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Scanxiety? Not me?

Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

This is really odd. I normally do not have scanxiety, but right now it is a bit different. I usually like the scans to give me informational updates on where things stand currently. I don't stress over them.

But, I'm in a different place again. I've got a lot of other stresses going on with splitting our property (to sell some of it to pay off our bills), trying to keep my business going, and a few other issues, while overall physically I am deteriorating lately. If I felt better and/or didn't have the other stresses right now, maybe I wouldn't have as much scanxiety.

My CEA is rising and it seems while the last scan results were "partial, but incomplete response to chemo" that now the chemo is losing its effectiveness. Whenever I've had a rise, I've had progression and growth. My last scan was at the time when my CEA hit its lowest since last March. It has been slowly rising since the end of July. My last scan showed 4 separate lymph nodes (maybe a 5th, but it was right on top of another node if there is a 5th). My worry is not that the existing ones have grown again - if they have, that is ok, my plan will still work.

My worry is that I could have progression and have more nodes or other tumors popping up. That would ruin my plan. I'm pushing for SBRT for those nodes. In general no one will address more than 5 separate areas with SBRT. If I can't have that done, I don't have many options. I could try FOLFOX again, because it did get me to the point that we thought I was cancer free the first time. But it was complete hell for me. I'm allergic to oxy and it causes a rare syndrome for me. I have a lot of difficulty with 5-FU, but unlike Irinotecan, Oxaliplatin is normally not given alone, because it is not proven to be effective alone. I can't imagine going back on both of those drugs. And I really can't imagine going on them right now. I am very wiped out by the last year of continuous chemo. I've been on chemo for two years now - except for 4 months off summer 2010. I'm slowly deteriorating from the chemo and need a break. I could choose no chemo, and who knows how long I'd have until enough growth or spread that it starts affecting my quality of life. I feel healthy when I am off chemo. But I know eventually that won't be the case. I could look for a clinical trial, but again, I really need a break from chemo right now.

So, I am nervous about my scan. I am scared and worried that it could give results that take away my dream of SBRT. My usual mind set of "it will be what it will be" isn't helping as much as usual. My thoughts run away on me...

The good news is that if my scan results don't mess things up, I have things moving the right direction. I have a PET/CT on Monday, and an appointment with my oncologist on Wednesday (before he leaves on vacation). Rather than letting anything wait, I called and got an appointment with the radiologist for later on Wednesday. I know my medical oncologist wants to retain control here - he ordered the scan and wants to consult with the radiologist, but he didn't seem as aggressive as I need him to be about this. Sure - I'll meet with him, but I want to talk directly with the radiology oncologist. I want their opinion. It really seems that each specialty pushes their own, and isn't quite as supportive or knowledgable about the other options. This is all part of the same group - just a different location that is actually a cancer center with radiology. My oncologist never even mentioned they existed until I pressed him about wanting to pursue this.

I was happy when I called the Maplewood Cancer Center and the scheduler was concerned if I would have time for a long appointment. She said she was blocking time for a planning scan if needed at the end of my longer initial consult, and told me not to eat anything before the appointment. I told her that whatever time they need from me - they got it! This is my first priority right now, and everything else can be adjusted.

I've gone from thinking my only option was chemo till it stopped working, to thinking I would have to travel out of state for SBRT, to being able to pursue it right here - they even have the new Trilogy equipment! Now if my scan just has nothing new pop up, I'm good to go. Growth in the current nodes is ok - spread is not.

pepebcn's picture
Posts: 6352
Joined: Aug 2010

there are things that don't understand ,as per I know there is not progression on your cancer just a partial response what in my opinion is good!
Also I remember last time we have spoken your CAE was rising but just by 0. something and was still in normal parameters if still the same I'm sure no surprises will be find on next scan! I will be praying for that .
BtW what's SBRT?.
Hugs my friend good luck and cheer up!

tootsie1's picture
Posts: 5065
Joined: Feb 2008


You inspire me with your spunk!'


marqimark's picture
Posts: 242
Joined: Jun 2011

My nothing new come up so you can do the SBRT.

I wouldn't wish folfox on my enemies. It kicked my butt and you had it worse. May you never have to that again.


Posts: 428
Joined: Jul 2011

Sending positive energy your way. Lisa

pluckey's picture
Posts: 484
Joined: Jul 2009

Sending you some anti-scanxiety hugs!
You've worked so hard and keep fighting this with everything you've got...
I'm praying for best outcome


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