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goyler
Posts: 11
Joined: Aug 2012

Hi, just thought I would introduce myself. I just found this site. I was diagnosed with Renal Cell Carcinoma in early April and had surgery at the end of April. Everything went well as far as that goes. The alien autopsy as I call it did not go as well. I had a 7.5 cm growth that extended into the fatty tissue but not out of the Kidney. The growth was aggressive and extended into the renal veil going towards the heart. Yikes I did not like the sound of that. It was a T3a NxMx grade 4 cancer. What is the long term outlook? Anyone else on the board had a similar experience? Thanks for any help.

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

If you google "Renal Cell Carcinoma Calculator", you get a link to http://lifemath.net/cancer/renalcell/outcome/index.php. I do not know how accurate it is. The calculator is based on data from past outcomes (I think). It does not factor in newer treatment, so it probably overstates the mortality.

For me, the calculator gives an 85% 5 year survival rate, where as my Dr says the cancer is cured. My cancer was stage 1B grade 4.

goyler
Posts: 11
Joined: Aug 2012

Thanks I did that and it was a dismal 53% survival rate which I really did not like. I know there are other factors such as other health issues etc... That is in the mortality rate. I am very healthy, other than this bout with cancer, so I feel confident that i will be in the 53% range. I was curious what others had in experiences regarding this as I am new to this whole thing. This looks like a great place to chat with like minded individuals and share experiences.

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Welcome Goyler. In March 2011, I had my left nephrectomy with a T3 N2 M0. I recovered well with a couple negative follow up scans. But by October, I had around 20 tumors in my lungs, liver, and chest nodes. A couple months later my pelvis and spine were also affected. So this is serious business. I had a pretty poor prognosis with life expectancy of a few months. Now for the good news. I qualified for a new clinical study of a "monoclonal antibody" . Called MDX 1106, it works by preventing my immune system from ignoring the tumors and then attack the cancer. It has been working for me and I have had about 80-90% recovery so far. There is no reason to think that I won't continue to improve. I live a VERY active lifestyle and haven't slowed down much. So keep the faith. Deal with your diagnosis, and continue living your life as you would want. Stay on this board and read and ask questions. There is a lot to learn here. Good luck to you. Fox.

goyler
Posts: 11
Joined: Aug 2012

Thanks foxhd and Stevewmass for the follow-up. Wow! Great news on beating this thing. I am just like everyone else when I was told the news, I thought gloom and doom. My doctors have done a good job on keeping me advised and I am a positive individual but still have doubts at time. Finding this board last night was great. I work the Graveyard shift so will most likely be checking things out at night. Again thanks for the inspiration.

Greg

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

goyler,

Cancer sucks, but--if you have it--this is a good place to be, echoing Fox and Steve. Google will become a good friend too for reference, but--keep in mind--most information predicting how long you'll be around is dated at best.

NONE of the current trial information-- many showing promising results--is included in those numbers nor is recently approved FDA drugs.

Here are a couple of thoughts I've heard since embarking on this journey with my husband that I keep close all the time:

We're not dying from cancer; we're living with it.

and

The many advancements and multiple treatments for kidney cancer has edged it closer to being considered a chronic condition rather than a fatal one.

Maybe they will help you too.

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

For the patient, all of the survival calculators are completely worthless.

Stevewmass's picture
Stevewmass
Posts: 34
Joined: May 2012

When I received the diagnosis of cancer in April of this year my world feel apart, you see my mother died of RCC. So I started the great Google search and found a ton of web sites and survivor charts, at this point I didn’t even know what stage or grade I had or even if it was benign or malignant. It was in that search that I found this board, and it was a life changer for me. Yes I was still an emotional mess and scared. As i was reading the different posts, I came to believe that anything was possible. The people here made it sound simple for me. The survival rate was not as Important as I thought it was. It's only a number and people here have proved how wrong that number can be. It all boils down to the love, support, a positive attitude, and the willingness to fight. Knowledge of your disease is key, along with good doctors and a treatment plan that you feel good about. It's your life take it back from the cancer.

vittoria01's picture
vittoria01
Posts: 23
Joined: Jul 2012

I am Italian
I had partial nephrectomy surgery in June 2011
The alien was 2.7 cm papillare2. G3
T3a for perirenal fat extension.
My follow up is TC every three months
I am in a study at NHI to Bethesda for suspected HLRCC an inherited form of papillare2
This forum I really like, my complements

vittoria01's picture
vittoria01
Posts: 23
Joined: Jul 2012

I am Italian
I had partial nephrectomy surgery in June 2011
The alien was 2.7 cm papillare2. G3
T3a for perirenal fat extension.
My follow up is TC every three months
I am in a study at NHI to Bethesda for suspected HLRCC an inherited form of papillare2
This forum I really like, my complements

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Vittoria,

Be sure to let us know how you progress in your trial at NHI. Getting information on these studies/trials is very important for people coming to this board looking for information/answers. How long have you been participating in the trial and does it include medication/infusions? Have you improved since being in the trial?

Wishing you the best and hope to hear more.

vittoria01's picture
vittoria01
Posts: 23
Joined: Jul 2012

Alice,my studio is just watch with PET TC MRI every 3 months 
I enclose a link that can be very interesting www.hlrccinfo.org

vittoria01's picture
vittoria01
Posts: 23
Joined: Jul 2012
Raine22's picture
Raine22
Posts: 31
Joined: Jun 2012

My surgery was 3/28/12 and the tumor is almost the same. Mine was 9.0. I am 49 yr old female. My tumor is invasive into muscle within renal sinus. I am fortunate enough to be in Houston and attend MD Anderson. I got into a double-blind clinical study on Votrient, which I started at the end of May.

I don't post much here, but I do read a lot. I am just now getting to feel back to normal. I have faith that all will be okay and this is just another test for me! I really have spent the last few months, just terrified and afraid of everything. We are so fortunate that this crap has not metastasized when it was discovered. I will get additional CTs in early October.

I have 3 beautiful daughters and cannot allow this to bring me down in any shape or form!

I wish you luck! Check around and see if you can get into the study!

Lorraine

adman's picture
adman
Posts: 257
Joined: Jul 2012

God Bless everyone in these rooms!!

goyler
Posts: 11
Joined: Aug 2012

I guess I am a new member to the T3a Grade 4 club. I had my surgery one month later then you. I am a 54 year old male with a wife and 9 year old son. Like you I am outwardly positive but at times lately I can have some doubt. This web site certainly helps me deal with those doubts when I read others postings about their experiences. I would be interested to see how your study goes. Good luck to you.

Greg

vittoria01's picture
vittoria01
Posts: 23
Joined: Jul 2012

We remain in contact

JackieP125's picture
JackieP125
Posts: 55
Joined: Jan 2012

There are days that we all have our doubts, but must push them aside and keep going. Sending prayers your way!!!

DogRescuer's picture
DogRescuer
Posts: 49
Joined: Feb 2012

I'm a T3 too--8.5 cm tumor had gone into the fatty tissue surrounding the kidney. I'm 63 and had Stage II breast cancer 3 yrs ago (with surgery and chemo). Then this. Ugh.

I have to get scans every 3 mos and that just freaks me out. My nephrectomy was Feb 27th.

vittoria01's picture
vittoria01
Posts: 23
Joined: Jul 2012

Hi DOG RESCUER, remember me?
We are a member of club 2 cancers.
I thyroid cancer in 2007
kidney cancer 2011: papillare2, t3a for perirenal fat extension.
How are you?
I have changed email address

DogRescuer's picture
DogRescuer
Posts: 49
Joined: Feb 2012

How are you doing? I'm doing well. I had back surgery 3 mos ago and trying to get through physical therapy. ugh. I'm really tired of pain, you know?

We should keep in touch by email.

Linda

vittoria01's picture
vittoria01
Posts: 23
Joined: Jul 2012

Very willingly
soni.grimaldi@virgilio.it
What happened to your back?
You're right is not an easy life

vittoria01's picture
vittoria01
Posts: 23
Joined: Jul 2012
donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

2006 Surgery
T2 N2 M1 Stage IV
Furhman II-III/IV
2007 & 2008 surgery for single node recurrences
After initial Dr's comments of 5% get to 5 years.
Don't make bets on the odds.
Altho the tumor in the kidney was 12.5x11.5x8.5cm it was confined to the organ without invading the circulatory system. It had done the mets to left lobe of liver, 5.5x4.5x3 cm, and 2 of the 11 paracaval nodes.
Right now, I am a living "freak of nature", and hope all may be so lucky.

Th only suggestions: stay active, eat sensibly, have your regular tests, take care of your other kidney, participate in a support group, work, play and live.

Keep on keeping on.
donna_lee

vittoria01's picture
vittoria01
Posts: 23
Joined: Jul 2012

Thanks, we need these testimonies

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