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Newly diagnosed

Septemberzoe
Posts: 49
Joined: Sep 2013

So....here I am where everyone thinks they will never be. I am a 43 yr old mom of 2 teenagers...had a robot assisted partial nephrectomy about a week ago and got pathology results 2 days ago. Rcc clear cell type grade 2 stage 1, tumor was 3.5cm oval shaped on very top of right kidney. Scheduled now for bone scan and chest ct then scans every 3 mos for awhile. This tumor was found "accidentally" after a ct scan at the emergency room for something totally unrelated. I go back and forth between feeling shocked that I had cancer and feeling blessed that it was found and removed. Would love to hear from others with similar diagnosis...I have the feeling that I want to change what i eat, medicines I take, my daily habits so that I don't cause this to come back...would love to hear from long term survivors...I am hoping to be around for a long time

billmc
Posts: 9
Joined: Sep 2013

Hi Septemberzoe,

I am new here also. My father had scans also for an unrelated issue. They ended up finding a 1cm mass on his right kideny. Lower part. His surgery is now Oct 18th. i have done a lot of research and it sounds like its a moderatly low grade tumor and is on the smaller side. Survival rates are very good for Stage 1. My father was diagnosed 8 years ago for Stage 3 colon cancer and he is doing great. Be glad they caught it early. I can only speak from a 3rd person point of view. Others here can give you personal insight. People are amazing and so willing to help here. I would be confidnet and dont let this consume your life. Best chance of a full cure is early detection which it looks like you had.

Take care,
Bill

icemantoo's picture
icemantoo
Posts: 1822
Joined: Jan 2010

Zoe,

Cancer was always what somebody ekse had and whoever heard of Kidney Cancer. Welcome to our exclusive club. Mine was 11 years ago ar a young 59. Faye across the streey had hers at 64 and she is onky 82,

 

 The big C word. Surgery, Recovery. A little overwhelming at first. But things will get better.

 

 

Icemantoo

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Hi Septemberzoe,

 

I am recently new here as well but the advice I can offer and from what I've read, prognosis for stage 1 is very good. If you're interested in what you eat, Neil here is like a nutrional encyclopedia and I'm sure he will give his 2 cents! In the meantime, if you're interested, I recommend a few books to read that tell you a little bit about living with cancer and lifestyle, including nutrional changes you can make to optimize your health and keep your body in an environment that doesn't promote cancerous cells to grow.

1. Life over Cancer by Keith Block

2. Anti Cancer by David Servan-Schreiber

Another very informative video that I recomend to watch is about angiogenesis as well, it's a ted talk, "can we eat to starve cancer?" by William Li and I love it: 

http://www.ted.com/talks/william_li.html

 

Hope this helps!!!

Septemberzoe
Posts: 49
Joined: Sep 2013

Thanks so much ....a bit overwhelmed by info right now. Maybe someone cc an help me answer this question....too much was going on in my brain at the dr.'s office and I didn't ask...pathology said T1aNxMx stage 1 but no lymph nodes were removed or biopsied....silly question but how do they know its stage 1 if they didn't check lymph nodes? I remember asking about this before surgery and the dr said the nodes didnt show up on ct or MRI so they were not involved...

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Hi Septemberzoe,

Your lymph nodes must have appeared completely normal so they were not removed.  And, of course, that meant that they were not biopsied.  That is what the "Nx" refers to.

If you are interested a dietary approach that can help to fight and/or prevent any future metastases I have prepared a concise document that explains the science and rationale behind what I call "proper" nutrition for cancer patients.  It is 59-pages long and is a .pdf file so I will need to send it to you via direct email.

Please send me an email at:

n.feldman@videopost.com

So I can respond with my guide attached.

Best wishes,

 

-Neil (NanoSecond)

Sandi45
Posts: 25
Joined: Sep 2013

Hi Neil,

I sent you an email and asked if you would send me the pdf also.

 

Thanks!

 

Sandi

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Yes, it's on it's way to you Sandi.

It goes without saying that I am happy to send it to anyone else who is interested.  It's free and contains plenty of food for thought...

Sandi45
Posts: 25
Joined: Sep 2013

I will let you know my thoughts after I get a chance to read it. I appreciate it!

danbren2's picture
danbren2
Posts: 241
Joined: May 2013

Hi Neil,

     I would love a copy of the document also, so I have sent my email address as well.

                                                    Thanks so much!

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

It's already on its way via direct email.  So please let me know if you don't receive it.

Dave Otto's picture
Dave Otto
Posts: 4
Joined: Sep 2013

Please add me to your list of people interested in your pdf file Neil.  Thanks very much for sharing.

webmajor@shaw.ca

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Hi Dave,

It's on its way via direct email so let me know if you do not receive it.

Best wishes,

 

-Neil

Djinnie's picture
Djinnie
Posts: 947
Joined: Apr 2013

Hi Zoe, 

I am glad to hear your surgery went so well. You had the same surgery as me my tumour was also at the very top of my right kidney. Mine was T1b Grade 3 though. I believe the grade is determined by the degree of change within the kidney cell. I also retained my lymph nodes as they appeared to be clear.

The most important change you should make, is to ensure you drink plenty of water each day. Once you feel better you could start introducing some changes to your diet. Cutting out sugar is very important,if you need a sweetener use a natural organic Stevia, the liquid is best. Reduce red meat,  and perhaps eat more fish. Use a sea salt, the grey Celtic is good, it is full of minerals, instead of table salt which is an industrial byproduct.

I am sure you are taking things very slowly right now, try and walk a little each day to build your energy levels. You will probably feel very fatigued for some considerable time,that is normal.

All the best with your scan, let us know how it goes!

 

Djinnie

 

love_of_my_life
Posts: 28
Joined: Jul 2012

My wife had a full removal last year.   She is 43 as well and we have four kids.  Her's was also approximately 3cm.

Her's was discovered in a post scan after she had a stone in the OTHER kidney.

I am very happy that thy found it early on you.  We just went to her one year scan and she is clean and her remaining kidney is now handling all of the output.

 

Septemberzoe
Posts: 49
Joined: Sep 2013

Thanks for sharing....what are the ages of your kids? Ours are 16 and 19....the 19 yr old is away at college and I have a hard time not really knowing how he's doing with this whole process. If you don't mind me asking do you know why they removed your wife's whole kidney with a "small" tumor? I wonder if I did the right thing with a partial removal. Would love to hear more about how you guys are doing....I feel like we are relatively young to be going through this and none of our friends can really relate....thanks! It is so great to hear that your wife is doing fine after a year.

foxhd's picture
foxhd
Posts: 2197
Joined: Oct 2011

Sort of like an exclusive club in reverse. Or being sentenced to jail time. Unfortunate to have to be here. But fortunate to be on the wardens list of possible parolees. Some of us have been doing real well and you most likely will too. Lots of friends and information here. We all know the drill. Good luck to you Zoe.

LynninNC
Posts: 16
Joined: Jul 2013

Hi September. I had a full nephrectomy, open incision almost a year ago. At the time my oldest son was a sophomore in college 1000 miles away from me, my second a senior in high school and my youngest an 8th grader. I was concerned about all my kids but most about my college age son because I could not see his reaction to our conversations. There was only 3 weeks from discovery to surgery. He did not come home for the surgery but did come home at Thanksgiving. I shared pretty much everythng with all the kids. i downplayed my fears but was honest about the medical side of things. In sharing the results of the pathology, (stage 3, grade 3, some sarcomatoid features) I was honest but did not emphasize the negative.  The kids have asked questions and stayed involved in conversations as I have participated in a clinical trial with votrient. I think in general kids will mirror a parent's attitude and emotion.  Be honest with your kids. Watch their response and tone it down if they seem stressed.  Actually, I think I use that philosophy with my friends and extended family too.  Listen to your gut...it will not lead you wrong.     All my best with your recovery.   L~ 

Septemberzoe
Posts: 49
Joined: Sep 2013

Thank you Lynn...interesting to hear from another mom. This is so new for my kids I think it might take awhile to see how they are doing with it....I try to share everything I know with them without stressing them out....my son left for college the weekend after I found out there was "something" on my kidney.how have yours done this past year and how are you doing?

LynninNC
Posts: 16
Joined: Jul 2013

We are all doing well. My kids still ask questions and celebrate each clear screen with me. I have tolerated the votrient well so I am not very "sick" and have carried on regular life. I have had 3 clear CT scans since surgery.  My 14 yr old daughter has scolded me on occasion when I have bemoaned the fact I ran a 5 k race instead of the half marathon. I guess that was her way of cheering me on!  My 18 year old is close to 800 miles away now also in college. Life goes on....I just appreciate it a little more now!  Take care of yourself so you can take care of the kids!  L~

Septemberzoe
Posts: 49
Joined: Sep 2013

Congrats on clear scans Lynn. Tomorrow is 2 weeks since my surgery and I have to go for some more scans...chest CT and bone scan...praying for an all clear so that I can get back to some kind of "normal". Thanks so much for writing back...and hope things continue to go well for you. 

Septemberzoe
Posts: 49
Joined: Sep 2013

Just heard from doctor's office that my chest CT and bone scan were "negative" and "normal"....two of the sweetest words I've ever heard

foxhd's picture
foxhd
Posts: 2197
Joined: Oct 2011

Keep up the good work! You can do this!

Septemberzoe
Posts: 49
Joined: Sep 2013

Heard from drs office again today....they were just talking about the bone scan being normal....called today with results from chest ct...2 lung nodules...one in each lung...2mm and 3 mm. Nurse said dr not concerned and that they will do a follow up ct in 3 months to see if there is any change. I'd never had a chest ct before this so don't know if the nodules have always been there or are a result of my rcc. kind of freaking out....wondering if anyone else has similar experience? My kidney tumor was 3.5 cm clear cell grade 3 stage 1a (if it is in the lung now does that make it stage 4?) help :( 

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

Relax!!!  You're still stage 1 and will stay that way.  You're effectively as near cured as it's possible to be.  Your stage of 1a is the best possible.  You don't have lung mets and the two tiny nodules are too small to be worried about. The 3 month CT follow-up is routine and will show whether anything has changed (e.g. the nodules may have resolved, disappeared, or be unchanged). 

The follow up is well-judged since you've been allocated a grade of 3 so keeping an eye open is a sensible precaution but the crucial prognostic factor is Stage and yours is the best on the scale!

icemantoo's picture
icemantoo
Posts: 1822
Joined: Jan 2010

Zoe,

I had a chest CT for respiratory issues about 6 months ago. I am an 11 year survivor of RCC. It showed lung nodules of I believe 4 and.6mm. Neither my ENT, Pulmonary doctor or Urologist were comcerned. Those nodules under >8 mm can not even be seem under a chest xray.  The chance of a nodule being cancerous under 1 cm is very low., like under 1 % The only way ro be sure is a follow up CT in 6 months.

 

Icemantoo

Septemberzoe
Posts: 49
Joined: Sep 2013

Sorry...made a typing mistake...was grade 2 not 3

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Still, follow ups are key!  Stay on top of things and go live your life!

Eat well, stay hydrated, and live.

Michael

Septemberzoe
Posts: 49
Joined: Sep 2013

Thank you so much for your words of encouragement..I'm so sorry that I'm so needy was just so thrown by the "you're fine...oh wait maybe you're not" news. Do you guys truly think these could be something benign? I don't want to get my hopes up if they turn out to be mets....thanks so much for the wisdom and support

icemantoo's picture
icemantoo
Posts: 1822
Joined: Jan 2010

Zoe,

 

You will be fine. The size of your nodules are too small to be anything but benign and too small to show up on a chest xray which is the most common test to determine if RCC has spresd to the lung. Many of us have small nodules on the lung and small cysts on the kidney which are harmless.

 

 

Icemantoo

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

For my money, there's no way these are mets and you have nothing whatever to worry about.  Follow the routine scan procedure and forget all about the topic.  Carry on with life as usual, appreciating it all the more for the scare you had that's now behind you.

izzycohen
Posts: 64
Joined: Aug 2013

Zoe,

Welcome to our club of which no one wants to be a member.  Like me, you too are truly blessed that the tumor was found early on.  You will discover, probably already have, there are people far less fortunate than yourself.  RCC is very treatable.  The success rate is high.

Iceman is right.  It's all overwhelming at first.  It does get better.

Good luck.

Izzy

 

 

Septemberzoe
Posts: 49
Joined: Sep 2013

I read these comments everyday for reassurance...thank you.

icemantoo's picture
icemantoo
Posts: 1822
Joined: Jan 2010

Zoe,

The last thing in the world I felt when i went through the surgery (scared s...less) it that someday I would be helping others. Perhaps you will see  yourself there pretty soon.

 

Icemantoo

mattieguerrero's picture
mattieguerrero
Posts: 3
Joined: May 2013

I know very much how you feel not expecting your diagnosis. I am type 1 diabetic juvenile onset so I have had problems with my kidneys before. 2009 I went into acute renal failure for "no reason". after a ct and ultrasound they found clear cell rcc stage 2 7.5 cm on the upper half of my right kidney, that had started to reach the layer of fat that encases the kidney. I am so happy that you were able to catch it that early! you are very blessed!

Septemberzoe
Posts: 49
Joined: Sep 2013

I come back and read these postings whenever I get myself worked up with anxiety and they calm me down....thank you all so much for being my "anti-anxiety drug"...waiting til beginning of December for my next set of scans and it seems like a long time...add christmas in there and I'm a wreck....thanks again everyone...xo

Dave Otto's picture
Dave Otto
Posts: 4
Joined: Sep 2013

So...I am also newly diagnosed, CT scan indicates 3.8 X 3.1 cm tumor, with an open partial nephrectomy scheduled for October 17th.  I am concerned more about the recovery process than anything else,at this point.

Septemberzoe
Posts: 49
Joined: Sep 2013

Hi Dave, 

my surgery was laprascopic so I can't offer you too much advice...had it on sep 3rd and I feel pretty much back to myself physically but I think for an open it might take you a bit longer....don't rush it! Physically the hardest part of recovery for me was the nausea that came after the anaesthesia...but that only lasted a couple of days...best of luck! when is your surgery?

Septemberzoe
Posts: 49
Joined: Sep 2013

Just saw the date is the 17th...will be thinking of you and hoping all goes well...xo

Dave Otto's picture
Dave Otto
Posts: 4
Joined: Sep 2013

I'm a little more "Duh" than you.  My surgery is the 22nd.  I'm taking the wife to a specialist on the 17th.  10 hour drive for the return trip.  Doesn't really pay to live in the boondocks, sometimes.

Septemberzoe
Posts: 49
Joined: Sep 2013

Good luck then with the drive and the surgery!

bcbigb
Posts: 31
Joined: Sep 2013

went in for routine check up ,found 12cm by 8cm tumor on right kidney.found by accident ,no symptoms nothing,had a total radectimy on sept.20 ,along with lymh nodes taken ,just taking 1 day at a time getting better ,waiting for the results.From everyone on here chances are you are going to be ok,its the unknown that scares everyone.It scares me with the size of mine but im keeping positive.positive is the best thing to do.Good luck and all my prayers are with you and your family

Brian C.

Septemberzoe
Posts: 49
Joined: Sep 2013

So...just got my 3 month scans done and kind of freaking out...have to wait til the 12th to see the dr. ... Hoping for good results and that those nodules are the same or gone and that nothing new has popped up...it's a long wait when you have no idea what's coming...but I'm sure you all know the feeling

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