Recently Diagnosed?

Texas_wedge · February 2013

Mimir said:
Pathology
8 weeks after surgery, I finally got my pathology report. I was told that I have mainly chromophobe RCC which is apperently really rare for someone as young as I am. The pathologist at NIH had only ever seen 2 other cases similar to mine. The bad news is that it is high grade and they discovered that tumor had grown into a vein (though not a large vein). Even though the chromophobe seems more aggressive than normal, there is no evidence of sarcomatoid features. I will have scans every three months for the next couple of years to be watched closley.

Path report

We seem to be getting more and more unusual cases coming up, but maybe that's just because we are learning more and seeing more? Chromophobe is the slowest growing subtype which is why it is typically detected only in much older patients (like myself) by which time it is generally much larger than the average RCC tumor and has presented no warning signs when younger. You're exceptional in having a tumor as large as 7 cm at such a very young age.

It's excellent news that it displays no sarcomatoid features - growing so fast, it would probably have started turning sarcomatoid before long and sarcomatoid chromophobe is extremely bad news (I'm the only one I know of who has it and is still alive).

You said your histology is "mainly chromophobe" so presumably the aggressiveness is due to the other component(s) - have you been told what you have in addition to chromophobe? The normal grading system (Fuhrman) doesn't apply to chromophobe so your grading may be meaningless, unless it relates particularly to the other component.

It's good that you will be closely monitored for the next couple of years. You will get a more understanding reception here than you're likely to get from friends and family, so 'stick with us kid'!

NanoSecond · February 2013

Mimir said:
Pathology
8 weeks after surgery, I finally got my pathology report. I was told that I have mainly chromophobe RCC which is apperently really rare for someone as young as I am. The pathologist at NIH had only ever seen 2 other cases similar to mine. The bad news is that it is high grade and they discovered that tumor had grown into a vein (though not a large vein). Even though the chromophobe seems more aggressive than normal, there is no evidence of sarcomatoid features. I will have scans every three months for the next couple of years to be watched closley.

Chromophobe

I too have chromophobe type cells. Between you, me, and Tex, if this keeps up we are going to have to change its status from "very rare" to "medium rare".

My tumor, when it was finally detected, was 11cm. Since as Tex pointed out this type is usually a very slow growing (perhaps only 1cm/year) it is possible that I had it growing in me for over 10 years.

It turns out there are many things that you can do to minimize the chances of developing future metastases. They revolve around understanding the role of proper nutrition and diet in dealing with this disease. If you are interested you might find the book, "Life Over Cancer" by Dr. Keith I. Block very helpful.

Best wishes,

-NanoSecond (Neil)

Texas_wedge · February 2013

NanoSecond said:
Chromophobe
I too have chromophobe type cells. Between you, me, and Tex, if this keeps up we are going to have to change its status from "very rare" to "medium rare".

My tumor, when it was finally detected, was 11cm. Since as Tex pointed out this type is usually a very slow growing (perhaps only 1cm/year) it is possible that I had it growing in me for over 10 years.

It turns out there are many things that you can do to minimize the chances of developing future metastases. They revolve around understanding the role of proper nutrition and diet in dealing with this disease. If you are interested you might find the book, "Life Over Cancer" by Dr. Keith I. Block very helpful.

Best wishes,

-NanoSecond (Neil)

Tumor growth rate

Neil, there is a wide range of rate, between patients (and some of the disposing factors can, perhaps be guessed at!) and it is simplistic to assume that the growth is linear.

However, except with cases like Mimir's (and, generally, younger patients with the rarer sub-types) growth of primaries is nowhere near as fast as 1cm/year. The best data to date (unless I've missed some authoritative recent study) shows that the typical rate is around one third of a cm/yr except with chromophobe - the slowest growing, with a typical rate reckoned to be more like a quarter of a cm/yr. So, for you and me we've probably been developing this malaise for somewhat more like half our lives. Mimir's case is different.

Also, it may be the case that the growth can be a long way from linear and that it's slow for a long while and then accelerates markedly. That was almost certainly the case with mine and is doubtless related to the sarcomatous de-differentiation which (aside from issues of the inherent inaccuracy of imaging, even with the latest generation of hybrid CT scanners) seems to have led to my primary going from around 7 or 8 cm to 9 cm in a few short weeks which would represent something of the order of a doubling of volume in less than 2 months. (The ab wall met I'm now dealing with went from invisible to 5 cm in a couple of months or so, after my path had become sarcomatoid.)

There is another angle on this which may make all the above look to be nonsense. I suggested to my Urologist that tumours ought to be measured in volume terms, not longest axis, or area, not knowing that he had proposed just that at UK level quite a while ago. However, we all know the inertia within the medical establishment, no matter how persuasive a case can be made. That change might throw a new light on the topic. I imagine there is entirely adequate retrospective data to clarify the issue!

NanoSecond · February 2013

Texas_wedge said:
Tumor growth rate
Neil, there is a wide range of rate, between patients (and some of the disposing factors can, perhaps be guessed at!) and it is simplistic to assume that the growth is linear.

However, except with cases like Mimir's (and, generally, younger patients with the rarer sub-types) growth of primaries is nowhere near as fast as 1cm/year. The best data to date (unless I've missed some authoritative recent study) shows that the typical rate is around one third of a cm/yr except with chromophobe - the slowest growing, with a typical rate reckoned to be more like a quarter of a cm/yr. So, for you and me we've probably been developing this malaise for somewhat more like half our lives. Mimir's case is different.

Also, it may be the case that the growth can be a long way from linear and that it's slow for a long while and then accelerates markedly. That was almost certainly the case with mine and is doubtless related to the sarcomatous de-differentiation which (aside from issues of the inherent inaccuracy of imaging, even with the latest generation of hybrid CT scanners) seems to have led to my primary going from around 7 or 8 cm to 9 cm in a few short weeks which would represent something of the order of a doubling of volume in less than 2 months. (The ab wall met I'm now dealing with went from invisible to 5 cm in a couple of months or so, after my path had become sarcomatoid.)

There is another angle on this which may make all the above look to be nonsense. I suggested to my Urologist that tumours ought to be measured in volume terms, not longest axis, or area, not knowing that he had proposed just that at UK level quite a while ago. However, we all know the inertia within the medical establishment, no matter how persuasive a case can be made. That change might throw a new light on the topic. I imagine there is entirely adequate retrospective data to clarify the issue!

Tumor Growth Rate

Many thanks Tex,

I have just learned a whole bunch of things I was not aware of.

I certainly agree that there is little related to mRCC progression that actually works linearly.

And your (and your Urologists) concept of measuring tumor volume makes infinitely more sense to me than current practice.

All excellent points.

Mimir · February 2013

NanoSecond said:
Chromophobe
I too have chromophobe type cells. Between you, me, and Tex, if this keeps up we are going to have to change its status from "very rare" to "medium rare".

My tumor, when it was finally detected, was 11cm. Since as Tex pointed out this type is usually a very slow growing (perhaps only 1cm/year) it is possible that I had it growing in me for over 10 years.

It turns out there are many things that you can do to minimize the chances of developing future metastases. They revolve around understanding the role of proper nutrition and diet in dealing with this disease. If you are interested you might find the book, "Life Over Cancer" by Dr. Keith I. Block very helpful.

Best wishes,

-NanoSecond (Neil)

Chromophobe

I have been trying to read up on pediatric RCC since, knowning the growth rate of RCC, I imagine I have had the tumor from when I was 12-13 or probably even younger. Most of the literature I find (and there isn't much) has one, if any, children who have chromophobe pathology. It seems that in the rare subset of pediatric RCC, chromophobe RCC is even rarerest. At least NIH is having a field day with me. Since chromophobe grows so slowly, I wonder how it can reach such a large (7.1cm+) size in pediatric cases. Is it possible that pediatric chromophobe RCC is different than the adult chromophobe?

Texas_wedge · February 2013

Mimir said:
Chromophobe
I have been trying to read up on pediatric RCC since, knowning the growth rate of RCC, I imagine I have had the tumor from when I was 12-13 or probably even younger. Most of the literature I find (and there isn't much) has one, if any, children who have chromophobe pathology. It seems that in the rare subset of pediatric RCC, chromophobe RCC is even rarerest. At least NIH is having a field day with me. Since chromophobe grows so slowly, I wonder how it can reach such a large (7.1cm+) size in pediatric cases. Is it possible that pediatric chromophobe RCC is different than the adult chromophobe?

Chromophobe in the young

I thought hard about whether it was wise to send you this link but you are plainly a quester after knowledge. Also, you have been astute enough to work out something this recent paper from Singapore apparently establishes. Perhaps you've even found the study?

"Conclusion: Younger patients were more likely to have non-clear cell RCC with higher disease recurrence and lower OS. They should not be assumed to have similar features and outcomes as screen-detected early RCC in older patients"

The paper is somewhat ominously entitled : "Renal Cell Carcinoma in Young Patients is Associated with Poorer Prognosis"

http://www.annals.edu.sg/pdf/40VolNo9Sep2011/V40N9p401.pdf

Don't be too phased by the title. There's not a wealth of data and most of the knowlege we currently have is based on old data. Hence the power of the slogan coined by one of our notable members here (Donna Lee) that "we are the crew who are changing those numbers". I'm sure you're intending to be in the forefront of us in changing those numbers!

The more you can learn, the better equipped you'll be and you've already shown you're up for it - good for you!!

todd121 · February 2013

Mimir said:
Pathology
8 weeks after surgery, I finally got my pathology report. I was told that I have mainly chromophobe RCC which is apperently really rare for someone as young as I am. The pathologist at NIH had only ever seen 2 other cases similar to mine. The bad news is that it is high grade and they discovered that tumor had grown into a vein (though not a large vein). Even though the chromophobe seems more aggressive than normal, there is no evidence of sarcomatoid features. I will have scans every three months for the next couple of years to be watched closley.

Pathology

Hi Mimir,

Thanks for updating us. Why did it take 8 weeks for you to get your pathology report? I'm not very familiar with chromophobe type, but do they stage it in the same manner as clear cell? So what stage did they say for you? And have you had other imaging done besides your abdomen? What dos it mean to be a "high grade"? Are you talking about Fuhrman grade?

How are you feeling?

I wish you well. Sorry that you're having this difficulty while trying to do school. I hope you're able to pay attention to your health. I know school can be stressful all by itself. That much I can remember from 30 years ago!

All the best,

Todd

Mimir · February 2013

todd121 said:
Pathology
Hi Mimir,

Thanks for updating us. Why did it take 8 weeks for you to get your pathology report? I'm not very familiar with chromophobe type, but do they stage it in the same manner as clear cell? So what stage did they say for you? And have you had other imaging done besides your abdomen? What dos it mean to be a "high grade"? Are you talking about Fuhrman grade?

How are you feeling?

I wish you well. Sorry that you're having this difficulty while trying to do school. I hope you're able to pay attention to your health. I know school can be stressful all by itself. That much I can remember from 30 years ago!

All the best,

Todd

Path

It apparently took 8 weeks because the pathologist was having a hard time figuring it out. Apparently some parts of it seemed benign at first, so the pathologist compared slides from my biopsys to other parts of the tumor and eventually came up with chromophobe. I think another reason it took so long is goverment bureaucracy/reasearch protocol at NIH. The doctor didn't give me a stage (hopefully there will be more specifics on the written report) but given the size and involvemnt with a vein I think it should be between a T2-T3. The high grade refers to the Fuhrman grade. I had a full body workup done at NIH pre-surgery. The only questionable finding was a 3-4mm nodule on my lung. The doctors didn't seem to concenered and I will have follow up scans to check for growth.

I'm actually feeling pretty good. This past week I was able to go to the gym and start working out again which gave me a big mental and physical boost. While I have some days that are mentally tough, overall I think being in school is a positive. Most of the time I am busy enough that I don't have time to around sit and worry.

dhs1963 · February 2013

Mimir said:
Path
It apparently took 8 weeks because the pathologist was having a hard time figuring it out. Apparently some parts of it seemed benign at first, so the pathologist compared slides from my biopsys to other parts of the tumor and eventually came up with chromophobe. I think another reason it took so long is goverment bureaucracy/reasearch protocol at NIH. The doctor didn't give me a stage (hopefully there will be more specifics on the written report) but given the size and involvemnt with a vein I think it should be between a T2-T3. The high grade refers to the Fuhrman grade. I had a full body workup done at NIH pre-surgery. The only questionable finding was a 3-4mm nodule on my lung. The doctors didn't seem to concenered and I will have follow up scans to check for growth.

I'm actually feeling pretty good. This past week I was able to go to the gym and start working out again which gave me a big mental and physical boost. While I have some days that are mentally tough, overall I think being in school is a positive. Most of the time I am busy enough that I don't have time to around sit and worry.

Lung Nodule

The good news with the lung nodule is the thoracic surgeons at NIH are great. I just had a 1.5 cm met removed from my left upper lobe by Dr. Schrump less than three weeks ago, and am basically back at 100%.

Unfortunatly, my pathology for the primary tumor, and the met shows sarcotimoid features.

Good luck with your stuff.

todd121 · February 2013

Mimir said:
Path
It apparently took 8 weeks because the pathologist was having a hard time figuring it out. Apparently some parts of it seemed benign at first, so the pathologist compared slides from my biopsys to other parts of the tumor and eventually came up with chromophobe. I think another reason it took so long is goverment bureaucracy/reasearch protocol at NIH. The doctor didn't give me a stage (hopefully there will be more specifics on the written report) but given the size and involvemnt with a vein I think it should be between a T2-T3. The high grade refers to the Fuhrman grade. I had a full body workup done at NIH pre-surgery. The only questionable finding was a 3-4mm nodule on my lung. The doctors didn't seem to concenered and I will have follow up scans to check for growth.

I'm actually feeling pretty good. This past week I was able to go to the gym and start working out again which gave me a big mental and physical boost. While I have some days that are mentally tough, overall I think being in school is a positive. Most of the time I am busy enough that I don't have time to around sit and worry.

Path

You're right about being busy. At first I didn't want to return to work. However, after I got back to work I was glad. Keeping busy and doing something useful is a good distraction.

They found 3 nodules, small like yours on my lungs as well. 1-2 were seen back in December, and the other 2 just recently (I didn't have a full ct of my lungs before recently). The ones they'd seen before didn't change in size. They seemed to think it might be nothing, that it could be anything.

My guess would be T3a, if they stage it the same way they did mine. I had involvement of the small veins but not out into the major vein, and I think that was the difference between T3a and T3b. Without the vein involvement you would have been T2. They thought I was T1 pre-surgery (I was just under 7cm).

Good luck to you. Stay vigilant.

todd121 · February 2013

dhs1963 said:
Lung Nodule
The good news with the lung nodule is the thoracic surgeons at NIH are great. I just had a 1.5 cm met removed from my left upper lobe by Dr. Schrump less than three weeks ago, and am basically back at 100%.

Unfortunatly, my pathology for the primary tumor, and the met shows sarcotimoid features.

Good luck with your stuff.

Congrat

Glad to hear your surgery went so well! That's good news.

Best wishes to you.

Todd

Mimir · March 2013

Good News!

I'm happy to say I can continue the NED train! My bloodpressure and kidney function where both deemed excellent. My genetic tests all came back negative.

On the other hand, my doctors flat out said they have no idea why this happened to me. Intrestingly, I am the youngest person ( by a bunch of years) NIH has ever seen with Chromophobe RCC.The tumor ended up being 8cm, fully ecnapuslated, vasuclar invasion, Paner grade 2, and T2a.

Members of this board always like to point out how we are changing the numbers in kidney cancer. I'm not changing the statistics; I am the statistic.

alice124 · March 2013

Mimir said:
Good News!
I'm happy to say I can continue the NED train! My bloodpressure and kidney function where both deemed excellent. My genetic tests all came back negative.

On the other hand, my doctors flat out said they have no idea why this happened to me. Intrestingly, I am the youngest person ( by a bunch of years) NIH has ever seen with Chromophobe RCC.The tumor ended up being 8cm, fully ecnapuslated, vasuclar invasion, Paner grade 2, and T2a.

Members of this board always like to point out how we are changing the numbers in kidney cancer. I'm not changing the statistics; I am the statistic.

NED Marathon

Mimir,

Thrilled for you and for the continuation of the NED marathon. Let's keep it going!

Texas_wedge · March 2013

alice124 said:
NED Marathon
Mimir,

Thrilled for you and for the continuation of the NED marathon. Let's keep it going!

Good news

Actually great news, Mimir. Have NIH made a guess as to how you could get such a large tumour so young? It's all the more astonishing since it's chromophobe.

The NED marathon field is getting impressively large. I ran in it for a few precious weeks - must try to get another entry!

Mimir · March 2013

Texas_wedge said:
Good news
Actually great news, Mimir. Have NIH made a guess as to how you could get such a large tumour so young? It's all the more astonishing since it's chromophobe.

The NED marathon field is getting impressively large. I ran in it for a few precious weeks - must try to get another entry!

Cause

They say I am in uncharted territory. They have no idea how the tumor got so large.

icemantoo · March 2013

Mimir said:
Cause
They say I am in uncharted territory. They have no idea how the tumor got so large.

The bright side

Mimir,

Just think in seventy years you will be able to say you are the longest survivor of Kidney Cancer ever.

Icemantoo

Jackaroe · April 2013

icemantoo said:
The bright side
Mimir,

Just think in seventy years you will be able to say you are the longest survivor of Kidney Cancer ever.

Icemantoo

post of the year

i know i'm a little late to this thread, but was researching chromophobe because that's my flavor (or was, i hope), and i had a PET scan today to investigate some lymph node concerns.

at any rate, i nominate iceman's post as the RCC positive post of the year!

Mimir · May 2017

Better Late Than Never

Through random happenstance I found my way here again. I know it has been over 4 years, but reading this old thread put such a smile on my face. It's amazing how kind a bunch of strangers were to a scared 18 year old.

I've been incredibly lucky -- still no sign of recurrence and I'm ~7 months away from my 5 year checkup! I've had some more genetic testing done. I was enrolled in another NIH study that sequenced my entire genome. I believe that data is now available for researchers around the world to study. It's comforting to think my DNA could be used to help others.

I feel bad for abandoning this forum, but I think it was ultimately beneficial for my mental recovery. I'm incredibly impressed that some familiar names are still helping to support and inform. My brain couldn't handle the repeated exposure. Like a typical angsty teen, I didn't think that anyone could understand what I was going through. I decided that the best path forward was to try and live and experience life and mostly forget about what had happened to me.

I realize that this update may be too late for some of the people who helped me out. I hope everyone, regardless of where they are, is doing well.

-Mimir

Jan4you · May 2017

Mimir, I am so happy that you

Mimir, I am so happy that you chose to return and tell of your successful path! Yes, I understand why you didn't want to remain tuned in for long, in order to survive. That is yours to decide. That is how you coped. You know you best!

But by returning and sharing how you are doing NED is rather poweful for newcomers and those still struggling.

Hope you updated your profile.

Lessons learned. May you have a wonderful, challenging new life after this life changing event!

Warmly, Jan

beemurguia · May 2017

Mimir, Thank you for checking

Mimir, Thank you for checking in and giving us an update. I am absolutely extactic to hear that You are doing well almost 5 yr post treatment. That is awesome!! I just got diagnosed in March, im 10 days post radical nephrectomy with very similar tumor size as yourself and secretly worry about the path report to come soon but your story gives me hope. I also understand you getting along with your life....we need to...we cant wallow in self pitty and recount the trauma over and over again. I wish you continued success and health....keep on living young man!!! and thanks for checking in!!!

-Bee

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