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Chromophobe RCC

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

This is my first post, although I have gained a lot of useful info from everyone else's posts over the past few months. I have my 2nd scan (6 months post-op) scheduled for next Monday. My first scan was clear, and for that I am very thankful. I pray the same will be true with the next one.

My question is this - does anyone else have experience with Chromophobe Renal Cell Carcinoma?

My tumor was found on 03/17/17 in the ER when they were scanning my lungs to see if I had a PE. The tumor was the size of a football, so the top could be seen on the chest CT. My entire left kidney and tumor were removed on 03/21/17 (it measured 17.0cm x 10.4cm x 18.9cm). The path report came back Stage pT3a with the Chromophobe RCC type. My doctor told me that Chromophobe RCC has a very low recurrence rate.

I had 2 follow up visits - 1 to have my staples removed, and 1 after my first scans. Oncology refused to see me because I did not have any mets. I follow up with the new/replacement Urologist in September. I'm not sure if I'm just lucky that I don't need more intensive follow up, or if something is missing. Any input from folks with the same diagnosis would be welcomed.

Thank you!

stub1969's picture
stub1969
Posts: 792
Joined: Jul 2016

Good to hear from a fellow Chromie!  Click on my "name" to read about my cancer and journey. 

For the most part, I would agree with your doctor about the low recurrence rate, but our type of cancer certainly can metastasize, especially when the tumor is large or has rhabdoid features.  I don't mean to scare you, but this is our reality.  We need to be vigilent in our scans.  If our cancer returns, we want to catch it early.

Good luck with your scans on Monday.  I'll pray that Uncle NED visits you again.

Stub

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

Thank you so much!

MizzouFan
Posts: 10
Joined: Nov 2015

My chrcc tumor was 16cm and shaped like a football. The strongest prognosis you have about reocurrence, is in your surgical pathology report. What you do want to read is nuclei are small, uniform, and low grade. What you don’t want to read is nuclei is enlarged, hyperchromatic, highly atypical, and of high grade, mostly you don’t want to read with Sarcomatiod features. Recent studies indicate that Chromophobe does have a pre-sarcomatoid state, in which metastatic disease is more likely. That would be the above mentioned high atypical nucleI. This is what I have, I do have metastic Chromophobe, I am heathy and five years into the disease. We are all different, but I hope this helps.

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Ditto what Stubs says. Best to you!!

Bay Area Guy's picture
Bay Area Guy
Posts: 384
Joined: Jun 2016

I had a 1.7cm lesion on my right kidney that was determined to be chromophone RCC after a robotic partial in June, 2016.  Obviously, my lesion was nowhere near your size, but my surgeon told me that chromophobe rarely returns and rarely spreads.  The key word there is rarely.  In the year since my surgery, I've had two scan/chest x-ray sessions, both of which were clean and the surgeon has put me on an annual scan/X-ray schedule now.  Again, with the size of your tumor, I don't know if the prognosis changes or not.

Here's hoping your scans on Monday are completing clean.

I am alive
Posts: 316
Joined: Jul 2012

I had an 11 cm tumor 13 years ago, fully encapsulated with some necrosis. First met appeared almost four years post nephrectomy, so I am here to tell you to STAY VIGILANT and keep getting tested at least twice yearly the first five years. But since yours was so big, klj, I would insist on testing three times a year - every four months - for the first two years at least. So yes, chromophobe does recur. The good news is it is usually - though not always - slow growing. I have been stage 4 for 9 years. Not a walk in the park, but I enjoy my life and feel very lucky. Since becoming stage 4 I've had four surgeries, radiation, spent 22 months in a clinical trial which kept me stable but I developed heart failure and Lymphedema from the drugs. The heart failure reverted to low normal after getting off the drugs, but the Lymphedema lingers, though improved. I have been drug free for almost 3.5 years while we "watched & waited" as slow incremental growth ensued - but also a kind of wave of slight increase followed by slight decrease that kept me technically "stable," if you define the word loosely. Have been told it is time to start another systemic treatment since the cancer is marching forward. "It's not a four-alarm fire. Not even a one-alarm fire," the onc said. So it goes. I hope he's right!

 But let me also add this: the best test is a CT with contrast of the abdomen, chest & pelvis. I'm not sure if they give you that if you are not metastatic, but I would ask the doc for the CT and see what he/she says.

 

i don't mean to scare you, but this "doesn't usually reoccur" thing is a mythology that doctors with less chromophobe experience cavalierly tell their patients. Just stay vigilant. You'll be good. 

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

I also found out I am Chromophobe last week

mass was 4.4  and I was told all contained but I don’t get the full pathology report  and follow up for another three weeks

My surgeon sounded postitive but the scary thing is the lack of information and data on this rare cancer

Unless  there is a worldwide central database  which we could access it is impossible to make any strong predictions on such small numbers

It is very worrying to not have had a follow up oncology plan for masses of sizes mentioned above

 

I am heartened by your stories and send best wishes to you all 

I am alive   You sound as if you are one strong lady  I pray and hope you continue on your slightly bumpy road

 

Annie

 

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

Thank you all for responding. It is helpful to me to read your stories, and learn of your experiences. My 2nd scans were clear, so that was great news. My new urologist is concerned about some spots on my liver that may just be cysts. I was referred by him to an Oncologist for consult, so that is also comforting. The most important lesson I've learned to be way more proactive in my care. I have done more research in the past 7 months than I've done in all my years of schooling. If I don't advocate for myself and my health, no one else will (besides my great husband, of course).

 

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

From one Chromie to another

 

Have these spots Just appeared since last scan.  They must be very small but slightly worrying nevertheless 

 

How quickly do you think you will see the Oncologist

 

Annie

 

 

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

The spots on my liver are very small, and have been consistent in size and number since my first scan post-op. Two of my doctors think they are just cysts. I am going for a second Oncology opinion to be more certain. I saw one Oncologist a week ago, he just wanted to lecture me on why I don't need to see an Oncologist. I see the Oncologist I actually want to see at the end of this month.

 

Kidneylady
Posts: 1
Joined: Nov 2017

Hi everyone. My 45 year old husband was diagnosed with a 12 cm kidney tumor on a CT done to look for a kidney stone on the other side.  He had a radical nephrectomy last month and was diagnosed with stage 3A chromophobe RCC. There was some vascular invasion, lymph nodes negative.  His follow up is going to be CT scans every 3 months for now.  Wish us luck! 

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

Good luck to your husband! I hope all is well with his recovery and future scans. It took me much longer than I anticipated to recover from my radical nephrectomy. I have an 8" incision across my abdomen to my midline. I still have problems with certain movements that use the upper abdominal muscles, but generally do pretty good now.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

You are on a tough road but  good signs so I pray that you stay on the good side

 

 there are a few people on here with similar sized tumours and clear after 3 to 4 years

 

please keep us updated and best of luck

Annie

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

Sorry to hear about your husband. Glad all has been takin care of. I wish you and him all the best in the future!!

dannyboy1969
Posts: 20
Joined: Nov 2017

I'm a newbie to this site and I tried to post something earlier but must have done something wrong.  Shocker.  Last week my wife underwent a Left Radical Nephrectomy.  Tumors weren't too large, but (2) were present and turned out to be Chromophobe RCC.  What concerns me is the involvement of her lymph nodes.  9 nodes were removed and (3) were positive for Metastatic Chromophobe RCC.  Her surgery was at Mayo and went well and I'm trying to learn as much as I can about this.  I am still trying to process this and thought I'd find someone or somewhere to go to reach out for help.  We were told by her surgeon to follow every 3 months for the first 2 years and every six months after year 2.  During our first 3-month visit to Mayo, the doctor will get us connected to an oncologist there in Rochester.  It sounds like Chromophobe RCC is slow growing, but the metastasis scares me.  Also, since it involves the lymph nodes, it appears that our new normal moving forward is to be vigilant in our scans.  Prognosis is impossible to pinpoint, but I just want an idea of what might be ahead for us. 

MizzouFan
Posts: 10
Joined: Nov 2015

Dannyboy, I had a 16 cm Chromophobe tumor, 3 positive lymph nodes, that was 5 years ago. I have had clean scans for five years now. There are no answers out there to be found about your wife's prognosi. Like me, she is very rare, metastatic Chromophobe without sarcomatoid features is a disease without a prognosis. That was hard for me to accept at first, I am at pease with it now. Your only answers for now, are best found right here on this network. I hope this helps.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

 I am so sorry for what your dear wife  and you are going through

Can I ask what size the tumours were

Annie

dannyboy1969
Posts: 20
Joined: Nov 2017

Thanks for the response.  There were 2 masses on her left kidney.  Tumors were located on teh middle and lower poles.  The largest tumor was 4.1x2.7x2.6cm and the smaller was .8x.7x.6cm.  Histologic Type:  Chromophobe RCC.  Histologic Grade: Grade 3.  Number of lymph nodes examined:  9.  Number of lymph nodes involved:  3.  TNM Descriptors:  Primary Tumor pT3a, Regional lymph nodes:  pN1.

I'm so glad I found this site.  I'm still drinking through a fire hose trying to learn all I can.  Any help would be greatly appreciated.

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

I hope she is healing well. Sorry you two are going through this.

dannyboy1969
Posts: 20
Joined: Nov 2017

Thanks so much for the note.  I'm still trying to process this and it is nice to know I have some people to lean on for info.  So glad I found this site.

stub1969's picture
stub1969
Posts: 792
Joined: Jul 2016

Hi, Danny.  I too am a Chromie and had surgery a year ago at Mayo in Rochester.  Dr. Chow was the surgeon.  Can you look at her pathology report and give us some more information.    The added information will help us give you feedback.   FYI--Medic1971 is another member here that had two tumors (both small) and his were Chromophobe RCC.

Take care--

Stub

dannyboy1969
Posts: 20
Joined: Nov 2017

Thanks Stub.  So glad I found this site.  I met with Dr. Chow last week and he referred us to Dr. Thompson.  Those doctors at Mayo are the best. I left some info with Medic1971.

dannyboy1969
Posts: 20
Joined: Nov 2017

Sorry Stub.  I was wrong when I said I left the info with Medic1971.  I left a bit more info with Wehavenotimeatall.  Still trying to feel my way around this site....

stub1969's picture
stub1969
Posts: 792
Joined: Jul 2016

right of your screen you should see "Search CSN Content" and Search CSN Members"  Click on the members and do a search of medic.  You can send him a private email through the CSN email.  He's pretty active here and very helpful, so I'm sure he'll get back to you.  Couple questions about her pathology report: 1. was it contained with clear margins?  2. does it mention anything about sarcomatoid features? 

Her cancer sounds more agressive than the run-of-the-mill Chromophobe.  Obviously having multifocal tumors in one kidney is really rare, let alone being a chromie.  I hope you get some answers and a plan of attack at Mayo.  Good luck!

Stub

dannyboy1969
Posts: 20
Joined: Nov 2017

Stub.  Thanks for the help.  It says the surgical margins are negative for tumor.  Tumor Focality was Multifocal.  Lymphovascular Invasion: Present.  Tumor Necrosis: Absent.  Sarcomatoid Features: Absent.  Rhabdoid Features: Absent.  Margins: Negative.

stub1969's picture
stub1969
Posts: 792
Joined: Jul 2016

The rest of the information that you provided sounds like a really good pathology.  If I remember right, most chromophobe tumors are either "ungraded" or are graded at a 3.  I think a lot of that depends on the person completing the report.  In any event, I know you're in good hands at Mayo.  Keep us updated as you continue this journey.

Stub

dannyboy1969
Posts: 20
Joined: Nov 2017

Thanks for the help.  You certainly know your Chromophobe.  Hers was graded at a 3.  So it is rare for there to be multiple tumors present?  It is going to be a long 3-months until our next trip to Mayo.  We'll sit down with the doctor and he'll refer us to an oncologist.  I really appreciate your help and I wish you well on your journey.

stub1969's picture
stub1969
Posts: 792
Joined: Jul 2016

I'd also like to direct you to <smartpatients.com>  There are a number of chromophobe RCC people there.  Read, learn, and participate.  The more you know the better advocate you can be for your wife. 

Blessings--

Stub

dannyboy1969
Posts: 20
Joined: Nov 2017

Thanks for the advice.  I'll certainly do that.  You can never know too much.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

Multifiocal seems to be a trait of some chromosomes 

The worry is the lymph nodes although removed is still what we need to focus on

There is no spread elsewhere which is a positive 

when were the tumours decected.

it is very diffucult to get much information on Chromophobe which focuses on mets or recurrence for smaller size tumours

what did your surgeon think the requirement for chemo was or is he leaving that to the oncologist

There is no signs of aggressive cells in the pathology report which is another positive but the mets are a worry although many people on here have had mets removed and are now clear

 

I cant imagine how difficult this must be for you both

 

You will have a more rocky road but I have read a few cases where mets  were removed and no further recurrence happended

 

Please keep us posted and we are always here

Hugs 

Annie

 

 

dannyboy1969
Posts: 20
Joined: Nov 2017

It has been a long and winding road to get here.  In February of 2016, my wife had a swollen lymph node in her neck and they did a CT.  The CT didn't show much on that lymph node, but did catch a spot on her kidney.  They decided to biopsy that and came back negative.  Fast-forward to September of 2017.  My wife had pains in her side and went to the ER.  They thought she had kidney stones and did another CT.  They noticed that the spot on her kidney had grown and a nearby lymph node looked odd.  They first did a biopsy on the kidney and that came back negative again.  The following week they biopsied the lymph node and sent the info to Mayo.  About 10 days later we got the diagnosis of ChRCC.  We did a quick trip to Mayo for a consult and the doctor squeezed us in for surgery.  We were told that we need to have follow ups every 3 months for 2 years.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

there was no follow ups on the tumour

But the good news is they are gone and now treatment will deal with the nodes

How s your wife doing

Annie

dannyboy1969
Posts: 20
Joined: Nov 2017

Thanks for the note Annie.  My wife is doing pretty well.  Getting around better every day.  Cabin fever is starting to set in.

Shaughnessy's picture
Shaughnessy
Posts: 5
Joined: Oct 2017

I also had a rather large chromophobe removed, little more than a year ago now.

My scan schedule is every six months along with chest x-ray and blood tests.  So far so good.  If this continues I should go to yearly scans.

My Doc also told be that a chromophobe is rare, low recurrence, all good.  Not as good as non cancerous but still good.

I have not had any oncology consults, pray I don't need any.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

Shaughnessy(fellow Irish). 

Great to hear you are doing well... gives hope to us other chromies coming behind you

Annie

rdoyd2
Posts: 78
Joined: Aug 2016

i am a chromie also. mine was 11.7 cm but was contained and no lympph node involvement. also no necrosis sarcomotoid or rhabdoid features. my surgery was four years ago tomorow . i had scans evry 6 months for two years then went to yearly last year. so far i have been blessed and have been ned since surgery.i thank God every day for what he has done for me. i was 37 when diagnosed. i have not had oncology consults either. life does return to normal but the thought of cancer is still in the back of my mind every day . just something that i cant shake. like Fox said just a bad song stuck in my head for the last four years. since my surgery i have bought a home, advanced in my profession and the best thing is my grand babie was born. what a gift. life is good! there is life after diagnosis. wishing everyone the best.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

For you and thanks for your story

I am two months from my surgery and still somewhat in the land of fear and dread

What type of scans did you have

rdoyd2
Posts: 78
Joined: Aug 2016

I had a bone scan to search for possible bone mets because i was having major joint pain like arthritis type pain. the arthiritus doc wanted to confirmm i had no mets due to the size of my tumor. thankfully i did not have any bone mets. that was 3 months after my surgery. bone joint pain went away after about a year after my neph. docs think the tumor had caused my immune system to attack my joints due to the tumor. i used to have high bp but literaly after my neph. my bp has been 120/80 or below ever since. docs think it was the tumor that caused it. but my scans have been ct with contrast. doc says after my 5 year ct scan he wants to go to ultrasound one year and then ct scans alternating. i dont know if i like that idea butt will cross that bridge when i get there.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

i have had bone pain before and after op but it went away after about three weeks

Also had heart palpitations before which everyone told me was due to my “anxiety”

They also vanished

My surgeon wants to do ultrasound scans because mine was 4.4 and thinks risk is low

 would prefer ct but like you will argue when you get there

 

Nice to talk to a fellow chromie

rdoyd2
Posts: 78
Joined: Aug 2016

I would not do ultrasounds yet. i think you should have ct scans at least every 6 months for the first year then maybe a year later and then i would go to ultrasounds. our risk is low but there are chrommies who have had recurrences. the first three years are the most critical i have been told for chrommies if it is going to return.

nice talking to you as well there are not many of us chromies .

dannyboy1969
Posts: 20
Joined: Nov 2017

Thanks for the help everyone.  It has certainly been appreciated.  My wife will be 2-weeks out from her surgery this Wednesday.  She is healing well and is off of her pain meds and getting around pretty well.  She has a nagging pain on her left side and seems to radiate down into her groin.  Could this be neuropathy?  Her surgery was pretty invasive and I'm sure some of her nerves are a little peeved about now.

SarahD1983's picture
SarahD1983
Posts: 8
Joined: Dec 2017

Hi Dannyboy.  I had a right radiacl nephrectomy on 11/02.  I had horrble pain in my right groin for about 2 weeks post op.  I eventually went away.  Hope your wife is feeling better ;)

stub1969's picture
stub1969
Posts: 792
Joined: Jul 2016

I love the fact that this thread keeps growing.  Chromophobe RCC is rare, so there aren't too many of us out there.  It's good to connect and compare.  I'm hopeful we can continue to share our progress and help other chromies.

Wishing you and others continued "NED"

Stub

dannyboy1969
Posts: 20
Joined: Nov 2017

Greetings All.  Hope this note finds you well.  My wife continues to improve and goes back to work next week.  We have pretty much come to grips with this (as much as you can) and are looking forward to our first visit to Mayo post surgery.  We are scheduled for bloodwork, chest xray, and CT followed by a sit down with the oncologist to wrap up our trip to Rochester.  Hopefully things go well and I'll report back with the findings.  Have a great holiday season everyone.

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

So happy to hear she is doing well!!! Onward and upward! Have a great Christmas!!!

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

praying you have a nice Christmas and she gets the star treatment from Hubby

Annie

en8236
Posts: 28
Joined: Dec 2017

Hi... I am glad that I just found this thread while searching. Thought would give me some peace of mind...

So I was diagnosed with PT1bN0M0 ChRCCC 7 years back, had radical nephrectomy in 2011, have been following a follow-up plan ever since... first year 3 times CT scan of chest/ab/pelvis (3m/6m/1y),  2 times in 2nd and 3rd year CT scan of chest/ab/pelvis (6m/1y), then yearly on 4th and 5th year and 2 yearly after that.

Now all the time my I did CT, it came clear so far, save for perifissural lung nodules. They have been infrequent, one have been there since the first time, others coming and going. But everytime the CT reported benignity is favored.

Now I have done these CTs in 3 different locations over the last 7 years as I have moved frequently, but neither of these 3 places had any positive met outcomes.

Now, my concern is, during my CT in 2015, they found a 6mm perifissural nodule which they said is likely a benign peripheral lymph node. My pcp and urologist said no concerns and follow up in 2017. I did and this time in a different state, under different pcp. This time they measured it to be 8X3mm. Interestingly, the radiologist confirmed it to be perifissural lung nodule, likely to be benign subpleural lymph node and said there is no evidence suspicious for metastasis. They did not suggest any follow up for this. However, my PCP still forwarded me to a pulmunologist considering my history. Pulmunologist said, he finds them highly likely to be benign, but since my PCP forwarded me to him, he will follow it through and want a 3 month follow up and go from there. He said although 6 mm to 8mm in 2 years doesn't mean much, it could be measurement deviation in two different places, but 8mm is a cut off line.

Now I am torn apart. My experience so far says, radiologist gives a final call on the tumor type, and pcp/specialist acts on the basis of that. The radiologist here seem to be confident about it, but my PCP still wants to follow it up. I did some research which says perifissural nodules are not to worry about compared to pulmonary lung nodules. But am I missing something? Is 3 month too much? Anybody has any experience?

P.S. I was a former smoker, quit smoking after initial diagnosis.

SarahD1983's picture
SarahD1983
Posts: 8
Joined: Dec 2017

Hi everyone.  I am new to all of this.  I was diagnosed with kidney cancer on 10/13/17 after a visit to the ER due to abdonimal pain following an IVF egg retreival procedure (we were trying for baby #2).  I had a right radical nephrectomy on 11/02/17.  My tumor was 9.8cm.  After the surgery i developed a pumonary emboli.  Patholgy confirmed it was Chromophobe RCC.  And I was classified as T2A N0 M0 grade 3 tumor.  I was not referred to oncologist but requested to meet with one for peace of mind.  It is difficult because there is little information on this sub type of RCC.  I am happy I found this fourm with others that have has similar experiences.  I am having a hard time with anxiety since my diagnosis.  I am trying to stay positive and live in the moment, but i am finding that very challenging some days.  I have a follow-up CT scan for the pulmonary emboli an Feb.  Initially my urologist wanted to wait 6 months for my first follow up scan but he agreed to do the first one at the same time at the chest CT so I dont have to have the contrast die 2x in 3 months.  

dannyboy1969
Posts: 20
Joined: Nov 2017

Thanks for the note Sarah.  Like you, I'm new to this Chromophobe realm and am so glad I found this site.  I find it very comforting to interact with people that are going through the same things we are.  I'm a bit of an outsider since I'm not the one with cancer, my wife has it.  But I'm doing my best to advocate for her by learning all I can about ChRCC.  You are correct, info is limited and this site helps me greatly.  There are plenty of people here that know far more than I do and their advice has had a calming effect on me.  All we can do is stay positive and live life between the scans.  I wish you well on  your journey.

stub1969's picture
stub1969
Posts: 792
Joined: Jul 2016

Welcome!  I'm glad you found this site.  I was diagnosed almost a year and a half ago with surgery soon after.  I've had two follow-up scans so far and go for my third scans tomorrow.  As time passes, the anxiety does get better.  I think we'll always think about cancer, it just stops taking up all our thoughts.  I'm probably a little unususal in that during my baseline scans they also found a tumor on my thyroid.  Thankfully, it was a second primary rather than metastic activity.  A month after my partial nephrectomy I had a full thyroidectomy.  I was 47 and healthy.  Running, lifting weights, and eating right.  Cancer--me??!!  My belief of being indestructible came crashing down quickly.  The shock and disbelief I had did consume me--at first.  I guess you could say I went through a stage of mourning.  But, I made the decision that even though cancer robbed me of my normal life, it was not going to rob me of moving forward and living.  I've found a sort of peace with my new normal now.  Give yourself time to find and accept your new normal.  Trust me it does get better.

Sending and wishing you only the best.

Stub 

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