New renal cell carcinoma dx

RandaLeigh said:

Thanks for the replies. I

Thanks for the replies. I follow up with my urologist on Friday. The only report I got was via phone call that stated the tumor was a grade 1 renal cell carcinoma. I have read so much about recurrence and that is  what bothers me. I feel that this was caught very early but will find out the rest on Friday. 

Good Morning!

Sorry you have had to get this news.  However, 2 cm and grade 1 sound "good" and you will likely not need any further treatment.  You will, of course, learn more on Friday.  It will be important to follow up with regular CT scans to make sure there is no spread down the road because, as you have already read, kidney cancer can come back and mestastasize.  We will pray that yours does not.  Depending on what your doctor tells you you will likely need those scans every 6 months or perhaps once a year.  As was suggested earlier, an oncologist is the best one to guide you going forward.

If it should come back you should know that there are several treatments that are quite effective and allow kidney cancer to be treated as a 'chronic disease'.  Be careful about what you read--there is a lot of outdated information in cyberspace!  A cancer diagnosis is beyond scary!!  There are good people on this board who will gladly answer questions and provide lots of encoragement.  Looking forward to hearing your GOOD report on Friday:)

todd121 said:

Hi. Welcome.

Sorry you've found yourself joining us. Can you share a more detailed reading of your pathology report? There should be staging and information about how agressive the tumor is in the pathology report. It would read something like T1NX MX Grade 2.

Usually a tumor as small as yours (2 cm is pretty small), is Stage 1. The cure rate for nephrectomy for most Stage 1 tumors is over 90%, but you need to also look at your tumor grade and other information on your pathology report. The tumor grade has been shown to be an independent indicator of prognosis (somebody, if I'm wrong, please speak up).

Did the doctor give you a prognosis?

If it were me, and even with a small tumor like this, I'd find a good medical oncologist for a follow up. Ideally they'd have some RCC experience or if someone that knows a lot about RCC is nearby, I'd choose them and get a followup appointment. Definitely still do your follow ups even if you're given a great prognosis.

Urologic oncologists are NOT medical oncologists. It took me awhile to get that. Urologic oncologists are urologists that are surgeons who specialize in removing (surgically) genitourinary tumors. Medical oncologists are specialists that normally have studied internal medicine or hematology and then have gone on to study and treat systemic cancer. Your urologist will probably want to follow you. However, I wouldn't do that unless I was low risk and there was nobody else better qualified to do it.

You're most likely in one of the better categories for having what we have. So welcome to the club. Sorry you had to go through this.

Wishing you the best,

Todd

Regarding....."Urologic oncologists are NOT medical oncologists. It took me awhile to get that. Urologic oncologists are urologists that are surgeons who specialize in removing (surgically) genitourinary tumors. Medical oncologists are specialists that normally have studied internal medicine or hematology and then have gone on to study and treat systemic cancer. Your urologist will probably want to follow you. However, I wouldn't do that unless I was low risk and there was nobody else better qualified to do it."

Having just gotten through what is happening to this new T1a stage 1, I'm still perplexed by the above statement. It still knocks me back into a corner. Went and told my family Doc to get me an Oncologist who deals with RCC. Went to see one....guy said "sorry we can't do anything for you the urologist can't do as you don't have the cancer anymore, it was cut out, the 6 month follow ups are all you do now. So your Urologist is just fine for your case"

Am I missing something here. What do I need an Oncologist for when scans are the only thing on the agenda (hopefully). I can see the need if something shows up but until then ? I'm still trying to get this.

jknorth said:

Urologist vs Oncologist

Regarding....."Urologic oncologists are NOT medical oncologists. It took me awhile to get that. Urologic oncologists are urologists that are surgeons who specialize in removing (surgically) genitourinary tumors. Medical oncologists are specialists that normally have studied internal medicine or hematology and then have gone on to study and treat systemic cancer. Your urologist will probably want to follow you. However, I wouldn't do that unless I was low risk and there was nobody else better qualified to do it."

Having just gotten through what is happening to this new T1a stage 1, I'm still perplexed by the above statement. It still knocks me back into a corner. Went and told my family Doc to get me an Oncologist who deals with RCC. Went to see one....guy said "sorry we can't do anything for you the urologist can't do as you don't have the cancer anymore, it was cut out, the 6 month follow ups are all you do now. So your Urologist is just fine for your case"

Am I missing something here. What do I need an Oncologist for when scans are the only thing on the agenda (hopefully). I can see the need if something shows up but until then ? I'm still trying to get this.

I am one of those people who had their urologist say "he got it all". I was not stage 1 grade , I was stage 3 (according to him).

At the urging of a friend, I went to an RCC oncology specialist. He immediately ordered a chest and abdominal CT. My urologist had relied on a chest x-Ray. Not only did he see mets to my lungs, he found a tumor in my remaining adrenal gland that the urologist never saw. I was immediately stage 4

I think being stage 1, the odds of something like that for you are extremely small, but having the CT scans (get scans) reviewed by someone who knows more what to look for is the goal.

if you ever do have a recurrence, the urologist will refer you to an oncologist for treatment. To me it makes sense to get Comfortable with that doctor just in case there is a recurrence. they are just more specifically trained on what to look for In your body. Do make sure that they are a RCC specialist, not just a general oncology doctor. We are very special in our disease.

you will be fine, be at peace, but do not let your guard down.

dhs1963 said:

Mets and stage 1....

I was initially diagnosed T1b Stage 1, grade 4 with sacomitoid differentiation.  Once they saw the latter, a RCC specialist would have ordered a chest CT (if it had not been done), and gone on a 3 month protocol.  instead, my urologist (not even urologic oncologist) left it at the chest x-ray...with followup in six months.  My six month review was at another facility (NIH), where they did CT...and found a 1.5 cm mass in my lung, with was a (thankfully) solitary met.   We do not know if the tumor was present at diagnosis, because a chest xray is not as good as a ct scan.  It is that simple.  I may have had metastaic disease, or the met may have showed up later. 

With that said, at NIH, I have been told the reason why it goes from T1a to T1b at 4 cm is that small tumors rairly if ever metastisize.  In the familial study at NIH (which I was part of), they will not operate on a tumor less than 3 cm....non-familial is different.  (In familial, you can expect more tumors in the kidney, and you want to keep as much nephretic tissue as possible). 

With all of this scary writing, you have a small, non-agressive tumor.  The only followup should be scans, at 3-6 months.  I would insist on a chest CT, though, rather than an xray.

 

This is exactly what this forum is for. Clarification of supposedly "minor" issues. I wish I had been here when first diagnosed. Urologist who removed my tumor said Stage 3 and he got it all. He did refer me to a local oncologist. But in 6 months I was advanced stage 4 with poor prognosis. How did this happen? Easy answer. They were not qualified to follow my case. It almost cost me my life. Still may, but my outlook is now very good. I'm fortunate that it wasn't too late. I am here because I am a patient of someone who knows what is going on.

Look at it from this angle. 1. diagnosed with kidney cancer. 2. nephrectomy. 3. ALL internet information said poor survival. 4. told there was NOTHING they could do. 5.Confirmed by other oncologists from 3 other facilities. 6 months to live.....boy did that suck.

 I gave it another shot. I found an immunologist oncologist specializing in melanoma and kidney cancer. And here I am. 2 years beyond my expected  expiration date. I am fit. I am strong.  I did my weight training this morning followed by a 2 mile jog. I have limited evidence of disease and it is stable. All because I got lucky and found someone much more qualified and knowledgable. None of my previous doctors were stupid. I doubt all their patients die. They just cannot know everything. Kidney cancer is not their daily job. That is why there are specialists. When I think of it, I realize that if any of my previous doctors had my cancer, I would bet the farm that they would find a specialist for themselves. And not one of them would feel they are betraying their office partners.

Every day I see commercials promoting the cancer centers of several hospitals. I get shivers thinking people get their care there. One size does not fit all. As health care consumers, we need to learn how to shop around. For those who join this site early in their battle, their odds improve rapidly. Knowledge is power. Listen to the voices of experience. I think most of us now see different oncologists than the one we started out with.

Randa,

The consensous on this board is that you have a follow up consultation with an Oncologist . While that may not be my opinion you have an additional layer of concern being that you got RCC way younger than usual for getting RCC. Rccc is a rare Cancer only being about 3 % of all cancers (with a good sprinkling of those 3% on this board). I suspect at 31 years old you are in the youngest 3% of  rcc club members.

When all is said and done see about the availability of getting a referral to an Oncologist although I suspect you will do just as well either way.

Icemantoo

icemantoo said:

Oncologist follow uo

Randa,

 

The consensous on this board is that you have a follow up consultation with an Oncologist . While that may not be my opinion you have an additional layer of concern being that you got RCC way younger than usual for getting RCC. Rccc is a rare Cancer only being about 3 % of all cancers (with a good sprinkling of those 3% on this board). I suspect at 31 years old you are in the youngest 3% of  rcc club members.

When all is said and done see about the availability of getting a referral to an Oncologist although I suspect you will do just as well either way.

 

Icemantoo

Keep in mind NO ONE is 100% Cancer free...  Many are in an NED or NEVD status.. (No Evidence of Disease or No Visible Evidence of Disease).  In your case I suspect most experts (not me) would say you are like 95 to 98% in the clear forever.  It is that last few percentage points that is the issue.  Kidney Cancer is sneaky... yes you most likely are in the clear.. the odds are in your favor... but still not 100%.  So in the end it is your decision...  At least make an informed decision based on as much fact as you can gather... try not to act on emotion.. easy to say, hard to do...

Good Luck..

Ron

foxhd said:

What for?

This is exactly what this forum is for. Clarification of supposedly "minor" issues. I wish I had been here when first diagnosed. Urologist who removed my tumor said Stage 3 and he got it all. He did refer me to a local oncologist. But in 6 months I was advanced stage 4 with poor prognosis. How did this happen? Easy answer. They were not qualified to follow my case. It almost cost me my life. Still may, but my outlook is now very good. I'm fortunate that it wasn't too late. I am here because I am a patient of someone who knows what is going on.

Look at it from this angle. 1. diagnosed with kidney cancer. 2. nephrectomy. 3. ALL internet information said poor survival. 4. told there was NOTHING they could do. 5.Confirmed by other oncologists from 3 other facilities. 6 months to live.....boy did that suck.

 I gave it another shot. I found an immunologist oncologist specializing in melanoma and kidney cancer. And here I am. 2 years beyond my expected  expiration date. I am fit. I am strong.  I did my weight training this morning followed by a 2 mile jog. I have limited evidence of disease and it is stable. All because I got lucky and found someone much more qualified and knowledgable. None of my previous doctors were stupid. I doubt all their patients die. They just cannot know everything. Kidney cancer is not their daily job. That is why there are specialists. When I think of it, I realize that if any of my previous doctors had my cancer, I would bet the farm that they would find a specialist for themselves. And not one of them would feel they are betraying their office partners.

Every day I see commercials promoting the cancer centers of several hospitals. I get shivers thinking people get their care there. One size does not fit all. As health care consumers, we need to learn how to shop around. For those who join this site early in their battle, their odds improve rapidly. Knowledge is power. Listen to the voices of experience. I think most of us now see different oncologists than the one we started out with.

I just read an article that clearly stated that (Ovarian) Cancer patients that go to a "better" doctor/hospital live an average of 1 year longer.  Now this was for Ovarian Cancer, but I would bet this applies to RCC as well, just the time period may be longer.? (wishful thinking..?).   I am amazed at the blase' attitude we see in some of the patients at times.  This IS a life or death matter... ouch, hate to put it in that context.. but...

Ron