A Very Nasty Cancer

Timbomba
Timbomba Member Posts: 48

Hi Survivors,

I had a 12cm 11cm 9cm Clear Cell RCC taken out of me with my left kidney 5 and half months ago. My staging was T3NO. Now I have some spots on my lungs 5mm (2) which are too small to call but they are new.

 

My Specialist Urologist described my cancer as 'Very Nasty'...aggressive type....and I wander what that really means. I have a staging category but where or how does this nasty tumor measure up for me as a prognosis for the future. Is a stage 4 for example worst that my stage 3...what bearing does the 'type' of cancer have on that prognosis. I am confused and didnt think to ask last time.

Any experiences ?

Tim

«1

Comments

  • jason.2835
    jason.2835 Member Posts: 337 Member
    Staging

    Timbomba,

    Were you presented with a pathology report? If so then what does that say as far as the type? It would be near the top. Some example are clear cell renal cell carcinoma, sarcomatoid features, papillary, etc. It may help people with your subtype to give you more information if they knew what type. 

    As far as staging, the main feature of stage 4 is that the cancer has spread to distant organs or a couple of lymph nodes. If your tumor was removed before too much of that damage was done, then it is definitely better than if it happened later.

    Its very nice of your doctor to give you such a fine, medical, professional summary of your cancer without presenting you with a future plan of action. A doctor that isn't up front with me regarding the prognosis is pretty much worthless.  If he left you with more questions then answers then I believe you should get in front of someone who knows what they're talking about. Just my 2 cents.

    I am starting to get shocked with some of the doctor stories that I am hearing on this forum. 

    - Jay

  • foroughsh
    foroughsh Member Posts: 779
    Tim, so sorry to  had to hear

    Tim, so sorry you to  had to hear "aggresive" word. They usually say it when the tumor grade is high. It's called furhman grading system and between 1to 4. The higher means the cells are more different from normal kidney cell wich means it's more aggresive. Other cases which mak a tumor aggresive are  it having sacromatoid futures or extensive necrosis. You can look for these words in your oathology report. Cancer staging refers to how far the cancer has gone, stage 1-2 are confined to kidney and the difference is between tumor size, stage three reffers to those tumors which have access to nearby limph nodes or renal sinus,....stage four is when distant organs are  in trouble such as brain,lung,bone,liver,....

  • APny
    APny Member Posts: 1,995 Member
    foroughsh said:

    Tim, so sorry to  had to hear

    Tim, so sorry you to  had to hear "aggresive" word. They usually say it when the tumor grade is high. It's called furhman grading system and between 1to 4. The higher means the cells are more different from normal kidney cell wich means it's more aggresive. Other cases which mak a tumor aggresive are  it having sacromatoid futures or extensive necrosis. You can look for these words in your oathology report. Cancer staging refers to how far the cancer has gone, stage 1-2 are confined to kidney and the difference is between tumor size, stage three reffers to those tumors which have access to nearby limph nodes or renal sinus,....stage four is when distant organs are  in trouble such as brain,lung,bone,liver,....

    I agree with Jason.

    I agree with Jason. Pronouncing such dire statements without explanation and a treatment approach is pretty useless. All it does is raise your anxiety level which doesn't help. I find that if I don't write down my questions, when I see my oncologist/surgeon they all fly out of my head due to nervousness. So now I write them all down as I think of them and go through them systematically. I would suggest you do the same. Ask him what, in his opnion, makes it aggressive? What was the Fuhrman grade? Which is a better for prognosis: stage or grade? As Foroughsh said, ask whether there were sarcomatid or necrotic features. What are the chances the nodules in you lung are RCC mets or harmless? And any other things that you could think of just jut down then see him and ask away. I hope you get some answers beyond the pronouncement that it's "nasty."  All cancer is nasty as far as I'm concerned.

  • Srashedb
    Srashedb Member Posts: 482
    Doctor

    Tim:

    you said "specialist/urologist " but not oncologist; do you have an oncologist? Very aggressive, I agree, is usually described with a Furhman grade of 1-4. 4 being the most aggressive.

    Aggressive also can be the type of cancer; are there sarcomadoid cells? 

    If you have a copy of the pathology report, all of that information will be in there. But, first and foremost, get to an oncologist. 

    Sarah 

  • NewDay
    NewDay Member Posts: 272
    Srashedb said:

    Doctor

    Tim:

    you said "specialist/urologist " but not oncologist; do you have an oncologist? Very aggressive, I agree, is usually described with a Furhman grade of 1-4. 4 being the most aggressive.

    Aggressive also can be the type of cancer; are there sarcomadoid cells? 

    If you have a copy of the pathology report, all of that information will be in there. But, first and foremost, get to an oncologist. 

    Sarah 

    Lung nodules

    Hi Timbomba,

    As others have said, there are multiple things that can cause a tumor to be referred to as “aggressive”: size, grade, sarcomatoid features, necrosis, and type.  There are different types of renal cell carcinoma and that can play into the treatment and prognosis.  Some of those are clear cell, chromophove, papillary, and unclassified.

    Different oncologists have different opinions about when or whether to diagnose someone as stage IV and start treatment when the only metastasis is in the lungs because harmless, benign lung nodules are relatively common even in people without cancer.  In my case my oncologist who is an RCC specialist diagnosed me as Stage IV and recommended starting treatment based on the number of them even though the largest was 8mm.  Some doctors will wait until they are over 1cm.  Even then, some will not start treatment unless they get a biopsy.  There are no hard and fast rules.

    The stage is important regarding prognosis.  If it has spread to the lungs, it moves you from Stage III to Stage IV which does have a worse prognosis.  There is no cure, but there are several drugs that can shrink the tumors and some people live many years.  I have been taking Inlyta (Axitinib) for a year and it has shrunk all of my tumors.

    You certainly need to switch to an onologist.  Urologists are experts in removing kidneys, not experts in kidney cancer.  If you can, try to see one that specializes in RCC because it is very different from other cancers.

    You cancer may be aggressive, but that just means you have to be aggressive as well.  Become informed, find a medical team you trust, and be your own advocate.

    Kathy

  • jason.2835
    jason.2835 Member Posts: 337 Member

    Timbomba,

    Sorry I just reread your post and saw that it did say clear cell RCC, which is what I had... obviously very different stage of the game, but the same cancer nonetheless.  So when a doctor says "very nasty TYPE" I assume he is talking about a different subtype.  But you had the regular clear cell.  So I'm not sure how that is more aggressive than my clear cell, which was the same.  It was just caught at a different time.  

    So to clarify, stage 4 means nothing other than the cancer has spread to a new site somewhere in the body.  It has split off from the primary tumor.  But stage 4, while certainly undesirable, is not impossible to manage and to even create regression and maybe remission with the tons of treatments out there today.  You need a doctor who's going to explain this to you in real terms and let you decide what's best for you.

    - Jay 

  • Footstomper
    Footstomper Member Posts: 1,237

    Timbomba,

    Sorry I just reread your post and saw that it did say clear cell RCC, which is what I had... obviously very different stage of the game, but the same cancer nonetheless.  So when a doctor says "very nasty TYPE" I assume he is talking about a different subtype.  But you had the regular clear cell.  So I'm not sure how that is more aggressive than my clear cell, which was the same.  It was just caught at a different time.  

    So to clarify, stage 4 means nothing other than the cancer has spread to a new site somewhere in the body.  It has split off from the primary tumor.  But stage 4, while certainly undesirable, is not impossible to manage and to even create regression and maybe remission with the tons of treatments out there today.  You need a doctor who's going to explain this to you in real terms and let you decide what's best for you.

    - Jay 

    Very nasty type

    Sounds like a Dr talking in layman-speak. Ask for clarification. I'm sure they would be happy to oblige. Honestly it justs sounds like lazy phraseology

  • Timbomba
    Timbomba Member Posts: 48

    Timbomba,

    Sorry I just reread your post and saw that it did say clear cell RCC, which is what I had... obviously very different stage of the game, but the same cancer nonetheless.  So when a doctor says "very nasty TYPE" I assume he is talking about a different subtype.  But you had the regular clear cell.  So I'm not sure how that is more aggressive than my clear cell, which was the same.  It was just caught at a different time.  

    So to clarify, stage 4 means nothing other than the cancer has spread to a new site somewhere in the body.  It has split off from the primary tumor.  But stage 4, while certainly undesirable, is not impossible to manage and to even create regression and maybe remission with the tons of treatments out there today.  You need a doctor who's going to explain this to you in real terms and let you decide what's best for you.

    - Jay 

    Hi Jay,
    Yes, what I realise

    Hi Jay,

    Yes, what I realise after reading answers to my posts is that its a Grade 4 (Furhman scale) plus its stage T3NO but now I have these nodes on my lungs but they are only v small. So its a waiting game now for 3 months to see if they grow. I just wonder how guys on here have gone with grade 4 RCC cancer. Thanks for your post and interest.

    Tim

  • Timbomba
    Timbomba Member Posts: 48
    NewDay said:

    Lung nodules

    Hi Timbomba,

    As others have said, there are multiple things that can cause a tumor to be referred to as “aggressive”: size, grade, sarcomatoid features, necrosis, and type.  There are different types of renal cell carcinoma and that can play into the treatment and prognosis.  Some of those are clear cell, chromophove, papillary, and unclassified.

    Different oncologists have different opinions about when or whether to diagnose someone as stage IV and start treatment when the only metastasis is in the lungs because harmless, benign lung nodules are relatively common even in people without cancer.  In my case my oncologist who is an RCC specialist diagnosed me as Stage IV and recommended starting treatment based on the number of them even though the largest was 8mm.  Some doctors will wait until they are over 1cm.  Even then, some will not start treatment unless they get a biopsy.  There are no hard and fast rules.

    The stage is important regarding prognosis.  If it has spread to the lungs, it moves you from Stage III to Stage IV which does have a worse prognosis.  There is no cure, but there are several drugs that can shrink the tumors and some people live many years.  I have been taking Inlyta (Axitinib) for a year and it has shrunk all of my tumors.

    You certainly need to switch to an onologist.  Urologists are experts in removing kidneys, not experts in kidney cancer.  If you can, try to see one that specializes in RCC because it is very different from other cancers.

    You cancer may be aggressive, but that just means you have to be aggressive as well.  Become informed, find a medical team you trust, and be your own advocate.

    Kathy

    Thankyou Kathy.....that is

    Thankyou Kathy.....that is very good info. for me. I wait now to see if these 2 x 5mm nodes grow and from there its either lung specialist to remove or if there are more an oncologist.

     

    thanks again

     

  • Timbomba
    Timbomba Member Posts: 48

    Very nasty type

    Sounds like a Dr talking in layman-speak. Ask for clarification. I'm sure they would be happy to oblige. Honestly it justs sounds like lazy phraseology

    thanks footstomper....yeah

    thanks footstomper....yeah its a grade 4 on the Furhman scale...the most aggresive.

    cheers

    Tim

  • Footstomper
    Footstomper Member Posts: 1,237
    Timbomba said:

    thanks footstomper....yeah

    thanks footstomper....yeah its a grade 4 on the Furhman scale...the most aggresive.

    cheers

    Tim

    Grade 4

    You and I both. It came as a bit of a shock. I cried a litle later on. David Bowies 'Moonage Daydream' set me off. If you dont know it, its about coping with impending destruction by believing in rescue from outer space. Then I was able to deal with it.

    I'm going to die. 

    But, then I always was.

    And now i deal with what I have to deal with today.

    And tomorrow i will deal with those problems which might present themselves.

    I survived yesterday. I enjoyed yesterday

    I will survive tomorrow

    I reckon I'll carry on being alive tomorrow

     

     

     

  • foxhd
    foxhd Member Posts: 3,181

    Grade 4

    You and I both. It came as a bit of a shock. I cried a litle later on. David Bowies 'Moonage Daydream' set me off. If you dont know it, its about coping with impending destruction by believing in rescue from outer space. Then I was able to deal with it.

    I'm going to die. 

    But, then I always was.

    And now i deal with what I have to deal with today.

    And tomorrow i will deal with those problems which might present themselves.

    I survived yesterday. I enjoyed yesterday

    I will survive tomorrow

    I reckon I'll carry on being alive tomorrow

     

     

     

    Age has a lot to

    do with it. I agree with Footstomper. But we may be older than many others. It does bother me alot when the 30 and 40 year olds join this site. Way to young for this curse. I'm 63 and entering my 5th year from diagnosis (plus the years before diagnosis that it just grew there.) I still do not want to die but I fully accept it. I say that everyone is going to die, I just know what from. The good news for the young'uns is that our treatment options are evolving quickly. Be your own advocate. Participate in your care.

  • Footstomper
    Footstomper Member Posts: 1,237
    foxhd said:

    Age has a lot to

    do with it. I agree with Footstomper. But we may be older than many others. It does bother me alot when the 30 and 40 year olds join this site. Way to young for this curse. I'm 63 and entering my 5th year from diagnosis (plus the years before diagnosis that it just grew there.) I still do not want to die but I fully accept it. I say that everyone is going to die, I just know what from. The good news for the young'uns is that our treatment options are evolving quickly. Be your own advocate. Participate in your care.

    Hey!

    I'm a spring chicken! 53 going on 17. Age indeed.(and I'd rather have a Triumph Bonnie than a hog!) And I will not die today!

  • Srashedb
    Srashedb Member Posts: 482
    Timbomba said:

    Hi Jay,
    Yes, what I realise

    Hi Jay,

    Yes, what I realise after reading answers to my posts is that its a Grade 4 (Furhman scale) plus its stage T3NO but now I have these nodes on my lungs but they are only v small. So its a waiting game now for 3 months to see if they grow. I just wonder how guys on here have gone with grade 4 RCC cancer. Thanks for your post and interest.

    Tim

    Stage and grade

    Tim:

    given that you are now stage 4 (assuming the lung nodules are mets) and grade 4, getting to an oncologist experienced in kidney cancer.

    calling something a "nasty" cancer is unprofessional and you will be well-served with a specialist.

    as for older patients v younger ones, I agree that younger patients dealing with this is awful. I remember getting off on the wrong floor at the hospital when my husband was there and ending up on the pediatrilc oncology floor. Really gives one perspective.

    watching the 17 month old baby on the "Emperor of Maladies " last night was extremely difficult and I struggled to keep my grand babies out of my head.

    Glad you found this forum; you will get both good information and support. I do not have kidney cancer; my husband is the patient. He has stage 4, grade 2. His mets are in his spine 

    Sarah

  • Timbomba
    Timbomba Member Posts: 48
    Srashedb said:

    Stage and grade

    Tim:

    given that you are now stage 4 (assuming the lung nodules are mets) and grade 4, getting to an oncologist experienced in kidney cancer.

    calling something a "nasty" cancer is unprofessional and you will be well-served with a specialist.

    as for older patients v younger ones, I agree that younger patients dealing with this is awful. I remember getting off on the wrong floor at the hospital when my husband was there and ending up on the pediatrilc oncology floor. Really gives one perspective.

    watching the 17 month old baby on the "Emperor of Maladies " last night was extremely difficult and I struggled to keep my grand babies out of my head.

    Glad you found this forum; you will get both good information and support. I do not have kidney cancer; my husband is the patient. He has stage 4, grade 2. His mets are in his spine 

    Sarah

    Thankyou Sarah. I am 58 yrs

    Thankyou Sarah. I am 58 yrs old and now realise that my life will probably be shorter than the average one. However I have great family support and will do everything I can to prolong my life. Its those that I leave behind thjat I am really fighting for. I will stay positive and deal with this. This a great site with good people who share and advise about their dealings with cancer. I get support from reading. 

    Thankyou 

  • Timbomba
    Timbomba Member Posts: 48
    foxhd said:

    Age has a lot to

    do with it. I agree with Footstomper. But we may be older than many others. It does bother me alot when the 30 and 40 year olds join this site. Way to young for this curse. I'm 63 and entering my 5th year from diagnosis (plus the years before diagnosis that it just grew there.) I still do not want to die but I fully accept it. I say that everyone is going to die, I just know what from. The good news for the young'uns is that our treatment options are evolving quickly. Be your own advocate. Participate in your care.

    Thanks Foxhd......I'm 58

    Thanks Foxhd......I'm 58 probably carried the tumor which was 12cm from the age of 50....I just want to live longer....a thought that had never occurred to me before this cancer!!

    cheers Tim

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Timbomba said:

    Thankyou Sarah. I am 58 yrs

    Thankyou Sarah. I am 58 yrs old and now realise that my life will probably be shorter than the average one. However I have great family support and will do everything I can to prolong my life. Its those that I leave behind thjat I am really fighting for. I will stay positive and deal with this. This a great site with good people who share and advise about their dealings with cancer. I get support from reading. 

    Thankyou 

    Hey Tim,
    I am so sorry for

    Hey Tim,

    I am so sorry for the shock of the news you have just received. This forum is great for support, advice, information and just a place to vent your thoughts - and fears. You have already received some great advice...but please seek out a Kidney cancer oncologist. Where do you live? Maybe someone here can recommend a wonderful doctor. That is the best thing you can do right now.

    I was stage 3, grade 2 with lymphovascular invasion (lymphovascular invasion is something I have been a little concerned about, maybe that is why I mentioned it :) with a 13 cm tumor. I had my right kidney removed December 2013. I am now 53 years old. (you now have all my information - but will never tell you my weight!! lol) I go for my scan this month. When I was first diagnosed I was very positive and very hopeful because of reading everyone's stories here. There are lots of battles, but there are also many success stories and new treatments and procedures are being developed all the time.

    Welcome to our forum...

    Hugs

    Jojo

  • Timbomba
    Timbomba Member Posts: 48
    Jojo61 said:

    Hey Tim,
    I am so sorry for

    Hey Tim,

    I am so sorry for the shock of the news you have just received. This forum is great for support, advice, information and just a place to vent your thoughts - and fears. You have already received some great advice...but please seek out a Kidney cancer oncologist. Where do you live? Maybe someone here can recommend a wonderful doctor. That is the best thing you can do right now.

    I was stage 3, grade 2 with lymphovascular invasion (lymphovascular invasion is something I have been a little concerned about, maybe that is why I mentioned it :) with a 13 cm tumor. I had my right kidney removed December 2013. I am now 53 years old. (you now have all my information - but will never tell you my weight!! lol) I go for my scan this month. When I was first diagnosed I was very positive and very hopeful because of reading everyone's stories here. There are lots of battles, but there are also many success stories and new treatments and procedures are being developed all the time.

    Welcome to our forum...

    Hugs

    Jojo

    Hi Jojo,
    Thankyou for your

    Hi Jojo,

    Thankyou for your support I am preparing for the next stage right now by getting armed with all of the information. I will be a Grade 4 stage 4 if these nods are mets. So I have a battle ahead. It is good that you are positive. I know how you would have felt after the nephrectomy and you want an upwards trajectory from there on. Best of luck Thanks again

  • Footstomper
    Footstomper Member Posts: 1,237
    Timbomba said:

    Hi Jojo,
    Thankyou for your

    Hi Jojo,

    Thankyou for your support I am preparing for the next stage right now by getting armed with all of the information. I will be a Grade 4 stage 4 if these nods are mets. So I have a battle ahead. It is good that you are positive. I know how you would have felt after the nephrectomy and you want an upwards trajectory from there on. Best of luck Thanks again

    stage 4 Grade 4

    Since May 2013. You can deal with it. It aint as scary as it seems. As one looks ahead it may look like a battle. Some people are happy with that imagery but I am not, not now I'm in 'the battle'. I just get one problem at a time, as everyone does everyday. With the help of marvelous doctors and nurses, not to mention a loving wife and kids, I just have to deal with one problem at a time. I reckon youre gonna cope with whats thrown at you. Good luck mate

  • Timbomba
    Timbomba Member Posts: 48

    stage 4 Grade 4

    Since May 2013. You can deal with it. It aint as scary as it seems. As one looks ahead it may look like a battle. Some people are happy with that imagery but I am not, not now I'm in 'the battle'. I just get one problem at a time, as everyone does everyday. With the help of marvelous doctors and nurses, not to mention a loving wife and kids, I just have to deal with one problem at a time. I reckon youre gonna cope with whats thrown at you. Good luck mate

    Thanks Stomper

    I will give it all Ive got mate thats for sure....nothing left in the tank as they say. Where are you....UK?.....I'm in australia

    Tim