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Stage 4 Kidney Cancer- Cured by Surgery Alone?

jodim
Posts: 3
Joined: May 2013

Hi everyone,

 

My 48 year old husband was recently diagnosed with stage 4 kidney cancer. He is atypical stage 4; his primary tumor was small (4 cm), grade 3, but it spread to his gallbladder (8mm) and eye (less than 2 cm). He had surgery to remove the tumor on his kidney and got clean margins. They also removed his gallbladder in its entireity and radiated his eye.

 

He has been declared NED and they are not recommending systemic treatment. I have very mixed feelings about no therapy following surgery. Is anyone else in this boat?

 

Thanks, in advance, for sharing.

 

Jodi

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Thanks for coming here!  I am sorry for yor ssituation. You and he are members of a small club that has few perks except supportive people sharing care for each other. 

I'm deferring from speaking to this because I am not anywhere near on conversant withthis.

Ihope some of our brainier folks can jump in with some commenatary! 

I am sorry for your reasons for being here, but welcome you as a new friend on this journey.

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

I wouldn't say I am cured, just have been living with stage IV RCC with surgical treatments only for 5 years.

5/2008 Open Left Radical Nephrectomy

6/2008 LLL, Thoracotomy

5/2010 RML Wedge Resection

4/2012 LLL, Lobectomy

 

Jon

 

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

jodim:  I'm sure more knowledgable folks will be able to help you but for now.....   As I understand it....renal cell carcinoma is a nasty little sucker that presents a bit of a moving target for treatment.  Upon detection a pretty standard protocol of assessment and direct treatment is normally pursued.  Once the primary tumor is excised and any immediate metastisis is dealt with, systemic treatment is questionable.  As you probably know, current drug therapies are targetted at tumor nutrition and growth.  Their purpose is to starve the tumor rather than direct toxicity... key point here being that there needs to be a tumor in the first place.  As far as I know the only currently available therapy that claims any kind of ability to actually kill a tumor outright rather than starving it is high dose Interlueken 2.  As you no doubt have read, it only has about a 7-15% significant response rate.... and it's VERY expensive and tough on the patient.  For these reasons it is not used in a "search and destroy" fashion since without a metastisis to observe, there is no way to judge response....did I mention it is VERY expensive and tough on the patient?   As others have probably told you, atttitude is a great determining factor in outcomes.  A Pollyanna attitude of blithe disregard is no more beneficial than staying in bed waiting for the end.  Every day research advances make Renal Cell Carcinoma potentially a chronic disese.  Don't spend time worrying about non-specific doubts.  The other folks on this site have heard this before but this one's for you.   LIVE 'till you die and you ain't dead yet!

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Jodim, 

With cancer you can never assume you are cured, I was first diagnosed in 2003. I had a tumour under 3cm non aggressive, removed from my right kidney. Even though I have been monitored since then  a second tumour was discovered on the same site in Dec 2012. This time it was just over 4cm and grade 3. My current surgeon was more focused on the clear margins than the grade. As far as they can see I have no signs of cancer elsewhere and the cancer is now gone. There is no treatment necessary right now. For us it really is a case of wait and see, and just hope for the best. 

What we can do is try to take care of ourselves, eat healthy, exercise, watch the stress levels and keep up with the scans. More importantly to enjoy every moment and cherish every day.

Djinnie 

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

Your husbands case is, as you mention, quite atypical (stage 4 with complete surgical removal). But as a general guideline, if everything is removed surgically and there is no indication of spreading, regular controls is the standard follow-up procedure. Adjuvant treatment/therapy is not used very often, and has so far provided very flaky results without any clear indications that makes it usable as a general preventive treatment.

/G

 

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Surgey is the best tool for mangaging isolated occurrences.  If there is a signle met,  remove the primary and the met, and if you are lucky, that is it.  Otherwise, you play whack a mole.  The think is, there may be a time when surgery is not an option, for example multple mets in multiple loves of the lung.  You need the meds from them.  In order to use the medss effectively (now at least), you need something to measure against.  With NED, there is nothing to measure, so they do not like doing meds with NEDS.  There are some adjuvant trials, but the results have been negative so far, according to my Dr's at NIH.

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

IL-2 *is* proven to provide longterm response (cure, if defined as 5+ years NED), with an increasing mass of patients crossing the 10 year mark. To use the word cure is not, if being rigid about the usage, applicable until those people start dying of old age in a larger scale. The percentage of people showing longterm response is however limited even though its proven. But since IL-2 (and other immuno therapies) have proved to at least be capable of resulting in longterm response, the immuno therapy track is the one taken by most research looking for a RCC "cure".

A lot of research going on right now, check out the "Whats coming down the pike" thread on this forum.

/G 

foxhd's picture
foxhd
Posts: 1921
Joined: Oct 2011

Great description. It seems totally improbable that if ANY cancer cells have left the primary site and have travelled the body, that there would only be evidence of only a couple which could successfully be removed. Sort of like a dandelion which releases it's seeds which blow into your neighbors yard. You cannot control them.

It would be wrong and irresponsible to not have regular follow up and scans by a good renal cell oncologist. This is a consistant belief from this boards members.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Jodi, you've had a great rapid response from our 'team' here and it's all good stuff - informative and accurate.

I'd like to take it a little further still.  As you said, your Husband's case is very unusual, and in several respects.  For instance, I've never heard of any metastatic effect on an eye and mets to gall-bladder but not to lungs or liver is, I think, unheard of.  To be stage 4 with such a small tumor is also very rare and unlucky.  So is having remote metastases but only grade 3.

I think you may have some inaccuracies in the information you've given - of the eye, I think you must have meant 2 mm not cm? 2cm is almost an inch!  You've said it's kidney cancer - is it the most frequent form, renal cell carcinoma (RCC), or is it some rarer form of kidney cancer?

Assuming it's RCC, have you been told what type of RCC it is?  It's likely to be "clear cell" but it might be one of the rarer types, such as "papillary", "chromophobe",  "collecting duct", "translocation xp 11.2"  or others.   it would be very helpful if you can find out the answer as to the exact type, since this matters both for treatment and for life expectancy.

There is a nasty further change that can occur with any of these types of RCC. It's called sarcomatous (or sarcomatoid) de-differentiation.  That's really bad news but I'm pretty certain it doesn't apply to your Husband since he's been graded 3 and sarcomatoid RCC is always graded 4.

The way he is being treated sounds right, for the reasons Gordon and G gave above. Assuming the nephrectomy and gall-bladder removal, as well as the irradiation, have all been completely successful, he may be "cured" (though that's a dangerous term to use about kidney cancer, the sneaky disease).

As an example, like a few other members here, I was stage 4 and grade 4 at first operation.  On the scan before my nephrectomy the tumor was still 8 cm and fully contained within my kidney.  By the time of my first op it has burst through all defences and was 9 cm.  However, the surgeon thought he had "got it all" (another dangerous thing to say with cancer) and that might be the end of it - I could have been NED (no evidence of disease). Unfortunately, it had already become a case of advanced sarcomatoid change and I got another tumor very soon afterwards.  That was the only thing visible and another op removed that tumor.  I was labelled NED but only very briefly because almost at once another, large tumor appeared plus some lymph nodes showed cancer. 

Until then, there seemed to be a good chance that I would never need further treatment, except for fresh surgery if a single further met appeared.  That seems to be the situation your Husband is in. 

Unluckily for me, I have a very rare form - chromophobe RCC with sarcomatoid de-differentiation and the latest information about this is that at the time of my operation the median (average) survival time was about 70 days.  Still, here I am, more than 17 months later, still alive and enjoying life, so the statistics aren't a reliable indicator for the individual person.

Your Husband's case is far, far better and he's young (I'm 70).  There is a good chance he may not need systemic treatment (drugs) in the foreseeable future but he will need careful monitoring with scans to ensure that if anything more should turn up the docs can deal with it immediately.  You should both keep your spirits up and expect a good long future together.

donna_lee's picture
donna_lee
Posts: 407
Joined: Feb 2009

I, too, was Dx'd with Stage IV in 2006. They were aware it was also in the liver and not sure about any nodes.  At that surgery, surgeons removed R. Kidney, nodes behind it with 2 of 11 positive for RCC, the left half of liver, plus the gall bladder which had a congenital malformation in the main bile duct.  Final path was T2N1M1 with Fuhrman of II/III-IV.  No drug therapy.

A year later-2007, a single node was found to be enlarging; removed; positive for RCC. No drug therapy.

Another year later-2008, another single node; removed; positive for RCC.  No drug therapy.

I have regular CT's or a combination of untrasound & chest xrays. and have been OK for 4 years.

Since there is no evidence in bones or soft tissue or other organs, the thought is that blanket drug therapy would not be indicated and could do more overall harm than good.

Best wishes to spouse and keep up a good attitude.  Give 'em He.., Harry.

Donna

 

todd121
Posts: 593
Joined: Dec 2012

You've received a lot of good information. I'm just doubling down on confirmation that there is no drug therapy if the cancer has been removed surgically. If your husband had clear cell RCC (which is the most common type and what I have), my doctor's all agree that there's no approved adjuvant therapy (meaning no chemo if you have no mets).

I'm in a drug study to see if Everolimus might be effective as an adjuvant therapy. There are some studies going on of Everolimus and Votrient and some others. However, all the studies I looked at didn't allow patients with any cancer outside of the kidney to participate (you had to be stage 1,2, or 3). If you wanted to take part in a study, you might find one, but I'm not sure if there are any. Your RCC medical oncologist would be the best person to ask that question to, although you can look online as well for studies.

I hope that he stays free now that they got it all.

Todd

jodim
Posts: 3
Joined: May 2013

Thank you all for your responses.

 

My husband's kidney cancer was detected because they found an eye tumor (he was completely asymtomatic otherwise). He had flashed of light and impaired vision. Long story short, they found a tumor and ordered a CT scan to determine where it was coming from. Three areas lit up--gallbladder, colon, and kidney. Colon was a benign tumor. They thought gallbladder was benign until the pathology came back after surgery.

 

Anyway, he had 1/3 of his kidney removed (primary tumor was small, grade 3) and got clean margins. Gallbladder was removed completely. His eye was radiated so that tumor is dead. Otherwise, both ct scan and MRI show NED.

 

My Mom is in the late stages of ovarian cancer; with ovarian, they always treat systemically to knock microscoptic cells out. I realize the approach to kidney is very different.

 

My husband's case is very atypical...no node involvement, no adrenal gland, nothing...just went to the gallbladder and some think to the eye (though that was not biopsied it is the belief).

 

Thanks for the support. We are keeping our spirits up. He's a fighter with so much to live for! Sounds like all of you are as well.

 

Be well,

 

Jodi

jodim
Posts: 3
Joined: May 2013

And, yes, it's clear cell...no mix. Just clear cell.

maxidvd53
Posts: 2
Joined: May 2013

Hi. I had surgery on May 1, 2013 to remove a 2.2cm subgrade tumor stage 2(surgeon used the term subgrade) with clean margins. The cancer was only in the right kidney and follow up in 6 months is the next step. My wife wants a consultation with an oncologist to discuss other options. I'm nervous about the (no follow up treatment) or therapy. Same feeling different boat. Good luck.                  David

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

What options?  What more do you imagine you need apart from monitoring?

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

A 2,2 cm tumor cannot be a stage 2 by definition. Sure it isnt GRADE 2?

Additionally, if the nephrectomy was intendedly curative there is no need for additional treatments. You were caught very early which gives you a 95+% long term survival rate. So unless theres some negative prognostic factors you didnt mention, you should just make a sigh of relief and enjoy life :-)

if you and your wife however feels theres questions unanswered or want a detailed walkthrough of it all, consult an oncologist with knowledge about RCC.

Best wishes

/G

maxidvd53
Posts: 2
Joined: May 2013

Hi and thanks for your reply. I'm just having a hard with the idea that the surgery could be the only cure.             David...

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

From my reading, with tumors of that size and grade, the prognosis is really pretty good that this is the only treatment you'll need.

The KEY issue, as I see it, is to remain vigilant with follow ups.  In fact, be aggressive about follow ups! You be the motivating factor in getting checkups and scans.

Congratulations on a successful surgery and a good prognosis!

Michael

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi David,

In the early stages RCC is slow growing and very content to stay in its own little world until it eventually outgrows its space and branches out, prior to that it just isn't anywhere else.  At 2.2cm yours was caught very, very early and the likelyhood that the surgery got it all (cured you) is very high.  If it were more advanced and the possibility of spreading were higher there are therapies available, but why put yourself and your body through it if unnecessary?  Just be vigilent, in the unlikely event that it returns you'll catch it early again and by then we may have an actual cure that doesn't require cutting.  Mine was 4.2cm and its been over 3 1/2 years, I'm planning on stretching that to 30 or so.

Hang in there,

Gary

nyisles's picture
nyisles
Posts: 26
Joined: Mar 2013

except that I have two IL-2 oncologists that say different things.  One wants to wait and see if the cancer will come back and the other wants to blast my body will high dose IL-2 in order to prevent it from coming back.  I am Stage IV and had my kidney removed along with a side wall mass on surface near my stomach, 2 lung nodules, and 2 spots on chest wall that was shielding the kidney. Only a "speck of dust" remains on my right lung.  My dilema is to wait and see if it comes back (get the 2nd lung surgery), or leave the speck and undergo heavy IL-2 treatment to prevent it from coming back and to knock out the "speck".  I turned to the people on this site for advice and they seem to think the wait and see approach is better than blasting a body with NED since there is no stats that support the success of preventative treatment with IL-2.  If anyone has stats please let me know.  I plan on contacting various cancer sites to see if they have any stats on preventative treatment with IL-2.

chenzo's picture
chenzo
Posts: 3
Joined: May 2013

I have just had my right kidney removed on the 29th of last month, due to having a 6.5cm tumor. The cancer was a stage 3. I have also been told, no chemo or radiation. the Urologist has said that it didnt spread anywhere else or get in my lynphnodes. I have to get scans and bloods for the next 5 years...fine by me just quietly..better than the other outcome. 

foxhd's picture
foxhd
Posts: 1921
Joined: Oct 2011

Just as another bit of info, I had my nephrectomy 3/11 with no treatment because of good scans. Then by 10/11, I had at least 20 mets! They sprung up faster than a field of dandelions. My advice will be to keep up with scans and blood work. I also promote learning about clinical trials prior to needing further treatment. Immunotherapy is the magic bullet. As of this writing, I've had almost all tumors disappear except 2-3 in my bones which appear stable. And as we know, stable is very acceptable. My cancer is more of a chronic disease which we are managing with nivolumab (mdx-1106).

GSRon's picture
GSRon
Posts: 1260
Joined: Jan 2013

Yes to what da Harley Man said..  I too had clear scans for most of a year.. then bingo..!  Mets in both lungs and on my one Adrenal Gland..   On Votrient now, will find out in about 7 weeks THAT it is working...

Be Well...

Ron

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