New here...and qite scared..

EarthMama 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!

Blessed4sure 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!

Rad1 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.

Rad1 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.