New here...and qite scared..
The Docs gave me 3 choices
1. To wait 6 months and do another scan – I cannot do this, there is no way I can function for another 6 months like this.
2. To go in and freeze the mass – I don’t want to do this, because I will never know if it was cancer or not.
3. Partial neph- I have elected this and am going under the knife on 1/05, the surgeon is an expert at this, trained at Harvard Med school and is a specialist in kidney tumor removal.
I am reaching out to all of you as a last resort, my wife, parents all seem to be in denial about the fact it may be cancer, but I know they just don’t want to scare me more, and with my hypochondria are probably a bit tired of my panicky ways…this is not to say they are not supportive, but I can see my wife is pretty depressed too, we are young and just wanted to start our family…Im really scared guys…and I am unable to enjoy anything right now, its like I already let this beat me…the surgeon told me he may see some fatty element to the mass, that gave me hope…for about an hour, I get all kinds of conflicting information, in fact I am having information overload, for some reason I can get it through my head that the google thing is only hurting me right now, but then again this is how I found CSN…
Thanks for letting me vent…any advice would be helpful
Comments
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JSR Relax
JSR. I read your post and you may be over reacting, If your masses are in fact 13 mm and 4 mm and not 13 cm and 4 cm they are in fact quite small. Kidney Cancer grows very slowly. Most people with masses less than 4cm are stage 1 and the survival rate approaches 100%. The words Kidney Cancer are 2 very scary words. I had a 2.7 cm tumor back in 2002. I had a full nepherectomy ( they were not doing partials then) and went water skiing 11 months later for my 60th birthday gathering. Kidney Cancer for small tumors even if cancerous is 100% curable with surgery. No other treatment other than follow up CT's. Without surgery Kidney Cancer spreads and complications arise. While the surgery is no picnik it sure beats the alternative. While you did not volunteer for our little club, welcome anyway. To me the worst thing was that little scope looking into your bladder. Get the surgery over with and help me welcome the newcomers to our little club.
Icemantoo0 -
Calm down until you know!
Hi JSR!
I think I know how you're feeling- just the suggestion of cancer sounds like a sentence of doom. I agree with Icemantoo, and would add that your worry & anxiety will only make your recovery worse. It's normal to panic when something goes wrong but you have no control over whether this thing is cancer or not, and hopefully your psych can help you with techniques to transform your habitual thought patterns. Your immune system will need to be prepared to help you heal physically, and not be diverted into giving all its energy into your emotional state.
When I was diagnosed, I was told it was RCC and had no choice but to have an open partial nephrectomy. I had many reactions- a lot of them negative- to begin with, but when faced with such a momentous situation there is really only one way to view it, and that is realistically. You do what you have to do, and deal with the situation with all the courage and determination that life has taught you. When my path results came back the tumour was found to be a rare benign tumour (metanephric adenoma) and not malignant cancer. I was over-joyed, and not just because I was cancer-free, but because I had coped with something so difficult and knew I could face the worst that could happen. It gave me a faith and confidence in myself that I'd never had before.
This period of your life will change you forever if you let it. How it changes you is largely up to you! Please let me know if I can help in any way- and all the best for your surgery,
Von xx0 -
TryingVon55 said:Calm down until you know!
Hi JSR!
I think I know how you're feeling- just the suggestion of cancer sounds like a sentence of doom. I agree with Icemantoo, and would add that your worry & anxiety will only make your recovery worse. It's normal to panic when something goes wrong but you have no control over whether this thing is cancer or not, and hopefully your psych can help you with techniques to transform your habitual thought patterns. Your immune system will need to be prepared to help you heal physically, and not be diverted into giving all its energy into your emotional state.
When I was diagnosed, I was told it was RCC and had no choice but to have an open partial nephrectomy. I had many reactions- a lot of them negative- to begin with, but when faced with such a momentous situation there is really only one way to view it, and that is realistically. You do what you have to do, and deal with the situation with all the courage and determination that life has taught you. When my path results came back the tumour was found to be a rare benign tumour (metanephric adenoma) and not malignant cancer. I was over-joyed, and not just because I was cancer-free, but because I had coped with something so difficult and knew I could face the worst that could happen. It gave me a faith and confidence in myself that I'd never had before.
This period of your life will change you forever if you let it. How it changes you is largely up to you! Please let me know if I can help in any way- and all the best for your surgery,
Von xx
Thanks for the replies, I agree Iceman I am reacting with a lot of drama, my masses are in fact 13MM and 4MM (not CM). I have been dealing with an intense fear of cancer for over 10 years now, and it did not preapare me for this at all, all I can think is to sit and question if I will be dead in a year, i know how it sounds, but i came here to get these thoughts out...so with the anxiety and depression mountain to cross, I am now dealing with this, plus the typical holiday blues....one of the biggest fears I have of this whole thing is the follow ups later down the road, the waiting game puts me in a state where I cannot function, and to know that may be possibly coming for the next 10 years...wow how do you all do it...I know I am jumping ahead, I need to focus on the surgery and find out if its actually cancer first.
Anyway, your all some strong people, I have been watching and reading a lot of posts on here for close to a month now, and I thank you guys for the time you take..please pray for me if thats your thing, as I will be praying for all of you now.
Thanks again0 -
JSR, Relax some moreJSR said:Trying
Thanks for the replies, I agree Iceman I am reacting with a lot of drama, my masses are in fact 13MM and 4MM (not CM). I have been dealing with an intense fear of cancer for over 10 years now, and it did not preapare me for this at all, all I can think is to sit and question if I will be dead in a year, i know how it sounds, but i came here to get these thoughts out...so with the anxiety and depression mountain to cross, I am now dealing with this, plus the typical holiday blues....one of the biggest fears I have of this whole thing is the follow ups later down the road, the waiting game puts me in a state where I cannot function, and to know that may be possibly coming for the next 10 years...wow how do you all do it...I know I am jumping ahead, I need to focus on the surgery and find out if its actually cancer first.
Anyway, your all some strong people, I have been watching and reading a lot of posts on here for close to a month now, and I thank you guys for the time you take..please pray for me if thats your thing, as I will be praying for all of you now.
Thanks again
From your symtoms and comparing you to myself and to all of the other survivors on this board it looks like a slam dunk that you will get through this surgery with flying colors. Having said that it may in fact be Cancer, but once you have the surgery you can tell people you used to have Cancer, not that you have it. The follow up CT's are a CYA procedures for the doctors. My doctor keeps telling me that I will die of something else. Face the fact that with your small tumor or mass you are not going to die of Kidney Cancer nor require further treatment. There are a lot of people on this board wishing their prognosis was as good as yours. I do not know how to put this any other way than to tell you that you that you are going to fully recover from this event. Stay strong. The anxiety you have is normal as I had similar anxiety before my surgery and yes the pathology report did confirm that mine was Cancer. So what. I beat it and so will you. And you are not going to be dead in a year,5 years or 10 years. Fifty five years maybe, it depends on your genes.
Icemantoo0 -
oh my I know exactly how you
oh my I know exactly how you feel. I was just diagnosed 2 weeks ago and its been the most stressful event in my life! Since getting my hands on the CT scan films I have been searching and reading and trying to decipher my fate. Its good the few minutes a day when you can almost " forget" that you have cancer. Hopefully if they found fat in it, its an angiomyopiloma! Wish I had some advice for you but im in need of a good swift kick myself! Good luck!0 -
ThanksEarthMama said:oh my I know exactly how you
oh my I know exactly how you feel. I was just diagnosed 2 weeks ago and its been the most stressful event in my life! Since getting my hands on the CT scan films I have been searching and reading and trying to decipher my fate. Its good the few minutes a day when you can almost " forget" that you have cancer. Hopefully if they found fat in it, its an angiomyopiloma! Wish I had some advice for you but im in need of a good swift kick myself! Good luck!
Thanks to all for the replies, Iceman youve got the tough outlook I need to have, Von thanks for the kind words Im glad yours was benign, Earthmama we have the same surgery date 1/05/11, so best of luck to you as well, if your feeling anything like me right now every hour is a struggle of fear of the future and if I have one, I know about those minutes when you forget, but mine are about once a week right now and literally only for a minute..one of the hardest things for me right now is when I get home from work and see my wife...it makes my eyes well up most days to know what she must be going through, because if it was her I would be way more devastated than I already am...that and the fear of the unknown, if the pain when swallowing I have is stress or a MET to my viocebox...and about trying to scour the internet for answers..dont do it, beileve me I am there..its funny the ACS site on here gives a nice little outlook, but if you read something like Medline plus, the wording is much more negative, and at this point I am hanging on every word I read feeling it applies to me..
Earthmama- curious how you have been diagnosed? Did they do a biopsy? Do you know 100% its RCC? My Docs (I have seen 2 URologists) are only telling me maybe at this point..
I know this is my road to travel and nobody else can travel it for me, but I do feel the compassion and advise from you all..0 -
ONE DAY AT A TIMEJSR said:Thanks
Thanks to all for the replies, Iceman youve got the tough outlook I need to have, Von thanks for the kind words Im glad yours was benign, Earthmama we have the same surgery date 1/05/11, so best of luck to you as well, if your feeling anything like me right now every hour is a struggle of fear of the future and if I have one, I know about those minutes when you forget, but mine are about once a week right now and literally only for a minute..one of the hardest things for me right now is when I get home from work and see my wife...it makes my eyes well up most days to know what she must be going through, because if it was her I would be way more devastated than I already am...that and the fear of the unknown, if the pain when swallowing I have is stress or a MET to my viocebox...and about trying to scour the internet for answers..dont do it, beileve me I am there..its funny the ACS site on here gives a nice little outlook, but if you read something like Medline plus, the wording is much more negative, and at this point I am hanging on every word I read feeling it applies to me..
Earthmama- curious how you have been diagnosed? Did they do a biopsy? Do you know 100% its RCC? My Docs (I have seen 2 URologists) are only telling me maybe at this point..
I know this is my road to travel and nobody else can travel it for me, but I do feel the compassion and advise from you all..
hey jsr,
i don't have time right now for a full reply with my back story,
but i wanted to reply quickly and tell you something very important.
STAY OFF THE INTERNET!!!!
i have had 2 types of cancer, both stage 1, and everytime i've been scared out of my wits and then depressed, is when i've looked on the internet for information. NOTHING my doctors have ever told me has scared me more than whats on the internet. whenever i've gotten into those "i'm going to die" phases its because i've read about someone else's case.
even this board as wonderful as it is, and when i was diagnosed with rcc its the first place i came, it can be scary to read other peoples situations.
other important point. we're all different.
for now, take it one day at a time, its all you can do. try to distract yourself, your mind.
and tell yourself its normal to be scared and worried when faced with this.
but as icemantoo said your masses are very small.
my secret weapon: FAITH AND PRAYER. and i also had an oncology social worker who it helped very much to talk to.
hang in there.0 -
Hi JSR,JSR said:Thanks
Thanks to all for the replies, Iceman youve got the tough outlook I need to have, Von thanks for the kind words Im glad yours was benign, Earthmama we have the same surgery date 1/05/11, so best of luck to you as well, if your feeling anything like me right now every hour is a struggle of fear of the future and if I have one, I know about those minutes when you forget, but mine are about once a week right now and literally only for a minute..one of the hardest things for me right now is when I get home from work and see my wife...it makes my eyes well up most days to know what she must be going through, because if it was her I would be way more devastated than I already am...that and the fear of the unknown, if the pain when swallowing I have is stress or a MET to my viocebox...and about trying to scour the internet for answers..dont do it, beileve me I am there..its funny the ACS site on here gives a nice little outlook, but if you read something like Medline plus, the wording is much more negative, and at this point I am hanging on every word I read feeling it applies to me..
Earthmama- curious how you have been diagnosed? Did they do a biopsy? Do you know 100% its RCC? My Docs (I have seen 2 URologists) are only telling me maybe at this point..
I know this is my road to travel and nobody else can travel it for me, but I do feel the compassion and advise from you all..
6 months ago during
Hi JSR,
6 months ago during a routine ultrasound they found 5 cm mass on my right kidney. Right away the radiologist described it as "highly suspicious", 90% chance of being a malignant cancer. CT scan confirmed the mass, but also indicated that other organs are not affected. Since the mass was located in the middle part of my kidney, the only option was to remove the whole kidney. I had the laparoscopic surgery 4 weeks later. I was home after 3 days in hospital, on pain medication for 7 days only. Two days after I came back from the hospital, the doctor called with the biopsy results. It wasn't cancer, I had oncocytoma, a rare and benign tumor. Until the biopsy is done, you don't know if it's cancer. They don't do the biopsy before surgery, because if it's a cancer, it can spread, so hang on until you hear your results. And even if it's a cancer, your masses are really small, so it is a good chance that they are stage I and your survival rate is almost 100%.0 -
Feeling GuiltyMartha_R said:Hi JSR,
6 months ago during
Hi JSR,
6 months ago during a routine ultrasound they found 5 cm mass on my right kidney. Right away the radiologist described it as "highly suspicious", 90% chance of being a malignant cancer. CT scan confirmed the mass, but also indicated that other organs are not affected. Since the mass was located in the middle part of my kidney, the only option was to remove the whole kidney. I had the laparoscopic surgery 4 weeks later. I was home after 3 days in hospital, on pain medication for 7 days only. Two days after I came back from the hospital, the doctor called with the biopsy results. It wasn't cancer, I had oncocytoma, a rare and benign tumor. Until the biopsy is done, you don't know if it's cancer. They don't do the biopsy before surgery, because if it's a cancer, it can spread, so hang on until you hear your results. And even if it's a cancer, your masses are really small, so it is a good chance that they are stage I and your survival rate is almost 100%.
Question, did any of you go through a phase of feeling guilty as to what you may have done to cause this? Also I have this very strange feeling of not being able to enjoy anything...almost feeling as if I let it go for an hour and enjoy say a dinner or a movie, I am jinxing myself (kind of like when you say something and then need to "knock on wood")...or am i just really really crazy, I tried explaining this to my wife the other night when she asked me where did the man she looked up to and fell in love with go, she didnt understand how I could feel guilty about enjoying life right now...I feel really afraid to be alone in my house with myself, which two months ago was something I ofeten enjoyed, that hour alone to just veg out and play call of duty on xbox..now I have no idea what to do for fun, and I just feel like I am wasting my precious time, and what is the point of working ect...
I know a lot of people who have gone through cancer or cancer scares feel as though they will cherish everyday...I keep looking deep inside myself for those strengths, but they are not there..maybe I am not far enough in the process yet..
To those of you who have been there...is this anything that you felt?
Thanks to all for your time..
Jeremiah0 -
JSR, Pease do not let this get the better of youJSR said:Feeling Guilty
Question, did any of you go through a phase of feeling guilty as to what you may have done to cause this? Also I have this very strange feeling of not being able to enjoy anything...almost feeling as if I let it go for an hour and enjoy say a dinner or a movie, I am jinxing myself (kind of like when you say something and then need to "knock on wood")...or am i just really really crazy, I tried explaining this to my wife the other night when she asked me where did the man she looked up to and fell in love with go, she didnt understand how I could feel guilty about enjoying life right now...I feel really afraid to be alone in my house with myself, which two months ago was something I ofeten enjoyed, that hour alone to just veg out and play call of duty on xbox..now I have no idea what to do for fun, and I just feel like I am wasting my precious time, and what is the point of working ect...
I know a lot of people who have gone through cancer or cancer scares feel as though they will cherish everyday...I keep looking deep inside myself for those strengths, but they are not there..maybe I am not far enough in the process yet..
To those of you who have been there...is this anything that you felt?
Thanks to all for your time..
Jeremiah
Now that you know that your Kidney Cancer is extremely small and 100% curable the surgery is just a bump in the road. People do not have other types of cancer treament for Kidney Cancer unless it spreads and metasticises and yours will be out before it has that chance. Otherwise the doctor would not have given you the option to wait and seef or 6 months if he was at all concerned that it would spread. Most of us diagnosed with Kidney Cancer even Stage 1 like myself are much further along and we are not given that option Surgery cures people with the begining stages of Kidney Cancer. Period. You are going to ruin your life and family if you let this get the best of you. Do not get hung up on whether this small mass or tumor is cancer or not. It will go away as a result of the surgery whether Cancer or not. If you made it thru that little scope you can make it thru the surgery. You are going to need your wife's support thru this process, Let her help you instead of scarying her away. The big C is not a friendly word to hear and I was something less than excited when I first heard it out of practically nowhere, Once you have the surgery things only get better for someone with as small a mass or tumor as you have. Go to the movies. Go out to dinner. Enjoy the holidays. You are going to be around for a lot longer than me. I only have 30 or so years to go now that I am 67.
Icemantoo0 -
I understand
I know what you are going through, I had a radical nephrectomy almost 10 years ago, it was stage 2 and 7cm. Do you know what that means? It means I am almost a 10 year survivor, come May 22, 2011. So hang in there, cheer up, enjoy life, and I will be keeping you in my prayers! Best Wishes to you and lets get together for OUR 30 and 40 year survival celebration!!0 -
Blessed4sureBlessed4sure said:I understand
I know what you are going through, I had a radical nephrectomy almost 10 years ago, it was stage 2 and 7cm. Do you know what that means? It means I am almost a 10 year survivor, come May 22, 2011. So hang in there, cheer up, enjoy life, and I will be keeping you in my prayers! Best Wishes to you and lets get together for OUR 30 and 40 year survival celebration!!
It is nice to hear from a fellow veteran. Hopefully you and I can help some of these newcomers through those scary words, Kidney Cancer. We can help them understand that in many cases especially those with small tumors that they have nothing to fear except fear itself (thank you FDR) and even those with larger tumors there has been much improvement in drugs and therapy after the surgery from when I started my journey 8 and 1/2 years ago.0 -
come a long wayicemantoo said:Blessed4sure
It is nice to hear from a fellow veteran. Hopefully you and I can help some of these newcomers through those scary words, Kidney Cancer. We can help them understand that in many cases especially those with small tumors that they have nothing to fear except fear itself (thank you FDR) and even those with larger tumors there has been much improvement in drugs and therapy after the surgery from when I started my journey 8 and 1/2 years ago.
Hi icemantoo. It is nice to hear from you. Yes maybe we can give them some hope, I thought it was a death sentence for sure. I was a 41 year old female and I thought my only problem was having to get reading glasses.lol. Now I need stronger reading glasses and don't really give my former diagnosis of kidney cancer much thought, oh, sometimes it gets a little thought, but you can't let it rule or control your every thought and life. Yes you are right, they have come a long way in their knowledge of kidney cancer and the way they treat it! Best wishes everyone on your journey!0 -
Thanks, its helpingBlessed4sure said:come a long way
Hi icemantoo. It is nice to hear from you. Yes maybe we can give them some hope, I thought it was a death sentence for sure. I was a 41 year old female and I thought my only problem was having to get reading glasses.lol. Now I need stronger reading glasses and don't really give my former diagnosis of kidney cancer much thought, oh, sometimes it gets a little thought, but you can't let it rule or control your every thought and life. Yes you are right, they have come a long way in their knowledge of kidney cancer and the way they treat it! Best wishes everyone on your journey!
I just want to thank you all, it means a lot that your reaching out with your words of encouragement.
I dont have a lot to say right now as I am in the waiting game until my surgery 1/05/11, but please know I am on here reading and wishing all of you the best..
Take care and talk to you all soon.
Jeremiah0 -
i know how you feelicemantoo said:JSR, Pease do not let this get the better of you
Now that you know that your Kidney Cancer is extremely small and 100% curable the surgery is just a bump in the road. People do not have other types of cancer treament for Kidney Cancer unless it spreads and metasticises and yours will be out before it has that chance. Otherwise the doctor would not have given you the option to wait and seef or 6 months if he was at all concerned that it would spread. Most of us diagnosed with Kidney Cancer even Stage 1 like myself are much further along and we are not given that option Surgery cures people with the begining stages of Kidney Cancer. Period. You are going to ruin your life and family if you let this get the best of you. Do not get hung up on whether this small mass or tumor is cancer or not. It will go away as a result of the surgery whether Cancer or not. If you made it thru that little scope you can make it thru the surgery. You are going to need your wife's support thru this process, Let her help you instead of scarying her away. The big C is not a friendly word to hear and I was something less than excited when I first heard it out of practically nowhere, Once you have the surgery things only get better for someone with as small a mass or tumor as you have. Go to the movies. Go out to dinner. Enjoy the holidays. You are going to be around for a lot longer than me. I only have 30 or so years to go now that I am 67.
Icemantoo
Hi JSR...welcome to this site...it is a godsend for me...I felt the same way before my surgery on sept 7th...they discovered a mass on my lft kidney in aug by accident...the radiologist felt it was rcc and I was referred to urology....tumor was 5.6 cm stage 3 aggressive.I too spent alot of time on the internet looking for answers prior to surgery...all it did was cause alot more anxiety than I needed.....I am now 3 mos post-op I do light loads of laundry,cooking meals for the family...go for alot of walks and of course I pray alot....I also pray for all the newcomers.Everyone deals with these crisis differently.I'd like to suggest that maybe include your wife in outings....go out and drive and go see all the houses decorated w/lights..or go for walks and enjoy each others company.My hubby and I are now much closer than we were before my diagnosis.I know this is difficult for you,but you have to keep th faith..its better than thinking the worse...its time to have more positive thoughts.I hope your outlook changes for the better.You can do this..take care0 -
Partial nephrectomy recovering patientJSR said:Thanks, its helping
I just want to thank you all, it means a lot that your reaching out with your words of encouragement.
I dont have a lot to say right now as I am in the waiting game until my surgery 1/05/11, but please know I am on here reading and wishing all of you the best..
Take care and talk to you all soon.
Jeremiah
I am in my second week of recovery from a partial nephrectomy. I was undergoing evaluation tests for a lung transplant back in Sept. When the radiologist discovered a mass in my left kidney during an ultrasound procedure. The last thing I was expecting was "cancer". Suddenly my focus went from breathing difficulties to surviving cancer. I spent the next six weeks preparing for surgery by exercising to increase my strength and stamina because I was a high risk patient due to the condition of my lungs. The surgery was a success, my team removed the 4cm tumor and 25% of my kidney and the path report indicated level 1 cystic renal cell carcinoma. This is a slow growing cancer, which found early can be cured with surgery and no further treatment needed.
I still have breathing difficulties but I am cancer free. Focus on the positives in your life and the negatives will not dominate.
Prior to my surgery, I put my family through much more trauma than was necessary, I feel so silly now that it is all over.
Good luck with your kidney and rest comfortably knowing that this cancer can be beaten, easily!
I am getting back on my treadmill and back to fighting my lung disease!
J Roy0 -
Please consider double-checking a few things
Please allow me to respectfully suggest that before you get your operation you step back and double-check a few things:
Has your doctor truly informed you? In other words, has your doctor informed you that he/she may have to remove the entire kidney instead of just the tumor? Do you know what your doctor's opinion of his/her chances of removing the just the tumor and preserving the rest of your kidney and its function? Does she/he back it up with data that proves her/his success rate? Has your doctor informed you what your outlook would be if you have the entire kidney removed?
Is your doctor and hospital truly your best options for this operation?
Your tumors are indeed small, and that is good news. I totally understand your somewhat panicked reaction to the news of your tumors. However, in my opinion, you need to take a deep breath and consider the possible outcomes.
Allow me to explain...
I too have been thought of as being somewhat hypochondric and anxious by my doctor(s). I was 49 when a CT scan found a 3cm tumor on my right kidney (the tumor turned out to be cancerous). My urologist also was Harvard-trained, a self-professed specialist in kidney tumor removal; a super nice guy who appears to be in the prime of his career.
I too had the reaction of wanting the tumor gone and diagnosed as soon as possible, and wondered if every ache and pain in the area was caused by the tumor. I also had various health issues that the doctors said could not have been caused by the tumor (in retrospect, some might have, others were perhaps caused by a hernia that was undiagnosed at the time). I don't know about you and your doctors, but several of my doctors rushed me to get the tumor out soon.
As a result, I did not do all of my homework, and I scheduled my operation just about two months after the radiology indicated a tumor. And, as a result of the rush I have had a less than optimal outcome: Even though the tumor was exophytic the pathology described it as a surface tumor, and the doctor tried to perform the partial nephrectomy, he instead removed my entire kidney and adrenal gland via radical nephrectomy. Furthermore, even though before the operation my kidneys were both working fine, I didn't have diabetes or protein in the urine, and the CT and MRI showed my left kidney was of normal size and appearance, the left kidney did not adapt after the operation and this left me smack in the middle of stage 3 CKD - something the doctors assured me would not happen.
I spent many hundreds of hours doing research trying to find out how to improve my situation (I succeeded, but that's another story). A necessary part of the research was finding out how I got into this situation, and I feel that I have learned an awful lot about your situation, and would like to share what I have learned.
First, as others have mentioned in this post, kidney tumors almost always grow very slowly. It is true that sometimes they do not. However, there are some folks that think that a tumor's destiny is decided very early and its destiny to grow and metastasize and cause you trouble is already set well before the tumor is detectable. Also, as long as the tumor is small, you should not panic - if they remove the tumor it is very likely gone and you would likely not have a recurrence.
Second, I found statistics that say that between 25% and 40% of people who have a radical nephrectomy with normal kidney function end up with low kidney function (called CKD: chronic kidney disease) immediately after the operation. Furthermore, after 3 years, 65% of people with a radical nephrectomy end up with CKD stage 3a, and 35% of people with a radical nephrectomy end up with CKD stage 3b. In other words, if they take out a kidney, you are more likely than not to end up with kidney disease.
Third, my doctors all pointed to the seemingly benign effects of removing a kidney - this is almost surely untrue. My doctors all pointed to kidney donors (for transplant) and the "fact" that studies of kidney donors shows their lifetime is seemingly not affected by the removal of the kidney. Notwithstanding the fact that the caveats in these studies immediately make the studies suspect even for their intended purposes, consider that these studies just do not apply to folks with kidney tumors. Studies that have been coming out in the last 5 or so years show that removing a kidney from somebody with a tumor (even a benign tumor) has two very negative results: (1) somewhere between an excess 2 and 2.5 times chance of dying from any cause and (2) an excess 10% chance of dying in the next 10 years. Let me put it simply: the studies seem to indicate that for folks with a small kidney tumor (less than 4cm), if you take out just the tumor then about 93% will be alive in 10 years, and if you take out the entire kidney then about 83% will be alive in 10 years. Let me reiterate: the issue is not freedom from cancer, the issue is survival; the issue of being cancer-free is moot if you are dead. I have not seen studies further out than 10 years, but if you extrapolate from the curves, it appears the risk gets worse further out.
Fourth, my doctors all mentioned that kidney failure (i.e. needing dialysis after a nephrectomy) is unlikely and that kidney disease can be managed, so don't worry about this possibility. However, they failed to mention that low kidney function is not the killer to be feared, the killer is heart disease caused by low kidney function - the majority of people with kidney disease die due to cardiac and arterial causes (heart attacks, stroke, etc.). This certainly explains the excess risk I mentioned in the previous paragraph.
Fifth, I found out that the top kidney cancer centers have around a 90% success rate in partial nephrectomies for tumors less than 4cm. My doctor states he has a 60-75% success rate for the same kind of tumors. Their cancer-specific survival is identical. Furthermore, the top kidney cancer centers perform many, many more partial nephrectomy operations than my doctor does. My doctor never mentioned this, and indeed still denies that anybody could perform more operations and have a better success rate than he has.
Had I known all of this, I definitely would have spent more time, perhaps even another couple of months, finding the proper surgeon and hospital.
So, consider asking your doctor some questions. Specifically:
What is your success rate at a successful partial nephrectomy (versus a conversion to radical nephrectomy) for all tumors less than 4cm? (Note, your surgeon may want to give you his/her chances of removing your smaller tumor, but for apples-to-apples comparison purposes against the big centers like Cleveland Clinic, Mayo Clinic, Sloan Kettering, etc., be sure to get his/her success rate for all "small tumors" less than 4cm). Make sure the doctor can back up the answer with real data.
How many partial nephrectomies do you do each month/year? How many in this hospital?
If the answer for the first question is much less than 90%, consider going to a larger center. Consider that the Cleveland Clinic performs 100-200 partial nephrectomies per year - if your hospital is significantly less than this volume, and/or your doctor's share of the hospital's partial nephretomies is a lot less than the other doctors at the hospital, again consider going to a larger center or different doctor.
If your doctor has not already fully informed you of the chances of losing a kidney as a result of this operation, and/or has not fully informed you of the future risks to you of having a missing kidney, again consider going to a different doctor/center.
For a center of excellence near you, google "best urology" and perhaps check out the US News "Best Hospitals" list. There is a high-ranked urology hospital in LA.
Other questions you could ask: What is the margin size you strive for (this is a small number at centers of excellence, between 3mm and 5mm; for reference my doctor goes for 10mm). Have you done 3D radiology in advance and do you know for sure that you can remove the tumor while maintaining adequate margins? Do you use interoperative ultrasound to assist you in the operation? Do you do interoperative frozen-section pathology to verify the tumor margins? (As you might guess, the answers were all "no" for my doctor and my hospital - if my doctor can't see it with his eyes, he converts to radical.) Are you going to use a laparoscopic or open approach? (I believe that at all centers, an open partial nephrectomy is still the option that gives you the best chance of removing the tumor and preserving the kidney, has the least post-operative complications, and also preserves the most kidney function in the remaining part of the kidney. However it is more painful and more difficult to physically recover from. I went for the open approach to give myself the best chances, and still do not regret that choice.)
If your doctor has not given you this information yet, don't worry that you are too close to your operation date to get it or change your mind. Consider calling your doctor ASAP and asking for a meeting to discuss this ASAP. If you cannot get this information, or if you are not comfortable with the answers, consider postponing the operation until you are satisfied and don't worry a bit what the doctor thinks of it. I sorely wish I had done this.
Let me sum up: My doctor is patting himself on the back and thinks he did a good job; he thinks I should be happy that the cancer is almost certainly gone and leave it at that. Instead, I am extremely bitter that my doctor traded one dangerous, probably slow moving, and likely completely curable illness for another dangerous, slower moving, but not curable illness, and my doctor had not properly informed me of this possibility. I'm not denying that my doctor is talented and did a technically good job with the surgery itself, but perhaps for the year 1995 not 2010. Had I gone to a surgeon and center that was more adept, the mathematics imply that I would more than likely still have my kidney with the equivalent expectation that the cancer will not return.
You are a bunch younger than I am (and I am somewhat on the young side for kidney cancer), therefore your operation outcome potentially has even more ramifications for you than it does for me. Also, fact that your tumor seems to be multi-focal perhaps indicates that your other kidney is at increased risk for tumors in the future - if the doctors remove this kidney (as opposed to just removing the tumor) then you are at even more increased danger and have even less options if the other kidney develops a tumor in the future. Please consider double-checking that your doctor(s) really have your best interests at heart and instead aren't just lusting after the fees they'll earn having you as a patient.0 -
your throwing doubt in my mindRad1 said:Please consider double-checking a few things
Please allow me to respectfully suggest that before you get your operation you step back and double-check a few things:
Has your doctor truly informed you? In other words, has your doctor informed you that he/she may have to remove the entire kidney instead of just the tumor? Do you know what your doctor's opinion of his/her chances of removing the just the tumor and preserving the rest of your kidney and its function? Does she/he back it up with data that proves her/his success rate? Has your doctor informed you what your outlook would be if you have the entire kidney removed?
Is your doctor and hospital truly your best options for this operation?
Your tumors are indeed small, and that is good news. I totally understand your somewhat panicked reaction to the news of your tumors. However, in my opinion, you need to take a deep breath and consider the possible outcomes.
Allow me to explain...
I too have been thought of as being somewhat hypochondric and anxious by my doctor(s). I was 49 when a CT scan found a 3cm tumor on my right kidney (the tumor turned out to be cancerous). My urologist also was Harvard-trained, a self-professed specialist in kidney tumor removal; a super nice guy who appears to be in the prime of his career.
I too had the reaction of wanting the tumor gone and diagnosed as soon as possible, and wondered if every ache and pain in the area was caused by the tumor. I also had various health issues that the doctors said could not have been caused by the tumor (in retrospect, some might have, others were perhaps caused by a hernia that was undiagnosed at the time). I don't know about you and your doctors, but several of my doctors rushed me to get the tumor out soon.
As a result, I did not do all of my homework, and I scheduled my operation just about two months after the radiology indicated a tumor. And, as a result of the rush I have had a less than optimal outcome: Even though the tumor was exophytic the pathology described it as a surface tumor, and the doctor tried to perform the partial nephrectomy, he instead removed my entire kidney and adrenal gland via radical nephrectomy. Furthermore, even though before the operation my kidneys were both working fine, I didn't have diabetes or protein in the urine, and the CT and MRI showed my left kidney was of normal size and appearance, the left kidney did not adapt after the operation and this left me smack in the middle of stage 3 CKD - something the doctors assured me would not happen.
I spent many hundreds of hours doing research trying to find out how to improve my situation (I succeeded, but that's another story). A necessary part of the research was finding out how I got into this situation, and I feel that I have learned an awful lot about your situation, and would like to share what I have learned.
First, as others have mentioned in this post, kidney tumors almost always grow very slowly. It is true that sometimes they do not. However, there are some folks that think that a tumor's destiny is decided very early and its destiny to grow and metastasize and cause you trouble is already set well before the tumor is detectable. Also, as long as the tumor is small, you should not panic - if they remove the tumor it is very likely gone and you would likely not have a recurrence.
Second, I found statistics that say that between 25% and 40% of people who have a radical nephrectomy with normal kidney function end up with low kidney function (called CKD: chronic kidney disease) immediately after the operation. Furthermore, after 3 years, 65% of people with a radical nephrectomy end up with CKD stage 3a, and 35% of people with a radical nephrectomy end up with CKD stage 3b. In other words, if they take out a kidney, you are more likely than not to end up with kidney disease.
Third, my doctors all pointed to the seemingly benign effects of removing a kidney - this is almost surely untrue. My doctors all pointed to kidney donors (for transplant) and the "fact" that studies of kidney donors shows their lifetime is seemingly not affected by the removal of the kidney. Notwithstanding the fact that the caveats in these studies immediately make the studies suspect even for their intended purposes, consider that these studies just do not apply to folks with kidney tumors. Studies that have been coming out in the last 5 or so years show that removing a kidney from somebody with a tumor (even a benign tumor) has two very negative results: (1) somewhere between an excess 2 and 2.5 times chance of dying from any cause and (2) an excess 10% chance of dying in the next 10 years. Let me put it simply: the studies seem to indicate that for folks with a small kidney tumor (less than 4cm), if you take out just the tumor then about 93% will be alive in 10 years, and if you take out the entire kidney then about 83% will be alive in 10 years. Let me reiterate: the issue is not freedom from cancer, the issue is survival; the issue of being cancer-free is moot if you are dead. I have not seen studies further out than 10 years, but if you extrapolate from the curves, it appears the risk gets worse further out.
Fourth, my doctors all mentioned that kidney failure (i.e. needing dialysis after a nephrectomy) is unlikely and that kidney disease can be managed, so don't worry about this possibility. However, they failed to mention that low kidney function is not the killer to be feared, the killer is heart disease caused by low kidney function - the majority of people with kidney disease die due to cardiac and arterial causes (heart attacks, stroke, etc.). This certainly explains the excess risk I mentioned in the previous paragraph.
Fifth, I found out that the top kidney cancer centers have around a 90% success rate in partial nephrectomies for tumors less than 4cm. My doctor states he has a 60-75% success rate for the same kind of tumors. Their cancer-specific survival is identical. Furthermore, the top kidney cancer centers perform many, many more partial nephrectomy operations than my doctor does. My doctor never mentioned this, and indeed still denies that anybody could perform more operations and have a better success rate than he has.
Had I known all of this, I definitely would have spent more time, perhaps even another couple of months, finding the proper surgeon and hospital.
So, consider asking your doctor some questions. Specifically:
What is your success rate at a successful partial nephrectomy (versus a conversion to radical nephrectomy) for all tumors less than 4cm? (Note, your surgeon may want to give you his/her chances of removing your smaller tumor, but for apples-to-apples comparison purposes against the big centers like Cleveland Clinic, Mayo Clinic, Sloan Kettering, etc., be sure to get his/her success rate for all "small tumors" less than 4cm). Make sure the doctor can back up the answer with real data.
How many partial nephrectomies do you do each month/year? How many in this hospital?
If the answer for the first question is much less than 90%, consider going to a larger center. Consider that the Cleveland Clinic performs 100-200 partial nephrectomies per year - if your hospital is significantly less than this volume, and/or your doctor's share of the hospital's partial nephretomies is a lot less than the other doctors at the hospital, again consider going to a larger center or different doctor.
If your doctor has not already fully informed you of the chances of losing a kidney as a result of this operation, and/or has not fully informed you of the future risks to you of having a missing kidney, again consider going to a different doctor/center.
For a center of excellence near you, google "best urology" and perhaps check out the US News "Best Hospitals" list. There is a high-ranked urology hospital in LA.
Other questions you could ask: What is the margin size you strive for (this is a small number at centers of excellence, between 3mm and 5mm; for reference my doctor goes for 10mm). Have you done 3D radiology in advance and do you know for sure that you can remove the tumor while maintaining adequate margins? Do you use interoperative ultrasound to assist you in the operation? Do you do interoperative frozen-section pathology to verify the tumor margins? (As you might guess, the answers were all "no" for my doctor and my hospital - if my doctor can't see it with his eyes, he converts to radical.) Are you going to use a laparoscopic or open approach? (I believe that at all centers, an open partial nephrectomy is still the option that gives you the best chance of removing the tumor and preserving the kidney, has the least post-operative complications, and also preserves the most kidney function in the remaining part of the kidney. However it is more painful and more difficult to physically recover from. I went for the open approach to give myself the best chances, and still do not regret that choice.)
If your doctor has not given you this information yet, don't worry that you are too close to your operation date to get it or change your mind. Consider calling your doctor ASAP and asking for a meeting to discuss this ASAP. If you cannot get this information, or if you are not comfortable with the answers, consider postponing the operation until you are satisfied and don't worry a bit what the doctor thinks of it. I sorely wish I had done this.
Let me sum up: My doctor is patting himself on the back and thinks he did a good job; he thinks I should be happy that the cancer is almost certainly gone and leave it at that. Instead, I am extremely bitter that my doctor traded one dangerous, probably slow moving, and likely completely curable illness for another dangerous, slower moving, but not curable illness, and my doctor had not properly informed me of this possibility. I'm not denying that my doctor is talented and did a technically good job with the surgery itself, but perhaps for the year 1995 not 2010. Had I gone to a surgeon and center that was more adept, the mathematics imply that I would more than likely still have my kidney with the equivalent expectation that the cancer will not return.
You are a bunch younger than I am (and I am somewhat on the young side for kidney cancer), therefore your operation outcome potentially has even more ramifications for you than it does for me. Also, fact that your tumor seems to be multi-focal perhaps indicates that your other kidney is at increased risk for tumors in the future - if the doctors remove this kidney (as opposed to just removing the tumor) then you are at even more increased danger and have even less options if the other kidney develops a tumor in the future. Please consider double-checking that your doctor(s) really have your best interests at heart and instead aren't just lusting after the fees they'll earn having you as a patient.
Rad,
I appreciate your comments, however your throwing a lot of doubt and a bit more fear in my mind. I am already having trouble trusting anyone at this point.
They gave me the option to wait 6 months and look again, and yes my Doctor told me there is about a 5% chance I would lose the whole kidney due to bleeding ect, he said my mass is not very deep in there, about the second one, nobody has really said much about the second mass, as it is only 4mm, but I plan to ask again on my pre-op appt tomorrow. I am having laproscopic surgery.
I am not sure what else to say, you seem to be on here diagnosing me saying I have a better chance of getting a second tumor in my other kidney, how would you know that? .I do not have the type of insurance that lets me choose any center to go to, I am confident in my doctor at this point. I am supposed to be having a partial to save some of my kidney function, and I think ANYONE has the chance of losing the entire kidney, so again I thank you for your input, but putting more fear into me at this point is not helping.
Where did you have your surgery and who was your doctor?
Also you never said how you got better from your kidney disease?
Are you telling other folks on here the same advice?0 -
Not intending to scareJSR said:your throwing doubt in my mind
Rad,
I appreciate your comments, however your throwing a lot of doubt and a bit more fear in my mind. I am already having trouble trusting anyone at this point.
They gave me the option to wait 6 months and look again, and yes my Doctor told me there is about a 5% chance I would lose the whole kidney due to bleeding ect, he said my mass is not very deep in there, about the second one, nobody has really said much about the second mass, as it is only 4mm, but I plan to ask again on my pre-op appt tomorrow. I am having laproscopic surgery.
I am not sure what else to say, you seem to be on here diagnosing me saying I have a better chance of getting a second tumor in my other kidney, how would you know that? .I do not have the type of insurance that lets me choose any center to go to, I am confident in my doctor at this point. I am supposed to be having a partial to save some of my kidney function, and I think ANYONE has the chance of losing the entire kidney, so again I thank you for your input, but putting more fear into me at this point is not helping.
Where did you have your surgery and who was your doctor?
Also you never said how you got better from your kidney disease?
Are you telling other folks on here the same advice?
JSR,
I'm not trying to scare you, and I'm not trying to diagnose you. I am trying to inform you, by giving you (and future visitors to this bulletin board who have T1a tumors) information I wish I had. For example, I wish someone told me that overall survival is more important than cancer-specific survival and educated me as to the issues involved. I wish I had information about the probabilities of success of my doctor versus the pros.
Regarding the chances of a tumor in the other kidney: I don't know for sure if you have an increased chance of eventually getting a tumor in the other kidney. I know that are tumors that are multi-focal and bi-lateral by nature, for example HPRCC - look it up, you'll find statements like: "Individuals with HPRCC have an increased risk of multiple kidney tumors and an increased risk of developing tumors on both kidneys". HPRCC is rare. However, other than knowing about the relatively rare HPRCC, I have not done any research myself to find out the odds that multifocality in one kidney indicates a higher chance of tumors in the other kidney. I can't speak for you, but if it was me I would worry about that, and I would ask my doctor about that, and I would double-check his/her answers.
Regarding the chances of losing a kidney: Yes, every partial nephrectomy has a chance of not succeeding. However, that chance should be low, and the doctor and center should have around a 90% success rate for tumors less than 4cm taken as a group (i.e. T1a tumors). I sorely wish someone had told me that doctors and centers have different success rates with this operation, and had told me to verify that my doctor had a high success rate.
You said you doctor anticipates a 95% success rate - that should be a very good sign that he is confident that he can successfully remove the tumor and leave the kidney. I would still ask plenty of questions, but your doctor probably will be able to easily answer them.
Regarding getting better... I did mention that this was another story, but you asked so here it is: I did a lot of research and found that taking atorvastatin would help. It raised my CKD status from Stage 3b to Stage 2 (albeit at the Stage 2/Stage 3a border). I had to fight my doctors to get them to prescribe it. They were reluctant because no generic exists for atorvastatin, and atorvastatin is for high cholesterol. Even though I had a treatably high cholesterol, and therefore a statin is appropriate, the doctors protested that atorvastatin's side-effect of improving kidney function (i.e. raising the GFR) was "only shown by a small number of small studies", "the studies were possibly funded by the drug company and therefore biased" and therefore "the beneficial effect is not yet proven". They also disputed the dosage I requested. I persevered and demanded that they prescribe it. My response to the drug followed the curves in the research papers exactly, but my response was greater than the average (yay!), and my cholesterol numbers look great. I've seen other research that shows that kidney function is not easily subject to the placebo effect, my response has been durable, and other elements of my blood chemistry that were askew due to low kidney function all normalized, so the drug truly worked. However, like everything else, this might or might not work for a different person, so anybody with low kidney function needs to discuss this with his/her doctor.
Please note that when I refer to "doctors" in the above paragraph, this refers to an internist and nephrologist - my urologist was uninvolved. All these doctors are well regarded doctors at a good hospital that is part of a good network, but needless to say I am unimpressed with the entire group's collective ability to treat me as an individual and always do the things that are in my best interests. I have found that I am truly the best and most dependable advocate for me. That is the bottom line here - I have found that doctors by and large have a slightly different agenda - one that only loosely aligns to my best interests, so I continually need to do the work to fill in the gap.
At this point I don't want to list my doctor's name, but he works exclusively here in the Northeast. If you're in Southern California, you don't have to worry that he's your doctor.
The only advice I can give is to understand that I wish I had asked more questions and been surer of the answers before undergoing surgery. If I knew then what I know now, I would have certainly chosen a different surgeon. You might want to ask yourself, are you confident in this doctor's purported rate of success and has the doctor fully filled you in on what your outlook is if you're one of the small percentage of his patients that has to lose a kidney? But take heart, given that your doctor already told you he anticipates a 95% probability of succeeding, it seems like your doctor is likely an appropriate surgeon for the task.0 -
Sorry I got so defensiveRad1 said:Not intending to scare
JSR,
I'm not trying to scare you, and I'm not trying to diagnose you. I am trying to inform you, by giving you (and future visitors to this bulletin board who have T1a tumors) information I wish I had. For example, I wish someone told me that overall survival is more important than cancer-specific survival and educated me as to the issues involved. I wish I had information about the probabilities of success of my doctor versus the pros.
Regarding the chances of a tumor in the other kidney: I don't know for sure if you have an increased chance of eventually getting a tumor in the other kidney. I know that are tumors that are multi-focal and bi-lateral by nature, for example HPRCC - look it up, you'll find statements like: "Individuals with HPRCC have an increased risk of multiple kidney tumors and an increased risk of developing tumors on both kidneys". HPRCC is rare. However, other than knowing about the relatively rare HPRCC, I have not done any research myself to find out the odds that multifocality in one kidney indicates a higher chance of tumors in the other kidney. I can't speak for you, but if it was me I would worry about that, and I would ask my doctor about that, and I would double-check his/her answers.
Regarding the chances of losing a kidney: Yes, every partial nephrectomy has a chance of not succeeding. However, that chance should be low, and the doctor and center should have around a 90% success rate for tumors less than 4cm taken as a group (i.e. T1a tumors). I sorely wish someone had told me that doctors and centers have different success rates with this operation, and had told me to verify that my doctor had a high success rate.
You said you doctor anticipates a 95% success rate - that should be a very good sign that he is confident that he can successfully remove the tumor and leave the kidney. I would still ask plenty of questions, but your doctor probably will be able to easily answer them.
Regarding getting better... I did mention that this was another story, but you asked so here it is: I did a lot of research and found that taking atorvastatin would help. It raised my CKD status from Stage 3b to Stage 2 (albeit at the Stage 2/Stage 3a border). I had to fight my doctors to get them to prescribe it. They were reluctant because no generic exists for atorvastatin, and atorvastatin is for high cholesterol. Even though I had a treatably high cholesterol, and therefore a statin is appropriate, the doctors protested that atorvastatin's side-effect of improving kidney function (i.e. raising the GFR) was "only shown by a small number of small studies", "the studies were possibly funded by the drug company and therefore biased" and therefore "the beneficial effect is not yet proven". They also disputed the dosage I requested. I persevered and demanded that they prescribe it. My response to the drug followed the curves in the research papers exactly, but my response was greater than the average (yay!), and my cholesterol numbers look great. I've seen other research that shows that kidney function is not easily subject to the placebo effect, my response has been durable, and other elements of my blood chemistry that were askew due to low kidney function all normalized, so the drug truly worked. However, like everything else, this might or might not work for a different person, so anybody with low kidney function needs to discuss this with his/her doctor.
Please note that when I refer to "doctors" in the above paragraph, this refers to an internist and nephrologist - my urologist was uninvolved. All these doctors are well regarded doctors at a good hospital that is part of a good network, but needless to say I am unimpressed with the entire group's collective ability to treat me as an individual and always do the things that are in my best interests. I have found that I am truly the best and most dependable advocate for me. That is the bottom line here - I have found that doctors by and large have a slightly different agenda - one that only loosely aligns to my best interests, so I continually need to do the work to fill in the gap.
At this point I don't want to list my doctor's name, but he works exclusively here in the Northeast. If you're in Southern California, you don't have to worry that he's your doctor.
The only advice I can give is to understand that I wish I had asked more questions and been surer of the answers before undergoing surgery. If I knew then what I know now, I would have certainly chosen a different surgeon. You might want to ask yourself, are you confident in this doctor's purported rate of success and has the doctor fully filled you in on what your outlook is if you're one of the small percentage of his patients that has to lose a kidney? But take heart, given that your doctor already told you he anticipates a 95% probability of succeeding, it seems like your doctor is likely an appropriate surgeon for the task.
Rad,
Sorry If i came back at you kind of hard when your trying to help, I have no excuse except that I am scared out of my mind that I am going to die soon, I have a looong history of major depression and anxiety, and Hypochondria, to sum it up I was an emotional wreck before this and as you can imagine this whole situation has only exaggerated my instability....
I just want this **** out of me, yes I am worried about my age and having only parts or one kidney, but I have Kaiser and I dont have a lot of other options (so I think right..)
Again, I thank you and I wish you the best on your journey as well.
Take care0
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