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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

swijak
Posts: 13
Joined: Jan 2011

Sudden blood (a lot) in urine followed by pain in lower left back. This uncovered a Stage 1 tumor (8-10 cm ChRcc) in left kidney. No other symptoms prior...

Radical nephrectomy done end of December 2010.

lcsmithfam
Posts: 9
Joined: Dec 2010

I was having over-active bladder symptoms that was no longer being controlled by medication. Family doc sent me to urologist. On the first visit he detected microscopic blood in my urine. I had been a smoker for 30 years - quit 8 years ago - and he wanted a CT scan for bladder cancer. The CT scan was negative for bladder cancer, but did show a tumor in the right kidney. I was diagnosed on July 20 and had surgery on August 30. Stage 1, class 2, clear cell. No further treatment required except close follow up. Believe me, I know how lucky I am and try to be thankful every minute of every day!!

I am so sorry about your sister. I just can't imagine what you are going through. My sister is a retired nurse and took care of my from the diagnosis through surgery and for several weeks after surgery. She brought meals, helped my husband, and got me through every scan, test and everything! I am truly sorry for you and will say an extra prayer for you to be comforted in your loss.

Cheryl

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

No symptoms at all for me. My tumor was found during a random ct scan -- ruling out an intestinal blockage related to my crohn's disease. It wasn't what we were looking for, but apparently a lot of kidney tumors are found this way.

MFT0421
Posts: 5
Joined: Feb 2011

Mass on right kidney found during CT Scan in ER for abdominal pain which was totally unrelated. Had no symptoms of kidney cancer. Turns out to be a 3 or 4 cm tumor which is RCC clear cell type. Scheduled to have partial nephrectomy end of month. Very lucky to have been found early without spread and to be able to have just a partial removal of kidney. I so sorry about your sister. My best to you.

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

My kidney cancer was found when I had a pet/ct scan for ovarian cancer. What a surprise, I had no symptoms at all ! But it is out now and seems to be no spread , yea !
I am so sorry about your sister.
Colleen

Von55's picture
Von55
Posts: 57
Joined: Aug 2010

I'm so sorry about your sister- that's a terrible thing to have to go through.

As you'll see from others on this board, RCC is a quite unique cancer in that it is usually slow-growing and is most often found incidentally. Symptoms can be vague or even absent for a very long time- and the unfortunate thing is that if not detected before it spreads it doesn't have as high a cure rate as some other cancers because often chemo & radiation are ineffective against kidney cancer.
I had few symptoms except for tiredness, polycythemia (high red blood count) and some back pain which I thought was just my lumbar arthritis playing up, and the tumour was picked up on ultrasound for a previous ulcer condition. I had an open partial nephrectomy and they found a rare benign tumour- praise God- which was almost identical to RCC. Some people report blood in the urine, flank pain, extreme tiredness, but many have no symptoms at all.

I may have the wrong end of the stick, and please forgive me if I say the wrong thing here Dottie, but there was nothing you could have done to have helped your dear sister other than to have been there & loved her through her ordeal. It is so natural to think that if you'd been more alert you could've caught it in time, but it isn't true. I went through years of guilt & pain when my darling Dad passed away with brain cancer- I was 23yrs old & had lost my Mum suddenly 2yrs before, and in my grief I blamed myself- I should've known what was wrong! But no, it was beyond my control & eventually I found peace with it all. It didn't bring them back or stop me missing them, but it did ease the pain.
Blessings on you,
Von

recnac_grl
Posts: 36
Joined: Sep 2008

thank you for sharing your stories with me and for all of you kind thoughts. i wish all of you the very best in health and happiness. take care.
dottie

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

and first let me say how sorry I am about your sister. As most of us here know, this is one sneaky disease and most often, found 'looking for something else'. I had had a terrible back pain for nearly two years. This wasn't unusual as I'd had an old back injury but nothing helped. After going through massive doses of Ibuprofin, physical therapy, etc. I had an MRI that showed a 7 cm mass involving the left kidney. Had a radical nephrectomy and then one recurrence to the right lung almost 5 years later. After I was diagnosed, it seemed like I was meeting soo many people who had the same disease, all discovered accidentally.

Be kind to yourself - I've lost two brothers to different cancers and I know it's a rough ride. God bless.

icemantoo's picture
icemantoo
Posts: 1593
Joined: Jan 2010

Unfortunately GP's are not that good about detecting RCC because it masks itself as other ailments and the final detection is made when the patient finally has a CT or ultrasound which are not authorized until they are justified to your heath insurance carrier as being medically necessary. I had a pain shoot up my leg when I drove for more than 15 minutes and my GP suggested a referral to an Orthopedic Surgeon. After heavy yard work something that was supposed to be yellow turned red. My GP insisted I probably just broke a blood vessal, but referred me to a Urologist just to confirm there was no problem. The Urologist had me take a CT Scan to rule out anything serious. Well the results showed a 2.7 cm on the end of my Kidney which even I could clearly see on the CT Scan pictures. From there a referral to a Urological Oncologist who specialized in Kidney Cancer Surgery and of course on to the Nepherectomy and here I am 8 and 1/2 years later welcoming the newcomers to our club. Unfortunately some of us are diagnosed too late and there is nothing we can do except offer our prayers. Even though RCC goes undetected for years and grows very slowly a majority of the new members to our club are cured by the surgery and even where some spreading has ocurred the new drugs provide a much better outlook to those whose Cancer has spresd.

donna_lee's picture
donna_lee
Posts: 415
Joined: Feb 2009

So sorry about your sister. Like her, when mine was dx'd it was stage 4 and had metastasized to the liver and a set of lymph nodes. It was discovered more by accident when I saw an internist.
To back-track, my longtime Dr. had retired and the guy who came in was pretty wishy-washy as a Dr. All I was doing was having a yearly check and ok for meds I was on. My blood pressure had slowly been going up, but nothing was said.
Dr. Wishy-Washy moved away and the Dr. who took over his practice, and who I didn't see till the following year, ordered a urine analysis along with regular blood work. I had been very involved with planning a statewide convention for the summer prior and thought I was just worn out from going so fast. But when I saw the new Dr. I mentioned that I had had several episodes of nausea/vomiting-get it over with in 6-18 hrs. and then feel fine. So he ordered an abdominal ultrasound for what I thought might be a gall stone.
The untrasound showed a large mass in the r. kidney, 1 or 2 masses in the left lobe of the liver; and the urinalysis showed hematuria ( I was passing blood in the urine.)
No other aches, pains, etc.
Hematuria definitely indicated a problem to investigate, even if they hadn't had an ultrasound.
The nausea/vomiting episodes were caused by whatever was happening in the liver and a congenitally defective gall bladder.
So with a big time surgery in 2006, the team remove r. kidney, L lobe of liver, gall bladder, and lymph nodes with 2/11 positive for renal cell carcinoma/clear cell.
I have had 2 separate recurrences in single nodes, one in 2007, and another 2008, both removed with surgery.
Lots of CT's to check on stuff, regular blood work with my internist and oncologist, on BP meds since there is only one kidney to process all the fluids I need to drink. And all my next tests coming within the next two weeks. I keep my fingers crossed and live my life, go to work, play with my grandkids, travel, garden, stay busy in the community, and stir up trouble. Emotionally, it has been difficult at times. Sometimes being a survivor is hard. But I'm glad I'm still here.
And again, my condolences. I wish everyone who is diagnosed was a survivor. As the years go by, the chances are better than ever. When I was dx'd there were only 2 drugs available for kidney patients, and they almost killed you. Now there are at least 4 types of drugs on the market that have been thru trials and they are having success with treatment and extending life.
Donna

Sasa
Posts: 10
Joined: Feb 2011

It was found purely by accident. I was having discomfort in my right, middle section of my stomach and pelvic area. Doctor thought it was appendicitis. Turned out to be cancer. Had open, partial nephrectomy; cancerous tumor was removed <2cm. I think that the pain I was feeling was from my intestines. For years, doctor told me I had IBS, etc. But, it turns out, after CT Scan, etc., and colonoscopy, it is Diverticulitis, and if it had not been for that pain, I would NOT have been diagnosed as early as I was. I am grateful to God.

Dottie, I can't imagine how your sister felt, because it is a very scary diagnosis, as I am sure all cancers are. And, in the late stages of most cancers not a lot can be done. The only advice I can give is: If you are continually have discomfort, whether it be sharp pains or dull pains or consistent pains or non-consistent pains, which ARE NOT NORMAL; then, go to your doctor and insist on a CT Scan w/contrast. I am sick at my stomach a lot, and I have a lot of fatigue. I do not know if this is normal or not, but like, right now, I am ready to go to sleep. And, I am at work.

Sasa

dwsmithnj
Posts: 4
Joined: Feb 2011

I had been having periodic CT scans, as follow up to testicular cancer (in 1994).

The CT in October found a small growth on my kidney. The MRI confirmed it. By the end of Novenber, I was "under the knife" having the growth removed. Determined to be Stage 3 clear cell RCC.

Now, under the "observe" protocol -- CT scans every 3 months for next year.

antjeanne's picture
antjeanne
Posts: 13
Joined: Aug 2010

i had 18 kidney stones in my other kidney, while doing scans they found a mass in my other kidney. i am thankful for my miracle. im 7 months post op.

trulytall's picture
trulytall
Posts: 14
Joined: Mar 2011

hi recnac_girl: First of all, please know that I'm sending prayers and thoughts to you and your family during your time of loss.
Getting to the question you've asked, much like everyone else, it was just a 'fluke' that cancer was found on my left kidney. I went to the ER complaining of chest pain and a CT scan was ordered as followup, revealing the tumour on my kidney. That was in December 2010 and in January '11 I had a complete nephrectomy on my left kidney. Although I still feel like I'm whirling around, wondering what really happened to me...everything just seemed to happen so fast...I'm also so very thankful that the surgeon feels confident that the cancer was completely removed. Still a bit scared and still recovering,I pray everyday for continued good health and also for all my blessings around me.
Take good care Dottie.
Denise

jona187's picture
jona187
Posts: 74
Joined: Apr 2011

My wife, who is 29, found out about her Chromophobe RCC during a sonogram check up for our first born child. It's been a month since our surgery (her's, but it feels like I went through it too).

jengen12
Posts: 18
Joined: Oct 2010

My dad had a massive heart attack in November. In December he started building up fluid. Doctors at the hospital said it was due to the bypass surgery. They did a cat scan just to see his body. Found 2 massive tumors in his left kidney pushing up into his chest and he was diagnosed with stage 4 clear cell carcinoma.

survior2011
Posts: 2
Joined: May 2011

I had blood in my urine. I woke up my husband and told him to please take me to the ER. The ER doctot look at my age 20 something and maybe its a UTI. I'm a nurse. I know it was not a UTI. I reqestedfurther testing. Wbich the ER filnially gave me. I wait three long bours for the radioloigist to confirm it look like a cancerous tumor. It was confirmed with nephrologist.

candoredo
Posts: 44
Joined: May 2011

I was lucky I was getting an MRI for lungs and they just went low enough for the tumor to show up.I was refered to a urologist who sent me to the surgeon, and he is a great surgeon. I had no symptoms, nothing that would indicate a problem.

Healing_like_ Wolverine's picture
Healing_like_ W...
Posts: 3
Joined: May 2011

Hi Dottie,

My name is Tony and like some of the other post here, my cancer was an incidental find during my annual check-up. My General Practitioner (GP) noticed that my creatatine level in my blood test was slightly elevated and sent me to get an Ultrasound of my kidneys.

The results identified "spots" so my GP sent me back to get an MRI. Those films detected a 3.6 X 2.5 cm mass in the rt kidney which was diagnosed as Renal Cell Carcinoma (RCC) on April 1, 2011. I had a partial nephrectomy on April 20, 2011 and I am still in my recovery time.

I sincerely owe a debt of gratitude to my Doctor who remained pro-active and persistant enough to find the cause of the elevated creatatine levels.

Tony

Malroy85's picture
Malroy85
Posts: 5
Joined: Mar 2011

Well, one day I had A LOT of blood in my urine. It was weird. So I kept an eye on it for a few days, and kept having some. So I went to the ER. They ran blood tests and a urinalysis. They said it was a UTI. They gave me antibiotics and sent me home. It cleared up. Yay. Several months later, I saw some more, but it wasn't nearly as bad. I went to a clinic--UTI--More antibiotics. Then nothing for a year. Then, I started feeling nauseated all the time, couldn't keep food down, and started losing a lot of weight. I had some flank pain, but it was in a weird spot and would move... I went to the doctor and they did blood work. All fine. Urinalysis. Fine. PAP Smear even. Fine. I decided to deal with it and try again later. 6 months later it was getting really bad and my energy was super low. I wasn't functioning all that well and couldn't get a job. Decided to go to a different ER (I had moved back home in a different state) and they decided to run a CT scan. BAM! There it was. Ended up being Stage 4 Papillary RCC, type 2. It was hard to diagnose because I was only 25. No one, least of all ME, was expecting cancer.

suzika's picture
suzika
Posts: 12
Joined: Jun 2011

I'm sorry for your loss.

My kidney cancer was another incidental find. I had an infection in my abdomen (cellulitis) and they sent me to another hospital to have a CT scan done, while there they found the tumor in my right kidney. I had no symptoms, at all. My cancer was clear type stage 1b, fuhrman 2.

I was 33 at my diagnosis and had my open nephrectomy on December 1, 2008.

madla
Posts: 1
Joined: Aug 2011

While having my 6 month recurring scope after my bladder cancer in 2005, my urologist asked if I had any other symptoms like blood in urine, problems with urination, etc. I almost said nothing, but I did have a slight pain in my side which I am to this day sure was just a muscle strain from gardening. He said lets do a CT just to be safe and see what it is. The CT showed nothing wrong where my pain was but showed a solid mass in my left kidney. Ended up being 2.4 cm renal cell carcinoma which has just been treated 3 weeks ago by doing a percutaneous cryoablation. Cured again I guess and now I am a 2 time cancer survivor...lucky to have had 2 of the "good" cancers. Don't really want to go for the hat trick though... :)

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

I had no symptoms whatsoever.

I'm 43 and have had IBS for years. I had a particularly bad episode and my gastroenterologist decided to order a CT with contrast to check for diverticulitis. No diverticulitis, but the CT revealed a 2.5 cm mass on my left kidney. I was referred to a urologist when felt strongly that I would beat the odds and my tumor would be benign. I went ahead with the biopsy, but unfortunately, it was positive. At least that made the surgery decision a no-brainer.

I had a radical hand-assisted laproscopic nephrectomy on July 6, including the adrenal gland. Tumor was stage 1a and grade 3. Now I'm waiting to see the oncologist for further follow-up.

Interestingly, I had a CT without contrast 2 1/2 years before this one. Looking back, the radiologist was able to a shadow of this tumor, so I know it's been there a while. I also had gall bladder surgery and a hysterectomy in the last 2 1/2 years, all the time with that cancer lurking. I can't believe it!

Personally, I find others are a little freaked out and scared when they hear my story (I guess I was, too.) This cancer is so tricky and you don't expect someone who looks totally healthy to have cancer. We tell everyone who will listen to pay attention to their body and be assertive with their doctors. You just never know...

1530jesup
Posts: 3
Joined: Jan 2010

I was lucky, instead of being macho and ignoring back pains, I went to my doc. not finding any cause she sent me for an MRI with the expectation I would wind up at a chiropractor for the first time in my life. the MRI saw a shadow and I started down the RCC path that led to a radical left nephrectomy 8/27/09. the good news for me was that they caught is soon enough and I have no evidence of disease after the surgery. in that case, the protocol is waiting and doing CT scans - perhaps forever.
sorry about your loss. be well and good luck, Rich

BG
Posts: 85
Joined: Jun 2011

I am taking cholesterol medicine, and during a routine doctor visit my liver enzymes were high, so my doctor asked if I wanted to get an ultrasound to check my liver or wait 3 months for another blood test to check enzyme levels.

I said lets go ahead and do the ultrasound. During the liver scan, they also scanned my right kidney (since liver is on right side) and found a 2.9 cm mass, a day later the CT scan confirmed, 1 month later I had a laproscopic partial with Davinci robot (2 weeks ago). I had no symptoms, but I will be asking if my creatine levels were elevated.

Confirmed to be RCC, and am waiting on pathology report for more details.

BG

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

I'm so sorry to hear about your sister, most of us here have survived because our RCC was discovered when they were looking for something else, the story is not as pleasant once symptoms present. I lost my father in-law and six friends to this disease prior to my diagnosis in the ER following a motorcycle accident. A 5.1 cm mass, left kidney, lap. rad. on 11/20/09, I was 58 with no other symptoms. For me, the physical recovery was easier (not easy) than the mental side. Having known so many that died from the same illness survivor's guilt, once they told me I was "cured", was really a ***** (sorry about the language but that is tame compared to what I wanted to say). I'm at peace with it now because I know there was nothing I could have done to change the outcome, some things are just meant to be, but they will not be forgotten. I hope this board and the stories of so many others helps you as much as it has helped me.

Hang in there,

Gary

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

I had my first ever attack of Diverticulitis on June 21st and wound up in the ER. (Diverticulitis runs heavy in my family.) While doing a CT Scan to confirm the Divert, they saw a mass on my left kidney. As with so many other's, mine was detected while looking for something else. The physician said it was "divine intervention" that I had the Divert attack. I had an open partial nephrectomy of the left kidney on August 22nd. I'm still reeling from this whole thing. It all went so fast and I still can't believe someone said those 3 words to me..."You have cancer".

I'm so sorry for your loss. I can't imagine what you're going through and just know my thoughts and prayers are with you. Take care.

Lisa

nicmarie75
Posts: 54
Joined: Apr 2010

My mom went to the ER for chest pain 8/1/98 (she was 41 and on birth control pills and a heavy smoker, slightly over weight) and they found a blood clot and an xray saw something on the lung, (details fuzzy) so they ended up putting her on Coumadin? and a month later abt 9/3/98 she came back to ER with clot in her neck, pain swelling left neck region with difficulty swallowing (even though on Coumadin already) so they figured metasis and did CT scan. Found mass on left Kidney 8x7x10 and nodule on right lung base, also found shadows on Liver at some point in all this. Did left nephrectomy (sp) and started Chemo, at DX was told 4 mo to live. Mom was in denial (her father had just died in 95' of Parotid Gland Cancer, it was not easy, it was horrible) so I gather she was so very scared. She still went to work as close to full time as she could with Chemo treatments an hour away 3 times a week. She had instances of "spaciness" and work had her go out on disability. Dec 29 98 she went back to ER (cant remember why) and they found spots on her brain. They admitted her and records talk of a plan of her getting out and starting Radiation. She never left the hospital....she had deep vein thrombosis of the left arm and got Pheunomia. Her 42nd bday was 1.7.99 and we all came to hospital to celebrate her bday. She was having a lot of trouble breathing. Had breathing treatments and they were not working after a while. Though she was kind of declining didn't think she was going to die...thought she would be released. They even talked of releasing her in the days before her death. Night of her bday she asked that one of us sleep there with there, I did, my sister went home. I stayed up to very early morning talking to my mom, at one point she asked for the priest, I told nurses, they dismissed her said she was panicking she would be fine. I went to sleep sometime after 5am and woke at 9 am ish to a nurse coming into the room to give my mom meds and my mom was gone....she had passed sometime from when I went to sleep....It kills me to this day that I was not awake with her when she left us. Still don't understand why she died when she did....with my grandfathe and ex MIL they got to the point where you could see they were going to die....my mom never looked like that :-(

Liora4queen's picture
Liora4queen
Posts: 22
Joined: Nov 2011

I'm so sorry that you lost your sister. I lost my mom to ovarian cancer 9 years ago and even though I am now dealing with kidney cancer, in some ways it is harder to watch someone you love go through it than to deal with it yourself.
I found mine accidentaly. I had some bloodwork and a urine test done by the life insurance company. I was buying life insurance because I had lost a mother to ovarian cancer and mom's sister to breast cancer (both young) and was worried that it might happen to me. The urinalysis picked up an abnormal microalbumin/creatinine ratio. I spent a while googling to find out what that could mean and found out about a study that showed that certain proteins in the urine can be a sign of ovarian cancer.
I freaked out because I had some ovarian cysts that my OBGYN had been watching at that time, and I went to my internist. She told me that she was sure it was nothing, but I pushed her to repeat the tests - they were the same and I was feeling really scared, so she referred me to a nephrologist.
He told me that it was nothing, but said he'd do an ultrasound to make sure that I had two kidneys. Turns out that I have 2 kidneys and 1 "mass"! He told me that he was sure it was just an angiomyolipoma, because Im so young and have no symptoms or risk factors. He followed up with a CT scan with and without contrast(2 months later!) and my lump lit up like a beacon.
I'm scheduled for surgery (lap. partial) on december 7th. So I started out looking for ovarian cancer and ended up finding kidney cancer.
Watching my mother going through ovarian cancer taught me a lot about being responsible for my own health and advocating for myself. I also believe that she is looking out for me from up there and will help me through this.

flatlander's picture
flatlander
Posts: 46
Joined: Dec 2011

My NP ordered a ultrasound of my belly as I had a lump on my chest. Yip after the student then the senior Tech scanned my belly for over an hour I asked if anyone was gonna scan the mass on my chest. They said oh your doctor.ordered.belly.only, let me call her. Unable to get her on phone they checkd it and it was a harmless mass of fat called a lipoma. BUT they said, 'do you get.kidney.stones?'. And I said 'no but that may explain why.my backs has been hurting me'. Then radioligists report said 2 cysts found. I am allergic to cat.scan dye so off to MRI and they said it was a tumor not 2 cysts. Now I wait for surgery and hope they get it all.

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

Short story for me. One evening I developed alot of pain and hematuria. Had no previous symptoms. Had to be admitted for pain control. Pain was from a renal vein thrombus. Kidney removed a couple days later.

etrainor's picture
etrainor
Posts: 8
Joined: Dec 2011

Hello Dottie,
I'm so sorry for the loss of your sister. Did she have any symptoms prior to being diagnosed?
Two weeks ago, I had a left laprascopic nephrectomy. I had pain in my left side and back area, anemia, later blood in my urine, and high blood sedidiment lab results for 3 months prior to being diagnosed. After having a CT scan of the pelvic and abdomen area, I was diagnosed. I'm fortunate to have had symptoms early enough to have the cancer contained to the kidney. So often the symptoms are sutble.

I hope this helps you.
Sincerely,
Colleen

Bigjo
Posts: 1
Joined: Feb 2012

Hi i live in the UK, my story is very similar but im glad i came cross this group today because i got some answers reading your stories, I was having teouble with my prostrate, went to my GP he did the psa test, and sent me to see a specialist who said i had to come into hospital and hve a camera down my front passage, being a man it was painful, he didnt even look at my prostrate went straight to my bladder. And saw a growth going into my kidney tube, he s. You have a Tumour, i said ok how bAd is it he said well its cancer just like that, i said so what are you going to do, he said you will come back in a few weeks and ill take it out give you a high dose of chemo, BUT it will keep. Coming back, so i had it removed, then a dose of chemo and home i went, butvith in 2 weeks i had a lot of pain in my abdamon, so i phoned my gp got an appointment andcwentbto see him he took a urine test sent it off, A week later ivrang the gp for thecresult he said it wasnt an infection and left it at that, i was in a lot of pain so rang my consultants secretary and she got me an appointment in 4 weeks, so im going this monday, but i have more problems now i seem to be getting hairy fingers and arms even on the inside of my arms, And still they havent looked at my prostrate which has a lump on it its enlarged, im in a lot of pain cannot go to,pee unless i take a water tablet, my creatanin is changing monthly, i know i have more than they realise now i have to have scans done he said but the doctors consultants and hospital are over looking something and taking to long to diagnose me while the cancer i believe is spreading, after reading all your posts i can see it now so next monday my consultant is going to get it from me ive had enough of the pain, and enough of them ignoring my problems now i shouldnt have to be looking it up on google my symptoms its their job, but a big thankyou for opening my eyes today enough is enough now

j_rod
Posts: 125
Joined: Mar 2012

I had severe abdominal pains. The doctor ordered a ct scan. It was diverticulitis. The ct scan picked up a mass on the kidney. Luckily it is only 2.5 cm so they consider it low grade and low stage since it hasn't gone to any other tissues/organs. I have to wait until april 3 for my operation. Hoping they don't find any more when they get in 'there'. I guess i am 'lucky' i have diverticulitis. Otherwise, it may have been longer before they found it. ...And then, who knows? I don't want to think about it being worse than it is now. I feel that I just got 'lucky'. I am sorry for your loss.

Michael6701
Posts: 26
Joined: Sep 2011

I had several ultrasounds and CT scans for various issues over several years and a cyst or mass was always reported on my right kidney. Further evaluations always concluded that it was a simple cyst incapable of becoming a cancer. Then I had some abdominal pains due to adenitis for which they ran a scan in the ER. The radiologist again reported it to be a simple cyst, but this time follow-up was recommended. I saw my Internist and he sloughed it off as a cyst and said we'll look at it again every year or so. At my insistence he sent me to a urologist who, though he never actually looked at the films, also said it was a simple cyst. Having lost 3 siblings to RCC I took it another step. I ordered the CD of the scan and went to another urologist. He looked at the films, repeated the scan and concluded it to be cancer; the UCSF specialist concurred. I had it removed via an open partial nephrectomy and the found a stage 1, 5cm papillary Type 2, grade 3 cancer. Fortunately I was persistent enough to finally get a proper diagnosis and get it removed, apparently in time.

Michael6701
Posts: 26
Joined: Sep 2011

I had several ultrasounds and CT scans for various issues over several years and a cyst or mass was always reported on my right kidney. Further evaluations always concluded that it was a simple cyst incapable of becoming a cancer. Then I had some abdominal pains due to adenitis for which they ran a scan in the ER. The radiologist again reported it to be a simple cyst, but this time follow-up was recommended. I saw my Internist and he sloughed it off as a cyst and said we'll look at it again every year or so. At my insistence he sent me to a urologist who, though he never actually looked at the films, also said it was a simple cyst. Having lost 3 siblings to RCC I took it another step. I ordered the CD of the scan and went to another urologist. He looked at the films, repeated the scan and concluded it to be cancer; the UCSF specialist concurred. I had it removed via an open partial nephrectomy and the found a stage 1, 5cm papillary Type 2, grade 3 cancer. Fortunately I was persistent enough to finally get a proper diagnosis and get it removed, apparently in time.

Michael6701
Posts: 26
Joined: Sep 2011

I had several ultrasounds and CT scans for various issues over several years and a cyst or mass was always reported on my right kidney. Further evaluations always concluded that it was a simple cyst incapable of becoming a cancer. Then I had some abdominal pains due to adenitis for which they ran a scan in the ER. The radiologist again reported it to be a simple cyst, but this time follow-up was recommended. I saw my Internist and he sloughed it off as a cyst and said we'll look at it again every year or so. At my insistence he sent me to a urologist who, though he never actually looked at the films, also said it was a simple cyst. Having lost 3 siblings to RCC I took it another step. I ordered the CD of the scan and went to another urologist. He looked at the films, repeated the scan and concluded it to be cancer; the UCSF specialist concurred. I had it removed via an open partial nephrectomy and the found a stage 1, 5cm papillary Type 2, grade 3 cancer. Fortunately I was persistent enough to finally get a proper diagnosis and get it removed, apparently in time.

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Texas_wedge
Posts: 2807
Joined: Nov 2011

What a salutary story Michael - thanks for sharing it with us all. It may help a lot of others who are too unsure of themselves, too intimidated by the 'gods in white coats' and too shy of challenging their judgments. It's particularly important with RCC, more than other cancers, certainly, to stick to one's guns as you did simply because it is such a sneaky disease. Even the supposed experts can get it very wrong, as you found out, fortunately, in time.

Roggy
Posts: 10
Joined: Mar 2012

One night while taking a shower I felt a large lump on my neck. The next morning I went to my local doctor who imeediately sent me to a cancer doctor. When he looked at it and said that he was pretty sure oit was cancer he ordered some test done. When the ultra sound came back he said that he wanted another doctor to talk with he. That was the kidney cancer doctor. He told me that I had RCC cancer in addition to non hodgkins lymphoma cancer. Left kidney was removed and I am doing ok right now. Sorry about your sister....Life is not fair. I lost my only child......

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

I was having leg pain and due to my breast cancer 3 yrs ago, my oncologist ordered an MRI of my spine. Showed no bone mets thank goodness, but caught a glimpse of an 8.5 mass on my left kidney. Never had any symptoms.

With all these accidental discoveries it's led me to the ridiculous belief that most of the people out there are walking around with kidney tumors, but they just don't know it. Guess I'm still dilerious from my surgery 2 wks ago.

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

Good point, Dog Rescuer! I must admit I've never stopped to think and wonder how many (especially older people) actually have kidney tumours that have not yet been discovered. Everything we know indicates that there must be a hell of a lot of them.

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myboys2
Posts: 50
Joined: Nov 2011

My son had a small bump on his head and was misdiagnosed for a year. He had a physical during that time and all well in blood and urine. BTW the last misdiag was an oncologist in Kansas City. So There can be no signs. So unless you get at least an ultrasound of the kidneys to see a mass, it can go undetected.

Beingbless
Posts: 46
Joined: Mar 2012

Hi, I'm deeply sorry for the loss of your sister. I am considered myself a healthy and active lady. I exercise and eat right all my life. I did not have any pain or symptom prior to that. In this year Jan, after dinner, I started to have some blood in my urine, then, it followed by pain when I urined each time. That night, the blood in the urine was getting heavier till the early morning, it turned into dark red. I was freaked out and did not know what to do. I then took some pictures of it.

I called the GP for appointment in the morning, I went in for urinalysis, but the urine was not showing anything issue even bacteria. The urine was pure clear, the doc asked me to go home and pay more attention to it. I did not understand it, I then showed him the pictures I took, he was shocked, and told me definitely need further investigation.

I came back and started dialing urologists insistute of Michigan, and asked them to get me in ASAP to any board certified urologist. I was lucky to get in sooner appointment at the next day. The ultrasound came back with a mass detected at my right side, and I went through ctsan. Cts scan has then confirmed that it was a solid mass about 6cm. The doc told me and my husband that it was 85 percent cancer. I do not believe what I heard, my response was what was the next step.

We then went for 2nd opinion, the answer was obvious. We then agreed to go with surgery. The mass was located close to the hilum, the doc told us it will be better to remove the whole kidney due to the mass was at the central location, this will also eliminate any reoccurrence if I go with partial removal. Therefore, everything moving so fast, in feb 22, I was in the surgery for laposcopic radical nephrectomy .

Now, I am at the recovery phase. The whole experience was scarring but God has given us lots of peace and strengths to go through every single step of our lives. We Thank the Lord we discovered it at the early stage and the cancer was confined in one kidney but no other place else.

My advice here is never take thing for granted, go for a check out and follow your infernal voice if you feel something is not right in your body. For my case, if I ignore my symptom, since it went away after one night, and my GP told me it was cleared,i will never find out what was exactly went wrong.

May the Lord keeps everyone here with a good health. Hope this helps.

SeanT
Posts: 3
Joined: Mar 2012

I am fairly new to the cancer scene and have had to learn a heck of alot in a short amount of time. I am a 46 year old married man in Calgary Canada who has a 15 year old son and a 10 year old heating and air-conditioning business.

Back in October of 2011, I began to notice that I was favoring my right leg and that it hurt when I walked. When the condition didn't get any better after a few weeks and I had to start rely using crutches to get around, I started going to physio therapy as I was convinced it was related to a sciatic nerve issue I have always had. Physio did help a little, but only in small doses and I had only gone for my three sessions when on the morning of December 15, 2011, my crutch slipped slightly on ice and I felt and hear a large CRACK sound from my leg. I didn"t fall and there was no pain except when I tried to move. Eventually my wife and son called in EMS who promptly drugged me up and took me to the hospital with a "possible dislocated hip". I spent a drug induced morning and afternoon undergoing scans and xrays - a doctor then came in and told me that I had indeed fractured my right hip. He went on to say that since it was extremely rare for a man ofd my age to do that WITHOUT falling, they wanted to do more tests to see why it occurred. I then went for a CT scan and later that night, a doctor awoke me in the hopsital and told me the news that changed my life......the cause of my hip injury was a small cyst that had weakened the ball joint of my hip so much, it snapped when I slipped. The CT scan confirmed that I had a 9.5 cm tumor on my left kidney - further tests revealed that the cyst was indeed cancerous and I was diagnosed a Stage 4 renal kidney cancer victim. Of course, it was a total shock...I cried and cried over it for a week or two. I underwent hip replacement surgery on December 18, 2011 and immediately went into rehab mode for that. My oncologist told me that I was extremely lucky in that NO other tumors or signs of cancer were found anywhere else in my body. He recommended that the entire kidney and surrounding lymph nodes be removed, a procedure I underwent on February 8th, 2012. We just got the pathology report back and it showed no evidence of cancer in any of the surrounding lymph nodes, something both doctors couldn't believe and are extremely optomistic about. So, here I sit, still trying to slowly heal from both procedures....the kidney removal was alot bigger surgery than I thought. I am recovering slowly but it still feels like I took a baseball bat to the gut - I pray that will eventually go away. My next step is a CT scan on April 17, 2012 at which time they will continue to monitor me for further cysts or tumors. Until that point, my oncologist says there is no need for any drugs. He has told me I have a 30 - 40% chance of cancer never coming back again and that, in cases like mine, that is an extremely lucky position to be in. My wife and son have been great and have kept me strong and able to accept what has happened to me. No longer do I question WHY this happened to me.......I treat it as something I have to take care of just like painting the house or taking out the garbage. I refuse to let cancer rule my life - I cant worry about the unknown, so why not try and enjoy life while I can. It has taken a few months but I am truly at a point in my life where I can focus on what is important and what is in front of me........something I think all of us take for granted at times in our busy lives. I have always lived my life doing what I wanted to do .... and I can truly say that I am NOT afraid of dying, but I AM afraid of NOT LIVING. I owe it to myself, my friends and family, as well as though of you who are suffering from cancer or know someone who is, to not take life for granted and to show cancer it may cause me to bend but it wlll never break me. I hope that any of you who read this and are inspired will share your stories with me - I would love to hear from you. Peace , Love and Strength to all of you.

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

That's one of the best forum joining messages I've ever seen.

Welcome Sean and congratulations on your successes both in coping with disease and recovery and in "getting it". Even with the highest intelligence it can be difficult to get to the point you have. You've made the most important discoveries and you've expressed them very clearly:
"No longer do I question WHY this happened to me" and "I am NOT afraid of dying, but I AM afraid of NOT LIVING. I owe it to myself, my friends and family."
This is so often very hard won insight. There is a very poignant posting on the Sarcoma forum where the poster said with feeling:
"I think I lost a lot of myself because I let the cancer define who I was, but cancer is just a diagnosis, not a death sentence! Don't let it beat you, find so mething you love and hang on to it! Don't let it define who you are!"
You're a valuable addition to the team here - thanks for joining us!

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Great story of stength, determination, and awakening. I'll be thinking of you on the 17th. Thank you for sharing; you are inspirational.

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

Hi Sean,

That's quite an introduction, spend a little time on the various threads here and you will learn much about this group and, more importantly, about RCC. It sounds like you are maintaining a positive attitude and approach to the battle, that is one of the most important aspects of the fight. There are survivors here who's original prognosis was far worse than yours so try not to worry about the odds. "IF" it does come back there are effective treatment options available that did not exist a short time ago and there are more in the works, we all pray that a cure is on the horizon. Keep us posted.

Good luck and Godspeed,

Gary

PK_Chicago
Posts: 29
Joined: Mar 2012

My 14.5 EVCRCC mass was found during a CT scan looking at my colon. I had no symptoms of any kind related to the mass. I had it removed in January - along with a resection of my colon. It was my first week back a work this week.

A pretty big shocker!!!

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

PK, that was a pretty big tumour to be asymptomatic and that was a lot of surgery. However, you may have seen this 2011 report of two cases in India, where the outcome was very encouraging - the Abstract says this:

"Chromophobe renal cell carcinoma is a relatively uncommon variant of renal cell carcinoma. Eosinophilic variant of chromophobe renal cell carcinoma (EVCRCC) is still less frequent and is composed predominantly of small to medium-sized cells with abundant granular eosinophilic cytoplasm. We report two cases of EVCRCC, with one having a rare association of right atrial myxoma. We present these cases, due to the rarity of EVCRCC and an unusual association of right atrial myxoma in one of them. Both patients recovered well after surgery, with no recurrence or metastasis after 2 years of follow-up."

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

My only sypmtom was blood in urine, called dr on Thursday and was in on Monday, sent for kidney scan, perhaps kidney stones, only to find that was not the case. Ultrasound found suspicious mass in right kidney. Dr said 90% sure is was cancer. Devastating to hear. CT scan confirmed 11cm tumor on/within right kidney Feb, 2, 2012, open radical nephrectomy Feb 24, 2012. Sugery went well, no lymph nodes involved and CT shows no metastisis anywhere else. But they did say there were microscopic cells in the renal vein that was removed. I am having a tough time understanding how to treat a microscopic cell or cells? 1st oncologist offers 3 options, do nothing, clinical trial or treat it, but I still dont know what they will treat? 2nd opinion today....how do i know if i am asking the right questions? any advice? Anyone else had the pathology report state microscopic cells? So much to learn ! So much to live for, like all of you, 51 and want 50 more ! Thank you !

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