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I got my pathology report, not too bad
Only way it could have been better is if the tumor was benign, alas it wasn't. Final determination was RCC clear cell pT1aNxMx, G2. So not all that bad, pathologist did comment that the tumor came within 0.1 mm of parenchymal margins in several foci. Guess that means the doc cut it real close huh? So now all that they want…
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Social Security disability
There has been limited discussion about this in the past. I know Iceman has a different take on this. But,... I want to make sure that people know that kidney cancer is considered a disability. As such, you can get monthly income which is at a higher rate than just social security normal payments. (it is for me anyway.)…
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It wasn't Cancer
I wanted to share this to try and relate this perspective.. At one time or another (or constantly) we all fear the worst and that the Cancer will do us in. Sadly that happens.. but I just got an e-mail from a pal's wife... Yup my pal passed away yesterday... geeesh. He did not have Cancer... In fact I had recently talked…
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Tests lead to more tests
The good news is that I'm still here and it's been nealy 8 years since the first Dx. But if you've been around after a Dx of Stage IV RCC, you know there are lots of tests done to reach this point. In mid-January, I had a regular (3 and/or) 6 month CT; but an 8x12mm polyp was found in my stomach. This led to my PC…
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Links for new members.....
Staging Treatment Etc. http://www.patientresource.com/RCC_Overview.aspx http://www.patientresource.com/RCC_Diagnosing.aspx http://www.patientresource.com/RCC_Staging.aspx
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concern about metastasis to rib
Hi this is my first post here so I`'ll give my history first. Diagnosed in June 2013 with probable rcc in left kidney 7cm and possible node involvement. Radical nephrectomy in Aug. Surgeon did not remove any nodes or adrenal gland. Tumor was contained and shrunk to 6 cm after surgery. T1bnxmx. I 've had a good recovery and…
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Just more bad news!
I have to go for fresh scans and a round of testing over the next few weeks. After suffering from an incessant cough for over a week I was sent for an X-ray. The result of which shows a new mass in my left lung. I was devasted, I am at a loss, I really don't understand how these growths are manifesting at such speed. From…
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Afinitor success?
Been on Afinitor since 13 Dec 2013. First 8 week CT check show halting of spread, with slight tumor shrinkage. Return on April 2nd for next CT check. Reason for Afinitor was reoccurred cancer at origional tumor site after partial done back in May 1013, together with metastasis up my side, in a cluster, as well as met on…
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Blkjak update
Hi everyone! I hope you are all doing well! We think about all of you a lot, but took a bit of a break from the forum. I think I last updated after the doctors tried treating for testicular cancer and it didn't work. Blkjak remains a bit of a mystery since his kidney tumor is so small yet has spread so much. They then…
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Finally found source of hip pain
After seeing bone onc and mri and bone scan and no cancer found I was so happy, yet I still have this really bad pain in hip. When I seen my regular onc this week she also was excited to see i had no cancer and said how is your pain? I told her still really bad and she said didnt the bone onc tell you what was wrong with…
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Best Birthday Present Ever
Hi, I just got a call from my doctor's office and my tumor was 100% benign. I plan on sticking around because I really care about all of you and want to continue to offer my support and prayers when needed. You guys were there for me when I suffered a month of sleepless nights and mounds of anxiety. XXXOOO Diana
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surgery done on 2/12/14
Well, I went in for my left kidney robotic laparoscopic nephrectomy. It took the whole procedure with us having to be there at 10am. I Wasn't back to room infill almost 7pm. They got everything and they only had to have maybe 1/4 or more of more of kidney now it's the hard part: healing omg does it hurt. The gas has…
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Hello, Thanks for this board!
Hi Everyone, I have been reading for a while. I thank you all for sharing so much information. It has been so helpful and given me hope. My name is Catherine. I am 58 and I had a radical nephrectomy in May of 2013. At surgery, I was told stage 2 but after removing a 12 cm tumor and finding a met in each lung I learned it…
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Pre Op
Pre op done! Surgery Monday morning. Surprisingly I'm not nervous about it but I will be glad when it is over Cindy
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Update & slight rant
in the days/months after my surgery I was here a great deal. I will never forget the support that I have received from everyone. It's been 7 months since my partial nephrectomy in which I found our that I had RCC. Everyone was so warm and welcoming and responsive to my questions. I went back back to work before I should…
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Victory over the C word!
Hi all! I haven't posted for quite some time but I have been lurking now and then to keep up with the news on the pros like Fox (congrats on finishing and surviving the IL2!) and so many others of you with much tougher cases than mine (I was T1b grade 2). Partly I have stayed away (well except for the lurking) because I…
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struggling
Hi. hope this is ok to share. Ive been reeding this forum since being diagnosed just over 2 years ago. Three years ago had a bowel resection and because i still had problems they did ct scan and found tumor in kidney. They found that the tumor was allready there 2 years previosly but it was missed. Had an open nephrectomy…
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Scanxiety. Typical I guess.
Next Wednesday I go in for my full scans. It's the one year date for the Everest trial I'm on. So I take my last dose of Affinitor on Tuesday the 18th. Hard to believe a year has gone by already. I'm really anxious. I wanted to put together a party to celebrate finishing 1 year of this drug trial, but I didn't do it. I…
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ALL CLEAR
my husband's scans, bone and CTs along with his MRI were all good; looks like both laminectomy and cyber radiated met are either shrinking or healing (the latter obviously the laminectomy) So, another 3 month reprieve and now we are in maternity ward awaiting the birth of our second grandchild. Sarah
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NED no more :(
Well I just returned from a trip to MD Anderson. I had been having trouble getting my insurance to approve my 6 month scans, so I went to see an oncologist there that specializes in the rare forms of kidney cancer (mine is unclassified) in order to find out my chances of recurrence and how often I really needed scans. He…
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IL 21 + anti PD 1 combo trial
Hello All! This is a trial that I know is currently available at Yale Univ (where my dad will be going) though I don't know yet if we will be offered it or if he will qualify of course, but I am looking for some background info so I can be prepared. First I've read a ton about IL-2, but barely anything on IL-21... does…
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living with nephrostomy tubes
Hi! New to this board, but unfortunately, long time "lurker" and occassional contributor to the breast cancer board, starting 6 years ago. Being treated for BC mets to the adrenal since last April. Last scan showed hydronephrosis in kidney on other side. Ended up this week getting a nephrostomy tube. Not that hard to…
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survey of nivolumab and other pd-1/pd-L1 drug trialists
Hi, I am a caregiver/advocate for my mother who has stage IV, grade IV, clear cell renal cell carcinoma with rhabdoid features and necrosis. Post nephrectomy she was given sunitinib which resulted in stable disease for several months. The mets are confined to her lungs and are growing very rapidly. She was recently…
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Genetics, chromophobe RCC and children
I was wondering if anyone that is diagnosed with this type of RCC (non-clear cell, chromophobe) has ever met with a geneticist out of concern for their children? I'm not sure we got the best advice from our oncologist based on what we heard yesterday at a conference (brief reference was made that chromophobe may be a…
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I was out partying tonight!
HI All, I went out for a prebirthday celebration tonight with one of my girlfriends. I saw movie (Winter's Tale), then I had dinner at The Bonefish Grill and then out for drinks with a little live music. I did lots of housework during the day, I got home at 12:30 and I feel great!!!! I'm going back to work on Monday which…
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Over & Out
Hi, the surgery is omover and the cyst is out. I don't feel too bad. They did it robotic. I feel bionic. many doctor thinks it looked benign. I need to wait for sure. Phew!
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New Doctor...learned some things...
It was early Thurs Morning...about 5:45 AM when, while driving to a neighboring metropolitin area to visit a Doctor...I was thinking...I am driving at this hour to see a Doctor...something must be wrong with me....and there is...Metastatic Kidney Cancer. For refersher, in January, I was kicked out of the Familial Kidney…
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Nearly a week since my surgery already?
A little update on how things have been progressing for this newbie. As far as how I am feeling I can say I am still quite sore. My innards just literally feel like they are out of place. From time to time I can feel and hear things shift position in there and that's a little disconcerting. I'm suffereing from a good bit…
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32 years old newly diagnosed 2014
Hi everyone, Been lurking around since the beginning of the year. A brief timeline of my diagnosis is below. 1/3/2014: Went to family doc because of a testicle pain (thought it might be a vericocele) Doc ordered an ultrasound to see what the problem was. 1/4/2014: Had ultrasound, (no testicular issues). They check the…
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Cedars Sinai Kidney Cancer Conference yesterday (Feb 22)
My husband and I attended this yesterday in Los Angeles. We enjoyed it very much and were pleased to hear that the sessions were recorded and will ultimately be available to anyone who wishes to view them on the Kidney Cancer Association's website. I'm not sure when. You can view the list of topics covered in the…