Hi guys,
So, my mom had a follow up CT today. She is nearly 3.5 years out after a wedge resection surgery for a 1cm nodule in the R middle lobe. She also had concurrent radiation/chemo shortly after surgery as well. She has been feeling fantastic and has had NED on every scan thus far.
Then today happened. There was a small spot on her right lower lobe (new lobe, same side). The onc showed some concern. He thinks it could be scar tissue, but said it looked a bit "more nodular" than the previous PET/CT in Jan. Her scans are now done without contrast due to decreased kidney fxn (hx of diabetes and the chemo def. didn't help the kidneys), so her onc feels it is best leaving the contrast out right now. He wants to do a repeat PET/CT in October now and of course, our anxiety levels are insanely high.
Originally, she had a 1cm nodule in the R lung which barely lit up on PET and nodes were clear per PET (and pathology at the hospital she had surgery at). I had a strange gut feeling so I had the lymph nodes sent to MD ANderson for a second pathology read. MD Anderson found adenocarcinoma in one of the lymph nodes sent and staging went from 1a to 3b. We switched facilities and she started the fun rounds of chemo/radiation.
I'm not even sure she would have scarring so low in her lung, because her radiation was (I believe) more limited to the mediastinal nodes and the R middle lobe. Plus, it has been a LONG time now since radiation ended....over 2 years. We are very fearful that the big C is rearing its ugly head again.
Honest thoughts? Over what time span does adenocarcinoma typically grow untreated? The spot is small and again, I'm worried that the PET in October really won't be very diagnostic especially considering her initial PET showed negative nodes despite the fact at least one was microscopically positive. UGH. This is so stressful. She has been doing so darn well. Thank you so much for your time and expertise.
Reply # - August 18, 2014, 08:55 PM
Reply To: Is it back or is it scarring or ??? Uncertainty
If it has been 3.5 years, it's not likely it is a recurrence of the prior cancer. If it is, it is a VERY indolent process. Adenocarcinoma can move very quickly or can take a year or even 2-3 years to double. I don't know whether it might be cancer or not, but if the concern is that it may not change enough to see if it's growing after 3 months, it would be such an indolent process that it can be treated effectively, if it even needs to be treated at all.
I'm sorry we can't say if it's cancer, but it sounds like it's being managed appropriately by being checked attentively.
Good luck.
-Dr. West
Reply # - August 18, 2014, 09:05 PM
Reply To: Is it back or is it scarring or ??? Uncertainty
Hi Teresa,
The general rule is that the farther out from surgery and adjuvant chemo/rads, the less likely it is that the scan finding represents cancer, especially since it seems that this spot showed up on the previous scan. Your doctor said it looked more "nodular" but you didn't say that he reported it as significantly larger. If it is not growing or growing extremely slowly, not only is it less likely to be cancer but even if it is it may be such a slow process that it either doesn't need treatment or will respond well to treatment.
And yes, uncertainty does suck. I have no magic formula for dealing with it, although there is a GRACE post on the subject of "scanxiety" here: http://cancergrace.org/coping-with-cancer/2008/05/27/scanxiety/
Good luck with finding a way to cope and for good scan results!
JimC
Forum moderator
Reply # - August 18, 2014, 11:22 PM
Reply To: Is it back or is it scarring or ??? Uncertainty
Thank you both so much for your extremely prompt responses and helpful advice. I was a little caught off guard during my mom's dr visit so I can't recall exactly what was said about size (although I think he said it was fairly stable). I know we need to be patient and realize that right now nothing more can be done.
I know I need to get off the slippery slope of "what ifs" and predicting the future. As we all know (probably too well), The uncertainty is so unnerving. I have to be grateful for the fact she feels fine right now. (we sadly lost my father to a nsclc 4+ year battle in 2007. He had never reached a point where there weren't any symptoms during his battle so I know just how lucky we are to be experiencing treatment-free and symptom-free time with my mom.). It's just hard and things were going so well...and my husband and I are expecting a baby boy in December (our first child) and this potentially devastating news just broke our hearts.
Cancergrace is such a wonderful resource and I share it with anyone and everyone I meet that may find it helpful. Please know the comfort you all provide patients and their loved ones is beyond measurable. I hate cancer so much and would give anything to go back in time and prevent my parents from ever smoking. Someday, we will have a cure. Until then, please please keep up the wonderful work. It does not go unappreciated. Thank you again.