Scan and Radiologist Anxiety

shoppergal said:

Lisa
I can understand you're wanting to hear the letters NED! I thought I would be able to say that also. I had my first pet/ct scan in Feb 2008 right after I started chemo (Folfox/oxi) and thry detected some nodes near my left kidney, although my colon, liver, and kidneys were clear. My onc presented the results to a surgeon to see if I should have a biopsy. but he thought it was to dangerous because of where it was. They had a wait and see attitude since I was first starting chemo. When I took my second scan 2 months after I finished my chemo, the nodes were no longer detected, which was great news for me. Now 2 wks ago I took another pet/ct scan and guess what they saw again? Thats right the nodes are back, which was so discouraging for me. I didn't even think about them when I took my scan because I didn't think they would be back. Once again my onc presented this to the surgeon to see if we can do a biopsy, because were not even sure if it's definately cancer. It's still too dangerous, so it can't be treated since we don't know what it is. The only thing to do is wait and see, which I HATE!! I now have to wait 3 months and I'll have a cat scan with contrast to see if anything changed. If it gets bigger or more grow than I might be able to have it biopsied to make sure of what it is. If it is cancer I will most likely be on Xeloda. If nothing changes then we wait another 3 months and scan again. This waiting and not knowing what it is or if it's going to spread into more nodes,my liver or kidneys is a horrible waiting game! But there's nothing more I can really do and being alive is still a wonderful thing! Take care, I'll be thinking of you.

Question for shoppergal
Did you NOT have scans before surgery for colon cancer?

I'll remember you in prayer, too.

Diane

CherylHutch said:

Thanks everyone!
What a treat to sign on tonight and find so many supportive posts! I managed to keep myself very busy today. Bridget and I went to the theatre office and it just so happens we are really busy right now. My friend, Jill, and I were working away and the next thing we knew, it was 7pm!! LOL! Ok, so the plan was that we would leave the office around 4:30pm or so... but we both were being very productive

Anywho... tomorrow morning I'll have an easy morning... I may even treat myself to breakfast out. But, knowing me, but the time the morning rolls around, I'll be too lazy to get ready early and get out for breakfast... so I'll probably just have one here and putter around on the computer

I'll be leaving my apartment around 1pm... then spending the afternoon at the hospital (well, first I have to get there and this particular hospital is about an hour away). Once I am through at the hospital, I'm meeting a friend and the two of us are going to do dinner and a movie night... looks like we will be seeing the new Julia Roberts "Duplicity" thriller

Soooo, I won't be getting home until probably around 11pm... but assuming I'm not exhausted, I will check in here no matter how late it is

Huggggggs,

Cheryl

you betcha!
Cheryl,

I will definitely be sending energy your way in the form of a prayer that you will not be too anxious awaiting your Dr. appt and getting your results, and that your results will be good. I, obviously, can very well relate to that anxiety, having just experienced this!

I know you will let us know how it goes, but take your time if you need it (even though you're normally always so quick to post!)

You take care and I'll be awaiting your next post.

Hugs,
Lisa

shoppergal said:

Lisa
I can understand you're wanting to hear the letters NED! I thought I would be able to say that also. I had my first pet/ct scan in Feb 2008 right after I started chemo (Folfox/oxi) and thry detected some nodes near my left kidney, although my colon, liver, and kidneys were clear. My onc presented the results to a surgeon to see if I should have a biopsy. but he thought it was to dangerous because of where it was. They had a wait and see attitude since I was first starting chemo. When I took my second scan 2 months after I finished my chemo, the nodes were no longer detected, which was great news for me. Now 2 wks ago I took another pet/ct scan and guess what they saw again? Thats right the nodes are back, which was so discouraging for me. I didn't even think about them when I took my scan because I didn't think they would be back. Once again my onc presented this to the surgeon to see if we can do a biopsy, because were not even sure if it's definately cancer. It's still too dangerous, so it can't be treated since we don't know what it is. The only thing to do is wait and see, which I HATE!! I now have to wait 3 months and I'll have a cat scan with contrast to see if anything changed. If it gets bigger or more grow than I might be able to have it biopsied to make sure of what it is. If it is cancer I will most likely be on Xeloda. If nothing changes then we wait another 3 months and scan again. This waiting and not knowing what it is or if it's going to spread into more nodes,my liver or kidneys is a horrible waiting game! But there's nothing more I can really do and being alive is still a wonderful thing! Take care, I'll be thinking of you.

Shoppergal
Hi Shoppergal,

I'm sorry to hear you're dealing with the lousy "wait and see" game that is definitely no fun. I'm curious that you mentioned that you had your first pet/ct scan after you started chemo. Did you have just a regular CT or any kind of scan at all right after diagnosis before your surgery, or no scan at all then? It's considered standard practice and routine, even if nothing is suspected to have spread, to do a CT scan right away to either determine yes or no if anything has spread or if there's anything suspicious anywhere else in the body. I believe it would be considered negligent if they really didn't do any kind of scan on you until after you had surgery and started chemo. If that's the case, I guess it's too late to do anything about now, but I'd question your doctor about it and maybe even consider a different oncologist if that's how he/she practices. I don't want to sound too overreactive, but it really was a huge oversight if they didn't scan you prior to surgery. I had my CT scan within two weeks of first being diagnosed (which we thought I was stage 2 & no lymph nodes were found on their ultrasound sigmoidoscopy, so they didn't suspect anything had spread- it was considered "just routine". All doctors were very surprised to discover on the CT that it had, indeed, spread to my liver and lungs. Because no lymph nodes showed up initially on the scope sigmoidoscopy, they would have not known at all it was in the liver and lungs if they hadn't chosen to do the CT scan that quickly. I found out that colon and rectal cancer can sometimes spread directly through the bloodstream, bypassing the lymph nodes. It's definitely more rare, but can happen, and did happen in my case.

I will be thinking of you and including you in my prayers for the anxiety to lessen and for things to stay small or even go away.

Take care-