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Pancreatic Lesions

NYNY83
Posts: 8
Joined: Mar 2018

Diagnosed with RCC in 2014.  2cm.  Partial nephrectomy.  Stage 1.  Contained in kidney.  Just got report from most recent CT scans.  2 lesions, 5mm and 9mm appeared on pancreas.  Weren't noted on previous year's MRI's. Can't see doctor for a week and a half.  My understanding is that RCC very rarely spreads to pancreas.  Hoping it's nothing, but hard not to freak out.  Anyone have any similar experiences?  

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

sorry I don’t have any direct experience but based on my research.

only diagnosed six months ago so this is only based on my constant reading of anything and everything to do with rcc

RCC does not usually go to pancreas but apparently it is a favourite spot of some rcc as opposed to other cancers like breast and lung

Please don’t freak out. I can imagine it is not very nice having to wait for an answer .

thats the bad news

good news it would be very rare for it to be there with such a small mass and after this time... that much I am sure you know

I hope you get an answer quick... it is apparntly not unusual for non cancerous cystic lesions to appear:

praying for you and keep us posted

Annie

 

 

 

NYNY83
Posts: 8
Joined: Mar 2018

Thank you for your kind words and thoughts.  

donna_lee's picture
donna_lee
Posts: 1014
Joined: Feb 2009

I have them in my pancreas, too.  Now that they have been noted on the CT, you will probably find them there for a long time, as I have.

See your doc, get your answer, and then relax.

Hugs, Donna

NYNY83
Posts: 8
Joined: Mar 2018

Were your lesions always there, or did they appear one year?  What's worrying me is that they weren't noted in the prior scans and MRI's.  

Thanks.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

After many, many CT scans, I noticed some radiologists like to mention some small things and some don't. I've seen mention of small things come and go over the years on my CT scans. Now I don't worry too much. I haven't had them mention any on my pancreas, but I did have some lung nodules mentioned and then not, then mentioned and then not. Like that. Also, I had had a small lesion on the top of my femur that was mentioned at the beginning of my RCC. They did a nuclear bone scan and didn't find anything, and then the radiologists stopped mentioning it later, although I'm pretty sure it's still there.

Not noted doesn't mean it wasn't there. That's the moral of my story. :) If it's small, they might just not mention it. And those are small (I think).

Is it in the summary section or the detail section? The other thing I've noticed is to particularly ignore small stuff in the detail section.

I wouldn't worry about it. Ask your doctor though.

Todd

NYNY83
Posts: 8
Joined: Mar 2018

Todd,

Thanks for the perspective.  It was mentioned in both sections, but you're right that stuff does come and go in the reports.  One year they mentioned my enlarged spleen that turned out to be nothing. (I remember trying to figure out which specialist owns the spleen.)  Another time they focused on a cyst that looked more complex than previous scans, but that too went away.  It's exhausting, though.  I'd guess you were stressed after initially hearing about the lung modules.  This is one area where the prescription to stay positive is imperative; while focusing on worst-case outcomes might have been good from an evolutionary perspective to promote survival, it sure makes it hard to get through the day.

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

In April 2015, which was getting close to 3 years after my left nephrectomy, a CT scan showed 2 lessions in my pancreas, one 26mm and the other 16mm.  The report also said they had grown from around 8-9mm 12 months earlier, even though the 2014 report did not mention them.  It seems that they can see things better if they know where to look. 

At 5mm and 9mm yours are quite small, so they must have been looking quite hard.  Good to see that.

I was told it is not unusual for mRCC to lodge in the pancreas.  If you go by my experience they grow quite slowly, so don't panic.  After they found these two in the pancreas, I had a few more scans, which discovered that I had about a dozen tumours throughout my abdomen.  I still wonder why they did not see those earlier.  Also the Lipase level in my blood was sky high  (not something they had ever checked before).

The good news is that I got into a trial of Ipi/Nivo combination immunotherapy which completely cleared up all of those tumours in about 18 months.  I am still on the trial and my latest CT scan (2 weeks ago) again came back clear.  Full details of the trial are on my profile on this site, and I understand full publication is imminent.  I know it does not work for everyone but the success rate for mRCC is quite good, better than most alternatives.

Good luck with your own journey through the world of kidney cancer.

NYNY83
Posts: 8
Joined: Mar 2018

Thanks for sharing your experience.  That's great news on the responsiveness to your drug regimen!   Pancreatic resectioning sounds brutal, though the outcomes of mRCC to the pancreas don't look too bad, vs. primary pancreatic cancer.  

One thing that's evident in many of our journeys is the inexactness of the scans.  I had one radiologist miss my original tumor on a CT without contrast, when I originally went to the ER with a kidney stone.  I had two more miss it on the f/u ultrasound.  Thankfully, my urologist was diligent and suspected something and sent me for a CT with contrast that showed the mass.  More reinforcement for staying aggressive with managing the process and getting multiple opinions.

cubsfan9
Posts: 69
Joined: Oct 2013

Good Morning, NYNY!

I am from NY, too--W A Y upstate (hour north of Albany).  My husband has pancreatic met that was discovered 8 years after his original diagnosis/nephrectomy.  You are correct that it is not a 'common' site for RCC to land, but it does happen.  His was very large-6.9 x 5.2 cm-and on the head of the pancreas.  It was deemed inoperable because of its location (it encased the superior mesenteric artery) and the likelihood of other sites (also had suspicious nodules on lungs).  He has responded very well to Sutent over the past 5 years and has been mostly stable.  We have no idea how long it had been there as he was having annual scans and it wasn't previously noted.  Good news...from what I have read, pancreatic mets tend to be "indolent"  (lazy?) and respond well.  There are several patients on Smartpatients.com who have had other experiences with this if you are interested.

PS--I fully agree with the comments about inconsistent scan reports.  They drive me crazy!!

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