Chromophobe RCC - my experience

Wehavenotimeatall said:

Please don’t panic yet

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

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 said:

Another resource

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

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 said:

Mr Danny and Mrs Danny

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

 

 

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.

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 

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

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