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33 Years Old - Just Diagnosed

misterace
Posts: 9
Joined: Jun 2020

Hi All,

I am new here, but I am glad I have found this resource. I am shocked to get this diagnosis because I'm an otherwise healthy asymptomatic 33 year old guy, non-smoker, not overweight, clean yearly labs, and no history of cancers in the family. 

I had food poisoning twice in 30 days,  so I asked my GP to order an abdomen CT scan. 

3 days ago I got the results of the scan and the abdomen was fine, by there was a 55mm x 35mm growth on my rt kidney. 

Yesterday, I visited with a urologist/oncologist, and he told me he is 99% sure it's malignant and needs to come out. He is a kidney cancer specialist.

It's on the top middle of the right kidney, and pokes out a little in the back, but according to the scan it has not extended to any of the other organs and is not close to any major veins. He said the aim is robotoic partial nephrectomy, but since it's in that top middle area, full might be required. 

He also said we will not know staging until it's out, but he thinks it's stage 1 or 2. This all threw me for a spin. 

I am going through all sorts of emotions. From shock, to strength, to scared, to sad. 

I am also having anxious thoughts pop into my head "What if it's way worse? What if they take it out and its a much higher advanced stage? What if it's rapidly growing and I don't know it?"

I am normally a bit of a  hypochodriac and suffer from anxiety, so it's tough for me.  But perhaps that's the blessing. If not for being so worried about my stomach issues, I never would have found this. 

Anyways. Sorry for the rant. I'm just scared. But I hope to make new friends here along this journey. Waiting for a surgery date, but it's likely to happen by the end of this month. 

 

- Ace

 

 

donna_lee's picture
donna_lee
Posts: 952
Joined: Feb 2009

I think we on this board have been thru every emotion there is when the news is delivered. Labs, as in CBC (Complete Blood Count) will tell the Dr. a few things.  A CMP (Complete Metabolic Panel), which you will probably have in the future labs, also tells more about how the organs are functioning.  Mine, too, was found as a sideline for another test or sympton.  

You have a start in the right direction: Finding the sucker, an idea of the size, appropriate Dr., and are developing the action plan. All I wanted to do was get the cancer out of me!

We'll hold your hand, or offer advice; whatever is needed as you progress thru Pre-op, surgery, recovery and then-WHAT.  Take it one step at a time.

To find out more about those who have posted or are on this board, click on the user name to read their stories. That is if they've done a bio.

Wishing you good luck as you join this board.

Hugs,

donna_lee

icemantoo's picture
icemantoo
Posts: 3264
Joined: Jan 2010

That you have to join our club so young. The food poisining may have saved your life to get diagnosed befotr it got big and bad.

 

 

 

 

 

 

icemantoo

AliceB1950's picture
AliceB1950
Posts: 61
Joined: Jun 2019

Stage 1 is below 7cm, stage 2 is over.  Stage 3 is if it's invaded the veins or kidney (and some other things I've forgotten), stage 4 is if it's spread to other parts of the body.  Yours sound like a 1 unless the scans are off.  Mine was also parked on the top of my kidney.  I had a total laparoscopic nephrectomy, but mine was 7 cm exactly, and I think because of my age (68 at the time), they tend to do radicals.  I'm trying not to think age discrimination!  But I think the partials can be more complicated, so they might not do them as much on older patients.  You should do just fine.  As one of my doctors said, look at all the kidney donors out there running marathons!  They got the same surgery.

eug91's picture
eug91
Posts: 227
Joined: Jan 2019

Sorry you had to join us, but there are great folks here on the forum. We all know what you're going through, so we know you're going to do great. If you have any questions or just want to vent or complain, we're here for you. 

It's terrible fortune that this happened to you, but it's good fortune that you found it early. And while the procedure isn't exactly fun, being as young as you are, your recovery should be easier. And at the end of it, you will have that tumor out of your body. 

Two tips-

-In many ways, the mental part of this process is harder than the physical. It's natural to be scared and anxious. But you're not alone in this. We all went through it. Just take it one day at a time, remember that you're gonna beat this, and before you know it this will be in the rear view mirror with your whole life ahead of you. 

-Go back and read posts on the forum, click on people's profiles and read their stories. There's a ton of great information here that helped calm me down. But at the same time, beware of googling for information. A ton of the information out there is outdated. Medical tech improves at tremendous speed, with new advanced treatments and improved long-term survival rates, so even data from a few years back is woefully outdated. 

You're gonna do great. Good luck! You've got this! 

Max57's picture
Max57
Posts: 167
Joined: Mar 2015

 food poisining saved your life 

Bay Area Guy's picture
Bay Area Guy
Posts: 425
Joined: Jun 2016

Hi Ace.  Sorry you're having to join us.  I know the emotions you talk about as I went through many of them.  Mine was found by accident as well.  I was in for a routine annual physical.  My urine test showed microscopic traces of blood, so I was sent for a CT scan on the assumption it was from kidney stones.  Instead of stones, a 17mm lesion was found on my right kidney.  I got the results ahead of my doctor and it took me about 30 seconds to drive the three or so miles from the hospital where the scan took place to the doctor's office to get confirmation.  He immediately referred me to Stanford and after 2-1/2 years of observation (since it was so small, they weren't certain it was malignant), it came out.  That operation was 4 years ago and my follow-ups have been fine ever since.  And, no, the cause of the blood in my urine was never found and, more mysteriously, never happened again.  It was a freak one-time occurrence that may have saved my life.

The only thing I can add is a warning not to search for information on the internet.  There are so many sites that have very old information and some have misleading information. It drives you crazy.  Just know that the treatments available to treat kidney cancer are far more plentiful and far more effective today than in the past and new treatments are seemingly being developed and released every day.

The people here are very supportive and knowledgeable.  They'll be able to answer a lot of questions and provide you with great perspective.

jroby55
Posts: 40
Joined: Feb 2019

Hey Ace,

Your story is nearly identical to mine except mine was found incidentally doing a CT of the chest. This board helped me

so much. I agree the mental aspect is more difficult than the physical and staying away from online research is a good idea. Also, check your messages, I sent you one!

Allochka's picture
Allochka
Posts: 907
Joined: Nov 2014

Hello Ace,

My husband was 36 when diagnosed. And also by accident! It is tough time, but sounds like Stage 1, which has great prognosis.

You are SO lucky to get that food poisoning,it has saved your life.

Hang in here, this board is wonderful and helps to keep our sanity during hard times.

Steph85's picture
Steph85
Posts: 163
Joined: Feb 2018

So I was 32 when I was diagnosed in 2017, non smoker, not over weight, and a female! No history of kidney cancer in the fam either! I havent been on this forum in months, and your the first post I see! I had an open partial nephrectomy in Jan 2018. Have an awesome 6 inch scar across my lower abdomen. I am due for my CT scan this month to make sure i'm still in remisson. Pretty confident I am since I was stage 1 grade 2. My tumor was 3.2cm. It was discovered because I pigged out on thanksgiving and thought I was having a gallbladder attack. Nope, I was told it was gastritis.. but they found a tumor while doing the ultrasound.. I thought for sure that was going to be the last Christmas with my family. My Mom was diagnosed with esophageal cancer in Oct. 2008 and had surgery in jan. 2009, but the cancer had already matastasized by the time of the surgery, she never recovered from surgery. Anyway, I say this because it was like she knew it was going to be the last christmas. I couldnt stop googling EVERYTHING.. Yeah, don't do that! I am here for you if you have any questions. You will get through this. Its scary, but we are incredibly lucky ours was caught early. 

 

Take care,

Stephanie 

misterace
Posts: 9
Joined: Jun 2020

Wow. Thank you everyone for your kind words and responses. 

 

This entire has been such a whirlwind of emotion, fear, and confusion. But this forum has helped lessen some of that, so thank you so much to everyone that responded and to everyone that reached out. 

 

I'm set to have a robotic partial nephrectomy in 10 days. Hopefully it's successful. The surgeon gave it a 90% chance of being able to save the kidney, so I am hopeful.

 

I'm just trying to manage my anxiety at this point. It's so hard with so many thoughts. Thankfully the scans of the chest came back clear, but I've had these strange mini migraine-like headaches for the last 6 weeks (not debilitating enough to keep me from functioning completely, but giving me slight head irritation and tiny bits of nausea) and now I'm scared it may have gone to my brain? Ugh. Not fun being a hypochondriac. I may insist on a brain MRI.

 

Thanks again all. 

misterace
Posts: 9
Joined: Jun 2020

Hello all,

 

Just wanted to provide an update here in caeit helps anyone. (also can't figure out how to edit my profile)

I had my partial Nephrectomy done at UCLA with Dr. Shuch on 7/15 and they did a great job and saved 65% of my kidney considering it was a bit of a tough case. I did lost a lot of blood, had a rough hospital stay (6 days), but I am back home and on the mend now. 

There was a 50%+ chance based on the imaging that it had invaded the fat of the kidney and because of its shape, that it was a potentially aggressive tumor with aggressive features. Anywho here is a breakdown of the results:

Size: 4.5cm (was 5.5cm on initial CT)
Type: Clear Cell Carcinoma
Stage: 1b (no fat invasion, was pushing on the capsule, but did not invade, even microscopically - Feeling very blessed about this)
No Sarcomatoid features.
No Necrosis.
Grade: 3 (only part I wish was different, but it could always be worse)
Negative margins all around.

Surgeon said all signs was great except for that it was a grade 3 tumor, and therefore puts chance of recurrence at 10-15%... which Sounds good to me. Plan is to do scans every 6 months for the first two years, and then yearly scan thereafter for 7-10 years because of my young age. I'm going to have genetic testing done too.

 

Biner
Posts: 35
Joined: Apr 2020

Smile

eug91's picture
eug91
Posts: 227
Joined: Jan 2019

Congrats on getting through it! Hopefully you're well on your way to healing up. 

Dr. Shuch is awesome. Good idea to get the genetic testing done. 

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