can anyone tell me what is the size of a kidney tumor can go to befor it should come out , my brother has one at 3cm .9 he been told ,
can anyone tell me what is the size of a kidney tumor can go to befor it should come out , my brother has one at 3cm .9 he been told ,
I really think it depends on kidney function,and where the tumor is located,for them to make a good call on when to go in. I am currently in the hospital in post-op for a partial kidney/tumor removal on my right side of a 3.2 cm tumor. The main concern for everyone involved should be maintaining kidney function. they left several cysts in and only removed the tumor for this reason. I have to come back to have two more tumors removed from my left kidney in two months, these are above the 3 cm mark also, so the best advice I think I can give you is talk to your Dr. about what concerns them most leaving it or removal. Personally if it's possible I would go with the later!!!!
I had both my kidneys removed at the same time in August 06, even though I had complete kidney function. Only for the bloating I had no idea there was any thing wrong. My tumour sizes varied from several 3cm a few 5cm a couple of + 9cm and one 14cm on my right kidney. In my case kidney function was secondary to the two soccer balls I had inside of my abdomen. My advice is get two opinions and if they come close do what you’re advised to do quickly, there are far worse things than dialysis. I have heard of people with 3cm tumours having one or both kidneys removed this is usually when the tumour is growing fast or when it is starting to affect function and no longer viable.
My daughter just found out about one month ago that she needs a surgury as soon as posible.They found a tumor on her kidney.So now onw hospital from Hamiltion call for the surgury and she said no.She wants to be closer to home.Her son just started school and she waths to be closer to home as posible.So now she is waitting for the North Bay hospital to call her back for that surgury.Why dont the hospitals do app closer to the pepole home instead off sending theme so far away?By the way she is only 24 years old and she had two brain surgury to get some tumors out one at the age off 16 and one more at the age 23.So i do prayer for her alot.
Batley, you should check the VHL handbook for general guidelines but Nothing can trump what your doctor recommends. I agree about getting two opinions. Try to find someone who knows about VHL if you can.
Louise - A lot of doctors are not entirely comfortable dealing with such cases as ours. VHL can be very tricky. If you live in a rural area the doctors might want your daughter to go to a more advanced hospital so she can get better care. The doctors at larger hospitals seem to be more experienced and have more resources at hand. I know that your daughter wants to be near her son at this important time of his life but if she does not get her kidneys taken care of now she might not be there for important times later in his life. I think she should go to the best hospital she can get to even if it is farther away.
Best wishes to you all.
Kristel
Maintaining kidney function as long as possible is one important consideration when weighing whether or not surgery is necessary. However, equally important is the size of the tumor. The recommendation by NIH is to remove tumors when they are around 3cm. The following statement was taken from the VHL Handbook.
"The consensus from the Freiburg (Germany) meeting (1994) was to recommend surgery only when the largest tumor is larger than 3 cm. This recommendation was verified by a multi-center study under Dr. Andrew Novick (Steinbach, 1995) and all the VHL study teams worldwide now concur with this guideline. So far there are only three verified reports of metastasis from tumors smaller than 4 cm, all of which were greater than 3 cm.
I had surgery at NIH 6 years ago. They removed 10 tumors and cysts from one kidney and I lost only 5% of my kidney. My kidneys are functioning at 100%. I would not have been so fortunate had a local surgeon performed the surgery. Please be diligent in finding the correct surgeon for the procedure.
** Warning: I ramble a bit, but there is a point, I swear to you! Please, if you're only 24 and your urologist wants to take BOTH kidneys, PLEASE KEEP READING!!
I live in a rural area and when I was 24 (same age as your daughter) my whole world flipped upside down. Over the next year and a half I was in and out of the hospital with surgeries and radiation. It was at this time that I was diagnosed.
My surgeries were all done in Springfield IL about a 2hr. drive from where my husband and I live. And both of our families are from the east coast (MD and MA) so it's just the two of us. Needless to say my husband's full time job was driving me back and forth and driving himself back and forth spending as much time as possible with me in Springfield. I was lucky enough to have my own room most of the time so he was allowed to sleep over in the hospital, but it was on one of those really lovely and super comfy (I say with sarcasm) flip out chair things. Anyway...
My last surgery was the kidney surgery where I had PART of my kidney removed. Post surgery I had a small infection so I got my own room again and this time it was a double room so they left the extra bed in there. Dave was overjoyed! By then the nurses knew us pretty well and they were happy to let him sleep on it.
Anyway for the 2nd time...
When I was first told I had to have the tumors removed from my right kidney I went to my local hospital to meet with their urologist. The hospital is 15 min. from our apartment. That urologist told me he wouldn't feel comfortable doing a partial nephrectomy (the official term for kidney surgery) but he'd take the whole thing out. I called my neurosurgeon back in Springfield and he recommended a colleague of his out there. I met with that urologist and he said to me (and David who's always by my side, thank God) "He (the other urologist) wanted to take the WHOLE thing out?! Gosh no, please, promise me you won't do that. Even if you go to a urologist other than me, please don't let them take the whole thing. You're only 24 years old! Yes, you have to have surgery but there's no reason you can't have a PARTIAL nephrectomy and that'll leave you with a lot more renal cells. Yes, you can live without your kidneys per se, but it's not fun and you're so young. I don't see any reason to remove it all."
Needless to say, I chose to stick with Dr. Tarter (like the sauce, as I like to say) and he did a great job. I still see him for yearly check ups and he's wonderful. If anyone who reads this is near or around Springfield IL and needs a great urologist, he's your man. He's helped Dave and I out so much and he knows all about VHL. I'm the only actual patient he's seen with it and from the word go he just dove into the whole thing educating himself so he could help me to the best of his ability. And he knows I've got a good brain and am perty smart for the most part and he's NEVER talked down to me. In fact, when I go see him, we look at the MRI's together and we discuss what he sees. I love 'im.
So, like Dr. Tarter begged me, PLEASE GET A SECOND OPINION!! Your kidneys are different than mine, but you're so young and so if they can just to a partial go for it! I've been living with tumors and cysts and growths on my left kidney and the remaining ones on my right one for, let's see, I'm 32 now so that's 8 yrs. now. And my pancreas has so many cysts it glows like a jack-o-lantern but they're all just hanging out, not growing, not changing. Just b/c you have growths on your insides doesn't mean it's all bad and gloom and doom.
okay? whew. Alright. Thanks for reading all this and not falling asleep. Hopefully. :o) And good luck to all of us. Like so many of you, I pray for us every day. :o)
Good job, everybody! I've got nothing to add. If anybody feels the need to call us and discuss options, we are always ready to listen.
It's a balancing act. The goal is:
-- keep those kidneys healthy and working your whole life
-- avoid metastatic cancer
Keep up a conscientious program of timely surveillance. It's not easy, but the it's the only effective way we have today to meet that goal.
Finding the right doctor is not easy, and certainly is not always convenient, but it's an important investment in your future.
All best wishes,
Joyce
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