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Need some support

Julio25
Posts: 2
Joined: Sep 2020

Hello everyone.  My name is Julio and I am 36 years old with a 4 year old . They found a 1.5 cm growth in my kindey about 3 days ago. My mind is racing and I am super scared. I don't know what to do or anything.  I tought I had a appointment for tomorrow but it was canceled.  Now I am probably going to worry all weekend.  

Mmoses25
Posts: 62
Joined: May 2020

I think you will be fine relax it's small mine was 4.1 stage 3 I know it's hard not to worry but I think you got this your going to be good try to do thing to keep your mind off of it and I'll tell don't go on internet and read about it most the stuff on there is old news good luck with it your also young which is in your favor just try to relax 

Bay Area Guy's picture
Bay Area Guy
Posts: 449
Joined: Jun 2016

Mine was 1.5 when it was found in late 2013.  The standard of care at that time was active surveillance.....meaning wait and see if it grows by doing scans every six months.  Mine didn't show any growth until April, 2016.  Ultrasound showed it went to 1.8cm, so the urologic oncologist referred me to a surgeon and it got teakettle out with minimally invasive robotic surgery.  I was in the hospital overnight.  Very little pain for me and about six weeks for full recovery.  I took the r3covery slow, just increasing the amount I walked each day until I got up to about three miles a day, then it was back to the gym.

Some things to consider.....can you you accept active surveillance or do you just want it out as soon as possible?  There's no right answer to that question, just personal preference.  My doc suggested active surveillance because things this small sometimes turn out to be benign and he didn't want me to have unnecessary surgery that might reduce my kidney function.  Are you seeing a urologic oncologist or a regular urologist?  A urologic oncologist is better since they treat malignancies where a regular urologist may not. Depending on where you live and your insurance, you might want to see if you can get referred to a university teaching hospital.  I got referred to Stanford University and got exceptional care.

icemantoo's picture
icemantoo
Posts: 3279
Joined: Jan 2010

You have a very small kidney tumor for which your chances for a full and complete recivery are close to 100%. You were me 18 years ago.

 

 

 

 

icemantoo

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

Glad to meet you, although it would have been much nicer under different circumstances.  First of all, I want to assure you all of these fears and feelings are perfectly normal.  We have all been there, so we know what you are talking about and what you are feeling right now. 

At 1.5 cm you are will probably have a decision to make once you meet with your doctor; whether to remove it or just watch and wait.  Either way, count yourself on the lucky side that they caught this very early.  Can you let us know where you're being treated?  We'd all advocate for a doctor that specializes in RCC rather than a run-of-the-mill urologist.  

Please know, you can count us as part of your support group.  We'll help you as much as you want us to. 

Blessings!

Stub

CRashster's picture
CRashster
Posts: 236
Joined: Mar 2017

Mine was 10cm, 4 years ago. Welcome to the club and enjoy your weekend.

Deanie0916
Posts: 320
Joined: Nov 2016

Sorry you find yourself in this place. I agree with other commentors try not to look things up on the internet. Try to do things you live that will distract you while waiting. It's a small spot so that is really good and hopeful news. Let us know how things go, we will support you!

 

misterace
Posts: 19
Joined: Jun 2020

Hi Julio,

 

I am 33 and discovered mine this year in June. Mine was 5.5cm on the CT scan, but once removed, it was 4.5cm. Surgeon estimated it had been there 5-10 years. In general, most kidney tumors are very slow growing. 

My advice:

1.) Take things one step at a time. You have no idea if it's even cancerous. 

2.) At 1.5cm, if it is something bad, you've caught it very early and this is the best possible scenario. 

3.) Stay off google, stay off google, stay off google. There is SO MUCH outdated info and statistics out there. There are also so many different kinds of tumors and it's so difficult to generalize. Until you have a clear pathology report, you literally know nothing about what the tumor is , so don't spend time worrying about the unkonwn. 

4.) Go see a urologist that specializes in RCC. They know the most and can guide you the best. 

Feel free to reach out to me by Private Message. I am happy to talk to you anytime. Everything is going to be ok.

user2367's picture
user2367
Posts: 3
Joined: Oct 2020

i know its hard, it is so scary. But remember that there is always a positive side, even in the worst situations, there is always light, i know how you feel, but the light is always there. You just have to be receptive to see it.

All you guys have my support. Blessings for everyone.

medic1971's picture
medic1971
Posts: 195
Joined: Sep 2015

Hello Julio, first off I am sorry you are having to deal with this, especially with a small child.  I was 43 when they found two tumors on my right kidney, both small.  My little girl turned 6 the day before my surgery. So I have an understanding of where you are coming from.  

Please keep the following in mind:

1. 1.5 cm is very, very small in the world of renal tumors. Even if this is cancer, the chances it will spread is almost zero.  You could go more than a year before this becomes a threat to your life

2. if this is cancer surgery is curative, no chemo or radiation, just follow-up scans.

3. This is a biggie, find a urologist who specializes in this type of surgery.  The biggest risk to your health is not the tumor, but losing a kidney needlessly.  Things like diabetes, high blood pressure, and heart disease take on a new meaning when you only have one kidney.

4. Dr. Google is not your friend

5. Take your time and find the right doctor for you, at 1.5 cm you've got time.

 

When you get time please watch this video: It’s about 30 min, but there is a lot of good information that will help put your mind at easy.

https://www.youtube.com/watch?v=493RFA_tA1I

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