Last Saturday night I went to er for blood in my urine and pain in my right flank. They thought for sure I had kidney stones, but after a ct scan and a long wait I was told I had a 13cm mass. Wow, I never had any other symptoms at all. I went to urologist and he sent me for a high contrast ct scan and sure enough it is huge, I look at the images as my heart sunk. My wife is falling apart so I'm standing strong for her. Oh yeah I'm 35 and in good health otherwise. I really don't know what to expect next. I just want it removed asap. Can anyone tell me what to expect next?
Went back to dr today. So he's stupid. He is sending me to Emory to see someone to remove the kidney. He said there are some lymph nodes right by the kidney that are enlarged but he doesn't know what that means. I think he does know, or atleast he should. I'm guessing it's stage 3 and he doest want to tell me. Anyway I have to wait 10 to 14 days to hear from Emory. And so I will sit and wait.
My 47 year old brother was diagnosed with inoperable 4th stage renal cell carcinoma on 8/15/11. He has a 13cm tumor on the kidney, tumors in both lungs and lesions in the brain. He is not a candidate for surgery and is undergoing treatment with Torisel and is tolerating it extremely well, he says he feels very good. The first scans will be taken in several weeks. The most important thing is attitude.
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Emory called. Going in Monday afternoon. That was much faster than expected. Thank you for the reply by the way. Can't believe how much trouble my first urologist office gave me about filling out the fmla papers for my job, it was 4 pages fill in the blank. They didn't want to do it they wanted Emory who hasn't seen me yet to do it. I had to have them filled out so I can go to dr appointments with out trouble from work. So after 5 phone calls and arguing they got done in about 5 minutes and charged me $15. Seems like the two visits to your office would cover that sorry. Anyway I am hopeful about going to Emory and seeing what they have to say. I will try to post my ct photo this weekend. I guess I am going to kinda use this as a blog if no one minds so please check back and post anything you want. My heart goes out to everyone out there dealing with anything like this and your families.
Just got home from emory. Dr. Says it looks like stage 2, it could be in lymph nodes but there is only a 1 in 4 chance of that. Had my first MRI today( tip, keep your eyes closed it's easier that way) scheduled to have open radical nephrectomy Thursday morning. So I will update after I am in hospital wendsday. Hope all goes well.
The following 2 users give hugs of support to: Kidneymass
Ariel99 (10-23-2011),bbvgirl (10-20-2011)
They removed the lymph nodes and the dr said they looked ok but yes they will be check by the pathologist. As far as pain meds well my dr doesn't believe in them. He gives no narcotics, I have the onQ pump. He gives me 2 tylenol and a anti inflammatory every 6 hours so the pain sucks. He says it helps you recover faster and keeps your Bowles moving by not taking narcotics. I was supposed to go home today but I had a fever of 102.9 last night so they ran some test and are keeping me 1 more day. Also I am draining a white fluid into my drainage bag, from what I understand this has to do with the lymph nodes not healing correctly, the dr says it's kile. So I have to be on a no fat diet for the next 2 months. I'm worried about the pain when I get home.
I'm home! The drive home was an hour and it was painful but I feel ok. I still have my drainage bag in and will have to watch it and drain it 3 times daily. Alright so two odd things tonight 1. I passed gas out of my penis, this didn't hurt but was very strange. Called the nurse and she said it may be from the catheter, but if it keeps happening to call the er. 2. Very thick drainiage came out into tube and blocked up bag, my wife and I had to figure out how to clear it , but it seems ok now. Prepare for your return home so you can be proper up in bed and anywhere you sit, getting up and down is hard.
Here I am 1 week post op. Still have pain but it has gotten much better. I can get up and down by myself, it still hurts some, but I can do it. The last couple of nights have been rough, no appetite,cold sweats, and nausea. I threw up last night and the night befor, that is very painful.
I am going back Monday to have the drainage bag removed and the 48 staples running down my chest and stomach. The dr. Called last night with the pathology report. The surgical margins are negative, so they got the whole thing out clean. He said the tumor was the size of a football, I wish he had taken a picture. He took out 24 lymph nodes and 2 of th were positive for cancer, so that's not so good. I'm really not to sure what that means but I guess I will find out more on Monday. Also my cancer is translocation renal cell carcinoma. Renal cell carcinoma is the most common, but it's the translocation part that makes it rare. Less that 1% of adult kidney cancers are this kind and it is a newer subclass of cancer and lite is known about it. I know it is much more common in children than adults. I dont know what this means to my future, but I will face it one step at a time. God bless you all!
It was so strange to find your thread. My husband too was diagnosed with a rare form of renal cell carcinoma - called Chromophobe Renal Cell Carcinoma. We were told that this form of cancer is so rare - only (1%) of the WORLD population have ever been diagnosed with this form. It is caused by not having chomosome 17 in your genes. It was told that they have been unable to do any research on this type due to being unable to find enough people with it to complete a study.
He was diagnosed in late May of this year; and was also told his tumor in the right kidney was the size of a football. In one of his reports before his surgery, the report read that the mass was 12.3 cm anterior posterior (front to back) X 10 cm side to side X 14.2 cm superior inferior (top to bottom). He had his surgery in mid-June to have his nephrectomy completed. However, he was lucky enough to have a doctor that allowed him the pain medications to keep him comfortable.
Unfortunately, we were not lucky enough to say they got all of his. However, they did say this is a very slow growing form from what they know of it. He has recently begun chemo treatment using the Terisol. He has had three treatments so far; and is going through them well - with the only real side effect being extreme fatigue the day of the treatment brought on by some of the pre-meds given before the actual Terisol is given. He will have to do these treatments once weekly for the remainder of his life - or so we've been told.
Then I read about your issues getting your FMLA for your employer. BOY - that sounds like the issues I had getting them from my employer for being there for my husband.
WOW! Sooo many likeness!! It was very odd to read your story!! Almost like reading ours lifes story!
Anyway - just wanted to share - and say congratulations on getting through yours so well. Please feel free to contact at any time - as we would really enjoy hearing from you.
Thank you so much for your post. I hope your husband responds well to the chemotherapy. I go january 20th for my 3 month ct and MRI. I'm so sorry they didn't get all the cancer out, that is awful to go through all that and still have cancer remaining. That is odd how we have so many things in commen with our situations, it just shows you are never alone. I wish you both the very very best!
As for me I am doing pretty well, better than I expected. My incision split open at me belly button and had been oozing some. I have to go tomorrow so the dr can look at it. Gone out a couple of times but boy do I pay for it, I get so tired and achy afterwards.
So sorry to hear about your issue with the incision coming open. Hope all is well with you by the time you read this post. And good luck on your upcoming CT/MRI. Our prayers will be with you as you head in for your appointments.
As for my husband, he continues to do well - and handling his treatments well. He is a very strong man - as I am sure you are as well. And - yes - you are never alone! I am unsure of your faith - and we are not extremely religious people ourselves, But, I have always believed that with Strength, prayers and faith - all will go as is in his plans. I have further - and more strongly believed that we all have angels who walk with us. So, it is with that faith that we wish you all the best.
Good luck and best wishes in your ongoing battle.
Please feel free to keep in touch. We would love to buid a support group of people with our rare forms of cancer.