CSN Login
Members Online: 5

You are here

33 diagnosed with 2.2cm Clear Cell Renal Carcinoma

ambava33's picture
ambava33
Posts: 74
Joined: Feb 2017

Well never thought I would wind up here this early in my life! But Hi everyone, I was diagnosed with Clear Cell Renal Cell Carcinoma yesterday morning! I have cried and cried but I think I have cried all my tears out and now I am trying to be as positive as I can be about this whole situation that has been following me like a lost loney dog for the past 5 months! Went from being told it might be cancer to no we don't think it is, come back in three months for a special ultrasound that is only done by Washington University and BAM they suddenly changed their minds back to a 70% chance it was cancer. Had a biopsy done last Tuesday morning, which by the way I can't wrap my head around why they don't just put ya out for that. I had a med student in there and she passed out during my procedure, I don't blame her. LOL, so I am thinking she might be changing her occupation, but who knows. Anyways, got the dreaded confirmation call yesterday morning that it is indeed cancer! Robotic partial nephrecotomy scheduled for March 27th, going for prescreening before my surgery on Friday. I mean this is like a tornado speeding thru and causing all kinds of destruction and chaos. I have two beautiful 3 year olds, boy girl twins, a wonderful husband and honestly a freaking phenomenal life! I know this is just a bump in the road, because I am a realist and know bad things happen in life, but man o man I can't for the life of me understand why it has to be this?! A question I will safe for the man upstairs when it's my time to go, which by the way I know is no time soon, this is not going to take me out, the doctor says surgery should be all I need, it is contained in the kidney and not spread, but I can't help but be a little untrusting of them when they already told me once they were pretty darn convinced it wasn't cancer and came back and crushed me with it is! I have read so many of your stories over the past week or so waiting on my biopsy results and you guys are so awesome and seem like a nice little family circle that I need to lean on during this time in my life. 

icemantoo's picture
icemantoo
Posts: 3211
Joined: Jan 2010

ambava,

Not fair joining so young. As youve already digested your prognosis is excellent. Nice to be in a top notch teaching hospital. You will be fine. I wish I could say the surgery was painless, but I would be laughed off this board.

 

Icemantoo

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Welcome! I had my robotic partial nephrectomy last year for a 2.9cm clear cell renal cell carcinoma. I was 38 so I know how it feels to be so young facing something you never dreamed you would! This group has been a fantastic, welcoming, resource. I give so much to these people for getting me through my diagnosis and surgery with my sanity!

ambava33's picture
ambava33
Posts: 74
Joined: Feb 2017

Icemantoo,

Yes my prognosis is great and I guess that is what is keeping me from totally losing it, because I know it could be much much worse. Someone's looking out for me because they totally found the mass by chance doing an ultrasound for my gallbladder. Otherwise I could of let this thing go until it was to late, so I have so much to be greatful for in this situation. I know the surgery will be no walk in the park, but my family is gearing up and going to be ready to help us take care of the kids and just everyday stuff that I do to keep this household running! Thanks for the response and I hope you are doing well!

ambava33's picture
ambava33
Posts: 74
Joined: Feb 2017

Kat,

Ughhh it's the worst! I mean seriously cannot believe it, but at the same time it doesn't surprise me because I hear these stories of young people all the time getting stage 4 cancers and not even having the opportunity to get it out and move on. Life is crazy and short. How was your recovery if you don't mind sharing? I am so sorry you had to go thru this, so sorry any of us have to go thru this!! Just sucks!

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

My recovery wasn't bad at all! I had pain when sitting up from a lying down position and sometimes trouble getting comfortable when sleeping. I didn't take much more than Tylenol after the first couple of days. I will say that there were good days and bad days. The incisions are so small that it was easy to forget I had pretty major abdominal surgery. So I will say be careful not to overdo it, even when you feel great. You'll get pretty tired easily for a few weeks. For me, being so young and a mom and wife, the mental aspect of it all after the dust settled was a little difficult. At first I was in "get the job done" mode. Once I was back to work and felt mostly healed the mental aspect of CANCER hit me a bit and that I would have this history for what I hope to be a very long life. It has gotten easier. Getting the scans still causes some anxiety but again, it is a tiny bit easier as I go. Feel free to ask anything! 

lobbyist0724's picture
lobbyist0724
Posts: 383
Joined: Sep 2016

Hi Kat, just wondering are you getting chest Xray or CT? Thanks. Carmen

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Hi Carmen!

 

i got a chest CT at 3 months post op then will get a chest x-ray yearly. 

sucotai
Posts: 19
Joined: Jan 2017

Age 30, clear cell RCC also 2.2cm, but grade 4. You're not alone on that boat. At least recovery will be easy for you, I was able to go to the gym after 6 weeks post laproscopic radical nephrectomy.

BoondockSaint's picture
BoondockSaint
Posts: 240
Joined: Mar 2017

Ambava.... my wife had her partial robotic today and we are in our room. She is resting comfortably right next to me. Im in this chair so I can get her water or whatever she needs I'm not going anywhere. She's eaten some Jello and a little bit of some frozen lemon-lime goop stuff. Lol

She had her pain meds Thru IV and told the nurse that it was about a 5 out of 10 right now so I'd say it's under control for the most part. The nurse said she is scheduled to get up and walk at 10 pm and at 6am.

I know how you are flipping out right now. My wife had several meltdown, we both did. But you are amongst friends here whether you know it or not. So glad that you found out early like we did. Our surgeons and medical teams do amazing things and yours will too.

Big hugs and well wishes.

ambava33's picture
ambava33
Posts: 74
Joined: Feb 2017

Sucotai,

Why a grade 4 for such a small mass? Just curious? My pathology report didn't grade mine and I am not sure why. I asked my doctor in an email and he still has not responded to me. Glad to hear you were back in the gym after 6 weeks. I am really into working out and being healthy so I am not looking forward to the down time out of the gym. 

sucotai
Posts: 19
Joined: Jan 2017

tumor size affects staging, but not grading, which is based on cellular morphology under microscope. the reason ur report doesnt show grade is probably because it was a fine needle aspiration biopsy which isnt accurate for grading, u need excisional biopsy for that, aka the mass they take out during ur surgery

icemantoo's picture
icemantoo
Posts: 3211
Joined: Jan 2010

ambava,

 

 

Don't try to  do too much too soon.

 

 

Icemantoo

ambava33's picture
ambava33
Posts: 74
Joined: Feb 2017

Boondocksaint,

Give your wife hugs from me and a hug to you too. Glad to hear she is out of surgery and on her way to recovery. I cannot wait to be in that same position. I want this thing out of me immediately!! I flipped out pretty bad yesterday, but I think I cried every tear I have in me, so now it's time to accept and take charge. I will say some prayers for your wife and you for a smooth recovery. 

Deanie0916
Posts: 241
Joined: Nov 2016

Oh so sorry that you have this news and at a young age too. Thankful that it is small and that surgery will hopefully resolve this. Sending prayers and love your way. Feel free to ask any questions about anything, the people on here are wonderful and full of wisdom.

stub1969's picture
stub1969
Posts: 792
Joined: Jul 2016

Hi, Ambava:

I was 47 and a very healthy man when I was diagnosed, so I know exacly what you are feeling and going through.  Young or older we've all been there and share the same fear and anxiety.  With the size of yor tumor, try to stay positive and focus on the fact that surgery will take care of your cancer.  As you approach your surgery date, ask us questions that come up.  We'll try to help as much as you want.

Blessings,

Stub 

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

My right kidney was removed 4 weeks and 3 days ago and I am doing fine. My tumour was also clear cell and was 4cm stage 1 grade 2 and was completely removed along with the kidney.

I was fairly stoical before the surgery but got quite emotional at times afterwards. I needed a transfusion during the surgery so I think I probably got blood from some more emotional donors... Blaming their hormones. Well, that's my excuse anyway. Reading the pathology report was the trigger for me. It was all good news and a great relief.

It is terrible to get this disease at all, but you are in the lowest risk group.

Steve.

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Hi, my name is Steve and I have (had) cancer. Then we tell our story for our own benefit and hopefully for the benefit of others. Some people here can answer technical questions but the best thing is to hear from people who made the same journey and survived. It was very good for me to hear from all of you.

I think I just said something that was already obvious to all. :-)

Steve.

PS: I am not an alcoholic...

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

cancer sucks. But consider this, from this day forward you will be on top of every health issue in your future. Not much can sneak up on you anymore. Listen carefully to everyone. Most find out that there is more than just one doctors advice. This resource has the cumalative knowledge of smart, experienced RCC survivors. Many know of options the common respected oncologist hasn't heard of. Whether you wanted to or not, you are about to become an expert. Make decisions slowly and carefully.

ambava33's picture
ambava33
Posts: 74
Joined: Feb 2017

Steve,

You are making me laugh this morning, thanks for that. Your sense of humor is awesome and I needed a laugh. Glad you are doing well after your surgery, that gives me hope I will do fine after mine. 

ambava33's picture
ambava33
Posts: 74
Joined: Feb 2017

Foxhd,

So very true! I have anxiety now though about if I have this kidney cancer what other cancer is in my body that we don't know about and when is it going to rear it's ugly face. I mean I feel invaded, I know that's silly but I do. I have gotten two opinions and my second doctor is very skilled and works for Washington Univeristy and has done 100's of the robotic surgeries, so I feel I am in good hands. 

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

I felt that fear too, about other cancers. Then I looked at it this way, I will be scanned and followed on a regular basis. Where others might not know something is there until it's causinh symptoms and/or large, IF you ever had something else it will be caught super early. So in a way, we are lucky to be watched so closely.

Bay Area Guy's picture
Bay Area Guy
Posts: 385
Joined: Jun 2016

I had a similar sized lesion.  I didn't have a biopsy when it was diagnosed in late 2013.  My urologist said it was standard practice to monitor it.  So, we monitored it with scans every six months.  It wasn't until April, 2016 that an ultrasound determined the little bugger had grown slightly that the urologist decided it was time to treat it.  Ablation and surgery were the two options, and he recommended the surgery, as the overall success rate was higher.  So, on June 22nd, I had a robotic assisted partial.  I got to the hospital around noon and I was released the next day at 1:30, so 25-1/2 hours in the hospital.  I had virtually no post-op pain (though reading the experiences of other people, I guess I'm unusual in that regard).  It turned out I had chromophobe RCC.  Chromophobe seems to be a pretty non-aggressive form that grows very slowly, rarely spreads and rarely recurs.  I had my first post-op scan and x-ray in January and they were both clean.  The surgeon wants me to get another scan in six months, then, if it's still clean, switch to annual scans.

it sucks to have what we have.  But it's been found early and surgery will very likely mean you can be just like me.....and bug the living daylights out of everyone for a long, long time.  Well, at least that's my plan.

marosa's picture
marosa
Posts: 332
Joined: Feb 2015

age but you will be fine!

It's a good thing to have found us before your surgery!  I hadn't and because of that my wait was very much in the dark and scary. had only the doctor to trust wich is the most important of course but so is talking to people who have already traveled that road.  Ask away any doubts or questions but it sounds like you are in very good hands!

ambava33's picture
ambava33
Posts: 74
Joined: Feb 2017

Thank you everyone for sharing your stories! It truly is making me feel much more at ease about this whole journey. You know I think maybe we are  the special one's and everyone else should be like us. LOL!!! 

medic1971's picture
medic1971
Posts: 190
Joined: Sep 2015

My tumor was 2.2cm also...  So congratulations on catching it so early and so small.  Back 2015 they found a mass on my right kidney and then 4 months later I had a robotic partial nephrectomy.  I waited so long because I went and got a second opinion and I am glad I did because they found a second mass on that same kidney.  This mass was very small at only 0.8cm.  There is a good chance you've had this tumor for several years, so take your time.  The American Urological Association estimates the average urologist sees six cancer and non-cancer kidney tumor cases a year.  Find someone who sees more than 6 a year, please.

Surgery wasn't too bad, but it wasn't all that great.  I was in the hospital two days, then in a hotel room for four days, and then I flew home by myself.  I was off work six weeks.  Most people don't need that long, but I had so much sick leave that I just took it anyway. 

When you have time please watch this video about the treatment for the small renal mass.  This presentation was done by a urologist at MD Anderson in Houston.  It will answer a lot of your questions and help give you peace of mind.  A video just like this helped me a great deal.

Options for Managing the Small Renal Mass Surena F. Matin, MD

https://www.youtube.com/watch?v=j13UodbkIYw

I am not going to lie the next year or so is going to be hard, mentally.  You will make it and be a stronger person for it, I promise you.

Keep us posted and post any questions you have or you can inbox me too.  

Subscribe to Comments for "33 diagnosed with 2.2cm Clear Cell Renal Carcinoma"