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A Very Nasty Cancer

Timbomba
Posts: 48
Joined: Mar 2015

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

jason.2835
Posts: 337
Joined: Nov 2014

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's picture
foroughsh
Posts: 775
Joined: Oct 2014

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's picture
APny
Posts: 1949
Joined: Mar 2014

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
Posts: 482
Joined: Dec 2013

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's picture
NewDay
Posts: 273
Joined: May 2012

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

Timbomba
Posts: 48
Joined: Mar 2015

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

 

jason.2835
Posts: 337
Joined: Nov 2014

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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
Posts: 48
Joined: Mar 2015

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

cheers

Tim

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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!

Timbomba
Posts: 48
Joined: Mar 2015

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

Guinavere
Posts: 5
Joined: Mar 2013

I just turned 40 and have been dealing with ccRCC for 8 yrs, with 3 recurrences, the latest last year. I  have 3 kids still in middle and high school.  To me thats the hardest.  I ws told my outcome is bleak if the next tumor shows up in a place that is not surgically removable.   Every now and then I wonder if I will see my youngest one graduate high school in 4 years or see any of them marry.  These are my internal fears.  Will I see 50 or even 45.  A couple of times my Dr has made reference to "making plans".  I am a positive person but there are days I think of my future.   Cancer sucks!!  And I  was not suprised to find out I had it, my mom's whole immediate family has passed away, I didn't expect to find out at 32.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Guinavere, I don't understand why you are not on any trials? I quickly read your bio and don't see any medication trials listed. There are some good ones out there! It might be time to also seek a second opinion. Please find an oncologist that specializes in kidney cancer!! 

Try not to let this discourage you....there are other options out there!!

Hugs,

Jojo

Guinavere
Posts: 5
Joined: Mar 2013

The benefits do not outweigh the risks.  I have a great medical team, because of the cancer I am on meds because I no longer have adrenal glands.  The meds suppress the immune system, the trials that I would be on would boost my immune system but I would have to stop taking the adrenal meds, which can kill me.  Each surgery has removed the cancer therefore at the time I am cancer free, until it shows up again.  

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

Great outlook on life. Live each day to its fullest. Thinking of you.

Timbomba
Posts: 48
Joined: Mar 2015

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

Srashedb
Posts: 482
Joined: Dec 2013

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
Posts: 48
Joined: Mar 2015

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 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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
Posts: 48
Joined: Mar 2015

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's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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
Posts: 48
Joined: Mar 2015

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

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Im a expat from the Eastend of London living in the US. The most common question I get asked is "Are you Australian?" I'm not sure if I'm insulted or flattered.But anyone who floats pies in gravy is alright by me.

Timbomba
Posts: 48
Joined: Mar 2015

Hi Stomper...I picked you as a Brit. because of the way you posted....terminology and things....cos I am too....from North London actually and 30 odd years in australia now. Mad football fan of course and so is the family...carry on with traditions!

Being a G4 and S4 we are in the same boat I guess. I know I have a real fight ahead of me. In my last appt. my urologist has referred me to an oncologist...2 weeks time...and at the time I mentioned IL2...he said he couldnt remember when that was last used at this hospital....it will be interesting to see what the oncol.says. I know you had a go at it...apparrently the success rate is low...up to 10 per cent. Im a fit guy...or was...would you recommend it.

Tim

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

There's no doubt it can be tough. I was told 25% chance of cure. 20% chance of death. I dont think its worthdescribing it blow by blow. My IL2 treatment went very well at first, halving the size of my tumours and destroying the smaller mets in my lungs. Then it went horribly wrong and I very nearly died.

It was worth trying. At the moment it is the only chance of a cure. Anyway, I'm a West Ham supporter, I'm used to bubbles burtsing and fortune hiding.

Timbomba
Posts: 48
Joined: Mar 2015

Wow.....thats a fair punt you took there!.Youve got some gonads!.....As Ive said its a waiting game for me 2 x 5mm in lungs at the mo. and they will re scan in 2 half months now...then its decision time. Freaky thing is I feel the best I have in 2 years right now...getting stronger after the op.

West Ham was the first team I ever saw....Jimmy Greaves' debut from Spurs....I was about 8 or 9.....All my family are Spurs....Please dont hold that against me :) My old man was born in Dagenham....he's here in Oz too....battling cancer also...He is 88 tho' doing well after radiation.

all the best

Tim

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

My mum is also from Dagenham Village - as she called it before Henry Ford turned up. and would have been 90 this year. Had some relatives that moved to Oz. My dad was Spurs, but I forgave him so I guess I can forgive you. I remember Jimmy Greaves arriving, I was well chuffed but a bit Heartbroken thet Martin Peters moved in the opposite direction. First game I saw was Tottenham vs Fulham, when I was about 6. Alan Gilzene(sp) was playing. Jewish schoolmate took me

Timbomba
Posts: 48
Joined: Mar 2015

.....Funny thing Jimmy Greaves never forgave Spurs for selling him....hasnt been back to WHL since. I remember Peters going the other way and the 4 goals he scored when we beat Man Utd at Old Trafford.....I remember JG's debut for the Hammers very clearly, My Uncle took me.....

I appreciate your feedback and support thankyou again.

cheers Tim

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

The club doctor, who'd been with them since the sixties, met Jimmy on his debut and told him to avoid the manager. Why? said Jimmy. Because you stink of Vodka and he'll have your gut for garters. A real drinking culture at that time, Bobby Moore was no slouch in tthe beer department either

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Here's a website that shows every bomb dropped on London between 1940-41. I was looking at it as a teaching resource today and thought that your dad might get a kick out it. I'm not sure it goes as far out as Dagenham tho'

http://bombsight.org/#15/51.5050/-0.0900

 

Timbomba
Posts: 48
Joined: Mar 2015

Hi Stomper

Thanks mate...I will show my old man and Mum this. They lost a rellie when a bomb hit the chippie down the High St at Walthamstow in ww2.

Stories of people going about their business, buzz bombs and the like.....keep calm and drink tea....was the Brits. way back then !

Tim

Guinavere
Posts: 5
Joined: Mar 2013

When the doctor says nasty cancer I think they are talking kidney cancer in general.  In 2007 when I was diagnosed stage2 grade3/4.  It is the grade mainly, kidney cancer is a cancer that will come back and it can go anywhere.   This is why it is a Nasty Cancer.

 

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