CSN Login
Members Online: 3

2 Weeks post op Radical Nephrectomy

grnsammy09's picture
grnsammy09
Posts: 16
Joined: Sep 2013

Today I am 2 weeks post op from an Open Radical Nephrectomy with rib resection. I had all 38 of my staples removed. My scar goes from below my right shoulder blade, across my rib cage and down to below my belly button. I had a 20cm (HUGE!) tumor on my right kidney, which the pathology report said was Chromophobe Renal Cell Carcinoma. Very rare for me since I am a 29 year old healthy female. The good news is that the cancer did not spread. So today is a good day for me! Just trying to recover at this point, still have plenty of pain around the incision and numbness. The doctors said the numbness may never go away, but thats fine. I've been reading these discusions curious about everyone elses experiences with recovery...It helps a lot! Smile

icemantoo's picture
icemantoo
Posts: 1559
Joined: Jan 2010

grnsammy09,

 

The good news is that at 29 the surgery was much easier for you than most of us who had the surgery later in life. Mine was at age 59 and I am now 70. Make sure you follow up  with the tests your doctor ordered as there is no free pass with a 20cm sucker. May you stay cancer free forever.

 

 

Icemantoo

grnsammy09's picture
grnsammy09
Posts: 16
Joined: Sep 2013

Thank you! I will definitely keep up with whatever scans and tests the doctors order for me. I'd rather not have to go through this again. 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.                                                    

grnsammy09's picture
grnsammy09
Posts: 16
Joined: Sep 2013

I have to visit the Oncologist on October 1st which is when I believe ill find out more details about the tumor. As soon as I find out all the information you are compiling for your database, I will let you know indefinitely! The only info I dont know that you requested is the stage, and whether or not it contains Sarcomatoid component. I still have a lot of unanswered questions about this. If these types of tumors only grow at a rate of 1/4cm per year, then that means it's been growing inside me half my life! That's hard to fathom. Thank you for your response, I love reading about everybodys experiences and I've learned so much by everyones posts and responses. It's a wonderful website. 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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!]

 

foxhd's picture
foxhd
Posts: 1923
Joined: Oct 2011

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's picture
cran1
Posts: 128
Joined: Mar 2013

Wish you the best! You are 1 tough lady.

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

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

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

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

vfelty's picture
vfelty
Posts: 21
Joined: Sep 2013

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. Laughing

Jojo61's picture
Jojo61
Posts: 382
Joined: Oct 2013

Wow....that is a huge tumor! Glad you are recovering well.

Keep us posted on your progress!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network