Chromophobe RCC

stub1969 said:

Danny

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

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 said:

At the top

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

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 said:

Whew!

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

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 said:

Another resource

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

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

Wehavenotimeatall said:

Hi Danny

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

 

 

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.

Shaughnessy said:

Follow Up To Original Post

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.

Shaughnessy(fellow Irish). 

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

Annie

Wehavenotimeatall said:

Strange

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

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

rdoyd2 said:

i am a chromie also. mine was

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.

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

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

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.