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I am nervous
Hello, I am new here. I had an abdominal US 3mos ago and they accidentally found two cyst at the upper pole on my left kidney measuring 1.0x1.2x1.3cm and 1.0x1.2x1.4cm each. They are demonstrating internal echogenic septation. i had another one today and can’t stop worrying about it. The doctor doesnt seem fussed but I…
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One year down...
It was one year ago today that I heard the words - "you likely have kidney cancer - in each kidney." The immediate days after that were all a blur. Luckily, I found this site which brought some hope and a lot of perspective. I learned through my own research that there was a highly regarded, NCI/NIH trained urologic…
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Some positive news!
I've been on Votrient since February of this year, and just had my latest scans and follow up with the doc. No new growth or progression! I was more anxious this time around than usual - probably because of the reduced dose I was on for two weeks while on vacation. It felt like a weight lifted off of me today. My "spousal…
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Update on son-in-law
I'm happy to report that after being diagnosed about 2 1/2 years ago with Stage IV, grade 4 60% sarcomatoid RCC (13.5cm tumor) he has now been NED for four scans. He and my daughter just had their third child four months ago which is another miracle. He is not on any cancer meds (was on immunotherapy most recently). As a…
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Cancerversary....1 year scan and it's NED
It's my Cancerversary and today I had my 1 year scan (2nd since surgery). Everything is clear and my surgeon is very happy. My cancer was originally stage 3, but so far so good. Now I can relax for 6 months until the next appointment.
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Testosterone Supplement and RCC?
One of my doctors suggested doing testosterone replacement therapy. Does anybody know if this is risky as a person who has had RCC? Does anybody know if it increases the risk of recurrence? I've heard some hormones affect cancer rates/recurrence. Just not sure how to find this out. I guess I can ask my oncologist, but I'm…
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translocation rcc Ned
hi all just wanted to let folks know especially one with translocation rcc That I am NED now after 16 months. Diagnosed may 2017! Keep up the fight my friends. next Scans in feb.
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Uncle NED is here!
Just visited my Urologist for the year 2 scan report. I had been having scanxiety since the CT scan in September. So glad that it is NED and I can finally relax a bit. It is the first set of CT scan after my surgery in 2016. There will be US and Chest X-ray in 6 months, I don't want to move to the annual scan yet because…
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Ned
Just had my six months scan and it was Ned. Blessings to all who are struggling with this disease.
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To Fox
Fox: know you are either reading or having someone read to you; so, I want you to know how much I think of you and that I am sending you karma in huge doses. Sarah
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Scanxiety
Going for my 2 year CT tomorrow. Anxious and not sure what to expect. Hope all goes well. Sept 2016 partial neph right kidney stage 1A grade 2 clear cell.
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Robotic Partial Question
Hello everyone. Newly diagnosed and scheduling a robotic partial nephrectomy at Mayo Clinic in early October. My issue is that I live 9 hours from Mayo. My daughter lives about 45 minutes from there. I can either fly there then fly back or fly one way and she could drive me back 4 days after surgery. That would save me…
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FLY !
Fox Loves You!!! Karma David and family. So sorry. I do not remember much of this year. I have failed every treatment when they all used to work. My memory and comprehension have been affected by brain mets. Very forgetful. I don't have a clue to the date.... I am also down about 100 pounds. Extremely weak througout my…
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NED!
Had my first CT done after surgery in March yesterday and my PCP sent me an email to let me know it's NED! woohoo! I will be struggling with getting the right follow up. The oncologist I saw refused to do the 6 month CT and said if I wanted that to return to the Urologist. I called the Urology office who ordered it right…
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Well, it's that time of the year
Going to NY tomorrow for my 4.5 year check up. US, CT, and blood work on Thursday and meeting with onc on Friday. Please wish me luck and a nice visit from Uncle NED. I'm really nervous. Love you all, Andi xo
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To all my friends on the board
This study done between 2009 and 2012 you can imagine the huge success in the past 6 years pleas watch this video right To the very end it will help you https://youtu.be/blUI-ZzcViE
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Small bowel blockage
Just more things we have to deal with. So three weeks ago I started having lower back pain, then two days later woke up middle of night with pain from my head to feet. Then next night bad pain again plus chills and low fever. Had all flu symptoms. Went to doctor, he tested me for everything. Ordered CT scan, I had the…
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I'm back
Hey, guys, Very cool to see so many of you doing so well. I've been absent, only popping in here and there over the last couple years. To be honest, a lot of things have fallen by the wayside (but in a good way). Our son has been diagnosed on the autism spectrum and is still nonverbal at 3 years old. He's a great kid, but…
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Dad diagnosed with clear cell RCC pT1a grade 1. Experience? Advice? Anything.
hi, My Dad (64yr) is diagnosed with RCC clear cell, PT1a grade 1. He went through partial nephrectomy one week ago. Any survivors? Any advice? I am worried sick.
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6 years free and its come back
Not sure how many are still on here since I was on last, but I had a 21 cm tumor on my Right Kidney. Luckily it was encapsulated and didn't spread. Well, wouldn't you know, it's come back on my left adrenal gland and in my lungs! I have an appointment with an oncologist on the 19th of September at Dana Farber and a second…
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BDS?
I'm sorry I don't login and post a lot. I do lurk and read from time to time. BDS had some great information and I don't remember seeing him on here in awhile. I'm just wondering if he is ok. Does anyone know anything?
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I have a small mass - what should/can I do other than wait?
I'm looking for some advice on what my next step should be? Symptoms About 6 weeks ago I had a terrible pain in my RUQ. The was was pretty persistent and over the next week it seemed to vary in pain level, but was mostly there. It was to the point where car vibrations were really painful. I started taking Ibuprofen and it…
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Urine test
I am scheduled to have a partial nepherectomy at the end of the month for a stage 1, 3.7 cm tumor. The tumor is located near the collection system but we are unsure if it is interfering with it. I am experiencing painful swelling in my feet, hands and other joints. My rheumatologist thinks the swelling is either Lupus or…
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Help please
Hi, Im a 46 year old lady from Sweden that basically has given up on life. Been looking at your site for a while and although i dont understand everything i understand a lot. Now pardon my language and let me say i know i should be very grateful for my eaarly cancerverdicts and i am so very thankful but now it looks like a…
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6 Year NED - Ultrasounds Only?
Just got back from the oncologist with my wife Holly who had her kidney removed (Stage 1, 2012) and another NED. Thank God. She only had an ultrasound this time and they said that this was SOP going forward. Sound about right to others who have reached this milestone? Thanks! Tom
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My husband was recently put on Immunotherapy. What can we expect?
Hi, My husband was recently put on a combination infusion of two different types of immunotherapy (Yervoy and Opdivo) for Stage 4 kidney cancer. We've read all of the documents that the doctors gave us, but a lot is still unknown. Is anyone else on this treatment? If so, how long have you been on it, and do you have any…
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hardo718--Donna??
We've just learned about BDS, which was a sad outcome. Since we're checking on members, I've been worried about Donna (hardo718) . I sent her a couple personal messages to check in on her mid and late July without a response. She was last online June 1. I understand that people come and go on many boards, but she was such…
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Fantastic experience at Mayo, MN - partial nephrectomy
Hi all: I have been meaning to post here for some time. To anyone facing the terrifying diagnosis of possible or even confirmed kidney cancer, I highly recommend the Mayo Clinic Urology Dept. in Rochester MN. In 2016, a small tumor on my right kidney was discovered incidentally (as most are). I consulted many surgeons here…
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Nobel Prize given to two scientists whose research led to ipi and nivo
This is so amazing. I am so thankful for the research and hard work from these two men as well as the countless scientists, doctors, healthcare professionals, and fellow cancer survivors whose contributions led to the creation of the immunotherapy drugs that are literally saving my life. If I could hug these guys I would.…
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Hope
I read this post (link below) the other day and it is just too good not to share with you all. I know that many of us Stage IV survivors are on the immunotherapy treatment mentioned in this article (IPI/NIVO). This story gives me hope that the scientists and doctors are closer to a cure than we may realize. Keep fighting…