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Rebirth Day
My birthday was two days ago. My re-birthday is today - the one year anniversary since my nephrectomy. There were some complications (a clipped artery), and a four-day stint in ICU. I have extra scars (from the laproscopic start and the opening me up to fix my artery finish). There's what I call my 'navel shelf'...which a…
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Been a while..
Sorry to see so much lost content! I know it's been a while since I posted... Last scans show 3 spots in my lungs. Two in right, one in left. Onc scheduled repeat scans and one "spot" resolved itself?? They, however, want to biopsy the one in the left lung. I have been spending a lot of my time on smart patients but I…
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Need advice... Doctor recommend yearly scan
I am 40 year old DX in May 2018 with a tumor4.6 cm, well contained, no spread, stage 1b tumor, grade 4. Partial nephrectomy, Clear cell with Sarcomatoid and Necrosis features. I am currently see Dr.Randall at UCSD- Koman Family Outpatient Pavilion. August 2018, my 3 month post surgery CT scan is NED. Today I went to see my…
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Exercise Post Surgery
I am about 2.5 months post surgery and have been feeling great. I am wanting to begin working out and exercising again as I just had a baby before my surgery. I recently tried to do some abdominal exercises and noticed that my incisions are actually hurting from the inside. Is this normal? And if so, should I not be…
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Confused about post Surgery Follow-ups
So I know things can be handled differently dependent on your treatment center and your individual doctor. I am being treated at Memorial Sloan Kettering and I have a urological cancer surgeon caring for me. In our meeting post-surgery he suggested we would put together a scan schedule for 5 years, a combination of…
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I hate it
I hate when we lose people from here. It's funny how we are really just a bunch of strangers with an odd common thread. But, it's funny what a weird feeling it gives me when we lose someone. Fox yes, but others as well. It's never easy. I know we will lose more, this is not a winning game. I suspect one day it will be me.…
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NED
I just visited my oncologist and he told me that there no evidence of disease (NED) I will visit him again in 6 months... Feeling very relieved.
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Travel
So I had a trip booked for 2/15 to go to Puerto Rico with my family to visit friends that we haven’t see. Since the hurricane. Little did I know when I booked that I’d be having a partial nephrectomy on 1/15. I stand to lose a good amount of money if I cancel, which was what I intended to do until my doc reassured me that…
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EGFR
Hey all, I was just wondering what yours (and what's considered normal) EGFR and Creatinine levels following a radical nephrectomy? Thank you!
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No evidence of metastatic disease vs NED ??
I got the call and the nurse said that my scans were back and that there was No Evidence of Metastatic disease. She didnt say No evidence of disease. I trying to understand the difference. Should I be concerned. I didnt think to ask her the difference. I had a partial hysterctomy in 2016 because of heavy bleeding. I still…
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New here saying hi
Hello, New here and wanted to say hello. My story is in my "About Me" page under the expressions tab, shorter version is this: 12/2016 discovered cyst on left kidney 30x22x23 cm, 01/2017 hand assisted laproscopic radical nephrectomy Pathology shows positive for HLRCC and tumor is of the Tubulocystic variety. Cancer free…
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Still fighting
Sorry for not posting for a bit. I’m still fighting back against this beast. I’ve stayed out of the hospital so that is good. I’m still on Cabo - been on the higher dose (60 mg) for about a month. The SEs are unpleasant but I’ve been toughing it out. Had scans today and I have a date with my onc at 8am tomorrow. Not sure…
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I'm here
thanks all. It is too hard to believe how sick and weak I am. Just consider me quiet for awhile as I continue to work on my rehab. I will never be the same but as long as I am safe, I am happy. Believe in yourself and work hard. New treatments are effective and tolerable. This allows concentration on training recoverable…
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Lost Content
this is terrible all that lost info messages for Abunai and his wife For Fox the new people who have lost all their details very sad
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Question about possible mets
Hey Guys, I was diagnosed with RCC back in November and the pathology report and imaging suggests it was contained and did not spread. Back in November I also had a CT then a follow MRI of my brain as I was having some symptoms that concerned me. The CT found "concern for subcentimeter right frontal and right cerebellar…
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I am anxioous
I had partial neprektomi mei 2017 rcc 3,6 cm on right kidney,first control 3 month atter surgeon was NED( september 2017). Second control ( february 2018), 9 month after sorgeon (ct scan thorax and abdoment) was NED, but discovered 3 lung nodul, as one 5 mm was benign, 3 mm beinigm too, and one again 2 mm tiny nodul as…
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Travel
So I had a trip booked for 2/15 to go to Puerto Rico with my family to visit friends that we haven’t see. Since the hurricane. Little did I know when I booked that I’d be having a partial nephrectomy on 1/15. I stand to lose a good amount of money if I cancel, which was what I intended to do until my doc reassured me that…
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Drain issue
im two weeks and three days post partial nephrectomy and I’m still draining a lot of fluid, anywhere from 40-65ml and based on tests of the fluid I am leaking urine. It seems like a long time after surgery and a little internet research tells me this shouldn’t be happening. My surgeon said it could be “weeks” but will…
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Ipilumimab
My son alerted me yesterday to the discoveries of James Allison and his Nobel Prize Award. Google his name for more information. i have ordered the book The Breakthrough written by Charles Graeber. i have learned that ipilimumab is being used to treat melanoma and is in clinical trial to treat other forms of cancer…
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no one around
It does not seem many around on the bladder discussion board. thats a shame, there are so many with bladder cancer. Thank you all for allowing me to on here to panic and to vent. I wish you all the best. I will be on the breast cancer board because that is ongoing with me and I will be at smartpatients to get help with my…
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Home
Just got back from the hospital. Robotic, small tumor and surrounding area successfully removed. Had to stay an extra day because of severe pain. I had no idea they would make six incisions - feels like I swallowed and elephant and its twin is sitting on top of me. My left side of my abdomen is super swollen too. Thank you…
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CT scan results
Any thoughts? EXAM: CT CHEST ABDOMEN AND PELVIS. INDICATION: Malignant neoplasm of left kidney. COMPARISON: CT chest abdomen pelvis 8/8/2018. CT CHEST: LUNGS AND AIRWAYS: Airways are patent. Noncalcified pulmonary nodules as follows measured on series 205 and compared to 82,018 CT chest: 2 mm middle lobe image 249 stable,…
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Catching Up
I haven't been on in months. I was logging in today to try and catch up. So sad to find out I can't catch up. I don't know what all happened since I was on. Is there any way somebody who has been keeping up can post a summary or something? There are so many people I was wanting to check on that I'm concerned with and now I…
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Hardo781 aka Donna
Hello, noticed that hardo781 (Donna) wasn't around for a long time, since summer. Hope she is doing allright... A.
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How to exercise after a Neph.
Here is one of my BO (before outage) posts. Begin by standing at a comfortable surface where you have plenty of room at each side. With a 5lb. potato bag in each hand, extend your arms straight out from your sides and hold them there as long as you can. Try to reach a full minute and then relax. Each day you will find that…
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And another Ned visit
Thank you all for your support and good thoughts and wishes. I had a visit from Uncle Ned. Love to all of you!
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Complex Kidney Cyst
I was recently diagnosed with a complex kidney cyst. It is located in the lateral region and is showing minimal vascularity. Size is 2.3 cm. The cyst is also presenting with interal septation - although the report does not specify the extent of the septation. There is no calculus or hydronephrosis. I go for an MRI this…
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36 w/renal mass & liver lesions - thoughts & advice appreciated
Hi everyone. I feel like I have no one to turn to who understands what I am going through. I have a small solid mass on my right kidney that was discovered incidentally on a CT scan in March 2017. I had an MRI and the radiologist said it could represent a renal oncocytoma, metanephric adenoma or renal cell carcinoma and…
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RCC back
After 2 years 3 months and CT scans every 3 months of being cancer free, its back! Just found out Wednsday on my birthday the 24th I now have a 12mm lesion on my liver. I have an appt with my oncologist on the 29th, she knows nothing about this as of yet, only my PCP. Any ideas of what I will be going through now? Surgery…
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normal for partial nephrectomy folks?
Hi, I just joined and i think I posted this initially on the wrong thread; sorry. :( I'm a woman, 65, who had a stage 1 tumor in my right kidney, removed via partial nephrectomy 3 1/2 years ago. Just had my annual scan and it came back clear. YAY. Question: when I looked at the accompanying urine/blood work online, it…