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If Fox can tell a story, so can I...

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

My story begins in 2003.  My father was diagnosed with bi-lateral kidney cancer.  Since my grandfather had died of kidney cancer, my father (who is a physician) suggested that I get screened.  I mentioned it to my Doctor, but he told me kidney cancer is an environmental disease, and thought it was not nessisary.  This repeased two or three times.

Fast forward to 2012...I was 48...I started to get night sweats and losing weight...lost 35 lbs without trying.  In April, my doctor told me not to worry, I will be healthier for the weight loss.  Then, on April 30th, in the evening, I had nothing to do.  My baseball team (the Nationals) were off, coming back from a road trip where they called up a new rookie (Bryce Harper).  With nothing to do, I did something stupid, and I ate poorly.  At about 12:03 AM on May 1, I had severe abominal pain....I went to the bathroom, and every went fuzzy...

I woke up on the bathroom floor in a pool of blood and a lot of pain...and I was blocking the door with my body.  I was taken to the hospital, where they decided I fainted, but why was unknown.  They were most interested in the abdominal pain, so they did an abdominal CT scan.  They could not find the source of the pain, but they did find a 6 cm mass on the upper pole of the right kidney.

I saw my doctor, then the urologist.  Surgery was in six weeks.  Hand assisted laproscopic radical nephrectomy.  Before the surgery, they did a chest xray and some other tests; no mets...Surgery was hard...really hard.  I developed an infection, and was in the hospital for 5 days.  Surgery was on a Tues...I remember nothing from Wed...little from Thurs.  Fri I started to feel human, and Sat my fever was down.  Sunday home.  Pathology report was good:  stage 1, clean margins...I was told not to worry about the sacomatoid differentiation.  I was told I was cured.  I needed followup in six months. (WRONG!)

Healing from surgery went smoothly for the first three weeks.  I was getting more energy each day...only problem was the wond was bleading a little.  Then at about 4 weeks, when I had planned to go to work for about 1 hour, I had dressed, and I noticed blood at the incision...so no work for me.  Then next day, the pain level got much worse, and I started a feaver...101, then 102.  Surgeon examined me, and said he did not see a problem, I probably had an independent virus.  Two days later, the  5"wound opened and was clearly inffected.  I went to the ER. They were not concerned, but did a culture, and put me on antibiotics.  

This problem resulted in another 5 weeks off work....I had to go to wound care specialists, and learned how to handle to would: something called inside out packing.  It healed.  But, the pain remains today, 2 1/2 years post surgery.  And this had nothing to do with cancer...just surgery.

Fast foward...I was curious about genetics and kidney cancer...and reached out to an expert at the National Institutes for Health.  They brought my fahter and I in for an evaluation.  They did a series of tests, blood work, and genetic testing.  The scans showed a clean abdomen, but a "neoplasm" in my lung.  In all probability it was a met.  NIH said they would treat me;  they did more scans:  PET & brain MRI.  PET showed the mass was metabolically active; MRI showed I had a brain. Boipsy showed it was cancer, but it was not clear if it was RCC or a primary lung -- if it was RCC, then it is stage 4. The Dr also wanted me to have a nuclear stress test before the surgery..That showed heart issues, but I could wait to after surgery. 

Feb 5, 2013, the mass is removed.  NIH is an amazing facility.  Truly a crown jewel in the Government.  I was really impressed by the care there.  The mass was a met of the RCC.  So, I now had advanced kidney cancer, inspite of the initial path report for the primary tumor.  I was told that the prognosis was not good, but at the moment there was no known active cancer.  At three months and six months, nothing.  The latter surprised me, as I had not been feeing well, with crushing chest pain.  I went to my primary care physician (for the last time); he decided it was GERD.  Two days later, we found out it was heart disease.  Cardiologist put a stent in, and am good.  But I fired the primary care doctor.

NIH is a federally funded facility.  There budget was hit by sequestration and by the government shut down.  In Jan 2014, they cut me out of the study I was in -- budget because of sequestations, and they wanted to use there resources for the sicker people -- I was NED.  I found my new oncologist, Dr. Han Hammers at Hopkins.  He has done nothing yet.  I am approaching two years of NED.  He tells me that is a big deal:  with a sarcomitoid tumor, if it has not come back in two years, it probably will not come back; but they will continue to scan.

Emotionally, my makeup has changed.  I used to be worried about everything.  When I was told I had stage 4 cancer, I came to realize that my time on this planet is limited.  I should enjoy today, and accept tomorrow.  I am actually much happier with this new-found attitude.  I think theropy would have been better than cancer, but...

I am working full time, enjoying my work.  I am in constant moderate pain.  I can live like this.

Now, other lession is: question your Doctors.  Sarcomitoid is not fine.  I probably was not Stage 1, but since they had only done a chest x-ray, they had not seen the met.

 

 

 

 

 

 

 

 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

dhs1963, I am confused by your story.  In the begining, you say "Pathology report was good:  stage 1, clean margins."  Then later, you say, "When I was told I had stage 4 cancer,"

 

Who told you that you had stage 1, and then who later told you that you had stage 4?  Did NIH determine you had stage 4 after they removed the MET in your lung?

What is NED?  Sorry for the questions, but I am guessing your first diagnosis was way off, and by what happened with your wound,  you did not receive very good care.  Sorry for your troubles.

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

The urologist told be stage 1...but with a distant met, it was stage 4.  He did not know about it.  He confused the tumor staging (T1b) with cancer staging.

NED is no evidence of disease.

By having a met in the lung, it was by definition, stage 4.  Any distant mets means stage 4.  But, with a solitary distant met, I had stage 4 light.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

dhs1963, did you get a chest x-ray?

I am not one to worry, but after reading your story, I am concerned.  I had my partial nephrectomy surgery July 10.  The biopsy report after surgery was "Cancer was clear cell carcinoma.  On a 1-4 grade scale,  it was a grade 2.  This is the most common and least aggressive type. 2.9 cm  size.  No invasion to surrounding tissue or vein.  Dr.  also removed a peritoneal nodule."

I also had a chest x-ray 1 month before my surgery.  Results said, "
LUNGS:                            Clear.
 
PLEURA:                          No effusion.
 
CARDIOMEDIASTINUM:    Unremarkable.
 
OTHER:                            None.
 
IMPRESSION:
1.  No acute cardiopulmonary disease."

I understand that none of us (even the stage 1 folks with grade 1-2 tumors) are EVER in the clear.  I go back for my first post surgery scans July 5.  I'll ask my doc what the chances of recurrence are.

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

At 2.9 cm, yours was small.  Mine was 6.0, RCC grade 4 with sarcomitoid differentiation,

 

Your chances of recurrance are small, like less than 5%.  

 

I would push for a chest CT, at least initially, just to be safe; also 1 year seems to me to be a long time for the scans.  But, that is just my opinion.

 

FWIW, you are probably in the NED camp.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

I typed the wrong follow up date.  It is January 5.  I realize I may be a lucky one, but I don't want to do or say anything to tempt fate.  It's been a hell of a year with my office being destroyed by a fire in January and the cancer diagnosis in April/May and the surgery in July.  I feel like this year epitomizes the saying "that which doesn't kill me will make me stronger."   I hope my run of bad luck turns into good luck, and the way I look at it, my early diagnosis kind of was/is good luck because they got it early.  One of the reasons I don't post much is I feel very lucky and I don't know how to answer questions about mets (except the NY Mets), and issues that come up with stage IV, and the various therapies.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

needs to be about cancer drugs. You have had plenty to express regarding staying focused during a string of bad luck. That is more similar in most of us than non similar. Alot of support is here to relate to coping skills. Give and take.  Sometimes it helps to hear the story about the guy with no shoes.

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

Clear and unremarkable are good words to see on a scan. you don't have any distant metastasis. DHS is saying he had a small grade 1 tumor but also had metastasis to another part if the body. ANY distant metastisis automatically make DHS stage IV.  Your X-Ray indicates all clear.

APny's picture
APny
Posts: 1972
Joined: Mar 2014

Yes, until a met shows up it's very possible to be classified as stage 1 because as far as they can tell, the tumor was contained to the kidney and under a certain size. But as soon as a met shows up somewhere distant, such as the lung, you're automatically a stage 4. That's why I'm cautiously optimistic that at 3.4 cm they "got it all" but certainly not foolish enough to take for granted that some rogue cells didn't take up residence elsewhere and are just waiting to pounce. Unfortunately that's a possiblity even for us stage 1 people. I do understand that the data for recurrance and mets seem to be in our favor but then if you consider that kidney cancer is only 2 percent of all cancers, well, the odds were not in our favor there, that's for sure.

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

There is no certainty when it comes to cancer is there, I started out at Stage 1 Grade 3, March of 2013 and by the December 2013 scan, I was Stage 4, big shock!

Djinnie

 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

APny, when you went for your scans recently, did Dr. Rock Star order a chest x-ray or a CT scan?

Srashedb
Posts: 482
Joined: Dec 2013

no, he is saying stage 1, grade 4 initially and with lung met, it is stage 4, grade 4.

Sarah

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

I'm sorry they didn't take care of you. And wish things go well from now on. One question, what is saomitoid ? Is it how aggressive the tomur cells are? Is it written in pathology report?

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

Sarcomitoid:  describes the morphology of the cancer cell.  Sarcomitoid morphology is much more aggressive.

Srashedb
Posts: 482
Joined: Dec 2013

yes, it is aggressive and yes, it is in the pathology report with an approximate percentage of the sarcomadoid.

those who have that might best describe the percentage part.

Sarah

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

I checked my pathology report for 1000th time:) and this time for "sarcomatoid" word. It wasn't in the report at all. Is it good? I have another question too. In the primary pathology report they gave me three days post surgery it was written clear margin. But in the final report this line was omited and a new line was added," negative for extension to renal sinus.

 Does it mean the margin wasn't clear? Something to worry about?Thank you

 

 

angec's picture
angec
Posts: 924
Joined: Mar 2012

They just worded the report different, clear margins or no invasion is the same thought. I wouldn't worry about it. And yes, no mention of sarcomatoid is good!

 

DHS, just curious. How is your dad doing with the bilateral cancer? Also, what did they tell you as far as genetics go? The doc told my family that kidney cancer wasn't heritary and we had nothing to worry about. I knew he was wrong, since he didn't even know what type she had.  What are people normally advised to do when a parent has kidney cancer? Glad you are over two years NED! Keep it up!

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Thanks for sharing your story. Phred also had Rcc clear cell with extensive sarcomatoid change and rhabdoid morphology. They never said a percentage in the report but sounds like the part that was extending into his adrenal gland also had that morphology. Some of your pains and suspected Gerd problems sound so like  Phreds. He has a cardiac review on Tuesday. Take care Melissa.

Karen0074
Posts: 64
Joined: Apr 2014

It does scare me that you can be diagnosed stage 1 and then 6 months later staight to stage 4 by a met appearing. You have handled this so well and love your positivity. since my diagnosis I have stopped worrying about things that I can do nothing about and am making good plans for the future xx

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

I've felt that Stage 4 fear.  Not diagnosed yet, but the possibility is real.  I have 3 cancers.  I have a tumor in my sternum that came back as "carcinoma, unknown origin".  Is it thyroid, kidney or breast?  Until my idiot dr's get their stuff together I won't know.  But I refuse to think it's anything other than thyroid.  The tumor marker they ran came in as CK-19.  Not too clear either.

 

I think if we allow ourselves to believe early stage cancer has spread, it will drive you insane.  Not a fun way to live at all.

jason.2835
Posts: 337
Joined: Nov 2014

I think you tell an incredible story.  Apart from being a Nationals fan.  (Phillies fan! haha, just kidding).  Though the way the Phils have been playing the last couple years, i may have to dust off my 2008 Werth jersey and tape a "Nationals" logo over the Phillies' logo...  

I am always shocked to hear stories of doctors missing some of the most common sense things... Despite the relatively small size of your kidney tumor, it was obvious you were having a number of other symptoms that would indicate there was some other major issues going on... "Don't worry" about unintentional weight loss?  Anyone desperately trying to lose weight will tell you that it's hard to lose weight... if you're losing weight unintentionally, there's a problem.  

I'm not a doctor, but when I was initially diagnosed I gobbled down every piece of information I could find.  My doctors have been very "common sense" regarding my situation, thank God, but I'm pretty sure they wouldn't be so "la-dee-dah" about an infection in the incision site.  Was yours an open procedure?  It sounds like you have one long incision...  Anyways, I mean there's just so many points in medical care where docs can be lazy, and it sounds like it happened a few times in your case.  It's unfortunate that you have to live in even moderate pain.  

It's funny but my tumor was found after some undiagnosed (still) abdominal pains as well... initially we think it has something to do with my gallbladder, but after the abdominal ultrasound, that's when we found the tumor on the left kidney.  I thank the mystery gastrointestinal ailment every day for saving my life.     

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