Should I be concerned?

Carrie,

In the seven plus years I have been a part of this forum I have seen survivors posting about “spots” showing up in the lungs on follow up CT scans many times. Normally the oncologist recommends “watchful waiting” to see if they enlarge over time. In many cases they remain the same and become an ongoing part of that patient’s anatomy. One of the reasons they do comparative analysis between current and previous scans when evaluating scan results.

 I have a couple of "spots" that show up next to my liver in my CT scans. In my initial follow up scans after surgery my oncologist said “I wouldn’t be concerned they are probably just cysts, we will just keep an eye on them”. Of course, my response was the same as yours. "That is easy for him to say, he is not the one that wakes up at 4 AM in the morning thinking about it". Unfortunately, one of the things that we as cancer survivors must learn to live with, is uncertainty. In my nightly prayers I always pray, “Thank You for this day without obvious cancer symptoms”.  We just have to take things one day at a time.

I was fortunate enough to not have swallowing issues after surgery, but many here have had several dilations before their new stomaphagus completed healing and developing scar tissue. The good news is once they got beyond that point, further dilations were typically not required. Recovery from this surgery takes longer than we would like and longer than most people expect. In my particular case, it was almost a year before I reached my “new normal” where I began to regain the weight I had lost and I felt more like my “old self” in terms of stamina and strength.

I know it is frustrating, particularly when you have children who don’t necessarily understand that mom can’t do all the stuff she used to do and be on call 24x7. But things will improve with time.

 Wishing you continued recovery

 Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Seven Year Survivor

Hello Carrie,

Just yesterday I got back the results of my latest scan.  It said I have a left upper lobe pulmonary nodule and that it deserves monitoring at future scans.  I found out it was too small to biopsy, but that my future scans will get bumped up from every 6 months to something more frequent.  I had a recurrence of the EC in my upper left lung in 2011 that started out as a nodule that merited further monitoring, so my wife and I are just a bit anxious.  Unfortunately, there's nothing to do except wait it out and hope it's nothing.  Odds are that it's nothing, but I understand your angst.  

Recovering from the initial treatments/surgery is a bumpy road at best.  If you browse around here, you'll see folks running into various obstacles.  When it feels like you keep getting knocked down, the key is to pick yourself up and keep moving forward.  It really does get better, even if it seems like it's taking forever.

Hope it's nothing for you too,

Ed

CarrieN said:

Hi Ed,

Hi Ed,

Sorry to hear that you're having to go through the waiting period also.  MD Anderson said they want to do another scan in 8 weeks to see what my nodules have done.  Apparently I have multiple nodules in both lungs.  I didn't realize this before, but some were there in my CT scan last November, and they have doubled in size.  Fingers crossed and prayers that it is nothing for both of us. 

When you had the recurrence in 2011, at what point did they discover the nodules were malignant?  Do you know how big they have to be before they can be biopsied?  And what was your treatment plan for the recurrence? 

Hi Carrie,

In 2011, the nodule had been enlarging for about 9 months until it was large enough and concerning enough to be biopsied.  The biopsy did not comeback with good news.  I was given 7-8 months at that point.  I don't know the size at which they can be biopsied, but I asked my oncologist about the current one and she said it's currently too small to do a biopsy.  It's now 5 mm.  I hope that's useful to you.  

My treatment plan for the recurrence was initially going to be Folfox with a possible clinical trial added on.  I was displeased that surgery and radiation weren't possible, so I went to Hopkins for a second opinion.  They confirmed that my oncologist's plan was the best one available, so that's what I was going to do.  Then my HER2/NEU test came back and I was HER+.  Herceptin had just been approved for metastatic EC so it was added to the Folfox instead of joining a clinical trial.  Turned out that I had a tremendous response to the Folfox/Herceptin combo and I'm still here.  Based on the 7-8 months I was given, I am coming up on the fifth anniversary of my scheduled death next week.  I'm still getting the Herceptin every week, but the Folfox stopped 5 years ago.  

Sounds like you guys are on top of your stuff.  MD Anderson is a top of the line cancer center, so you're doing right there.  Getting your scans done 8 weeks apart is staying right on top of things.  If anything needs to be done, you are well positioned to move quickly.

I know the anxiety and uncertainty that you're dealing with.  My wife is not dealing with it well (although she was furious with me yesterday when I characterized her as, "losing her mind").  I'm a bit nervous myself even though I've been pretty sick since birth and am quite accustomed to dealing with unpleasant medical news.

Hope you get nothing as your news,

Ed