RCC Chromophobe

jnizzi
jnizzi Member Posts: 18

It is almost that time again when I get my scans to see if the cancer is still gone and I start thinking (and worrying) about it.  My doctor said RCC Chromophobe rarely reoccurs and I shouldn't worry about it but I am just curious if there is anyone out there that has a similar diagnosis with recurrance?

I was 38 years old when I had my nephrectomy and my tumor was 7.1 cm, stage 2, grade 3.

Thanks!

 

Jenn

«1345

Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    Chromophobe recurrance

    Hi Jenn,

    I had a radical left nephrectomy in May 2010.  Tumor was 11cm and fully encapsulated inside the kidney (Furman Grade 3 with extensive necrosis; Primary Tumor = pT2; Regional Lymph Nodes = pNX). There was no sign of spread - those lymph nodes nearby were deemed normal and so were not removed.  At the point I was declared "NED".  Biopsy showed that my tumor cell histology was chromphobe.

    I had routine CT scans every 4 months after that.  I was NED for the next 2+ years.  However, this past July mets were discovered on my sacrum (base of my spine) and left femur (thigh/hip).

    So, yes, chromophobe can recurr.  Naturally, the larger the tumor size upon discovery, the higher the risk of recurrance.  But there really are no guarantees with RCC.

  • swijak
    swijak Member Posts: 13
    RCC Chromophone

    In August 2010 I had  Chromophobe Renal Cell Carcinoma (ChRCC)- 10cm tumor (stage 1) on left kidney. Tumor was encapsulated and had not spread. Kidney was removed. So far no reoccurrence. I’m having my next round of scans next week and for each scan I do get really nervous… But so far so good…

  • keong72
    keong72 Member Posts: 11
    swijak said:

    RCC Chromophone

    In August 2010 I had  Chromophobe Renal Cell Carcinoma (ChRCC)- 10cm tumor (stage 1) on left kidney. Tumor was encapsulated and had not spread. Kidney was removed. So far no reoccurrence. I’m having my next round of scans next week and for each scan I do get really nervous… But so far so good…

    rcc chromophobe

    detect 2011 dec n operation at jan 2012 ,6cm grade2,chromophobe,scan twice and ned,life like normal  ,every riding roadike or moutain bike for few hour ,and aslo join some race,,,

  • I am alive
    I am alive Member Posts: 315
    The trick

    Hi Jenn,

        I'm 8 1/2 years out from chromophobe dx (fall, 2004) - had an 11cm encapsulated tumor with some necrosis. Post nephrectomy I was cancer free for almost 4 years before metastasis appeared near the vena cava and aorta, which surgery removed. Happily, I was cancer free again for 3 more years before mets became visible. Since July of last summer I have been in a clinical trial specifically for non-clear cell RCC (of which chromophobe is a type). Every day I take a 10mg pill of Afinitor (also known as everolimus) and every 2wks I go to NYC to get a 20-min infusion of Avastin (bevacizumab). So far, so good.

    I offer my "resume" so you can see that you can live years before having a metastasis, and then you can live cancer free for years before another one pops up. And of course you may never have one. It's all a crap shoot. Unfortunately learning to live with that uncertainty is the journey you're on. You'll figure it out. What scares the heck out of you today you'll treat matter of factly down the road.  If I've learned anything from all this it is that worry is pointless. You get absolutely nothing from it except more worry. That said, sometimes I handle scanxiety well, sometimes not so much. The trick is to stay in the moment. Choose to be positive. Choose to be happy. Know that you will deal with anything that might come up,  as you always have, and life goes on. And when that ugly worry wort creeps into your psyche - as it inevitably will - acknowledge it for what it is - hey, you're human! - then slam the door on it. That's the trick.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    The trick

    Hi Jenn,

        I'm 8 1/2 years out from chromophobe dx (fall, 2004) - had an 11cm encapsulated tumor with some necrosis. Post nephrectomy I was cancer free for almost 4 years before metastasis appeared near the vena cava and aorta, which surgery removed. Happily, I was cancer free again for 3 more years before mets became visible. Since July of last summer I have been in a clinical trial specifically for non-clear cell RCC (of which chromophobe is a type). Every day I take a 10mg pill of Afinitor (also known as everolimus) and every 2wks I go to NYC to get a 20-min infusion of Avastin (bevacizumab). So far, so good.

    I offer my "resume" so you can see that you can live years before having a metastasis, and then you can live cancer free for years before another one pops up. And of course you may never have one. It's all a crap shoot. Unfortunately learning to live with that uncertainty is the journey you're on. You'll figure it out. What scares the heck out of you today you'll treat matter of factly down the road.  If I've learned anything from all this it is that worry is pointless. You get absolutely nothing from it except more worry. That said, sometimes I handle scanxiety well, sometimes not so much. The trick is to stay in the moment. Choose to be positive. Choose to be happy. Know that you will deal with anything that might come up,  as you always have, and life goes on. And when that ugly worry wort creeps into your psyche - as it inevitably will - acknowledge it for what it is - hey, you're human! - then slam the door on it. That's the trick.

    Database

    To   Jenn,  swijak  and Keong  --  I'm compiling a database of profiles of chromophobe patients.  I have some details for each of you but would like to have the following for everyone:

    Gender, age, month of diagnosis, stage, grade, size of tumor, side of tumor, your country of residence, ethnicity, blood group, surgeries and any systemic drugs you have had and are on now, if any.

    I'd be grateful if you could supply those details. Chromophobe RCC is fairly rare but I have a dozen of us listed so far.

  • Mimir
    Mimir Member Posts: 25

    Database

    To   Jenn,  swijak  and Keong  --  I'm compiling a database of profiles of chromophobe patients.  I have some details for each of you but would like to have the following for everyone:

    Gender, age, month of diagnosis, stage, grade, size of tumor, side of tumor, your country of residence, ethnicity, blood group, surgeries and any systemic drugs you have had and are on now, if any.

    I'd be grateful if you could supply those details. Chromophobe RCC is fairly rare but I have a dozen of us listed so far.

    Happy to help, for science.

    Male, 19, December,  2a(with vascular invasion), Paner grade 2, 8cm, left, USA, white, I don't know my bloodtype, laproscopic radical nephrectomy.

  • todd121
    todd121 Member Posts: 1,448
    swijak said:

    RCC Chromophone

    In August 2010 I had  Chromophobe Renal Cell Carcinoma (ChRCC)- 10cm tumor (stage 1) on left kidney. Tumor was encapsulated and had not spread. Kidney was removed. So far no reoccurrence. I’m having my next round of scans next week and for each scan I do get really nervous… But so far so good…

    Stage 1?

    The difference between Stage 1 and Stage 2 is mainly tumor size, with 7cm being the cutoff. I'm pretty sure this is independent of type of RCC or cell histology. I don't think it's possible to have a tumor be 10cm and be Stage 1. Are you sure your pathology report said Stage 1?

    Unless I'm missing something or confused (which happens). :)

    Todd

  • todd121
    todd121 Member Posts: 1,448
    Mimir said:

    Happy to help, for science.

    Male, 19, December,  2a(with vascular invasion), Paner grade 2, 8cm, left, USA, white, I don't know my bloodtype, laproscopic radical nephrectomy.

    Tumor Staging

    I'm very curious about your staging. I've read in some detail the differences in staging descriptions, and the main difference between Stage 2 and Stage 3 is whether or not the tumor had grown into the veins, the adrenal gland, or outside the kidney (not fully encapsulated). You stated that you were Stage 2a but with vascular invasion. Did you notice if your pathology said whether it was micro or macro invasion of the veins? My tumor was smaller (6.8 cm) but was Staged as 3a because according to my pathology report the tumor had grown both micro and macroscopically into the veins (but not into the renal vein which would have made it Stage 3b). I'm just wondering how they differentiated between 2a with vascular invasion and this wasn't Stage 3. I'm assuming your tumor had only grown microscopically into the veins and that's why you were staged 2. There may be some art and opinion on this staging process (like everything else in life, I suppose).

    This may explain why my new hospital required their own pathologist to review my slides and do a new pathology report. They didn't necessarily trust my previous hospital. I wondered about that.

    Thanks,

    Todd

  • todd121
    todd121 Member Posts: 1,448

    The trick

    Hi Jenn,

        I'm 8 1/2 years out from chromophobe dx (fall, 2004) - had an 11cm encapsulated tumor with some necrosis. Post nephrectomy I was cancer free for almost 4 years before metastasis appeared near the vena cava and aorta, which surgery removed. Happily, I was cancer free again for 3 more years before mets became visible. Since July of last summer I have been in a clinical trial specifically for non-clear cell RCC (of which chromophobe is a type). Every day I take a 10mg pill of Afinitor (also known as everolimus) and every 2wks I go to NYC to get a 20-min infusion of Avastin (bevacizumab). So far, so good.

    I offer my "resume" so you can see that you can live years before having a metastasis, and then you can live cancer free for years before another one pops up. And of course you may never have one. It's all a crap shoot. Unfortunately learning to live with that uncertainty is the journey you're on. You'll figure it out. What scares the heck out of you today you'll treat matter of factly down the road.  If I've learned anything from all this it is that worry is pointless. You get absolutely nothing from it except more worry. That said, sometimes I handle scanxiety well, sometimes not so much. The trick is to stay in the moment. Choose to be positive. Choose to be happy. Know that you will deal with anything that might come up,  as you always have, and life goes on. And when that ugly worry wort creeps into your psyche - as it inevitably will - acknowledge it for what it is - hey, you're human! - then slam the door on it. That's the trick.

    Thanks for posting this (I am Alive)!

    I am Alive,

    I'm so glad you posted the treatment you are undergoing. This is an answer to the question I was asking down below about VEGF and mTOR inhibitors being used together. It's the first I've heard of a study combining the two. I'm taking 10mg of Afinitor a day as part of an adjuvant therapy drug trial.

    Could you please share your side effects? I'd be interested in hearing about any side effects you are having. In particular, I'd like to know about changes to your blood pressure, diarrhea, nausea, fatigue, creatinine/kidney function, or liver function and anything else you may have experienced that you think is a result of your drugs.

    Todd

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    todd121 said:

    Thanks for posting this (I am Alive)!

    I am Alive,

    I'm so glad you posted the treatment you are undergoing. This is an answer to the question I was asking down below about VEGF and mTOR inhibitors being used together. It's the first I've heard of a study combining the two. I'm taking 10mg of Afinitor a day as part of an adjuvant therapy drug trial.

    Could you please share your side effects? I'd be interested in hearing about any side effects you are having. In particular, I'd like to know about changes to your blood pressure, diarrhea, nausea, fatigue, creatinine/kidney function, or liver function and anything else you may have experienced that you think is a result of your drugs.

    Todd

    RCC Chromophobe

    Please note that this thread is supposed to be about RCC Chromophobe.  [I am alive was contributing here because she is a chRCC patient.]

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Mimir said:

    Happy to help, for science.

    Male, 19, December,  2a(with vascular invasion), Paner grade 2, 8cm, left, USA, white, I don't know my bloodtype, laproscopic radical nephrectomy.

    Happy to help

    Mimir could you find out your blood group and let me know?  It's a good idea to know your blood type, particularly if you ever need surgery.  I carry a card - if I need blood it has to be an exact match to my own (in AB0 and Rhesus groups) - blood from any other group is likely to actually kill me.

    If you find out yours, please let me know to complete the entry for your case.

  • Mimir
    Mimir Member Posts: 25
    todd121 said:

    Tumor Staging

    I'm very curious about your staging. I've read in some detail the differences in staging descriptions, and the main difference between Stage 2 and Stage 3 is whether or not the tumor had grown into the veins, the adrenal gland, or outside the kidney (not fully encapsulated). You stated that you were Stage 2a but with vascular invasion. Did you notice if your pathology said whether it was micro or macro invasion of the veins? My tumor was smaller (6.8 cm) but was Staged as 3a because according to my pathology report the tumor had grown both micro and macroscopically into the veins (but not into the renal vein which would have made it Stage 3b). I'm just wondering how they differentiated between 2a with vascular invasion and this wasn't Stage 3. I'm assuming your tumor had only grown microscopically into the veins and that's why you were staged 2. There may be some art and opinion on this staging process (like everything else in life, I suppose).

    This may explain why my new hospital required their own pathologist to review my slides and do a new pathology report. They didn't necessarily trust my previous hospital. I wondered about that.

    Thanks,

    Todd

    Staging

    The pathology didn't really specify what type it was. It just says "Vascular invasion present. Vascular and ureteral margins are free of tumor." From what the doctors said, it sounds like it was just was microscopically invasive.

     

    Tex- I dont' really have a way of finding out my bloodtype now, but next time I get scans I will ask.

  • I am alive
    I am alive Member Posts: 315
    todd121 said:

    Thanks for posting this (I am Alive)!

    I am Alive,

    I'm so glad you posted the treatment you are undergoing. This is an answer to the question I was asking down below about VEGF and mTOR inhibitors being used together. It's the first I've heard of a study combining the two. I'm taking 10mg of Afinitor a day as part of an adjuvant therapy drug trial.

    Could you please share your side effects? I'd be interested in hearing about any side effects you are having. In particular, I'd like to know about changes to your blood pressure, diarrhea, nausea, fatigue, creatinine/kidney function, or liver function and anything else you may have experienced that you think is a result of your drugs.

    Todd

    Side effects

    Tex is right. We're members of the rare chromophobe club here - there are so few of us that we cling when we find each other. But I'm happy to tell you about my side effects. Pretty darn minimal day to day. For me, most have come in waves and then disappeared. Early on I had a few mouth sores, which cleared up with medication.. I learned it was not a good idea to eat big chunky pretzels loaded with salt - seemed to encourage the sores. They haven't reappeared.Then I had a moderate itchy rash that disappeared within days of using the topical cream I was prescribed. Got that metal taste for a while. It went away on its own. I don't think my taste buds are as right-on as they used to be, but it is certainly not a problem.  Over the course of the last nine months I've gotten headaches - in clusters sometimes. Annoyingly often for a week or two, then scattered or gone for weeks or even a month at a time. Early on I developed some ground glass opacities in my lungs which we are watching. They diminished a bit and then some new ones appeared. But they are only symptomatic when I walk up a hill or hustle to catch a bus or a cab. My triglycerides and cholesterol (both of which were quite low before starting the trial) began to rise and in February I was put on Lovazza to control the triglycerides. Numbers for both have returned to normal. My BP has also been heading north. Just today I started taking Norvasc (also known as Amlodipine) to lower it. Fatigue sometimes. Couldn't figure out how much was due to winter doldrums, but at any rate it hasnt been debilitating. Liver function and creatinine/kidney function are fine. And so there you have it. But that's only my story. Everyone's different. 

  • Jackaroe
    Jackaroe Member Posts: 23

    Database

    To   Jenn,  swijak  and Keong  --  I'm compiling a database of profiles of chromophobe patients.  I have some details for each of you but would like to have the following for everyone:

    Gender, age, month of diagnosis, stage, grade, size of tumor, side of tumor, your country of residence, ethnicity, blood group, surgeries and any systemic drugs you have had and are on now, if any.

    I'd be grateful if you could supply those details. Chromophobe RCC is fairly rare but I have a dozen of us listed so far.

    database

    thanks for doing this tex. i'm male, 52, dxd. in February 2013, stage 2, grade 1-2, 7.4 cm, right side, US, white, A+, radical nephrectomy in February my only surgery, no drugs.

    I'm NED for the moment, but there is some concern over some "hypermetabolic" (though not enlarged) lymph nodes.

    Living with uncertaintly seems like it's going to be a new way of life for me.  It's not all bad: now every day that I am NED seems like a gift to be treasured. I think in a way I don't want to miss out on treasuring every moment, because if I do come back with mets, I don't want to look back on this time and regret having taken any of it for granted.

  • Jackaroe
    Jackaroe Member Posts: 23

    Database

    To   Jenn,  swijak  and Keong  --  I'm compiling a database of profiles of chromophobe patients.  I have some details for each of you but would like to have the following for everyone:

    Gender, age, month of diagnosis, stage, grade, size of tumor, side of tumor, your country of residence, ethnicity, blood group, surgeries and any systemic drugs you have had and are on now, if any.

    I'd be grateful if you could supply those details. Chromophobe RCC is fairly rare but I have a dozen of us listed so far.

    database

    thanks for doing this tex. i'm male, 52, dxd. in February 2013, stage 2 chromophobe, grade 1-2, 7.4 cm, right side, US, white, A+, radical nephrectomy in February my only surgery, no drugs.

    I'm NED for the moment, but there is some concern over some "hypermetabolic" (though not enlarged) lymph nodes.

    Living with uncertaintly seems like it's going to be a new way of life for me.  It's not all bad: now every day that I am NED seems like a gift to be treasured. I think in a way I don't want to miss out on treasuring every moment, because if I do come back with mets, I don't want to look back on this time and regret having taken any of it for granted.

  • I am alive
    I am alive Member Posts: 315
    Jackaroe said:

    database

    thanks for doing this tex. i'm male, 52, dxd. in February 2013, stage 2, grade 1-2, 7.4 cm, right side, US, white, A+, radical nephrectomy in February my only surgery, no drugs.

    I'm NED for the moment, but there is some concern over some "hypermetabolic" (though not enlarged) lymph nodes.

    Living with uncertaintly seems like it's going to be a new way of life for me.  It's not all bad: now every day that I am NED seems like a gift to be treasured. I think in a way I don't want to miss out on treasuring every moment, because if I do come back with mets, I don't want to look back on this time and regret having taken any of it for granted.

    "I don't want to..regret having taken any of it for granted"

    Amen Jackaroe.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Jackaroe said:

    database

    thanks for doing this tex. i'm male, 52, dxd. in February 2013, stage 2 chromophobe, grade 1-2, 7.4 cm, right side, US, white, A+, radical nephrectomy in February my only surgery, no drugs.

    I'm NED for the moment, but there is some concern over some "hypermetabolic" (though not enlarged) lymph nodes.

    Living with uncertaintly seems like it's going to be a new way of life for me.  It's not all bad: now every day that I am NED seems like a gift to be treasured. I think in a way I don't want to miss out on treasuring every moment, because if I do come back with mets, I don't want to look back on this time and regret having taken any of it for granted.

    Database

    Thanks Jackaroe - duly entered.  13 of us so far - before long I may have accumulated some basic facts about as many chRCC patients as have been studied in any of the research papers.  It may yield nothing of use, but you don't know if you don't try, right?

  • ourfriendjohn
    ourfriendjohn Member Posts: 72

    Side effects

    Tex is right. We're members of the rare chromophobe club here - there are so few of us that we cling when we find each other. But I'm happy to tell you about my side effects. Pretty darn minimal day to day. For me, most have come in waves and then disappeared. Early on I had a few mouth sores, which cleared up with medication.. I learned it was not a good idea to eat big chunky pretzels loaded with salt - seemed to encourage the sores. They haven't reappeared.Then I had a moderate itchy rash that disappeared within days of using the topical cream I was prescribed. Got that metal taste for a while. It went away on its own. I don't think my taste buds are as right-on as they used to be, but it is certainly not a problem.  Over the course of the last nine months I've gotten headaches - in clusters sometimes. Annoyingly often for a week or two, then scattered or gone for weeks or even a month at a time. Early on I developed some ground glass opacities in my lungs which we are watching. They diminished a bit and then some new ones appeared. But they are only symptomatic when I walk up a hill or hustle to catch a bus or a cab. My triglycerides and cholesterol (both of which were quite low before starting the trial) began to rise and in February I was put on Lovazza to control the triglycerides. Numbers for both have returned to normal. My BP has also been heading north. Just today I started taking Norvasc (also known as Amlodipine) to lower it. Fatigue sometimes. Couldn't figure out how much was due to winter doldrums, but at any rate it hasnt been debilitating. Liver function and creatinine/kidney function are fine. And so there you have it. But that's only my story. Everyone's different. 

    Number 14

    Tex,

    I have been away from the site for some time and just saw the RCC Chromophobe thread.  Here is my info: white male age 59 at time of diagnosis in July 2012 from the southeast US with type B+ blood.  Tumor was 17.5cm on right kidney stage 2b, grade 4 "chromophobe RCC with 5-10% sarcomatoid features" and "margins negative for carcinoma".  I had a right radical (open) nephrectomy September 7, 2012 and am having six month abdominal and pelvic MRI or CT scans with a chest x-ray every six months.  I am now being followed by an oncologist, even though there has been no metastasis, who ordered a chest CT at one year just for a base line.  So far so good, just the normal scanexity every six months.  Thanks for doing this.  I hope you will "publish" the compilation.

    Best to all,

    John

  • Jackaroe
    Jackaroe Member Posts: 23

    Database

    Thanks Jackaroe - duly entered.  13 of us so far - before long I may have accumulated some basic facts about as many chRCC patients as have been studied in any of the research papers.  It may yield nothing of use, but you don't know if you don't try, right?

    i've already

    learned way more about chromophobe here than anywhere else.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Number 14

    Tex,

    I have been away from the site for some time and just saw the RCC Chromophobe thread.  Here is my info: white male age 59 at time of diagnosis in July 2012 from the southeast US with type B+ blood.  Tumor was 17.5cm on right kidney stage 2b, grade 4 "chromophobe RCC with 5-10% sarcomatoid features" and "margins negative for carcinoma".  I had a right radical (open) nephrectomy September 7, 2012 and am having six month abdominal and pelvic MRI or CT scans with a chest x-ray every six months.  I am now being followed by an oncologist, even though there has been no metastasis, who ordered a chest CT at one year just for a base line.  So far so good, just the normal scanexity every six months.  Thanks for doing this.  I hope you will "publish" the compilation.

    Best to all,

    John

    Now number 20

    Good to see you back John and thanks for the info. 

    As a matter of fact, it's of particular interest to me because I think I'm the only person still living with metastatic, sarcomatoid chromophobe RCC.  I realise now that I should have had an extra column for sarcomatoid elements.  You and I are the only ones I'm aware of with schRCC but I hope anyone reading this who is in our boat will let me know.

    Yours is by far the largest tumor in the database so far (even though chRCC tumors tend to be the biggest) and that, combined with the small sarcomatoid element, make it remarkable that you have no mets - long may that continue and I shall pray that it stays that way.  Without wanting to be alarmist though, I'm a little surprised that you aren't being followed up more frequently.  I've been getting CT scans with contrast (and one important hybrid PET/CT scan) every 12 weeks or so, but then my pathology is mostly sarcomatoid and with extensive sporadic necrosis.  Stay well.