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RCC Chromophobe

jnizzi
Posts: 16
Joined: May 2010

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

todd121
Posts: 515
Joined: Dec 2012

(Not chromophobe specific comment...) I've been told that the highest risk time is in the first 2 years. That's why the standard of care is scans every 4-6 months for the first 2 years, then yearly to 5 years, then optional after that. But even after 5 years the probability does not go to 0 or even close to 0. This cancer seems to be odd that way compared to others for some reason, so I would keep getting scans after 5 years. The study I am in will follow us for 10 years.

Since it's been 3 years since your surgery (is that correct?), I don't think you need to rush to see a medical oncologist, but I would see one at some point. I think it would be good to have one review your case and get an opinion. However, you need one very familar with RCC. In my opinion it would be a waste of time to see a medical oncologist who is not an RCC specialist unless they are willing to do special research and go out of their way for you. This disease is a moving target, and a medical oncologist who is not up on the latest research won't be of much help unless they have some motivation to study about it.

Todd

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

Jnizzi,

The information I mentioned is from a National Institutes of Health paper: "Surveillance Strategies for Renal Cell Carcinoma Patients Following Nephrectomy"

It says:

The greatest risk of recurrence for RCC occurs within the first 5 years after nephrectomy, with the majority of recurrences occurring within 3 years. Although recurrences have been reported as late as 30 years following nephrectomy, rates of 43% in the first year, 70% within the second year, 80% within 3 years, and 93% within 5 years have been reported.  Tumor stage plays an important role in timing of recurrence, with T1 tumors generally recurring between 38 and 45 months, whereas T3 tumors generally recur between 17 and 28 months following initial nephrectomy.  After nephrectomy, the incidence of RCC recurrence has been reported to be 7% with a median time of 38 months for T1 tumors, 26% with a median time of 32 months for T2 disease, and 39% with a median time to recurrence at 17 months for T3 tumors.

What I was remembering was the comment on T3 tumors that was more applicable to me.  Sorry if I caused you any concern.  Sometimes there is just too much information to understand, let alone retain.

Best wishes for many healthy years!

John

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Djinnie
Posts: 769
Joined: Apr 2013

I have learnt that we have to make sure we don't drop the ball. I discovered back in 2003 that I had a cancerous tumour on my right kidney,it was 3.5 cm. I had Radiofrequency ablation treatment. I had follow up CT scans and X-rays until 2008. I then moved from the States to France where I was monitored by means of echographies. I had to have a CT scan recently for another problem, the scan was queried because of a scar on my kidney. I was sent for an IRM which determined that the scar was in fact a 4.3 cm tumour on the previous site.

One thing I have learnt from this experience is not to trust echographies, in future it will be CT scans or IRM. I am hoping that this is it's last visit.

 

Djinnie

 

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

Just in case anyone doesn't guess, echography is what we know better as US -  ultrasound scanning.

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

Thank you Texas, I have obviously been here longer than I thought. I had completely forgotten the US term....lol

Djinnie

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

I forebore making that observation the other day when I saw that you'd forgotten how to spell 'yacht'  (when you referred to your yaught!) - I thought Djinnie's been in France too long! Still, given The Auld Alliance maybe I can bum a ride in your yaught sometime Smile

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

That is funny, my spelling is all over the place. I get confused with US spelling, UK spelling and some French. However, there was no excuse for that one, I can't even blame it on the meds as I finished with those two weeks back. My husband is shocked, he is thinking I had more removed than the tumour.

Djinnie x

todd121
Posts: 515
Joined: Dec 2012

I fall into that case, so that's probably what stuck in my head about 2 years being the highest risk time for me. Also, that was my urologic oncologist's plan was to monitor me every  months for the first 2 years, then annually after that to 5 years.

Todd

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

This is such a rare pathology that I, for one, would appreciate it if folks would not post material unrelated to it on this thread.  It's hard enough to assemble info on chRCC that it's a pity to have it diluted with material that could be posted in more appropriate places.  So, please can we keep this thread on topic.

I am alive
Posts: 217
Joined: Jul 2012

JNizzi,

  I'm trying to remember if there were signs or hints of metastasis. The first met backin'08? I felt a little uncomfortable in the mid chest area, enough to notice, but it never crossed my mind that it might be cancer. Small things, like my bra felt tighter than usual, made me wonder what if anything was going on .Was it related to the mets? I stopped feeling the discomfort after the RPLND surgery. Second time around I was getting CT with contrast every 3-4 months and we "watched" tiny anomolies for several months before they were declared mets.  I did feel a liTtle something awry with two of the four - just that consciousness, that vague "what's going on there?" thought that  ticker tapes across the brain. Bottom line, we can't be timid about pointing out our concerns. You don't want to make yourself crazy but you do have to pay close attention to what's going on with your body, and then act on it. (inexplicably, that's the really hard part.) You have every right to request a scan to check out your concerns. You've had cancer once - that's your gold card for followup care. I'm wondering if the urologist who told you you were "cured" specializes in RCC. One of my regrets, as stated above, is that I didn't gp to an oncologist who specializes in RCC right after my nephrectomy. I just think they are more attuned to the fickle nature of this cancer, and are more apt to encourage close monitoring. P.s. My urologist told me post nephrectomy that Ihad a 68 percent chance of being cancer free for five years. I didn't make it.

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

Jenn and Todd - a little knowledge is a dangerous thing.  So much about kidney cancer is speculation - we've only just started to scratch the surface in our understanding of it.  The "statistics"  are of no practical use to any individual patient.  Doctors aren't statisticians and most doctors don't have the slightest clue how to interpret stats.  

The received wisdom is that chRCC hardly ever metastasises but here we are with quite a few of us with mets.  We do seem to be the crew who are changing the numbers in quite a few ways - not entirely in good ways, maybe!  However, it's an open question what constitutes a 'metastasis'.  Some factor(s) predisposed us to get kc in the first place and if we get 'mets' twenty years on, after having been NvED in the interim, who's to say whether this is a 'recurrence' or just a new instance with strikingly similar cancer cell morphology. (There is the phenomenon of secondaries with occult primaries yet to be explained.)

Then again, there is a lot of difference between local and remote 'recurrences'.  Having only been dxed in Oct 2011, I may be in for unpleasant surprises down the line but so far no 'distant' mets have shown themselves.  I have a couple of compromised lymph nodes but these are very close to the original tumor site.  What I have had is 'recurrences' in several locations within just a few months of my nephrectomy.  However, these have all been very close in time and also close physically to the primary (a tumor close to my spine, removed with a second op, and one on my abdominal wall which is inoperable, plus the lymph nodes).  It's believed that the secondary tumors are not so much 'mets' as 'satellites' - leftovers from not being able to achieve clear margins in my nephrectomy.

All of these factors and many others go towards explaining why I'm still around and functional a year and a half on.  A few days ago someone on Smart Patients posted links to papers on sRCC which repeated the 'stats' which showed that with my histology (necrotic, sarcomatoid chRCC) the median survival time was around 4 months from dx - or 2 or 3 months from my nephrectomy.

Neil, I'm still alone in full detail of pathology but John (ourfriend), I hadn't realised, also has schRCC, though, thankfully with a small sarcomatoid component. 

I must also correct the false impression I seem to have given about my abilities as a golfer - I'm avid and used to play 5-10 rounds a week but without the payoff that should bring in skill, alas :(  [but then I was nearly 50 when I took the game up].  I played in a Carnoustie Club comp yesterday on the Championship Course and recorded a dreadful score, which I ascribed in part to having rowed 18,000m (11 1/4 miles) on Sunday.  Fortunately there's another excuse available - it was so windy that when we clocked our scores into the computer, of the 17 scores in, only one player had managed to break 90 (and he shot 88!) - I'm hoping it's confirmed as a 'reduction only' comp and won't contribute to the ineluctable upward drift of the old handicap.  (At least I can fall back on the excuse of having a new 'handicap'!)

Lax22mom
Posts: 1
Joined: Jun 2013

I have been lookin around this website and decided to join.  I had a partial nephrectomy on June 4, 2013. Lab report came back T1a Choromophobe RCC.   Tumor size 1.2 cm.  Furman score N/A. Tumor on right kidney.  I am A 55 year old African American female.  Blood type A+.  I have a follow up with my urologist in July to see where we go from here. This is scary stuff!  

angec's picture
angec
Posts: 621
Joined: Mar 2012

I was told by an oncologist last year that if there is significant necrosis that is "sacromatoid"...  that is why each time i read a pathology report that says necrosis i think it is such! Thanks for the clarification..

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

I guess your oncologist meant that if there's significant necrosis you can pretty well guarantee it's a case with a sarcomatoid component, the reason being that you get significant necrosis only when the tumor is very aggressive and sarcomatous change turns any cell type into an aggressive form.  So, if you see a lot of necrosis it's highly likely that you have a sarcomatoid element.

Scott_Flower-Mo...
Posts: 3
Joined: Jun 2013

However, like all of you, I wasn't given a choice to forego 'club membership'.

Wedge, in the interest of helping you compile your DB...

46 year old white male; 4 x 4 x 4.4 cm right renal mass on lower pole identified in May, 2010; nephron-sparing partial right renal nephrectomy (Da Vinci robot) performed at U.T. Southwestern University Ctr. In Dallas in July, 2010 (had to wait for robot to be available); stage T1b, non-sarcomatoid, grade 3, Chromophobe with lymph vessel involvement; regularly scheduled 6 month CTs have demonstrated no recurrence; my first-ever bone scan was performed May 27, 2013; I just got an automated email today stating my test results were now available to review online' at 6:00 am this morning; everything on the scan was clear except for "one focal area of increased activity in the right scapula spine (which I Googled to understand is my right shoulder blade).  Test result findings recommend a 'limited CT of the area to check for "anatomical correlation", whatever that means.

It stinks that I have to read my bone scan test result via e-mail, independent of my urologists' consultation on a Saturday morning, but I am smart enough to know that it's a "hot spot", and I'm in the middle of the process where we are going to try and assess if it's a met. Just got this test result this morning, and am not informing my wife until I have had a chance to speak with my urologist. I suppose it could be a benign cause for the single focal uptake area, but suffice to say, I am pretty concerned.  All blood work came back within range.  No crp test or similar was performed.  Just CBC, Creatinine, and full metabolic panel.

This is a wonderful board and forum, with a lot of good information.  I will likely be perusing it from time-to-time, and hopefully, will get some good news during subsequent CT imaging of this hot spot on my right shoulder blade. No symptoms at all in the shoulder blade.  Just feeling really fatigued overall, and have persistent dull pain in the post-operative right kidney area for the past 6-8 months, but all scans came back clear in that area.  I am not deluding myself about the bone scan, but trying not to jump the gun on a prognosis just yet.  Did I mention that getting e-mail bone scan test results delivered to my phone automatically on a Saturday morning, without any Dr. Consultation really stinks?  I am left mostly guessing and Googling as to the report findings.

3 kids: 12 year old daughter, and identical twin boys, aged 10.

Scott in Flower Mound, TX

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

We're as sorry as you are that you have the occasion to join us, Scott, and also that the latest info has been provided to you in such a crassly insensitive fashion - where do these medics keep their brains?!

You clearly have an excellent grasp of the whole matter and we'll hope that the scapula spot turns out to be inconsequential.  In any event, you'll get some well-conceived counsel here from some who are ideally placed to give it.  Fortunately you have many assets working for you and everything else sounds to be fine.

Re my db, do you happen to know your blood type?  As I've said before, it is a good idea to be aware of it in any case, against certain possible contingencies. I'd be grateful to know what it is.

I think you're wise not to inform your Wife until you have a clearer picture.  It sounds to me as though you could make a significant contribution here but I guess work and family commitments make the opportunity hard to find.  Still, I hope you'll keep us posted on your situation and drop by once in a while.  Now, about that blood group ....

Scott_Flower-Mo...
Posts: 3
Joined: Jun 2013

Thanks for the feedback Wedge; I am appreciative of the information.  Will post more as I learn more.  Let me know if there's anything else I can provide to help with the analysis.

Regards,

Scott 

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

Thanks for that additional info Scott.  We'll be hoping to hear good news from you soon.

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

Scott,

You made no mention of being under the care of an oncologist.  I would have expected that you would have at least consulted with one after your successful surgery.

If you have not done so, I would suggest now is the time.

It is certainly possible that what is showing "increased activity in the scapula" may be due to an old injury or some other cause not related to cancer.

The best way to determine that would be to seek the opinion of an expert.  But I don't think your urologist qualifies.

I have bone mets at T4/T5 vertebrae (about the level of my shoulder blades); on my sacrum (base of my spine); and left femur (thigh/hip).  In addition to my local oncologist I see a bone cancer specialist about every 6 months.  His prognosis is the most important one for me right now.

Scott_Flower-Mo...
Posts: 3
Joined: Jun 2013

NanoSecond,

The advice given to me by my Urologist/Surgeon in 2010 was that the successful partial nephrectomy is considered curative, based on the post-surgery findings.  No lymph nodes showed disease, and the CTs all appear normal.  The research I did in 2010 suggested that a post-op follow-up to an Oncologist for a T1b was not needed.  My surgeon seemed to concur, and said no further cancer therapies were called for, based on my post- op condition In 2010.

I am hoping the Scapula spot is inconsequential. Either way, I will let everyone know more once I learn more from the Scapula CT.  I will make sure an Oncologist or two weighs in on this test result as well.

Thanks so much for the feedback.  Most appreciated.

Regards,

Scott

Fizziwiz's picture
Fizziwiz
Posts: 42
Joined: May 2013

Scott,

I was given the same information, practically verbatim from my urologist. And my nephrectomy was 3 weeks ago, May 13, 2013.  

I am still not sure how that sits with me.

I am thinking about you, and yours.

Liz

Fizziwiz's picture
Fizziwiz
Posts: 42
Joined: May 2013

After realizing that nobody will advocate for me like I will, I set up an appointment with my pcp. I informed him that I needed to have a referral to an oncologist and a nutritionist.  Done, and we had a good conversation.  He really thought that what I was asking for was responsible and smart.  I also asked for, and received, a cmp, and a CBC, neither of which has been done post-operatively.  I really want to know what my labs look like post-op, and think this will be a far more accurate baseline than before surgery.  ESP take a look with new eyes at my liver enzymes, knowing now that the liver is a chosen spot for chRCC!

Speaking up for myself felt good, and I feel like I got a little control for a little while.  A nice feeling!

As a nurse, I do a lot of education with patients, at the bedside.  My pcp had never heard of chRCC, so I got to do a little teaching again.  It was great to have an engaged student.  He assured me that he will know more about chRCC the next time we meet.

i don't doubt him, and that is also a good feeling, that there is someone willing to learn with me about this new part of my life.

thank you all floor being here, and I am glad to have this thread of chRCC people.

Liz

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

Cheering bit of narrative, Liz.  You've obviously got a good guy there in your pcp - I have a similar relationship with my GP (and my radiology and oncology teams) - I guess we're very lucky compared with many folks.  

If you and he come up with any interesting insights or new pieces of info, I hope you'll share them here.  Well done on your initiative and arming yourself with as much knowledge as possible.   The good docs favour this and only the authoritarians or those who feel threatened by well-informed patients baulk at it.

Fizziwiz's picture
Fizziwiz
Posts: 42
Joined: May 2013

duplicate

Fizziwiz's picture
Fizziwiz
Posts: 42
Joined: May 2013

just embarrassing...

jnizzi
Posts: 16
Joined: May 2010

I had my CT scan, chest X-ray, and bloodwork and met with my urologist and he said everything looks good see you next year. Then today in the mail I received the clinical summary and there is a line I don't understand nor was brought up by the doc. It says there are a couple of stable hypodensities within the liver which have the appearance of cysOh shave any of this heard of this and is it something I should be asking questions about? 

Thanks!!

I am alive
Posts: 217
Joined: Jul 2012

Lax22mom,

  Yes, this is indeed scary stuff. But you had a small tumor - that's a big plus! Mine was 11 cm, removed in '04'. Surgery removed a metastasis near the aorta in '08', radiation zapped a mm met on L1 vertebrae in Dec. '11, three more teeny mets were spotted in the spring of '12, and  I started on a clinical drug trial for chromophobe and other non-clear cell RCC almost a year ago. This is what we do, live with it. But you may never have a metastasis! I forget the stats but an overwhelming majority of chromophobe cases do not metastasize. That's the absolute best case scenario, most common when tumors are small (like yours) and found early. But you should be vigilant about testing nevertheless, moving forward. The name of the game is to catch it early. Your doctor may say you are "cured" but insist on a chest X-ray and CT of the pelvis and abdomen every four to six months. You will learn a lot here and on another site called SmartPatients.com. You don't have to learn everything at once. Digest it at your own pace. Ask questions. There's no such thing as a stupid question! And the support is wonderful. You are not alone. 

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