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New member

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

Hello everyone... I like everyone here was diagonsed with Kidney cancer on Nov 29th 2017. On Dec 5th I had a radical nephrectomy to remove a 13cm tumor. Pathology returned as a T2bNXM0 grade 3 clear cell carcinoma. Although my doctor is convinced he removed everything and I am cancer free my anxiety unfortunately is getting the best of me. My first set of scans is set for March 2nd. A complete set of chest xrays, CT of the abdomen and chest plus I am due for a mammogram so they are throwing that in as well!..lol

I have found that doing research is proving to be frightening although I am curious about recurrence statistics. Anyways I am looking forward to talking with you all as we all embark on this crazy new journey that is now my life.

sasha_jax4
Posts: 43
Joined: Dec 2017

I think our own minds can be the worst part of the whole thing. The what ifs? I think research is important from reliable sources, but too much internet can take you down scary rabbit holes you might not want to visit. I had a partial nephrectomy 12/18 and have a questionable ovary that is being monitored, so I completely understand where you are coming from. I’m at this moment trying to say they got it all and I’m good for now. I try not to let my mind wonder too much. Hang in there! Best of luck!

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

Welcome to the group.

The common wisdom here is to stop searching the web for survival statistics.  It is depressing at best and likely to be outdated.

The people here who are stage 1 (like me) get just as anxious at scan time as the higher staged people.

If you find some good statistics, let me know!  I am curious too. :)

I've managed to find a mental place where "what will be, will be".

Let's see if that changes next time I get scanned (mid year).

Steve.

Kidneybeans
Posts: 39
Joined: Dec 2017

Depending on your personality and your profession you may or may not be able to stop yourself from researching. I'm a bit OCD and a lawyer so I got in phases. But take it with a shaker if salt. Every single human is different in some degree and the statistics are old the minute they're printed. Their is big money in finding treatments and cures which is a great thing because it continually moves the needle in the right direction. Read some of the survivorship stories on here. They're fantastic. And yes, you'll still worry and stress if you're anything like me. Lol

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Very similar to mine.

A 10 cm tumor was removed during a radical open nephrectomy, mine was t2b too.

3 1/2 years passed and I'm NED. The good news is your tumor was confined so It was diagnosed as an early stage tumor. The surgery you had is hopefully the only treatment you need to be cancer free for the rest of your life

 

rdoyd2
Posts: 80
Joined: Aug 2016

I also had a large tumor. 11.7 cm. Was your tumor clear cell or chromophobe ?. I have been blessed and have been ned since surgery. I am four years out from my  Neph. The anxiety can be bad. Most of us have anxiety issues at times due to having had cancer. What you are feeling  is normal. Try not to let what  you read on line get you down. I know it's hard but like others have said most of the info is outdated. Welcome to the group no one wants to be in .

stevez
Posts: 51
Joined: Dec 2017

I had a radical surgery on 12/21 after receiving my diagnosis on 12/1.  Still home recovering.  Mine was 5cm and protruding into my ureter, but doctor feels like he got it all.  I'll have my first scan in early March I believe.  I've gone over my pathology with my urologist and meet with an oncologist next Tuesday.  I'm considered stage 1, grade 3.  I visit this website several times a day as I feel you all know what anxiety I'm feeling and certainly understand.  As was said in another thread, many people around me feel like I'm "cured" and once everything fully heals I'll go about life.  I may, but the lingering worry/anxiety is still there.  I have one kidney now and I've received the formal diagnosis of the "Big C".  I don't read a lot of statistics on the internet and I'm working hard to maintain a strong positive attitude and to control my moments of worry.  I wish you all the best in your treatment and moving forward!  Steve

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

Thank you all for your positive words of encouragement. I think being part of this group will really help ease my mind. Just know I'm here for all of you as well. 

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Hi. Yes! Welcome to the new crazy life. Sorry you are going through all of this. I hope you are able to make the best of it and truly hold on to all the great lessons learned throughout your journey. All the best!

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

I'm also a newbie here - surgery to be scheduled soon.  Advice from a newcomer...stick to reading here more than google searching (not that I do that at all, but do as I say not as I do!  LOL).  Everyone here is welcoming, helpful and will give you the real deal on what's going on.  Finding this board is the best thing that's happpened since my diagnosis.

Good luck!

donna_lee's picture
donna_lee
Posts: 1004
Joined: Feb 2009

Click on my user name to read the entire journey. Mine had mets to other places; and I wasn't aware of this group for several years.  It can be frightening.  The Dr. has you on the right schedule at this time, so take off your worry hat and send it flying into the wind.

Hugs,

donna_lee

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

I have not been referred to an oncologist?? My thinking is that my urologist is waiting to see if what comes back on my scans in March? I am inspired by your story and your strength!

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