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Paranoia has set in: help

vfelty's picture
vfelty
Posts: 21
Joined: Sep 2013

I was diagnosed last week with Stage 1 RCC.  a biopsy of my kidney is what led to the diagnosis.  I was reading how there is a small chance just having the biopsy could have caused the cancer to spread outside my kidney!  I am scheduled for a nephrectomy on 10/21.   Assuming that the surgery goes well, how will I know if i am really cancer free?  How would i know if it did spread or not?  I am so worried I can't sleep! I am only 39.  Any advice? Any words of comfort? 

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

The only thing that I can say with any certainty is that worrying will not help.  Just the fact that you caught it now is encouraging.  What you read on the internet is quite often highly suspect.  Some of the others here will have a better view of this and will probably bring realistic statistics.  Have the surgery, deal with the recovery and pay attention to the pathology report.....standby for the other folks now.....

vfelty's picture
vfelty
Posts: 21
Joined: Sep 2013

I am not going to read so much anymore.  

angec's picture
angec
Posts: 621
Joined: Mar 2012

I saw this information online:

Myth: A needle biopsy can disturb cancer cells, causing them to travel to other parts of the body.

Truth: For most types of cancer, there's no conclusive evidence that needle biopsy — a procedure used to diagnose many types of cancer — causes cancer cells to spread.

There are exceptions, though, of which doctors and surgeons are aware. For instance, needle biopsy usually isn't used in diagnosing testicular cancer. Instead, if a doctor suspects testicular cancer, the testicle is removed.  

___________________________________

I would not worry too much about this. Just go in and have your cancer removed and be cured. Stage 1 is extremely early and likely this will be the end of it all! Don't cause yourself undue worry about something that is not very likely to happen. You will be fine. You will follow up with your Onc regularly have periodic scans done to be on the safe side. I bet anyone on this board would bet that you will be cancer free!

Take a deep breath and have a good nights sleep. Please let us know how you are.

vfelty's picture
vfelty
Posts: 21
Joined: Sep 2013

Feeling better now after readung these replies.  You are both right, it does no good to worry.  I know better but once I started to think about it, it only got worse.  Finally fell asleep.  Thanks for your replies!!!:-)

vfelty's picture
vfelty
Posts: 21
Joined: Sep 2013

My urologist diagnosed me and is going to do the surgery.  My primary care physician Has consulted with me this week.  I don't have an oncologist.  Do I definitely need one?  

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

You are going to be fine but you need to be under the care of cancer expert going forward.  Don't settle for less.

todd121
Posts: 515
Joined: Dec 2012

You'll need your pathology report then take it to see a medical oncologist that hopefully has experience with RCC. The more the experience better (if that's what they find). I'd go soon. No point in going until you have the pathology report,though. Your urologist may discourage it (mine wasn't excited about it). Ignore him/her. The more information you get the better.

If it's stage 1 (confirmed by the pathology), clear cell, RCC, you could be followed by your urologist since the cure rate is quite high, but I'd still get a consult with a medical oncologist and I wouldn't trust a medical oncologist that doesn't have RCC experience unless they are really good, really thorough, and willing to do research on your behalf. Treatment of this disease has been changing rapidly in recent years, and a generalist isn't likely to be up on what's happening.

The first medical oncologist I saw was a young, inexperienced one and he punched my numbers into some tool on a website and told me I had only a7% chance of it coming back. I was lucky enough to have an uncle who is a retired oncologist and he'd been reading studies for me and told me to get another opinion because that didn't sound right. I went to 2 RCC specialists, and both told me my chances were closer to 40%, maybe even 50%. That led me to decide to go into a drug study for an adjuvant therapy, because I just felt my chances of recurrence were too high to not do anything.

If you stick with your urologist for followups, just make sure you get scans every 4-6 months for the first 2 years and yearly to 5 years after that at a minimum. The absolute minimum followup is a chest x-ray, and ct of abdomen/pelvis every 4-6 months for 2 years, then yearly to 5. If you can get them to give you a CT of lungs too, so much the better. You'll need these even for stage 1. If anything does develop, it's better to find out early.

Hope it turns out well for you!

Todd

icemantoo's picture
icemantoo
Posts: 1480
Joined: Jan 2010

Vfelty,

The real scary part is over. You have been told you have Cancer. You have been told you are having major surgery. Your recurrance rate is as close to below the single digets as possable.

 

Once you recover from the surgery you should slide by with a few routine tests as possable. Many members of this club would give anything to havn as good a diagnosis as yours. 

 

 

There is nothing wrong starting out scared where the C word was something somebdy else or older people had. And whoever heard of Kidney Cancer.

 

OK the surgery will not be fun and it may keep you off large roller coasters for a year.

 

 

I expect nothing less than you helping me with the newbies within the next year.

 

 

Icemantoo

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

I'd like to make a record here of what a great job we all see you constantly doing, iceman, in helping newcomers to relax. You're like an avuncular manager of a convalescent home, welcoming new arrivals and ensuring they're as comfortable as you can make them. 

I share your hope that other long-term survivors will follow the lead set by you and your names-sake (meaning Gar(r)y - there ain't but one 'icemantoo'!) whose speciality is removing stitches (!). 

There's a bit of space between you politically but you are both motivated by a vision of a fairer and a more compassionate society and that underwrites what you both keep doing so admirably.  It's good to see some apprentices emerging to join your ranks - limelife is one such, who keeps on growing in stature and steadily adding his help in your endeavour to make accepting a new life-situation easier for those still trying to accommodate to the shock of their dx. 

Here's hoping that you'll all be doing the same valuable job here for many more years!

 

vfelty's picture
vfelty
Posts: 21
Joined: Sep 2013

I am a native Texan, born & raised in Garland.  Thanks for replying!!:)

vfelty's picture
vfelty
Posts: 21
Joined: Sep 2013

Thank you for making me smile and feel at ease!  Yes, I will be here for the newbies in the future, but hope there's less of them because someday someone is going to find a cure for us all.:)

vfelty's picture
vfelty
Posts: 21
Joined: Sep 2013

I will heed your advice.  Thank you SO much!!!! 

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