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Chromophobe RCC - my experience

jas75
Posts: 11
Joined: May 2017

It has been nearly half a year since my right kidney was removed, and as my first follow-up scan approaches next month I thought I would share my experience. I live in the Atlanta area and am male, age 42 (was 41 at the time of my procedure), about 6'1"/145 lbs and a lifelong non-smoker and non-drinker in pretty good shape physically. 

Last October I had symptoms of hematuria show up seemingly out of nowhere. Initially I suspected a UTI, so my regular physician took samples and prescribed antibiotics. When the culture came back negative, he had me get a CT scan to check for possible kidney stones which I've never experienced before. The scan results came back with no kidney stones, but instead a large mass on the right kidney. The mass turned out to be 9.2 cm at its largest dimension. To say I was shocked would be a massive understatement.

After referral to a urologist and getting a more comprehensive abdominal and thoracic scan with IV contrast, ultimately I was lined up for a laparoscopic nephrectomy on the 1st of December. The urology surgeon removed the entire right kidney plus attached ureter but everything else was left in place. Fortunately there were no major complications so I spent only one night in the hospital and was discharged the following evening. I was pretty sore and disoriented for awhile but know many other patients have dealt with far worse.

The urologist office confirmed to me that the pathology report showed that the mass was indeed RCC, but with "good margins" and they would see me again in six months. I didn't actually get to see the report myself until very recently when the medical office's patient portal underwent an upgrade. What the office didn't tell me is that the report classified my mass as Chromophobe RCC, which appears to be a less common subtype (4-5% of total kidney cancers). If I'm interpreting the information I've found correctly, non-metastatic Chromophobe RCCs tend to be slow growing and could be associated with a genetic condition - but there doesn't seem to be a lot of knowledge on this subtype, nor much in the way of targeted cures beyond surgery. My mother has suggested that relatives on her side of the family may have developed kidney cancer, but unfortunately they are long since deceased so we have little knowledge of their situations.

For one who likes to be in control, it's humbling to have been in a situation where I had little way of knowing if there is something I should have done differently in terms of nutrition, physical activity, or environmental exposure, or if I was simply dealt a bad card from heredity. I hope to be able to report good news from my follow-up scan soon, and wish the very best to others on this board as it's clear this is a very supportive community with many who have overcome great ordeals and continue to fight every day. I'm especially interested in responses from those who ended up with Chromophobe RCC as we seem to be a pretty small minority of those with a history of kidney neoplasms. But all insights are most welcome!

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

I'm glad you found us.  I, too, am a chromie.  My cancer was 5.3 cm at the greatest dimension.  I had surgery at the end of August and a four month follow-up scan in November.  Fortunately, I was NED.   I go in again on May 31st for a second set of scans.  For the next couple years I will have scans every six months then annually after that.  If you click my "name" you'll be able to see my story.  I'd also like to have you do a search of this site and read past posts on Chromophobe RCC. 

You're right, the medical literature does state that our type of cancer is slow growing, but it is important to stay on top of your scans.  It's hard to believe but on the Smart Patients site there was a recent post of a doctor that told his patient that Chromophobe RCC does not metastasize which is absolutely wrong.   

Good luck and keep us posted on how things go.

Stub 

medic1971's picture
medic1971
Posts: 190
Joined: Sep 2015

Hi Jas75,

Sorry you had to join this elite club, but glad you found us.

Yes chromophobe tends to be slow growing and tends to have a better long term prognosis than clear cell, however chromophobe can metastasize.  From what I have researched it would appear that chromophobe tumors that have sarcoid features and/or tumor necrosis are more at risk for mets.  Your path report should have that information in it.  

Like Stub stated, it's extremely important to stay on top of your follow-ups.

In July of 2015 I found out that I had a 2.2 cm and a 0.8 cm tumors in my right kidney.  I had a partial nephrectomy at MD Anderson in Houston and kept more than 95% of my kidney.  I have follow-up visits every 6 months, however I only have a CT scan done once a year.  June 4th I’ll have my second post-op CT scan and so far I’ve been NED.

Hang in there and good luck.       

jas75
Posts: 11
Joined: May 2017

I really appreciate your responses and the stories under your names, this helps me keep in mind what to focus on and it's great that you both have not had a recurrence. Wish you both the best on your upcoming scans in the near future. Yes, I've used the search function to locate other posts about Chromophobe RCC which are helpful resources.

Per my pathology report, sarcomatoid features were not identified and the tumor was unifocal. As a correction to my original post, I checked in with the urology practice and my surgeon has only specified scans to take place annually for 5 years. But I have the six month appointment on June 12th and will be asking him to explain the reasoning behind the scans being only once a year. I'll also be probing to see if what he says about Chromophobe RCC specifically is consistent with the key points in the literature. He's performed a large number of laparoscopic nephrectomies over the years so maybe there has been a large enough sample of Chromophobes to observe trends with how these patients are doing.

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

the annual scans, too.  With a mass the size you had I'd really push for 6 month scans for a couple years.  I'm being treated at Mayo Clinic in Rochester, Minnesota.  I guess their practice is annual scans for low-risk RCC patients.  I had microscopic positive margins and had to push for 6 month scans even though they still consider me low-risk.  It's worth a conversation with your doctor.

Good luck!

Stub

 

Bay Area Guy's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

I had a 1.8 cm chromophobe lesion removed almost a year ago.  My doc told me it was usually slow growing, rarely spread and rarely recurred, the key word being rarely.  So, there are some cases where it does spread and some cases where it does recur, so he has me on a six month scan schedule.  While I hate the anxiety associated with the scan, I very much appreciate getting them as I have a family history of abdominal and aortal issues and the CT checks those out as well.

Allochka's picture
Allochka
Posts: 874
Joined: Nov 2014

Hi,

my husband had clear cell, not chromophobe, but his mass was very small and only grade 1 ( the least aggressive). But even he gets scans twice per year (ultrasound although, not CT).

so I agree with others - better check possibility to get more frequent scans to stay on top of things.

Good luck!

I am alive
Posts: 316
Joined: Jul 2012

Hi Jas,

  I was diagnosed chromophobe with an 11cm tumor in '04 and became metastatic and Stage 4 in '08. A long & winding road but still here and feeling great ("great" having been redefined somewhat, but then im13 years older now!). I second the advice to get scanned every six months rather than annually, especially considering the size of your tumor. My first met appeared 3 1/2 years after diagnosis. I was getting scanned every six months until the third year when the doc pushed the scan out to one year and that's when the first met appeared. Push for every six months for 5 years, and even then remain vigilant with annual scans.

Where are you located? I live in Pa and travel to NY to Memorial Sloan Kettering Cancer Center for treatment. Since chromophobe is so rare I think it's important for you to find a kidney cancer specialist instead of a urologist or general oncologist. And go to a cancer center instead of a private practice because they see lots & lots of everythinG and are up on the latest, greatest treatments. Plus, if you need surgery or radiation down the line everything is easily coordinated at the cancer center. We can advise you on cancer centers or doctors in or near your area. True, you are not metastatic, so there's no rush. But do it. Good to have your ducks in a row and a relationship established in case you need it. The RCC doc at the cancer center can oversee your care and work with your local RCC specialist if distance is a problem. As a rare chromie, you will find yourself a bit of a celebrity.

i hope I'm not scaring you. It's just that we've all learned to be very vigilant and our own best coaches. Deep breath. Life goes on. You & chromophobe will co-exist , or you'll never hear from it again!!  Try not to worry. We longtimers have learned that worry doesn't pay. Just ruins your day.  I  choose  to frame  chromophobe as a chronic disease like diabetes or Crohn's disease. There's no cure, but you manage it. You live with it. Stage 4 is terminal, but life is terminal. Most people have serious issues they have to deal with. Some are life threatening. This is ours. 

Good luck! Keep us posted.

 

jas75
Posts: 11
Joined: May 2017

Finally my six month checkup date arrived this past week. My surgeon is having me get a more comprehensive scan with IV contrast on an annual basis, but just a quick chest scan every six months. He said that this interval should be best in terms of the tradeoffs between regular monitoring, and the risks associated with the IV contrast that is involved in the full chest and pelvis x-ray. He also mentioned how some new immunotherapy treatments have come out recently that have helped those patients who are unfortunate enough to have a recurrence. The chest scan came back with "unremarkable" results other than "hyper-inflation of the lungs" - probably because I was holding my breath intensely when the images were captured. I don't have any significant physical symptoms at the moment and the blood test taken at the appointment also came back as normal, so hopefully all is well!

Hello I am Alive, that is alarming how your tumor metastasized after a few years of remission - but glad that you are still with us today and managing this nasty condition with such a healthy attitude. I am in the Atlanta area, where I know there is Emory University's hospitals plus a Cancer Centers of America branch. I hope I'll never need recommendations, but you're right that it makes sense to get an idea of the venues for treatment especially with chromophobe being an unusual subtype.

Thanks to all for the wishes of good luck, I appreciate it and hope as many uneventful scans as possible of you or your loved ones are coming up in the future.

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

I also had my nephrectomy at Emory 5 years ago.  My tumor was the same size as yours, but mine was of the rare “unclassified” type.  I will offer my 2 cents.  First, I recommend that you start seeing an oncologist instead of urologist.  Urologists are experts at removing kidneys, not experts managing kidney cancer.  I assumed mine was, but, even though he was director of minimally invasive surgery, and even after telling me I had a large, aggressive tumor, he did not order a chest CT.  He also told me I did not need an oncologist since he “got it all” and I was “cured.”

Unfortunately, there are no RCC specialists in Georgia.  You might consider what I did.  I traveled to MD Anderson in Houston for a one time consult with an oncologist that specializes in rare types of RCC.  I wanted to hear from an expert what my risk of recurrence was and what my follow-up plan should be.  Unfortunately, it was there that I learned my cancer had spread to my lungs.

NCCN guidelines are that for stage II RCC, you should have chest and abdominal scans every 3 to 6 months for 3 years and annually up to 5 years.  My insurance kept denying my scans, but my doctor was always able to convince them.

Since you also have a very rare type of RCC, it would be a good idea to get a consult with an oncologist that specializes in rare RCC.  I saw Dr. Tannir at MDA. 

Another option, which I also did, is to contact NIH.  Kidney cancer does not usually occur at your age and this can suggest a hereditary type of RCC and this could change your follow-up plans.  NIH specializes in hereditary RCC.

If you want to contact either one, let me know and I can give you more info.

 Kathy

Lizzie1210
Posts: 1
Joined: Nov 2017

Hi, my husband recently found out he has a chromophobe tumor on his left kidney. They found it quite by accident as he was having a CT scan of his heart. Long and short of this is, he’s having surgery on 11/27 and both he and I are nervous. He has never had major surgery, he is diabetic, has chronic afib and is obese.  Anything you can tell me would be helpful.

rdoyd2
Posts: 78
Joined: Aug 2016

did they give you an estimated size? they will not be able to confirm its chromophobe until   it is removed and sent to pathology. chromophobe is usually very slow growing and according to most studies usually has a great prognosis provided there are no sarcomotoid or  rhabdoid features. my chromophobe was 11.7 cm in size . i had my left kidney removed . i was released from the hospital the next morning. i was home withen 24 hours of the surgery. the gas was the worst. have him move and walk as much as possible  to get the gas to go away. the first three days were kinda hard but after 2 weeks i was feeling normal again. i went back to work after 4 weeks. i did not have any pain meds. just a pain pump that i removed at home after 3 days. it was also my first surgery ever. try not to get too nervous.

jas75
Posts: 11
Joined: May 2017

One year after the right nephrectomy, I've recently had my first post-operation CT scan. The six month checkup in June just involved a chest x-ray (which showed nothing of concern) so this was the first time that my abdominal area was imaged.

Fortunately, this week's CT scan with IV contrast did not find any evidence of metastatic disease within the abdomen or pelvis ... so I guess that counts as 'NED'. Wink It did locate "a few subcentimeter hypodensities within the left kidney which are too small to characterize". Hopefully those are just simple cysts, which were also identified on the CT scan I had a little over a year ago before the nephrectomy. I am meeting with the urologist on Monday and hoping that he will give me reassurance when looking at the images. Because I only have one kidney, I was injected with a lower dose of the IV contrast, so it may be difficult to diagnose small items on the images with much clarity.

rdoyd2
Posts: 78
Joined: Aug 2016

great news jas75, congrates on ned ! the words we all like to hear

jgabrielson
Posts: 3
Joined: Mar 2018

I was diagnosed in September of 2017 after two kidney biopsies came back negative...it wasn't until lymph nodes were inflamed and they biopsied them and found Chromophobe.  I have a radical left nephrectomy at Mayo on November 1st.  they also removed 9 lymph nodes of which 3 were positive.  I just returned from my first follow up appointment and they found several very small spots on my lungs.  they are two small to biopsy or even measure.  Now I go back in two months for a follow up.  has anyone had this happen and what kind of treatment followed?

Jackaroe's picture
Jackaroe
Posts: 23
Joined: Feb 2013

Mine was chromophobe. My surgeon was pretty happy about it when he gave that information.

 

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

Welcome, jgabrielson.  Can you provide us with some more information about your cancer?  Size and pathology results will help us get to "know" you better and provide stronger feedback.  I'm a little over 1.5 years out from my partial and have had clear scans up to this point.  I can imagine your fear right now and the waiting is almost numbing.  Stay strong and lean on your support system as much as you can.  That support system now includes us.

Good luck!

Stub

jgabrielson
Posts: 3
Joined: Mar 2018

I had two tumors on one kidney, one was 3.8 centimeters and the other was under 1...I was diagnosed at PT3A N1.  they said it was quite unusual for it to have spread to the lymph nodes given the size of the tumor.  I am now seeing Dr. Pagliaro at Mayo, and he seems to have dealt with this particular cancer often, so that makes me feel better.  I was quite surprised that my first scan, post-op, showed mets.  I have 3 daughters that are in the healthcare field and they have helped me tremendously, but it really helps to have support from people who have experienced this. 

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

have you got your pathology report

 chromo tends to move (if ). much slower than that

several spots?.

where and how many

how was your mass found.. what symptoms 

sorry i dont have any direct experience of mets ..   but more info will help

Annie

dannyboy1969
Posts: 20
Joined: Nov 2017

Hello Annie.  Hope you are well.  JGabrielson is my wife and has joined this tight-knit community.  In September of 2017 she was experiencing flank pain and went to the ER.  They initially thought it may be kidney stones but tests revealed the renal mass.  After a few biopsies, the results were sent to Mayo for confirmation of ChRCC.  Her nephrectomy in November revealed (2) separate renal masses and 3 of the 9 lymph nodes removed were positive for Chromophobe.  Our latest trip (last week) was going pretty well until the oncologist read the Chest CT.  He stated that it is very likely that she now has pulmonary mets and also some intrathoracic lymph node mets.  We looked at her CT images and found one slide that shows the areas in question and it appears that there are 7 or 8 spots that were highlighted.  They are too small to biopsy so they want us back at Mayo towards the end of April for follow up to see how they are progressing.  We'll just stay positive and hope for positive results next month.

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

Hi, dannyboy.  I know this is a very scary time for you and your wife.  Have you or your wife had an opportuinty to check out smartpatients.com?  Right now there are a couple threads going for Chromies.  I think you'll find the information worthy of your time.  I also want to direct you to a member on smartpatients.  He goes by "Weissman".  Initially he was being treated at Mayo in Rochester (like us).  At diagnosis he was stage 4.  Because of location AND his opinion that Mayo wasn't really focused on stage 4 RCC patients, he chose to transfer to University of Iowa clinics.  I'm not sure if this is helpful, but I wanted to reach out to you.

Best of luck to you and your wife

Stub

dannyboy1969
Posts: 20
Joined: Nov 2017

I've been on that site too and found that there are quite a few Chromies there as well.  That site has been helpfull too.  I'll see if I can touch base with Weissman and thanks for the info on University of Iowa.  We'll see what happens after this next visit in April and see where it takes us.  Thanks for the wishes.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

So sorry your news is not better than that

you must have got a terrible shock

I hope and pray  that these are not what they say and remain  same or regress

did DR not think it was odd  to see several spots

Fox had many spots at one time and all treated 

There are some great stories on SP of chromies having many many years with the new treatments so please don’t get ahead of yourself yet

easy for some one to say I know but let’s not

what did the pathology on the kidney tumours say

Annie

 

 

dannyboy1969
Posts: 20
Joined: Nov 2017

Sorry for the delay in getting back regarding the pathology.  Furman Grade 3 with no sarcomotoid or rhabdoid features.  Multifocal and I think the largest tumor was about 3.7cmx1x1 and the other was about 1cmx1x1 (I don't have her pathology report sitting in front of me so I'm going on memory).  TNM Staging is pT3a N1 Mx.  We are looking forward to the scans and my wife has radically changed her diet and virtually eliminated sugars.  Just keeping our fingers crossed for good scans at the end of April.  Take care.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

oh this is all very scary for you both

this Sounds unusual for a chromie... I thought they stopped classifying these on the furman grade

i don’t  think I could wait to April

i don’t want to panic you but  waiting is not something I could do

we are always here

Annie

 

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

I'm being followed at Mayo in Rochester, Minnesota.

jgabrielson
Posts: 3
Joined: Mar 2018

I am also being followed at Mayo in Rochester.

jas75
Posts: 11
Joined: May 2017

Original poster here, 2.5 years after my nephrectomy. I've had chest X-rays every 6 months and CT scans once a year, and so far no signs of any recurrence. My bloodwork numbers are normal and the whole checkup process has been getting a little easier to deal with each time.

It helps me a lot to read the experiences and perspectives from everyone on this board. I am sorry that some people have dealt with more difficult situations than I have so far, and recognize that there still so many unknowns about this disease. But many of us will have long, healthy lives after the RCC is removed, which I hope can bring some comfort to those who are more newly diagnosed and trying to learn what comes next.

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

I'm so happy to hear your news.  Thanks for the update!  I'm hopeful this continues for a long, long, long time for you.  

Stub

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

If not, it may be worth a conversation with your surgeon or the doctor you follow-up with.  Yesterday I had the opportunity to meet with a genetic counselor and a geneticist at Mayo.    I was diagnosed when I was 47 and even though the NIH recommends genetic testing for people diagnosed under the age of 46 I asked my doctor last June if he would consider a referral for a genetic visit for me.  He looked over my records and agreed.  

Here was the process I followed at Mayo:  On the patient portal, I created a health history of my family tree of 1st blood family members (parents and siblings along with my children). They recommend including aunts, uncles, cousins, and grandparents.  Just for a complete family tree I also added my nieces and nephews.  This wasn't too big of a process for me.  I got to call and talk to relatives I hadn't had the opportunity to visit for years.  It was great to catch up. 

Once I submitted this information the doctor has access to it and reviewed it prior to my consultation.  I first met with the genetic counselor.  She reviewed the health history of the family tree and filled in any missing pieces and clarified any diagnosis of family members.  This took about 30 minutes.  I then got to meet with the geneticist who (very thoroughly) reviewed the family health history with me and evaluated possible blood links.  She talked about several genetic disorders like birt-hogg-dube and Cowden syndrome.  Although I don't have characteristics of either of these syndromes she said I could be a carrier and be more susceptible for cancers.  Point of interest for her was my dad and my sister both had melanoma (at age 74 and 28).  She found this particularly interesting.  Because of the rarity of chromophobe RCC, my age of cancer diagnosis, and the fact that I had two 1st blood relatives that had melanoma, she recommended genetic testing.

She cautioned me and asked me to prepare myself for the three potential outcomes of the testing.  1.  It could come back negative, 2.  I could carry a pathogenic variant with cancer-related genes, or 3. I could carry a variant of uncertain significance.    

For me, it's about finding an answer to the "why" of my cancer diagnosis.  More importantly, it's about preparing and caring for my children.

If my insurance company accepts this referral then my blood sample (DNA) will be sent in for testing and I should get the results in about 6 weeks.  If they don't accept it then the geneticist and I will have a conversation about the possibility of using a different testing company and it will be at my cost. 

Hope my story helps.

Stub 

  

daisybud's picture
daisybud
Posts: 461
Joined: Jan 2016

Because my mom died at 48 from melanoma.

I did see a link while researching and see dermatologist yearly for exam for many years due to the family history 

Oregon_kev
Posts: 2
Joined: May 2019

New poster here, 10 days out from radical left neprectomy surgery.  pT3a, 7.8 cm chromophobe RCC.  Positive genetic test 20 years ago for Muir-Torre syndrome.  I insisted that my tumor be tested for microsatellite instability, which came back MSI-High, characteristic for genetic DNA defects.  It is somewhat satisfying knowng that there is an assigable cause, yet the implications are disheartening at the same time.  I can't help but think that I should have been more diligent in my screening tests, knowing I had the gene change, yet, how many years of testing can you conieveabley put yourself through, with only clean results before you start to let the tests slip...

Just wanted to say hello, so hello!

Kev

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

Happy to "meet" a fellow chromie.  

You were definitely smart in asking your doctor to check the tumor for your genetic variant.  Based on your comments and the little research I did on Muir-Torre syndrome you'll certainly want to be dedicated to your scan schedule.  Did your doctor set your schedule up for every 3 months or every 6 months?

Again, welcome!

Stub

 

Oregon_kev
Posts: 2
Joined: May 2019

Not really the "club" anyone wants to be in, but this is a great place for info.  I don't have any schedule yet, but will in a cople of weeks when I see my surgeon.  I do feel fortunate to have made it out of this relatively unscathed (if you want to call it that) as I have outlived 4 of my cousins.

 

Kev

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