CSN Login
Members Online: 3

You are here

Initial diagnosis to active surveillance in 5 min flat.

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

Ok. here Goes.

-42 yo.Male, smoker (Until last week), slightly over weight, Apnea. No other major health issues  

-2.5 cm mass on Left kidney. found Last week during an appendicitis CT scan In a city that was not my home. 

-Surgeon recommended seeing Urologist and said they would probably opt for a biopsy. Sent me home with imagery disc.

-Urologist had trouble opening the imagery (I had to show him how).  Apparently the software that hospital used was not intuitive. He said that he had been in contact with initial radiologist form hospital and had his notes though.

-After looking at imagery for 2-3 min (only 1 of the 4 angle series because we couldn’t get the others open), he points out mass, says he’s 90% sure it’s malignant based on reflective signature matching rest of kidney structure.

-He then says he recommends Active Surveilance starting with a follow up Ultrasound in 3 months.

-I questioned metastasis risk during that period.  Doc says it is certainly possible but a low chance  

-No orders for additional baseline imagery or blood work 

 

 

So may questions. Luckily meeting with my PCP tomorrow but:

-How would he know it hasn’t already reached metastasis without further imagery and study of such imagery such as lungs?

-Should I do second opinion?

-What type of doc should I get it from?

-Does any of this even sound right? Active Surveillance on a 42 yo?  No further imagery or blood work?

-Am I missing anything else here?

Last Question:  i live about an hour from the Cleveland Clinic  I hear they have an incredible Kidney Cancer reputation.  Have any of you heard this?  Or should I go to my local hospital cancer center (about 15 min from home)?

Thanks all for any info you can send my way.

 

 

icemantoo's picture
icemantoo
Posts: 3273
Joined: Jan 2010

Lance,

 

 

First and foremost if it is Cancer which it sounds like, it rarely spreads when taken out before 4 cm, You just had surgery which may be one of the reasons for delay. Usually when they tell you 90% that means the scans are indicative of Cancer, but sometimes what looks like Cancer is not and that is not known until post op biopsy. Usually active surveilance is for smaller masses, but again may be because of your prior surgery. Discuss all this with your PCP as well as seeking that second  opinion.

 

 

 

 

icemantoo

eug91's picture
eug91
Posts: 243
Joined: Jan 2019

This is a great forum and it really helped me out when I was first diagnosed. Let us know if you questions or concerns - we're here for ya.

Everything icemantoo said above is spot on. While the appendicitis was unfortunate, it was fortunate that it enabled you to find the kidney tumor so early. Second opinions are never a bad idea. 

You've got this! 

 

Bay Area Guy's picture
Bay Area Guy
Posts: 436
Joined: Jun 2016

I had a 1.5 cm or so lesion that was found in late 2013.  I got a referral to Stanford Hospital and clinics and saw a orologic oncologist.  He suggested active surveillance and I also questioned the chance of spread.  He said RCC typically grows slowly and doesn’t often spread.  I opted for the active surveillance based on that.  He did, however, say that if I was uncomfortable with the chance it was malignant, he could get it out, but said that often tumors/lesions that small are not malignant and he didn’t want to reduce my kidney function unneccisarily.

To answer some of the questions:

Active surveillance for me meant six month checkups with either CT or ultrasound to determine if it grew at all.

I’d suggest a second opinion from a top notch urologic oncologist, not just a urologist.

Cleveland Clinic for sure.  If you can get a referral to one of the premier cancer centers in the world, go for it.

Even if it’s malignant, surgery should result in a complete cure.

 

en8236
Posts: 30
Joined: Dec 2017

get a second opinion... if it varies significantly with the first, get a third if needed. This is better than trying to find an answer solely on internet research. Best of luck with your journey ahead.

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

All:

Thank you for your support and stories.

UPDATE:

i met my new PCP today. He is Fantastic and spent over an hour with me today talking through a laundry list of issues. He personally favors Biopsy but is working to set me up with the Cleveland Clinic for Chest CT and a second opinion. This could be really good as I am hearing more and more great things about them. 

A bit of bad news though. It’s funny how your ears and recollection play tricks on you. I got my session notes from my urologist today. In those was a copy of the original radiologist report From the first CT. As I thought I had heard 2.5 cm, it’s acrually 2.9 x 2.7 x 2.6. A little closer to 4 than I had thought. 

The good news is that the Adrenal glands appear unremarkable and the renal vein is patent.  Guess there is a bit of a silver lining today. 

Really excited to be working with this new Doc. He is fantastic and helped put many fears at ease today. 

icemantoo's picture
icemantoo
Posts: 3273
Joined: Jan 2010

-but time to get rid of it in the short rather than long term.

 

 

icemantoo

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

Agreed!  Here’s to hoping for a call from the Cleveland Clinic soon. 

TeamCastiel
Posts: 3
Joined: Mar 2019

Hello I’m very depert for any and all information on granular cell Tumours. My great niece discovered a Knott after she fell last Christmas 2017. It was on her butt cheak right. After it kept getting bigger she went to the doctor. They did biopsy and said it was in fact a tumour. They needed to take it out. They did along with multiple layers of muscle. They told her we didn’t get a very small pc due to destroying what was left of her muscles. That it probably would grow back in time. It did rapidly. They monitored it and with in a few months back again and now on the other side. They have done more biopsy because it is growing so fast they were certain it was malignant this time. Test come back and they were fast growing but still was not showing cancer. They did genetic testing to see what would would react to it and basically it come back that only one or two have had this happen,they grow so fast and a very strong chemo can only sow it down. This was the surgeon who said this. He gave her phone numbers for doctors. He basically can do anything more. They do t really know anything about it. She has called all hospitals and most say she has to see them and most of any like z20000. To even talk to her. I’m hoping someone somewhere has been through this and can offer information as i fear time is running out.She is 19 and so brave.Please any information on trials or anything is better than we have. 

Thank you so much

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

So sorry to hear what your family is going through. Praying for you. Unfortunately I don’t have any advice as this is all new to me as well. 

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

Am scheduled with a new Urologist for a 2nd opinion.  This new one is from the Cleveland Clinic. its in 2 was. Nervous but ready to move ahead. 

jroby55
Posts: 40
Joined: Feb 2019

Who is your Doc? I went to CC and have nothing to say but great things!

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

Dr Isac. 

TeamCastiel
Posts: 3
Joined: Mar 2019

Thank you. I have a video on my face book asking people to share and it’s got amost 8k and so far only one other person has this and have had nothing done but surgery. It’s a tricky one. I pray you will be healed. 

Thank you for replying

TeamCastiel
Posts: 3
Joined: Mar 2019

everyone should go on his you tube you can find him under his name. He studies fungal infections and how the similarities are so close to cancers. 

He makes perfect so ce to me and I definitely think it is worth checking into. Please watch him Lance Hill. 

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Hi Lance, glad you found this forum~ 

I have a question you should ask. Does a biopsy risk spreading the cancer cells around?

And ask if they do laporoscopic/robatic surgery. To me, it helps heal and less painful. BUT

whatever they recommend you do, do it!

Keep us posted. We're here for you ALL the WAY!

And Halleluia if you really quit smoking! THATs a rough one too. Maybe RX Chantex can help?

Sending you CALM, HOPE and healing!

Jan

Subscribe to Comments for "Initial diagnosis to active surveillance in 5 min flat."