2 Weeks post op Radical Nephrectomy

That is one spectacular tumour, by any standards!! 

Since chromophobe is the slowest growing of the RCCs, at a typical rate of 1/4 cm per year, in early stages, it's even more astonishing.

I wouldn't wish it on you but do you know whether that jumbo tumour contains any sarcomatoid component? (That would possibly explain the huge size in one so young but I hope there's some other explanation.) If the answer is 'Yes' then you will make three of us who have sarcomatoid chRCC.  'Our friend John' also had a huge tumour and he has a sarcomatoid element but no mets - let's hope you both continue to escape any spread.  I've not been so lucky.

For some time now, I've been building a database of information about all of us who have chromophobe histology and I will be most grateful if you can give me details of your own case as I continue building my database to provide a profile of us chromophobes.   The details I've been collecting are the following:

gender, age, date of diagnosis, tumor stage, grade, size in cm. and left or right side, your residence, ethnicity and blood group, your surgery and any drug you're on or have had and, finally, whether you have any sarcomatoid change.

You've joined a great crowd of folks here, who will do their utmost to give you all the support we can muster and answer any question as best we can.                                                    

Texas_wedge said:

My database

Indeed it is a wonderful site and very few here appreciate just how good it is - they use the threads but don't utilise the facilities for putting up pictures, storing records, running a personal blog etc.  Beyond that, if you delve a bit, you'll discover considerable amounts of useful information archived and already available to answer many of the questions newcomers ask about on the threads.

Thanks for letting me know that you'll give me your data when you have it.  I have some of it in what you said in your first post.  Other bits perhaps you can give me now?  E.G. do you live in the US (some of us don't - e.g. I'm in Scotland)  are you caucasian?  Do you know your blood group (usually valuable to know when you're of child-bearing age, and always handy when you might sometime need a transfusion or want to donate blood).

The point you make about rate of tumor growth is an important one.  The figure of 1/4 cm per year was derived, I believe, in relation to early development of tumors, while still small.  The numbers of people in my database are getting large enough for me to be able, in the foreseeable future, to calculate means and standard deviations and do t tests etc and I may be able to expand and refine our understanding on this topic.  I believe I'm already seeing signs of information that will lead to facts not previously known about this sneaky disease.  [I'm going to be really hacked off if I snuff it before I have some of these answers!]

 

That will draw some attention when you are at the beach. It is amazing how big these things get without warning. Glad it's been removed. Now continue to do well.

cran1 said:

Wish you the best! You are 1

Wish you the best! You are 1 tough lady.

Grnsammy09,

I was catching up on my reading and ran across your post.  So, it looks like I have relinquished my title of the largest tumor I have seen posted here.  Mine was 17.5cm, t2b, grade 4 , chromophobe with 5-10 percent sarcomatoid features.  I had a right radical nephrectomy with open incision in the upper right abdomen, just below the rib cage, in September 2011.  My surgery seems to have been much less invasive than yours leaving me with only an 8.5 inch scar and 16 staples.  So far, so good, with only a couple of anomalies in CT and MRI images of the liver and pelvis bones that have been ruled out.  I have another next month to evaluate the "spot" on my liver.  I hope that you will be blessed with clear images and many "NED"s.

Peace,

John

Hi there! I was only stage 1 Chromophobe RCC and I am only 39.  I have a 5 inch gash in the front of my stomach and they used glue on me, no staples hurray, and I am already back to work after not quite 4 weeks (my radical nephrectomy of my left kidney was on 10/21).  I found that getting off pain meds after 2 days and walking around my neighborhood each day with my husband, helped me feel really good! For the past 10 days, in fact, I have been walking 2+ miles on the treadmill at a moderate pace and I feel that that even makes me feel more energized! So for me, it is all about being active and drinking 2 liters of water a day.  I feel like that helps to flush everything out.  Eating healthy, lots of salads and low sodium soups, has also helped me.  I hope your recovery goes super well and welcome to the club! I know our subtype of cancer is rare, so it is always interesting to see someone on here with the same type.