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New Kid in Town -First Post-
Hi everyone! I stumbled across this board on Google and decided to join. I underwent a right partial nephrectomy in July at Duke University, followed by a diagnosis of clear cell renal cell carcinoma. I'm my doctor's youngest patient to date at 30 years old. My mass was an incidental find on a CT, 3 weeks after having my…
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How about a thread for people not recently diagnosed?
This forum has helped so many new people learn information, make decisions, and cope because of the support of others. Anyone who has been here has benefit from this network. Newer people have reached out to each other and found they aren't alone. But I was thinking, there are a ton of us at stage 3 or 4, who have been…
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Renal Cell Cancer Survivor and Votrient Side Affects
I am an USAF retiree. I retired from active duty in 1990. During the Christmas Holidays of 2007, the onset of RCC or Kidney Cancer occurred out of the clear blue sky. My 'About Me" page has more information about this. Since the day of diagnosis, I have survived RCC three times. I am now on an 800mg Votrient regiment daily…
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Burst blood vessel in the eye (subjunctival hemorrhage)
I've been getting these a lot since my kidney was removed. Even more in the past 6 months. May be random, and nothing to do with my lack of kidney and adrenal gland or cancer, but I was wondering if anybody else has experienced these? The most recent one has lasted almost 2 weeks and was really quite awful. It actually…
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We have another NED!
I got the all clear! I cannot believe the relief I felt. The doctor told me we can move to scans once a year. I quietly said no. He said "no problem". I am not even 18 months out of surgery - and stage 3. He was great though. I had a few questions written out and I could barely stammer the words. I finally got one question…
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Back to Surgery!
Hi Everyone, I had scans on March 27 and CT scan for neck, lungs, and pelvic came back with no change and everything was great. But MRI for the brain, not so good, I have another tumor, so back to surgery I go. I will let everyone know when I get my surgery date, should be within the next 2 weeks. Things are not to bad, I…
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Metastatic renal cell carcinoma. Mets in lung
Hello friends- M 68 Years old and new to this forum, I was diagnosed with stage four disease in jan 2014, whic revealed mets rcc in left kidney and mets in lung. Undergone nephrectomy in feb 2014 was is hospital for week. In march i started 25 Mg sutent dose. Side effects were mild and bearable. Did my 1st pet scan post…
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Scans Brought Forward/headaches
Was due to have scans in 2 months time for checks of 2 x 5mm nods on my right lung but met my Oncologist for the first time last week who has advised I have scans next week. Confirmation of growth and still 2 nods means possible resection and no meds at this time. If there are more nodes, depending how many still possible…
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Boston Marathon
I just got back from running the Boston Marathon on Monday -- an amazing experience. It's been a little over 10 months from my partial neph that was done in May 2014. Although I fell short of my goal time I was only 3 minutes off qualifying to do it again next year. It was my 2nd marathon since the surgery and I finally…
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They can't do my scan....
Ok...this is the longest I have been between scans since my initial Met. Since my last scan, I had some other medical issues which resulted in a pacemaker. I called up immediately, and was told that they just need the paperwork on the device (MRI complient). Well, now, they told me that they made a mistake....and I need to…
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Just Diagnosed and Very Scared
Hi Everyone, You all seem like a wonderful group of people and I feel blessed to have found this site. I have been reading through this site and it has given me courage. I was recently diagnosed with kidney cancer two days ago. I am 44 years old mom with two young children. I am very scared. My primary care doctor told me…
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Anyone have RCC reappear in lungs?
Hi ... my husband of 25 years is now 49 and had a 10cm tumor (stage III) along with his left kidney removed 3 years ago. He then took part in a clinical trial where he took 2 pills a day for 12 months. The study based out of Loyola Hospital in Chicago will never tell if he was given a placebo or everolimus. We are 99% sure…
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2nd post Partial Neph scan tomorrow
I'm not too nervous, but admittedly a little anxious. Surgery was 18 months ago, only had one followup last May. With my history, it should be more frequent, but Uro thinks I'm done after this one. I'll have the results in the mail before I see him in May too. Heres hoping it's all clear!
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Scanxiety is running high this week!
My last several sets of scans were remarkably devoid of anxiety. I felt pretty good going in, and everything was good. Now, we have extened the duration (5 months since the last scan). I have convinced myself that my new back pain is going to be bad news....it is a sharp pain right in the spine, about even with my…
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Resuming training after partial neph surgery
Hello fellow partial nephs, As of today, I hit the 1 month mark since surgery. Like many of you, I was pretty active prior to surgery: mostly a road biker, but I run a bit (not very fast) and swim (even worse). Couple tri's over past year... . My question is about how you have handled recovery with respect to re-engaging…
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Had radical nephrectomy but having issues of pain and feel fluid burst in abdomen
I am new to this site. I was diagnosed with clear-cell renal carcinoma. My tumor was found accidentally. I had my gallbladder out the year before and was still having issues with that area .my doctor did a scan to see if there was Stones in the duct . Having a MRI found a mass on the left kidney 8.5cm stage III. They…
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Possible Kidney Cancer 23 years after surviving Ovarian Cancer
Hello everyone, I followed this forum a few years back after my daughter was diagnosed with Osteosarcoma. She battled the monster for over 2 years but she lost the fight 3 years ago. I came back here to share my story and to try maybe to find some sense out of this whole thing! I had a couple of pap smears coming back…
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Musicians: a dumb idea
So I play guitar, harmonica, and used to be able to get by on mandolin and tenor banjo. Fox plays guitar Thax plays mandolin. There must be a way (Skype?) that we could put some music together. We could be Hey Hey we're the Lumpies
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RCC and VHL
Im a new member! Hello. Im 41 years old and was diagnosed with RCC at age 32. 4cm clear cell carcinoma stage I confined to kidney. Right side partial nephrectomy. All has been clear for the last 10 years. Recently had a run in with a kidney stone and had a ultrasound which said I had renal cyst 4.5 cm. A 6cm FNH on my…
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Home and Recovering After Second Surgery
Hi Everyone, A week ago I underwent my second open surgery which finally resulted in the total removal of my right kidney. Still waiting on pathology report but pretty certain that the hard golf-ball sized tumor was indeed malignant. The surgery was a couple of hours longer because of previous surgery scar tissue…
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39 months NED
Hi All, I don't come here often anymore but this place sure was/is a blessing to me back in December of 2011 when I received my diagnosis. It is awesome to see many people still here from that time but sad to see so many new faces. I just wanted to report good news for my old friends and give the newbies some positive…
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6 month CT results: ...
NED oh yeah!!! All clear, still have this small 3mm nodule on lung but it hasn't grown since last scan so... Really happy with the results!! Next step, genetic test in a couple of weeks and next Ct in 6 months.
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UPDATE: NED! Scan day on Wednesday, 18 months post op Stage 3 chromophobe
Well, it looks like my husband is up next in this streak of scans. . . Wednesday. I think right now I have the opposite of scanxiety. Bizarre calmness. I don't think I would be able to go through it without the support of you all here. It has been a very long 18 months and our new normal of living between the scans as I…
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Nervous, scared - should not have read my reports
Tomorrow is my follow-up wtih Dr. Molina. I'm praying for a positive report, but after reading my old radiology reports I'm not so sure. The biggest liver leson did grow from the time of my CT scan to the follow-up MRI. From what I understand growth is not good. In addtion, the radilogy recommendation is metastasis must be…
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Stage 3 question
I have noticed that most of the people here are stage 1, 2 or 4. I believe that there really aren't that many stage 3's out there - am I right? Maybe it is my scanxiety (scan coming up on Thursday) but I really am just wondering how many stage 3's out there have remained stage 3? Also I have noticed that treatments have…
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My doctor is retiring
Just got a letter from my oncologist, Geoffrey Weiss at UVa, saying he is retiring July 1. They will send a follow up letter telling me who my new doc will be I guess. I did meet one other doc when I was in for IL-2 so maybe that will be him. I wonder if maybe Dr Weiss's reluctance to go for Nivolumab off label had…
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Question - frequency of scans vs. Xray
My Oncologist is now ordering just 1 scan/ year. Xray & bloodwork only at 6 months. She says at the 2.5 -3 year mark with NED that this is fine. Thoughts? I've been getting 2-3 scans/ year and the 1st year I had 4. I had a 5.0cm RCC Stage 1 / Grade 1 - My surgery was 07/2012.
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My Wish
My Wish I wish there was a cure for cancer All cancer Not one over the other Who gets more money than the other- Just cure cancer! No more tests CT scans, MRI's, Bone scans, Pet scans, mammograms, Colonoscopy, endoscopy, which one works better? No more needles No more contrast, or without Just cure cancer All cancer No…
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ct scan results
Well results are in. Plueral-based metastasis in right upper lobe reduced slightly in maximal dimension from 22mm to 19mm. Left upper lobe metastasis reduced in size from 8mm to 5mm. Multiple other pulmonary metastases show similar reduction in size. Medially at right costophrenic sulcus a metastasis is again noted. This…
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I've been peeking in...
Hi everybody! I've been peekin in very often since my partial Nepherectomy on September 30th. Okay, where to start. I do speak english and do a lot of reading in english as well, but writing about feelings and so on is much more complicated for me to write about. I want to say I basically believe in the good of people but…