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30 year old, diagnosed with grade 4 cRCC

sucotai
Posts: 19
Joined: Jan 2017

Hi, 

It's my first time posting here. I am a 30 year old male, diagnosed with clear cell RCC in November 2016, with radical nephrectomy done. Pathology report showed 2.2cm tumor, no lymph node involvement, but it is grade 4, with no sarcomatoid feature. I have been doing some research, and the fact that it is grade 4 scares me. To be honest, the thought of my parents at my own funeral is the worst thing I can think of.

I recently got conneted with an RCC oncologist, who recommended a full body CT scan plus bone scan for accurate staging, scheduled for tomorrow. I guess the scanxiety is partly the reason I finally posted in a cancer forum. Also, it doesn't really help that all the authors of cancer survivor blogs that I have been following have passed away recently...

Anyone know of any stories of patients with high grade RCCs?

Bay Area Guy's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

I don't have much I can share with you.  I just wanted to respond so this thread could jump back to the top so others might see it.

Dutch1's picture
Dutch1
Posts: 148
Joined: Mar 2014

The world of kidney cancer (all cancers, I guess) is full of technical information.  The way I understand your information and the way I understand mine, I believe that we're in the same boat.  I am stage 4 and grade 4.  I would think that you will be a lower stage than me, as your tumor is a lot smaller than mine was.  Also, my cancer had spread to the adrenal gland and several lymph nodes by the time this mess was discovered.  With that all said, take some cheer in the fact that I (and you have more favorable staging, is that right?) am approaching the 4-year anniversary of my surgery.  So, your life has been changed and has been threatened, but your fight has just started.  A lot of people are living with cancer.  Lots.  

For me, since the surgery, the cancer has shown up in two different spots.  Chemo and radiation has held the cancer in check such that I have just one small spot that can be found on my scans.  And, that spot has been diminishing.  My success is attributable to:  a good surgeon, a fine oncologist (timely, always available, understandable), the new (over the last 5 or so years) drugs that are available to us, regular follow up, diet (thanks to my wife's efforts -- we truly believe that diet is important) and support (prayers and otherwise) of friends and family).

I follow the blog here sort of regularly and I'd have said that there are an encouraging number of folks with high stages and/or grading who are contributing and offering proof that all is not lost for us.  

Best wishes.

Dutch

Dutch1's picture
Dutch1
Posts: 148
Joined: Mar 2014

You don't mention any evidence that the cancer has spread and what was there was relatively small.  That's a very good start for you.  I would be encouraged.  Also, you will worry less about scans once you get beyond the first ones.  Finally, your doc is being thorough so as to be sure that the risk of undetected cancer is minimized.  Thoroughness and caution are good things.  

Qt34167's picture
Qt34167
Posts: 41
Joined: Nov 2015

I want to wish you good luck and to remind you to enjoy everyday.  I have had Stage 4 RCC for over two years now and hope to have two more.  If I don't so be it but I have today!

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Grade four is somehow agrresive but the good news is that they have found it so soon. A 2 cm tumor is small, very small and it didn't have sacromatoid feature either. These are good news. My tumor was large although it was grade two so my ssurveon sent me for bone scan and ct.scan three months post surgery just to male sure everything was fine. I'm sure your Dr asks for all thoses test for the same reason. Take a deep breath and do your best to stay positive

Foroygh

 

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

sucotai,

Tumors rarely spread that small. Sending good karma that you are no exception.

 

Icemantoo

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

A 2 cm tumor probably did not spread, no matter what grade.  First, even for grade 4, sarcomitoid features is much much worse than non-sarcomitoid features.  Second, it is small.  Assuming there are no metastises (bone/ct should show that), odds are the tumor was confined to the kidney.  Tumor out means no more cancer.  Cured.  

The danger is that sometimes it spread and is not visible yet.  So, you do survailance.  

jason.2835
Posts: 337
Joined: Nov 2014

Sucotai,

I was 35; my ccrcc was Grade 2.  I asked my doctor at the follow up about the grade and he told me that a high grade may mean that he would just follow me more closely.  The single biggest prognostic factor in kidney cancer is the SIZE of the tumor.  Your tumor was actually smaller than mine.  So you are in pretty good shape.  The main thing is that it was caught early and pulled out of there through a radical so there are no margins... honestly it sounds like you got lucky and got it caught early.  

But what should probably happen is you should have some detailed scans that establish a baseline of your body and you should probably be scanned every 4-6 months for the first 2 years.  It sucks, it's expensive (unless you are somewhere with universal healthcare; no chance of that coming soon with DRUMPF in office) and it's nerve-rattling, but it is worth it.  I would also make sure you are seeing an oncologist who specializes in kidney cancer, especially high grade ones.  

- Jay

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

Grade matters -- grades 1-3 are much butter than grade 4.  Sarcomitoid (by definition grade 4) has a much worse prognosis than Grade 4 without prognosis.  

sucotai
Posts: 19
Joined: Jan 2017

Thanks to everyone for the support. I just spent an entire day at the hospital doing all the scans. Will be getting the results next week. It is bad timing since I have a couple of important interviews coming up next week...need to get my mind focused...but it's so hard...

APny's picture
APny
Posts: 1949
Joined: Mar 2014

All the best to you. The waiting for results is nerve wrecking. Hope yours is good news. Yes, grade matters but size is said to be a better predictor. And yours was small, which is very unlikely to have spread.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I hope that's your only tumor. I'm glad you are seeing an RCC oncologist and he/she is doing more tests to make sure you really are Stage 1. That's great. You want to catch any other tumors as early as  possible. The earlier you catch them, the more likely they might be operable.

Even though your tumor is Grade 4, it's small. That's good news. And that it's Stage 1 (small AND fully contained) is also good news.

Please let us know the results of your scans. You'll want a bit better follow up than other Stage 1 tumors because of the aggressive grade. You're in good hands if you've found an RCC oncologist to follow you. This additional staging is a good indication that you've found a good one. Many non-experts will just do an Xray of the lungs and a CT  of only the abdomen/pelvis. It looks like you're getting good care. This greatly increases your chances of being ok. Even if they find anything, it seems you're in good hands.

Try not to worry too much about it. Just do the next indicated step.

Todd

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

You're quite young for having this tumor. There's no rush, but you might consider doing the genetic testing to rule out genetic kidney cancer. The place that has your RCC oncologist should have a genetic counselor. The testing isn't terribly expensive. My insurance covered mine because of my family history (mom with breast cancer, grandmother with breast and lung cancer, grandfather with brain cancer). But even if they hadn't covered it, they were going to find a way to do it with my out-of-pocket being just a few hundred dollars.

The reason this is important, is, that NIH has extensively studied genetic kidney cancer. The treatments in some cases are not as severe as other kinds. I don't know much about this because I didn't have this type and I don't know the relationship between Grade 4 RCC and genetic RCC either. If you have genetic kidney cancer, it can be very helpful to know that.

Discuss it with your RCC oncologist.

Best wishes,

Todd

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