotion, and WTF, you are not alone and what you are experiencing is part of the process. I don't have personal experience with vascular invasion, there are others here who do and you will probably hear from them. There is also a vascular invasion thread that could be of help. If you could provide a bit more information from your path report like type, stage, and grade it would be helpful as the group lends a hand.

Gary

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Gary and Ejones,
I'm still pretty much unclear about whether or not "vascular space" and "renal vein" invasions are one and the same. Raj's situation was very similar to mine regarding size and grade. He said he had "renal vein" invasion and was put at Stage 3. My pathology report indicated "vascular space invasion" and I was put in Stage 1 and told no treatment was necessary. I really don't know the difference. That's why I asked ejones about his Stage. I assumed it was Stage 3 because treatment was an option. It's worrisome at times to attempt to explain things here because of the possibility that we could be wrong and are just passing on our misinformation.
Everybody, don't be afraid to ask your doctor questions. Yet sometimes that doesn't help much as you can see from my situation after asking about vascular space invasion two times already and still being uncertain about the exact meaning. I only know he has given me a >90% chance of survival. When I don't understand something and find myself worrying aboout it, I have to force myself to remember this and be grateful.
Regards,
Mike

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

Hi Mike,

I know what you mean, I feel funny saying anything when the only space invaders I'm familiar with was the arcade game from about 100 years ago. Sometimes we just have to rely on what the "experts" tell us.

Gary

ejones_pa's picture
ejones_pa
Posts: 8
Joined: Mar 2012

Mike and Gary, thank you for your responses. My husband and I are in quite a tailspin right now as I am sure you understand. There is so much to take in and try to evaluate. I am 51, female, and Stage 3, (T3 NO NX or is it MX) Still greek to me. I will have to have the oncologist today write this down. My surgeon who I saw yesterday is also anxious to hear what my second opinion oncologist has to say. My surgeon was confident that the cancer was contained within my kidney, no cancer cells in the lymph nodes and was quite surprised that there was microscopic cells in the renal vein that he removed. He stated that tumors can grow inside the vein but this was not the case. Am I fooling myself thinking that removing the kidney was enough? I see that others on here have definate types of cancer, including the type, stage and grade. I will ask the doctor today to better explain this to me. As you said fear, emotion and plain old WTF ! Thanks will keep you posted and will follow up on the vascular invasion thread.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

ejones,

Here is a web page that might help with understanding the pathology report:
http://www.cancer.net/patient/Cancer+Types/Kidney+Cancer?sectionTitle=Staging With Illustrations

Mike

pookiesue
Posts: 1
Joined: May 2012

my doctor found a spot on my RIGHT kidney,& blood in my urine so, she sent me to a surgeon .He said, I would rather not operate at this time because its not that big & im ,not sure it is cancer so lets wait 4 months for another test to see if it has grown.I told him my kidneys hurt so bad. He said there is no pain in the kidneys. I guess Ill have to wait & see in 4 months.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

The advice you've been given is sound - wait and watch and don't do anything prematurely - this is now accepted as the best approach with small tumours.

When did you start getting the pain that you feel to be in the kidney area? It will probably go away spontaneously. If not, then you'd better have it explored in case there's something else that needs attention.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I wonder what has become of Sean who posted such an inspirational message on 16th March. Does anyone have any info? He deserves the best possible outcome and it would be so good to hear that he's doing well. He was due a CT scan on 17th April.

SeanT
Posts: 2
Joined: Mar 2012

First of all, I have to apologize for not getting back here sooner and updating everyone on my condition. I found this site during recovery and never really thought anyone would really pay attention to it until I got an email last night asking me to post a response. Well.....the results came back clean.....absolutely no new growths or any signs of cancer so far. There is a couple spots on my lungs but they have not grown an iota since DEcember and a 3 cm growth on my liver but they say that too has not grown since December and they consider it a benign tumor. What a relief to me and my wife...very very happy with the results. Next scan is in 3 months and I hope it is the same....Now, I would appreciate it very much if all of you wouild just follow my lead and do the same....let's kick the hell outta this disease and support each other when it tries to fight back.
I will try my best to keep you all updated in future and please do not hesitate to drop me a line telling me how you are all doing as well - this life of mine has gotten very busy lately and I dont get the time to surf as I should......emails definitely help.....lol. Stay strong....and live LIFE!!!!

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

Hi pookie,

Did the doc mention size at this stage? What were the blood in your urine and pain attributed to? Were kidney stones mentioned or possibly a UTI? Waiting is sound advice, but if you have unanswered questions use the time to get them answered.

Good luck and Godspeed,

Gary

KJones1969
Posts: 158
Joined: Mar 2012

My husband was in the hospital 2 times with anemia. The doctor was doing other test when I ask for a consult with an oncologist and he ordered a catscan with contrast. He had a nephrectomy in March and just started Votrient Saturday to hopefully treat the 5 spots in his lungs. He has stage IV clear cell carcinoma.

matchframe
Posts: 58
Joined: May 2012

I woke up with extreme pain and my wife took me to the emergency room. They did a CT Scan and confirmed my first kidney stone in my right kidney. The Dr came to talk with us and said that I also has a mass on my left kidney. I ended up going to MD Anderson where I had surgery on 15 September 2011 to remove part of my left kidney. The mass was stage 1 cancer. I have since returned to have a follow up CT Scan which confirmed that they got all of the cancer out. I now have to return once a year for CT Scans to monitor my kidneys. I call that kidney stone - my first and only kidney stone - a gift from God. It was because of that stone that we knew about the mass that early.

Kamdan2015
Posts: 1
Joined: Apr 2015

I am writing this hours after my father passed away, two days after being transferred from the hospital to hospice. Three weeks ago, I could never have imagined the journey my family was about to be face. On Easter Sunday, three weeks and one day ago, I came out to Las Vegas on a scheduled vacation to see my parents for a few days. I live in Alaska. Before then, my dad's health had not been any source of concern. He had mentioned he had been struggling with an annoying cough, but this was just a casual mention in conversation. Nothing I lost sleep over. You see, my 62 year old father was one of those obsessive health-nut types. Never smoked in his life, star college athlete that maintained his physique by following a strict diet and daily exercise regimen. But when I arrived in Vegas for that vacation, I saw my dad. And he was not OK. 

My dad sat me down for a talk and relayed his health struggles over the course of the past three months, which he didn’t up until that point believe to be anything serious. He told me of the beginning cough in January, and how he had waited a month to go to the doctor. He told me he had lost weight, and felt weak, but he blamed this on poor sleep and change in appetite. Nothing tasted good anymore. He couldn’t understand why food and drinks he had loved his whole life, he could no longer tolerate. The man that had sworn off sugar and fat for the past 30 years, was now desperately trying every take out dish or dessert available just to taste something he could withstand. In the few days after I arrived to town, my family and I must have spent 100’s of dollars running around town getting food for him. All of which he took one bite of, or often just spit out in defeat.

My dad also shared with me that blood work in February revealed he was slightly anemic, and he had been taking supplements prescribed by his trusted internist. A chest X-Ray and colonoscopy had come back clear, and my father’s doctor didn’t seem alarmed enough to search for further answers. He had an upcoming doctor’s appointment scheduled for the next day. This would be an eye-opening experience. And the beginning of our tragedy.

At this point, my father was too weak to drive himself to the appointment. On our way, I begged him to seek other medical attention or check himself into the hospital. I had never met his doctor, but already I did not trust him. How could I? My dad, the man who played tennis and worked out every day of his life, could barely walk on his own. And this doctor was sending him home after the colonoscopy and X-Ray were clear? This was mild anemia? My cries were quickly shut down by my father, as his loyalty to his doctor was unshakeable and he refused to consider other opinions.

During the appointment, my initial concerns were quickly validated as my father’s doctor continued to talk about previous physicals and recent tests that had all come back ‘perfect’ or ‘normal’. He went over with my dad, who could barely sit up on the examination bench, what vitamins or supplements he took. He suggested stopping the fish oil and aspirin. Stating, “Wouldn’t it be great if this was all because of the daily baby aspirin?”. The defining moment for me was when the doctor turned to me, a man who had known my father for the past 15 years, and asked “Does your father look pale to you?”. As calmly as I could I answered, “Sir, this is serious.” He ordered more blood work, and considered a CT Scan. I made sure to turn this consideration into an order. 

Blood work done. CT Scan accomplished. Fast forward two days. I had extended my trip until the end of the week, and sent my fiancé home to Alaska on his own. We are at the doctor’s office again, but this time my dad can’t walk in on his own. He needs my mom and I to support him. He can’t sit on the examination bench either. He requests a corner chair instead. As the doctor comes in, I know it’s bad. He has tears in his eyes, and if I didn’t already know it he repeats my thought out-loud, “This is bad”. I slipped down to the floor and wrapped my arms around my dad’s legs, as the doctor told us what the CT Scan had revealed. Kidney cancer. And it appeared to have spread to the lungs. 

An hour later, and my dad was finally where he should have been long ago. The hospital. As hospitals go, we waited for answers and tests and doctors for what seemed like days. Nothing moved fast enough. My dad had a Thoracentesis performed right away. The cell biopsy took five days. During this time, my dad demanded to be released. Despite hospital doctors saying ‘no’, my dad called his trusted internist, who relayed his wishes to staff and had him released two days after he arrived (without even seeing him). We had a hospital bed and oxygen delivered to the house, where my dad stayed for two more days. During this time, my dad’s health continued to decline, highlighted by one particularly rattling moment when he tried to walk from the couch to the bed and collapsed on the ground. Through my older brother’s resourcefulness and the grace of God, my father agreed to return to the hospital three days after he had returned home. When he arrived at the emergency room, he had a temperature of 102 and needed an immediate second Thoracentesis. 

For the next week and a half, meetings with the oncologist left us with a plan of action for weekly chemotherapy. Radiation, though an initial possibility, was no longer viable due to the spread. The oncologist stuck to his opinion, that my dad should continue to fight. Though after a week on the BiPAP mask, a draining tube placed in his lung (Thoracentesis no longer working), down to 145 lbs and no longer able to communicate verbally due to horrific mouth sores, my dad was visibly giving up. And so was my mom. Though my brother and I tried to advocate as hard as we could for him to keep going, my mom ultimately made the decision to stop treatment after the second week. After I asked my dad the hard questions (Do you want to stop treatment? Do you want to go to the hospice?) and received his nod of ‘yes’, I too accepted the decision.

After transferring to the hospice, my dad was still aware of things but barely there. Yesterday, we talked to a feisty and wonderful female chaplain who told my mom she was not being fair to my dad by constantly talking to him, and crying by him. She explained that those dying needed a place of peace and quiet, to find forgiveness and make things right with God. She encouraged us to take breaks and respect the process, as men in particular wait to pass away until they are alone. Following her advice, my mom chose to sleep at home that night. My dad passed away the next morning at 6 am, before any of us had returned.

All in all, it has been three weeks and one day since I arrived in Las Vegas, and knew there was something wrong with my dad. It has been a little over two weeks since he found out he had cancer, and just shy of two weeks since he started chemotherapy. As the oncologist said, the cancer most likely had been there, growing, for a long long time. But good ole’ dad was too healthy to show signs until it was too late. Along the way, there were severe injustices primarily in the medical care my dad received that I’m sure ultimately added to his demise.

todd121's picture
todd121
Posts: 844
Joined: Dec 2012

I don't understand how your dad could have gone so long without being diagnosed. No matter how healthy he had been before, there must have been other signs or symptoms. Perhaps not, but I just have trouble considering that he couldn't have had other symptoms. It seems he had a doctor that was just too stuck on the idea your dad was healthy and not willing to let go of that.

I'm very sorry for your loss.

Todd

rae_rae's picture
rae_rae
Posts: 290
Joined: Oct 2010

I am so sorry to read your story about your father's kidney cancer diagnosis and passing. You must be reeling from the past few weeks. I agree with Todd, there were probably other signs and symptoms but sometimes they are so subtle it's difficult to determine if it's something serious or just part of life. So sorry for what you and your family have gone through.

Hugs,

 

Rae

APny's picture
APny
Posts: 646
Joined: Mar 2014

I am so sorry for the loss of your dad. I’m with everyone wondering how it went undiagnosed for so long. How is it possible that the x-ray was “clear” when the RCC had spread to his lungs? So very sad and you and your family are in my thoughts.

cliffv
Posts: 1
Joined: Aug 2015

I am sorry to hear about your loss. Cancer is a terrbile thing. Kidney problems run in my family, both on my mother and father's side.  I had several kidny stone attacks since I was 22.  On Oct 4, 2013. I had that sensation of a kidney stone attack.  I went to bed thinking it would go away.  I woke up about 5:00 the following morining and the pain was worse.  I drove myself to the local emergeny room, as the pain was severe. I was nauseatede on the way in.  The pain was severe and I was given paim medication.  The nurse practitionner that saw me did some further testing and ordered a CT scan I will not forget his wods, "I have some bed news for you-you have kidney cancer."  I also had a kdiney stone.  He referred to a urologist in a neighboring city and I had another CT scan done it reveal a tumor on the right kidney.  I was schedule for a right nehprectomy on november 4, 2013. This was done laproscopically. I went into surgery about 1:15 P.M. and returned to the room from recvoery about 6:30 P.M.  The surgeon iinformed me that it was "negative at the margins." The pathology report stated that is was 6.5 X 5.6X 4.2 CM  It was grade 3.   I am very thankful for the kidneystone, that reveal something far more serious.  If I did not have the kidney stone attack, the cancer would have been addressed and I probablywould not be here.  I thaank God every day for His abundant mercy!!  I recovered quickly and was back to work within a month.  I was also back to preaching within a month.  Cliff VB

  

Footstomper's picture
Footstomper
Posts: 387
Joined: Dec 2014

Until Ist May 2013. Got up to pee in the middle of the night . To my horror, astonishment and disbelief I peed blood. Naturally, as an Englishman, I made a cup of tea went back to bed and hoped It'd be gone in the morning. I was scared so I went to the doctor. She suspected gallstones so sent me to get ultra sound. Ultrasound found a shadow....

jason.2835's picture
jason.2835
Posts: 213
Joined: Nov 2014

Stomps,

Other than the peeing blood that was exactly how mine was detected... suspected gallstones, abdominal US, found "shadow" (laughable, they knew what it was), hastily scheduled MRI, confirmation of mass... the rest of history.

- Jay

foxhd's picture
foxhd
Posts: 2258
Joined: Oct 2011

I told my wife that I was beginning to feel like I was in my 30's again. I had weight trained and run regularly since being a teen. But over the previous few years I had told people that I was going to pick it up a notch. I said that when I die, I wanted to be in the "best shape of my life!" Hours later I was also peeing blood and doubled over in pain. I had to go to the ER and was diagnosed. Pain was difficult to manage without IV dilaudid. Tumor was removed a couple days later. No waiting 2-3 months for me. Actually by the time most people wait from diagnosis to surgery, I was already back jogging and golfing.

izzycohen
Posts: 65
Joined: Aug 2013

Like, nearly everyone else. I felt I was completely healthy.  On a business trip to Iowa, I got up during the night to use the bathroom.  Standing there in front of the toilet, half asleep, scratching my head, I look down and WHOA, WHAT'S HAPPENING?  The bowl was very very red.  I had no idea what was happening, but it wasn't good.  I got up the next morning an hustled home to Chicago, was in my MD's office by 13:00.  He wasn't too excited, felt it could have been a kidney stone.  Guys my age, 62 at that time, occasionally will pass blood after doing something unusually strenous.  About two hours after leaving the doctor's office I suddenly was in extreme pain.

We ended up in the ER.  They too thought it was a kidney stone.  Gave me some pain pills. took the ibuprofen away from me.  24 hours later I was back in the ER with the extreme pain.  They conducted a CT scan and discovered a 6CM tumor on the right kidney. I had been in the habit to taking two ibuprofen before bedtime for a number of years.  An old habit from my heavy drinking days.  The Urologist that visited me in the hospital felt the ibuprofen caused my blood to thin to the point where the kidney was "spitting" mini clots. 

Two weeks later I underwent a radical left nephrectomy.  Clear cell carcinoma, fuhrman grade 3.  They felt they got it all.  No chemo. No radiation. Have had 3 CT scans, 1 MRI and 1 ultrasound in the past two years.  At the two year mark, 7/31/2015, I learned my most recent scan was NED.

I consider myself among the luckiest people on earth, am grateful for every day of my life.

JMP393's picture
JMP393
Posts: 1
Joined: Aug 2015

I had very bad back pain all day then went to E/R they found mass on my right kidney. Referral to my doctor and after about a month of testing they found another mass and then I was told it was cancer. On Feb. 15, 2012 they removed that kidney and I have been cancer free for 3 years now.

Wow what a life changer.

Julie   

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