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Post RF ablation 3yrs out ,they say its back..What , I was told it was Benign?

suki731
Posts: 13
Joined: Jul 2012

Hello all

I joined the discussion group about a week ago and I have to say I have been supported and educated more in this week then I have been in 3yrs since my dx: Solid R Renal mass 1.5 cm in May 2009. I remember that Friday afternoon when the doctor said Suki " You most likely have Kidney Cancer" I was 45 yrs old and my mass was also an incidental find during an ER visit due to abdominal pain and blood in my urine. They also found a 5.5 cm simple cyst and calc stones in the L kidney. I had an RF ablation on august 6th 2009 for the solid mass. My scans have been good until recently on 6-20-2012 when I heard the news: The mass that was ablated is lighting up again, nasty little bugger!...I now live in a new state, I am seeing a new Doc and when I saw him for rimy first visit his first question was, " Why didn’t they do a partial nephrectomy for you 3 yrs ago??". My new doc seemed confused about the fact that I am not a high risk for surgery and that would have been the " Gold Standard" for me at the time. This stunned me: My head was spinning because I thought I was receiving the newest technology for a small mass then. I am now told that because of the ablation, even after my partial, it may be difficult to properly diagnose the type of cancer it is. I really thought 3 yrs ago that I was done with this for good! you see, the tissue biopsy in 2009 read: Benign. which my new doctor feels was incorrect , stating that he feels not enough tissue was taken to offer that final dx. I am now going through the emotions and realization that I am dealing with a recurring cancer mass, but also feeling like I didn’t educated myself or ask the proper questions back then. From all that I have read on this board, Partial Nephrectomy is the first thing most the doctors order right away for a mass my size, especially when you are lucky enough to find it early. The good news is: I have followed up even through all of my moving around due to work and it's being discovered early again. I have my bone scan scheduled for this Thursday and the decision to have my partial grows near. I sent the surgeon who did my ablation all of the new records and scans , he will talk to my new doctor this week. I will keep you posted on my date for surgery. Wishing all of you….Blessings, love and faith...keep up the good fight!! and Thank you all for the education, support and friendship through all of this!
Suki:)

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

Suki,

Ten yeas ago when they did mine the only option was a full nepherectomy. Since than they have RFA, cybolation and partials all for the purpose of saving your kidney. Well some of these new things are not perfect. Neither is a full nepherectomy except that you will never have problems again with that kidney. Yours is not the first less than perfect result from these new procedures that I have read. Assuming your first Doctor did everything right with what was before him, what could of and should have been done 3 years earlier is what they call Monday Morning quarterbacking. The good thing is that you sill haave an excellent prognosis and everything should turn out fine.

Icemantoo

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

Suki you could have done the partial and still had a reaccurance,as for your RFA it is mostly used on older people ,people with one kidney or for smaller tumors like the one you had,also it is a much lees invasive procedure one for which most people return to work in a week where as a partial can take up to two months to recover.As for your biopsy on your first RFA the radioligist is using a CT scanner to locate and retrieve a sample and when considering the size of your tumor it is difficult to do.Suki i believe the statistical success rate for RFA is around 80% i am sorry but looks like you fell into the 20% group.So i feel the decision your doctor made 3 years ago was a good one but this is cancer and there are no gaurantees when it comes to this disease.Try not to be bitter and move forward and get well and keep us all posted.

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