New to Forum, Unfortunately 1.5 years into my "New Normal"

KeepCalmAnd

Hi Forum!  I am new to this forum as a member, but have used this site as a wealth of information and support in the course of my journey over the past year and a half.  I know that everyone has a different story and is in a different place, but I finally have made that step (thanks Fox) to be a contributor as I have learned a number of lessons that may be useful for those in an unfortunately similar situation.

 I am currently diagnosed as Stage 4 Papillary Renal Cell Carcinoma.  I say currently as depending on at what point over the past 1.5 years and what doctor you asked, it was either that or Cancer of an Unknown Primary (CUP).  I currently have multiple Mets in both my chest (Lymph nodes in proximity to lungs) and abdomen (mucosal lining), but both my kidneys show no sign of disease.

Darron

Welcome

Welcome Keep Calm...is Chive on the appropriate response?

ALWAYS pay it forward!

Karen0074

Darron said:

Welcome

Welcome Keep Calm...is Chive on the appropriate response?

ALWAYS pay it forward!

Welcome

Welcome keep calm, you will get so much support here, best forum on internet IMO x

foxhd

It is a new normal

Glad you spoke up. I'm sure some others have papillary cell cancer. How is it that your kidneys are clean?

KeepCalmAnd

foxhd said:

It is a new normal

Glad you spoke up. I'm sure some others have papillary cell cancer. How is it that your kidneys are clean?

Clean Kidneys

Fox - the doctors aren't certain of why my kidney's are clean, the only thing that they are certain of is that they probably will never be able to tell me for certain...

There are a couple of thoughts on it though, the most prevailing is that the it was a particularly aggressive form of papillary cell cancer that metastasized immediately.  The Kidney cancer specialists at the NIH were skeptical as they have never seen a case like mine (stage 4, with clean kidneys).  The other consults that i have had (Stanford, UCSD) are both certain that it is Kidney Cancer based on their own lab work, tissue of origin analysis and Other DNA & Gene testing/sequencing.  Bottom line is that i have heard how unique and puzzling my case is at every turn.

jason.2835

Missed mets?

Can it be that the docs missed some small metastases at the initial time of your treatment 1.5 years ago?  Did you undergo further screening after your treatment (I assume a partial neph since you still have both of your kidneys)?  Maybe they were so small at that time as to be missed and have since grown to a point where they can find them?

KeepCalmAnd

jason.2835 said:

Missed mets?

Can it be that the docs missed some small metastases at the initial time of your treatment 1.5 years ago?  Did you undergo further screening after your treatment (I assume a partial neph since you still have both of your kidneys)?  Maybe they were so small at that time as to be missed and have since grown to a point where they can find them?

My Initial Diagnosis were from Mets... and not the baseball team

Jason - My initial diagnosis was from the mets... in April of 2013 i went into the ER with Abdominal pain and found myself with both a Plural Effusion and a Cardio Effusion.  They found Papillary cancer cells in the fluid that was drained from each.  Subsequently in the battery of scans and tests, they were unable to find any trace of a lesion or tumor on either of my Kidneys.  i have not had any type of a neph.

jason.2835

KeepCalmAnd said:

My Initial Diagnosis were from Mets... and not the baseball team

Jason - My initial diagnosis was from the mets... in April of 2013 i went into the ER with Abdominal pain and found myself with both a Plural Effusion and a Cardio Effusion.  They found Papillary cancer cells in the fluid that was drained from each.  Subsequently in the battery of scans and tests, they were unable to find any trace of a lesion or tumor on either of my Kidneys.  i have not had any type of a neph.

Wow...

Ok, Calm, ya got me, man... that is weird.  Have you thought about a second opinion of the pathology report?  I mean, there are a lot of different places papillary cancer cells could possibly come from... they're sure it came from the kidneys?  That's outrageous.  What, if any, treatment have you undergone up to this point?

KeepCalmAnd

jason.2835 said:

Wow...

Ok, Calm, ya got me, man... that is weird.  Have you thought about a second opinion of the pathology report?  I mean, there are a lot of different places papillary cancer cells could possibly come from... they're sure it came from the kidneys?  That's outrageous.  What, if any, treatment have you undergone up to this point?

2nd, 3rd, 4th & 5th opinions

Jason, yeah I had been skeptical as first, but have seen a number of different doctors (mostly Kidney Cancer specialists, but a couple Cancer of an Unknown Primary (CUP) specialists as that was what my initial diagnosis was).  All the pathology interpretations have been similar & consistent.  It seems that what my oncologist (as well as the additional opinions) are hanging their hat on is the "Tissue of Origin" analysis which came back as Kidney Cancer (well into the 90th percentile confidence factor).  The report did list a few other potential types of cancer, which my oncologist feels we have been able to rule out.

As a side note, my mother had passed away from Papillary Kidney Cancer 3 years ago.  Through the NIH i was admitted into an hereditary study and had the battery of genetic testing done... through which we were able to confirm that what I have isn't any of the hereditary kidney cancer that they are aware of.