Oncology?
Hi all, I had an incidental finding of a complex mass on my right kidney, "likely RCC", in early May, while working in OH. I immediately flew home to Oklahoma thinking I would see an oncologist but was instead advised to see a urologist. I'm 2 weeks post-op following a radical nephrectomy. A partial was not an option given the location of the tumor. The Dr said being that I'm 48 years old, he felt a radical was less threatening than if I were 20 something. I happen to feel like 48 is young, but whatever 
. Recovery is going good. At my 1 week post-op appt, Dr told me the RCC was Clear Cell, T1B level 2. He said I'd have blood work and chest x-rays at next appt, which will be Tuesday the 18th. My urologist, according to the man that referred me and everything I've read about him, is top notch, specializing in kidney transplants. He is highly respected and I feel very lucky to be in his care. My only complaint is that, although his bedside manners are fine and he is certainly nice enough, I don't feel like he gives me enough information in regards to what I can expect from here on out. I asked him what stage my cancer was and that is when he told me it's a T1B, level 2. What the heck does that mean? I never got a straight answer. He talks to me like I've had cancer before and ought to know. He tends to be in and out of the room so fast that my questions go unanswered. Do I need an oncologist? What stage was my cancer? And, now that it's been removed, does that mean I'm cancer free? I googled T1B, and it seems to be stage 1 but, I don't know what level 2 means. I asked him if he removed lymph nodes for testing and I'm pretty sure he said that he did not. I thought for sure that would be standard procedure. And why, if the cancer was in my kidney, am I having chest x-rays at follow up? Dr said I could return to work in Ohio the first week in July. That's great! But not having answers to my questions makes it hard to know if I can expect to be flying back and forth between OH and OK for follow up appts and if so, how often? A lot of questions, I know. Greatly appreciate any advise/feedback!!
Comments
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RCC Stage and Gradedhs1963 said:Most probably stage 1
Your tumor is stage 1. Furman grade 2. In general, the lower the stage, the better, and the lower the grade the better.
You are most likely cured.
Hi TwinThings,
Sorry you've had to join this club, but glad that, if you had to, you found us. This is a great group of folks that will be very supportive while you deal with the roller coaster of feelings you are now on. Rather than go into a long explanation about tumor staging and grade, I will just give you a couple of useful links that explain a lot. I see your news as good news. Try not to panic. I think you need a doctor that is willing to give you more time.
In a nutshell, the explanation of T1b is :
"The tumor is larger than 4 cm but not larger than 7 cm across and is only in the kidney".
That last part is REAL important, meaning if the kidney is out, hopefully, all of the cancer went with it.
The "level 2" means Grade 2. Grade of renal cell carcinoma (RCC) runs from 1 to 4. The lower the grade the better. It indicates how closely the tumor cells resemble normal kidney cells, so you are on the better side of that scale.
http://www.cancer.org/cancer/kidneycancer/detailedguide/kidney-cancer-adult-staging
http://www.kidneycancer.org/knowledge/learn/about-kidney-cancer/
Just take a breath. You will get through this. Know that we are here to help all we can.
Kathy
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DOCTORSdhs1963 said:Most probably stage 1
Your tumor is stage 1. Furman grade 2. In general, the lower the stage, the better, and the lower the grade the better.
You are most likely cured.
Twinthings,
Some doctors are better communicators than others. Write your questions down and have him explain everything.
Second guessing your doctor and his post op follow up is above my pay grade. I am aware though that a chest xray is standard follow up procedure to determine if yout kidney cancer metasticised as the first place this would show up is the chest.
As far as seeing an Oncologist first, my opinion would be to get the kidney resolved first unless you had a coplecated case where the initial opinion of the oncologist would be helpfull. Others on this board have honest differences of opinion on this issue.
Icemantoo
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RCC stage and GradeNewDay said:RCC Stage and Grade
Hi TwinThings,
Sorry you've had to join this club, but glad that, if you had to, you found us. This is a great group of folks that will be very supportive while you deal with the roller coaster of feelings you are now on. Rather than go into a long explanation about tumor staging and grade, I will just give you a couple of useful links that explain a lot. I see your news as good news. Try not to panic. I think you need a doctor that is willing to give you more time.
In a nutshell, the explanation of T1b is :
"The tumor is larger than 4 cm but not larger than 7 cm across and is only in the kidney".
That last part is REAL important, meaning if the kidney is out, hopefully, all of the cancer went with it.
The "level 2" means Grade 2. Grade of renal cell carcinoma (RCC) runs from 1 to 4. The lower the grade the better. It indicates how closely the tumor cells resemble normal kidney cells, so you are on the better side of that scale.
http://www.cancer.org/cancer/kidneycancer/detailedguide/kidney-cancer-adult-staging
http://www.kidneycancer.org/knowledge/learn/about-kidney-cancer/
Just take a breath. You will get through this. Know that we are here to help all we can.
Kathy
Kathy,
Thank you so much for taking time to help me understand this. I feel better already! I will use the links you've so kindly provided, to continue to learn as much as I can about clear cell RCC. I am so thankful my cancer was caught early. And from what I've read, I feel confident that I am cured. My mom and dad both died of cancer (exactly 9 months apart) in their early 60's. Mama's was unclear as to the primary source, as it was found throughout, she received no treatment and died shortly thereafter. Daddy's was colon, he died 5 weeks after diagnosis. So, I knew it was just a matter of time before I too, would receive my own diagnosis. I never imagined it would be kidney cancer nor did I think a cure would come so quick and easy. My parents were uninsured and poor. They didn't go to the doctor when sick nor did they receive preventative care. I have read that this particular kidney cancer is genetic. Makes me wonder if mama's primary tumor was kidney cancer that spread. I'll never know, but it breaks my heart to think that, if it was, it could have so easily been treated...if only she could have afforded to walk in to the doctor's office rather than waiting till she had to be forcefully taken by ambulance. All I can do now is make sure cancer doesn't claim my life too.
Thanks again for your time,
Sindy
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Doctorsicemantoo said:DOCTORS
Twinthings,
Some doctors are better communicators than others. Write your questions down and have him explain everything.
Second guessing your doctor and his post op follow up is above my pay grade. I am aware though that a chest xray is standard follow up procedure to determine if yout kidney cancer metasticised as the first place this would show up is the chest.
As far as seeing an Oncologist first, my opinion would be to get the kidney resolved first unless you had a coplecated case where the initial opinion of the oncologist would be helpfull. Others on this board have honest differences of opinion on this issue.
Icemantoo
Thanks, icemantoo! I appreciate the feedback but I'm a little confused. If my RCC was stage 1, doesn't that, in and of itself, imply it hasn't spread? And if I am considered cured because the entire tumor was removed with the kidney, then doesn't it stand to reason, it isn't there to spread? I know, these are questions for my doctor, but I've read many of your posts and you certainly seem knowledgeable.
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Stage 1 means no evidence of spreadingtwinthings said:Doctors
Thanks, icemantoo! I appreciate the feedback but I'm a little confused. If my RCC was stage 1, doesn't that, in and of itself, imply it hasn't spread? And if I am considered cured because the entire tumor was removed with the kidney, then doesn't it stand to reason, it isn't there to spread? I know, these are questions for my doctor, but I've read many of your posts and you certainly seem knowledgeable.
The doctors can not say for sure that there is nothing lurking inside. Small objects might be missed on the scan. But, once they got the tumor out, there is no evidence of disease. That is really good news. You still need the follow up scans, but odds are, you will be fine. like better than 9-1 odds. And Furman grade 2 means the tumor was not that agressive.
Doctors tend to be concervative. Those of us with advanced cancer want to hear no evidence of disease (NED). We will not here cured, but we might be. We will know in 5-10 years.
You will need to be followed on this for the rest of your life, but that should be a long time.
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Cancer Free?dhs1963 said:Stage 1 means no evidence of spreading
The doctors can not say for sure that there is nothing lurking inside. Small objects might be missed on the scan. But, once they got the tumor out, there is no evidence of disease. That is really good news. You still need the follow up scans, but odds are, you will be fine. like better than 9-1 odds. And Furman grade 2 means the tumor was not that agressive.
Doctors tend to be concervative. Those of us with advanced cancer want to hear no evidence of disease (NED). We will not here cured, but we might be. We will know in 5-10 years.
You will need to be followed on this for the rest of your life, but that should be a long time.
I thought I would try to help with a few more of your questions.
It is true that the fact that your tumor was stage 1 means there was no evidence that it has spread, but that is no guarantee that it won't show up later. RCC can spread directly to adjacent organs, which yours hasn't. But it can also spread via the bloodstream or the lymph system. Unfortunately, there is no test to know if it has and is lying dormant. It can be there and not manifest as a tumor until years later. This is why you need to have scans although there is currently no evidence of disease.
The reason you would get chest xrays and scans of the pelvis in addition to the abdomen is that those are common locations for it to spread. It can actually spread anywhere, including the brain, but more often the lungs, bones, or liver.
I also had assumed that removing lymph nodes were standard procedure, but apparently not. My surgeon did not and said he only does so if he sees something that makes him suspect it has spread..
You said that yours was clear cell which is the most common type. You state that you read that it is usually hereditary but that actually is not true. Only a very small percentage are hereditary, but of course you might be in that small percentage especially considering your family history.
Given the stage and grade of yours, I would be very optimistic, but still be diligent about getting followup scans.
Hope this helps.
Kathy
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Surgery & Oncology
From everything I have read ( which has been entirely too much) your chances of being cured are excellant. It is great that it was found early and was not what is commonly said to be an "agressive " tumor to start with. Still you need to be monitored and I would consult with an oncologist specializing in kidney cancer.
I believe my urologist is an skilled and effective surgeon but I had a same experience with her as you did after the surgery. I think generally oncologists are more experienced in not only kidney cancer but in the health of their patients. My oncologist changed my surveillance plan generally increasing the frequency of blood tests and increasingly the scope of my scans at somewhat longer intervals. He spends time with me to answer all my questions and discuss my treatment plan. I don't want to trash my surgeon although the size of her ego was a bit much........it's just that I feel my Oncologist is well.........a Doctor.
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I agree, Oncologist, kidney specialistDonMiller said:Surgery & Oncology
From everything I have read ( which has been entirely too much) your chances of being cured are excellant. It is great that it was found early and was not what is commonly said to be an "agressive " tumor to start with. Still you need to be monitored and I would consult with an oncologist specializing in kidney cancer.
I believe my urologist is an skilled and effective surgeon but I had a same experience with her as you did after the surgery. I think generally oncologists are more experienced in not only kidney cancer but in the health of their patients. My oncologist changed my surveillance plan generally increasing the frequency of blood tests and increasingly the scope of my scans at somewhat longer intervals. He spends time with me to answer all my questions and discuss my treatment plan. I don't want to trash my surgeon although the size of her ego was a bit much........it's just that I feel my Oncologist is well.........a Doctor.
I agree with DonMiller. I also had an excellent surgeon. I went to an oncologist "just to be comfortable" with an oncologist just in case I had a recurrence in the future. He immediately picked up an adrenal gland tumor the surgeon missed. I had an MRI on my brain and a bone scan To see if it had spread anywhere else.
I had a much larger tumor, and we knew it had already spread to the adrenal gland we removed. So I was jumped from stage III to stage IV and immediately started discussing treatment options.
It sounus like the advice to find a good kidney oncologist you are comfortable with will bebefit you the most. Take a look at a recent post on depression from MDCinSC. He ( and many others like you) will still have mental healing and needs even if you have No Evidence odd Disease- NED. My current oncologist is a kidney specialist and when I asked him about getting a second opinion, he said please do, but make sure it is a kidney specialist, or don't bother. I would think that applies as well.
Again, doesn't sound like you need it right away, but another set of trained eyes never hurt.
Hope it helps, glad you caught it so early!
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Darron said:
I agree, Oncologist, kidney specialist
I agree with DonMiller. I also had an excellent surgeon. I went to an oncologist "just to be comfortable" with an oncologist just in case I had a recurrence in the future. He immediately picked up an adrenal gland tumor the surgeon missed. I had an MRI on my brain and a bone scan To see if it had spread anywhere else.
I had a much larger tumor, and we knew it had already spread to the adrenal gland we removed. So I was jumped from stage III to stage IV and immediately started discussing treatment options.
It sounus like the advice to find a good kidney oncologist you are comfortable with will bebefit you the most. Take a look at a recent post on depression from MDCinSC. He ( and many others like you) will still have mental healing and needs even if you have No Evidence odd Disease- NED. My current oncologist is a kidney specialist and when I asked him about getting a second opinion, he said please do, but make sure it is a kidney specialist, or don't bother. I would think that applies as well.
Again, doesn't sound like you need it right away, but another set of trained eyes never hurt.
Hope it helps, glad you caught it so early!
Thanks for the advice, Darron. I asked my surgeon if I needed an oncologist and he said no, but what you said makes sense. I think I'll seek one out before heading back to work...just to be safe. I feel so petty, worrying like I do about my situation, when I hear from people like you who are certainly in a worse predicament than me. But, it sounds like you are in good hands and doing all the right things to ensure you get the best care.
Sindy
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DonMiller said:
Surgery & Oncology
From everything I have read ( which has been entirely too much) your chances of being cured are excellant. It is great that it was found early and was not what is commonly said to be an "agressive " tumor to start with. Still you need to be monitored and I would consult with an oncologist specializing in kidney cancer.
I believe my urologist is an skilled and effective surgeon but I had a same experience with her as you did after the surgery. I think generally oncologists are more experienced in not only kidney cancer but in the health of their patients. My oncologist changed my surveillance plan generally increasing the frequency of blood tests and increasingly the scope of my scans at somewhat longer intervals. He spends time with me to answer all my questions and discuss my treatment plan. I don't want to trash my surgeon although the size of her ego was a bit much........it's just that I feel my Oncologist is well.........a Doctor.
Thanks DonMiller! I am looking up Oncology in the OKC area right away. Hopefully I'll find someone who's caring, compassionate and truly interested in saving lives. Unfortunately, that's not always the case.
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NewDay said:
Cancer Free?
I thought I would try to help with a few more of your questions.
It is true that the fact that your tumor was stage 1 means there was no evidence that it has spread, but that is no guarantee that it won't show up later. RCC can spread directly to adjacent organs, which yours hasn't. But it can also spread via the bloodstream or the lymph system. Unfortunately, there is no test to know if it has and is lying dormant. It can be there and not manifest as a tumor until years later. This is why you need to have scans although there is currently no evidence of disease.
The reason you would get chest xrays and scans of the pelvis in addition to the abdomen is that those are common locations for it to spread. It can actually spread anywhere, including the brain, but more often the lungs, bones, or liver.
I also had assumed that removing lymph nodes were standard procedure, but apparently not. My surgeon did not and said he only does so if he sees something that makes him suspect it has spread..
You said that yours was clear cell which is the most common type. You state that you read that it is usually hereditary but that actually is not true. Only a very small percentage are hereditary, but of course you might be in that small percentage especially considering your family history.
Given the stage and grade of yours, I would be very optimistic, but still be diligent about getting followup scans.
Hope this helps.
Kathy
Thanks again, Kathy. Your words are very reassuring. This is probably stupid on my part, but here goes...what I actually read was that clear cell is a genetic mutation. I took that to mean the same thing as being hereditary. After all, aren't genetics and heredity the same thing? I also read that clear cell is the most aggressive type but several posts I've read on this forum, dispute that. At any rate, I think it makes good sense to seek the care of an oncologist. I just thought oncologists were for people who have cancer. Mine was removed so I technically don't have cancer, right?! It's sad that I have to rely on sites such as this to answer my questions and learn about my illness but at the same time, I feel so blessed to have found you all. I kept seeing "NED" as I'd read through some of the posts. I had no idea what that stood for until today, thanks to this forum.
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dhs1963 said:
Stage 1 means no evidence of spreading
The doctors can not say for sure that there is nothing lurking inside. Small objects might be missed on the scan. But, once they got the tumor out, there is no evidence of disease. That is really good news. You still need the follow up scans, but odds are, you will be fine. like better than 9-1 odds. And Furman grade 2 means the tumor was not that agressive.
Doctors tend to be concervative. Those of us with advanced cancer want to hear no evidence of disease (NED). We will not here cured, but we might be. We will know in 5-10 years.
You will need to be followed on this for the rest of your life, but that should be a long time.
Thanks for your reply, dhs. It was most helpful. I'd been wondering what 'NED' stood for and now I know. I'm sorry to hear your's is advanced stage. I cannot imagine how scary that must be for you and your family. You are very kind to help newbies, like myself, understand this disease. I really hadn't thought about being followed the rest of my life. I figured if all was well after 5 years, I'd be done with this and could put it behind me.
I wish the best for you, and hope "NED" will be your reality.
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You will findtwinthings said:Thanks DonMiller! I am looking up Oncology in the OKC area right away. Hopefully I'll find someone who's caring, compassionate and truly interested in saving lives. Unfortunately, that's not always the case.
That finding a good oncologist despite what surgeons say, is common advice here. Also, remember that it is your life. Never think back that you coulda, shoulda, woulda. Do it for you and your family. Especially the little one. Think of it this way, "Can you afford the time for meeting an oncologist?" Then do it. Good luck.
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easier said than donefoxhd said:You will find
That finding a good oncologist despite what surgeons say, is common advice here. Also, remember that it is your life. Never think back that you coulda, shoulda, woulda. Do it for you and your family. Especially the little one. Think of it this way, "Can you afford the time for meeting an oncologist?" Then do it. Good luck.
foxhd, thanks so much for the feedback. That little one is my precious grandson and I plan on being around to see him grown. Having said that, it's not so easy getting in to see an oncologist. I don't have a referral! I know, that sounds crazy but that's what I've been told. My surgeon isn't going to refer me because he doesn't think I need one. So, unless I can get my family doc to refer me, I may be SOL.
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Surgeontwinthings said:Thanks for the advice, Darron. I asked my surgeon if I needed an oncologist and he said no, but what you said makes sense. I think I'll seek one out before heading back to work...just to be safe. I feel so petty, worrying like I do about my situation, when I hear from people like you who are certainly in a worse predicament than me. But, it sounds like you are in good hands and doing all the right things to ensure you get the best care.
Sindy
We have a family friend that referred us to my current oncologist. We were amazed that my urologist was not very willing to refer me to the oncologist we requested. Be your own advocate.
Don't feel petty about the worry. you just had major surgery. Turn what I hear as frustration about what to do next inthe the drive to get it done. Do not rest on the topic into you are satisfied with the answer. I am very lucky and found a great doctor 20 minutes from home. I did drive 2 1/2 hours for a second opinion. It did nothing but reinforce that my doctor was my first choice,but in the big picture, it boosts my confidence in my doctor and the treatment I am receiving.
The friend that referred me just completed her five year scan without disease. She was a phase I complete nefrectomy.
Keep us posted, here is a lot more knowledge on this site that is useful. Seems others is always someone in a similar situation. It helps to hear you are not alone.
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I've an ideatwinthings said:easier said than done
foxhd, thanks so much for the feedback. That little one is my precious grandson and I plan on being around to see him grown. Having said that, it's not so easy getting in to see an oncologist. I don't have a referral! I know, that sounds crazy but that's what I've been told. My surgeon isn't going to refer me because he doesn't think I need one. So, unless I can get my family doc to refer me, I may be SOL.
Don't ask for a referral. Tell them to give you one. You are the boss...And you are right. I also want to live the most to see my 2 granddaughters grow up. They have no dad. I'm their poppy. Best thing I've got going.
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your family doctortwinthings said:easier said than done
foxhd, thanks so much for the feedback. That little one is my precious grandson and I plan on being around to see him grown. Having said that, it's not so easy getting in to see an oncologist. I don't have a referral! I know, that sounds crazy but that's what I've been told. My surgeon isn't going to refer me because he doesn't think I need one. So, unless I can get my family doc to refer me, I may be SOL.
If you have been a patient awhile and have a good relationship your family doctor will have no problem granting a referral.. I say this because we recently had to switch Family Doctors and the new offered a referral if needed..your Family Doc should be as worried about your piece of mind as they are about your physical health..where it sounds like your surgeon.. was not..stories like yours make me very glad we ended up where we did when this all started!. Chucks Urologist/surgeon brought the Medical Oncllogist on board early..so we would know them..this is evidently a normal practice of his..we later found out it's not the normal practice of all..having someone else look should not be a problem for any Doctor..esp if it will give the patient confidence and piece of mind..hope all goes well for you and am really glad you had a great out come from surgery stories like yours make me smile (the successful part and the diagnosis part lol) not the other! Hugggss
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Hi twinthings, I know thistwinthings said:easier said than done
foxhd, thanks so much for the feedback. That little one is my precious grandson and I plan on being around to see him grown. Having said that, it's not so easy getting in to see an oncologist. I don't have a referral! I know, that sounds crazy but that's what I've been told. My surgeon isn't going to refer me because he doesn't think I need one. So, unless I can get my family doc to refer me, I may be SOL.
Hi twinthings,
I know this is a very frightening time for you, a cancer diagnosis is very difficult to deal with. The main thing is that they caught your tumour early, and your surgeon has arranged follow up tests so quickly. I had a partial at the end of March, mine was T1b Grade 3. In Europe if the tumour was removed with clear margins(no signs of spreading) the follow up is 6 months later.
It sounds as if you have a good doctor, maybe not blessed with the best of people skills though. He may be more forthcoming after your X-rays. Your doctor should be able to put your mind at rest after your tests. Make sure you have all your questions ready for your appointment, and ask that he clears up all your concerns. He should not take it personally if you request a referral letter for an Oncologist, I am sure if he was in your shoes he would do the same.
We can only ever consider ourselves to be cancer free, not cured. Doctors can't make that sort of prediction, so it is very important to keep up with your scans, even after five years. I had a recurrence my first op was 10 yrs ago, so I know first hand that we can't be complacent. Look at the scans as a form of preventative medicine.
All the best
Djinnie x
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Hi TwinThings!
I'm a little late to this, but I got away for the Father's Day weekend! I took a much needed respite from things.
I understand your concerns. My own was T1b Fuhrman Grade 3. As a result, and because of other things too detailed to explain regarding my history with radiation, I am getting bloodwork and chest xrays every 90 days with CT scans every anniversary. Compared to others here, I am quite lucky; virtualy cured, if not literally by comparison.
According to my reading, the difference regarding followups between grade 2 and grade 3 is the incidence of recurrence. With Grade 2, my reading says you are four times less likely to have recurrence than I.
That said, that is no reason to sit back and wait til you are symptomatic. Stay active, stay aggressive, get the oncologist and hold on until you get straight answers.
If your Urologist or Family Physician is uncomfortable with you getting an oncologist's opinion, then there is something wrong with THEM. Do what is right for you. Enjoy that little one! I have more of those grandbabies than I can count, it seems, and I love every one of them! I'm astonished my self, but I even have a GREAT grand daughter. I'mnot sure how that happened! I am far too young for that!
PAX,
Michael
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