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Well...I'm back again.

mrsleavitt
Posts: 9
Joined: Oct 2012

Well, here I am again I haven't posted in over a year...I've done everything I could to push the anxiety out of my mind since my doctor gave me the "all clear" after my scan last July. The original mass was found in July of 2012 and was only 2.5 x 3-ish. The post surgical biopsy showed stage 1, grade 1 renal cell carcinoma, and that they had removed the entire tumor.

I just completed my scan two weeks ago and they found something again.  Last year, there was a spot on my scan that I questioned but was told it was just "surgical abnormalities" from the resection of my kidney (the radiologist must not have thought anything of it because it wasn't measured).  This year, I've been told that I have a 7.3 x 6.2 x 7.1 hypodense abnormality and that I have a 50/50 chance of it just being scar tissue, or being cancer again.  I'm feeling extremely anxious since this is a huge change from my last scan and having been told that my chances of it ever coming back were are little as anyone ever even developing RCC.  

I'd like to think that since it's in the exact same place as the first one, that it's just scar tissue.  Plus, the radiologist didn't use the terms "mass" or "enhancing", but I'm scared nonetheless. 

My question is, has anyone else had this happen and had it just be scar tissue?  

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

Mrs L,

 

I do not have the answers to your questions, but I would get a copy of your scans and get a second opinion. The mass sounds like the measurement of your Kidney and it is highly unlikely that any tumor grew to that size from nothing in a matter of 2 years. These are my thoughts for whatever they may be worth.

 

 

Icemantoo

mrsleavitt
Posts: 9
Joined: Oct 2012

Nice to see you're still around :)  I definitely respect your opinion on the matter and will be seeking a second opinion.

When they told me the measurements, my first thought was "holy cow, that's the size of my kidney!"  The fact that he only moved me up from Oct. 20th to Sept. 3rd makes me feel a little better since I know my doctor is the type that would clear his schedule or call me personally if it was serious (at least in past experiences anyway). 

I'm kicking myself a bit right now though for not consulting with an oncologist back in 2012.  Just the peace of mind from it would have been worth it in my opinion.  I'll definitely be doing that this time as a precaution. As far as a second opinion from another urologist around here...mine is the best one here for at least a hundred mile radius. I wouldn't know where to begin to find another. The one I saw before him was a quack and tried telling me I just had a UTI.  

~Amanda

Laura76's picture
Laura76
Posts: 49
Joined: Aug 2014

Good luck to you, hoping all turns out well.

APny's picture
APny
Posts: 1987
Joined: Mar 2014

I"m no expert bu if you had a CT scan with contrast and it's not enhancing I would take that as a good sign. But the important thing is, what and when is the next step to determine what that is? I hope it's as soon as possible so you're not living with this anxiety. I'm so sorry you're going through this. I hope it turns out to be just scar tissue.

mrsleavitt
Posts: 9
Joined: Oct 2012

That's the hope I'm holding on to. I definitely had the contrast...I'm not sure what the "standard" is, but I get the IV and have to drink a ton of the stuff too. When she called, I asked the nurse to read the entire report to me over the phone and asked if it specifically said "enhancing" anywhere...it didn't that she could see or from what I heard. From what I understand, that's the huge red flag...but then I don't trust doctors much anymore these days either.

My follow up appointment isn't until Sept. 3rd and the anxiety is killing me.  I already have anxiety issues and now I've had to graduate to 5mg of Xanax 3-4 times a day, plus a sleep aid just to function.  My urologist knows my history with anxiety and I think that's why he did his best to get me in quicker. 

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

I hope its not a recurrence. To encourage you we were told a couple of months after my husbands nephrectomy that he had a recurrence. They eventually found out it was just his pancreas had moved into the gap the kidney had left and they had made a mistake. Hope this is the case for you too. Can totally understand your anxiety though!  Looks like yours was a partial nephrectomy though but goes to show they do make mistakes sometimes anyway in the scans.Hugs Melissa

mrsleavitt
Posts: 9
Joined: Oct 2012

Sometimes seems to be an understatement for the radiologists in my area.  The first scan I ever had stated my kidneys "were functioning and appeared normal" although I could clearly see the mass myself.  I've also had them tell me I had an anerusym in my neck which turned out to be a tangle of blood vessels.  Then another time, I was told I was missing my left ovary, when it was actually just up higher than they expected (lol)...and then more recently, I was told my hand wasn't broken, when in fact it was broken clean through in 3 places and internally shattered as well.  

I'm guessing that mine is either a complex cyst or scar tissue (hopefully!). I do have a tendency to scar badly and to develop cysts so it's definitely a possibility.  I'm just a little skeptical given the measurements I was given.

Amanda 

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

Amanda,

 

Since the nurse only read you the CT scan report, get a copy. It may answer your questions better and relieve the anxiety.

 

Icemantoo

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