Help understanding the Fuhrman staging!

Jan, is it possible it just means 2 out of 4?

My personal feeling is that anyone who has RCC should be under the care of an oncologist regardless of stage or prognosis.

Your having any auto immune disease will likely preclude you from being able to partake in any of the immune-based therapies such as HD-IL2 or anti-PD1, etc.

growler9 said:

Multiple grade tumor.

Jan - The tumor in my left kidney was graded 2/3 and my right kidney was 2. In my case, the renal vein went into the center of my tumor. It was 6.5 cm and around the vein it graded 3 and on the periphery it graded 2.

The Fuhrman scale doesn't provide for multiple grade tumors so most Pathologists just use the higher grade even though the tumor is not totally that grade. Some Pathologists will make note of differing grades within said tumor.

With a grade 4 you should have scans for atleast 5 years. Ab/pelvic CT and chest X-ray atleast once a year.

Oncologist??? I had bi-lateral RCC stage 3 grade 2/3 and stage 1 grade 2 and don't see the need for an Oncologist. I also have 2 nodules in my left lung I'm watching.

Personal choice I reckon! As long as no red flags pop up, who the heck needs another Doc.

 

Best wishes.  Alan

I have never heard of multiple grades; that is interesting. Jan, maybe a visit to smart patients would be worth your while.

Sarah

Hi Jan,

I hope you've found the clarity you were looking for in terms of the grade of your tumor. 

You are not alone in your confusion regarding whether or not to seek the care of an oncologist.  I too, wondered if I would benefit from seeing an oncologist and I can happily say, I certainly have. 

In my case, my urologist discouraged me from seeing anyone but him for atleast the first 2 years post surgery.  According to him, the standard of care for my stage 1, grade 2 Clear Cell RCC, is a chest x-ray every 6 months.  Personally, that wasn't good enough.  I have good insurance, why am I not getting good care?  At any rate, I had my standard chest x-ray at 6 months.  Nothing remarkable.  The week after having that x-ray, I had my first appointment with my new oncologist.  That very day, he sent me for a chest/abdomen/pelvis ct (w/o contrast).  That ct showed a 1.5cm growth in my tummy, near my spleen.  It also indicated I have a swollen mediastinal lymph node (I think that node is either in the lungs or between the lungs).  So, doctor had me repeat the ct at 3 months.  The node grew from 0.9cm to 1.3cm.  The growth in my belly had no change, however I do have a 6.5cm dehiscence at the site of my incision that will likey need to be repaired.  I meet with my general surgeon in May.  So, am I happy I sought the care of an oncologist?  You bet I am.  Now, I truly feel like I am being as proactive as I can possibly be, concerning my healthcare. 

It took me a while to find a doctor because most that I called wanted patients with active cancer.  Since I had mine removed, technically I'm not a cancer patient.  But, I kept at it and it paid off.  Granted, my onc is not an RCC specialist but he's better than the ones who wouldn't give me the time of day!!  God forbid I have mets down the road, I will find someone who specializes in RCC...that should qualify me for their care!

@Nano, I did not know having an autoimmune disease would disqualify someone from being on trial drugs.  That's interesting and good to know.  Let's hope I never need those drugs.

Good luck, Jan.  For what it's worth, the piece of mind I have from seeing an oncologist is worth every bit of the hassle it was to find him.  Think about it.  So worth it!!

Sindy 

Jan4you said:

Thank you all for your help.

Thank you all for your help. I am still uncertain ( and now confused) regarding the Fuhrman 2/4 meaning so I just make an appointment with an Oncologist who sees RCC patients too. He is next door to the Urologist/Surgeon and my primary and connected via same health program so he can view my scans, Path reports etc.

Sindy always good to hear from you as well. I too will ask how auto immune diseases affect treatment if it is necessary.

I also have a rare kidney disorder called Gitelman's so my remaining kidney is slightly compromised.

I just want to follow up on this "spiritual hunch" I was getting and find out what the oncologists recommendations will be for the future. Ironically, the lady who scheduled the appt was surprised I was not referred to an oncologist in the first place, but I could tell she didn't know that much about RCC. She was going to get me in this Thursday as Oncologist will be going on Jury duty. But I now have an appt for the 24th.

Get this, she even said to call ahead and she can tell how behind in time he'll be so I don't have to wait that long. NEVER had anyone of all the docs I've seen do that..amazing as I am onl about 7 mins away.

Thank you all, shows how confusing reports can be, right?

Jan

 

jan:

great to hear that you are seeing an oncologist and getting some answers to the complicated report.

sarah

NanoSecond said:

Important Clarification

No, only immune therapy clinical trials, Sindy.  Not all clinical trials are immune therapies.  You would presumably not be excluded from any of those that do no rely on the immune system.

Of course, always check the fine print for the inclusion and exclusion criteria.

Ahhh, good to know.  Thanks for clarifying that for me.  I hope to never need to learn more on the topic of clinical trials. 

And by the way, you may be happy to know, I have significantly cut back on sweets, thanks to the helpful info you gave me a while back.  I still have a mad sweettooth, I just no longer indulge it like I did prior to learning the connection between sugar and cancer.  So, thank you!! 

Jan4you said:

Thank you all for your help.

Thank you all for your help. I am still uncertain ( and now confused) regarding the Fuhrman 2/4 meaning so I just make an appointment with an Oncologist who sees RCC patients too. He is next door to the Urologist/Surgeon and my primary and connected via same health program so he can view my scans, Path reports etc.

Sindy always good to hear from you as well. I too will ask how auto immune diseases affect treatment if it is necessary.

I also have a rare kidney disorder called Gitelman's so my remaining kidney is slightly compromised.

I just want to follow up on this "spiritual hunch" I was getting and find out what the oncologists recommendations will be for the future. Ironically, the lady who scheduled the appt was surprised I was not referred to an oncologist in the first place, but I could tell she didn't know that much about RCC. She was going to get me in this Thursday as Oncologist will be going on Jury duty. But I now have an appt for the 24th.

Get this, she even said to call ahead and she can tell how behind in time he'll be so I don't have to wait that long. NEVER had anyone of all the docs I've seen do that..amazing as I am onl about 7 mins away.

Thank you all, shows how confusing reports can be, right?

Jan

 

The urologists don't know squat about metastatic RCC. They don't treat it, and don't follow the field that closely. A knowledgable medical oncologist will know how to really follow you for metastatic RCC. For instance, most urologists will order an X-ray of the lungs and not a CT-scan, but we've heard cases of things being missed by an X-ray. Try to get someone with some RCC experience, (the best is someone who is an RCC specialist, but they are far and few between). At least find someone willing to read up on it and call/consult a specialist as needed.

In my experience, my urologist (who is an excellent surgeon, btw, and a really qualified one) told me I was cured and my prognosis was great. He wanted to do a chest X-ray and CT of abdomen and pelvis after 5-6 months (which is the minimum standard of care). I had a known spot on my femur. He didn't think it needed looking at. I went first to a medical oncologist with no RCC experience. He told me a little less rosy picture, of about a 10% chance of recurrence, but wanted to do a PET scan of the spot on my femur (at least he wanted to follow up on it) and he wanted a CT-scan of my chest. However, I consulted with my uncle, a medical oncologist with 30 years of experience who told me that I needed to see someone else, that this medical oncologist wasn't quite up on things. So he was better, but still not up to par. Then I saw 2 RCC specialists. These are guys that do research on kidney cancer and see kidney cancer patients many times a week. They independently told me my prognosis is about a 40-50% chance of recurrence. One of them actually pulled up the study that was done at UCLA to prove to me what he was saying had data behind it. He wanted a CT of my chest, abdomen and pelvis for follow up after 4 months. Regarding the spot on my femure, he had the radiologists at the cancer center look at the CT (they see a lot of cancer) and they said it was probably no cancer. Just to make sure he ordered a nuclear bone scan, which evidently is the correct test for spotting RCC on bone, and not a PET scan.

I feel much better being followed by docs that really know RCC and since there are several within 1-2 hours drive, I decided to do that. My urologist did a great job and I'm thankful to him. But if my cancer returns, I want a different specialist involved. The one that will be responsible to take care of the problem. I'm an engineer, and I've always found that people do a better job when they are invested in the result and not just going to pass the problem on to someone else.

Best of luck to you.

Todd