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Waiting for CTs and results!


Susan Cornett

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I finished my chemo last Friday and got to ring the bell!  But now the hardest part starts for me - waiting for the first post-treatment CT scheduled for July 1st.  I'm an anxious person on a good day, so I would love to hear how any of you survive the period between scans. My wonderful oncologist said that if the CT is clear, I won't have to have another one for 6 months.  

 

 

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  • 4 weeks later...

Hi Susan,

 

I am sorry for the delay in response. I am happy to hear that you finished chemo last month! I hope that you get great scans on July 1. Please keep us posted on the results! I hope that you've been able to relax and do some activities that you love while you're waiting for your next scan. What are some activities that you enjoy?

 

Regards,

 

Lauren

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Susan,

 

I missed your post.  Sorry, my wife and I were on vacation.  The symptom you are experiencing is called Scanziety (some spell it with an "x") but regardless of spelling, all lung cancer patients in particular and to some degree all cancer patients experience this symptom.

 

I wish I had a magic potion I could suggest that would ease your scanziety but I myself am suffering because I am scheduled for a CT scan in early July prior to my mid July oncology consultation. And, I'm a 12 year survivor.  So I'm deep into scanziety!

 

There is no cure, that much I can attest to.  My oncology team is sensitive to my symptoms and my doctor's nurse unofficially emails me the results.  But they've been for negative scans.  In my early treatment years, when scans vacillated from positive to negative, no one but my oncologist would reveal results and these were delivered in person during the consultation.  That is a good thing, by the way, because along with a discussion of results comes a plan to deal with what the scan suggests.  In early treatment, even a NED (no evidence of disease) scan has a treatment indicator - a schedule for a follow-up. Moreover, your doctor will need to repeat regular blood work for some time to ensure your chemo did not adversely affect organ function.  

 

If you discover a cure for scanziety, be sure to broadcast it....

 

Stay the course.

 

Tom

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Thank you LaurenH and Tom for your replies.  In the midst of waiting for my first CT, I got to have a bonus biopsy on my thyroid (get those results tomorrow).  I'm trying to stay focused on how far I've come and how many incredible survivor stories I read.  I'm awestruck by the sheer number of people who have been victorious over lung cancer, especially the Stage IV folks.  

 

Tom, I hope you enjoyed a wonderful vacation.  LaurenH - I've been enjoying our new swimming pool as a way to relax.  

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Susan,

 

We had a wonderful time.  In fact, on mentioning your scanziety to my wife, she asked if you scheduled a vacation.  She reminded we often would go somewhere between the scan and results revealed or while waiting for a scan.  

 

Let us know about the results.  

 

Stay the course.

 

Tom

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I think we all deal with our anxiety in different ways. I don't stress easily so I really don't give it much thought. I have a strong faith and that helps. Staying busy and focusing on other things can be helpful. Stress is not good if you don't already take an anti anxiety medication you may want to discuss that with your doctor.

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Got my CT results - and a high five from my oncologist - yesterday.  There are "no areas of concern" in my first post-chemo CT.  He'll scan me every 3-4 months for the next two years and then a little less frequently after that.  I still have the small issue with my thyroid to deal with but both the ENT and the oncologist said it is highly unlikely that, if it is cancer, that it is metastatic lung cancer.

 

Reading all of the survivor stories on this site have really buoyed my spirits.  Thank you for your kind words and support!

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Susan,

 

Wonderful, marvelous, and superb news.  Ensure that thyroid issue is nailed down after an extensive and well deserved celebration!

 

Stay the course.

 

Tom

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  • 3 weeks later...

So it turns out the thyroid, much like my lung, has betrayed me!  I had a total thyroidectomy last week and got those biopsy results yesterday.  One side of my thyroid had papillary carcinoma which is quite common but the other side of the thyroid had a nodule made up of the adenocarcinoma cells that were in my lung.  Those AC cells do not play nice.  The surgeon feels that they were able to get all of it and there was NO lymph node involvement so that is very good news.  We discuss treatment options tomorrow.  I'm not going to lie - I'm tired and scared - but I am gearing up for another fight.  Thank you all for reading my posts and responding.  I have an incredible support system of family and friends, but you all know the fear because you've lived it.  

Bless you!

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Thanks, Katie.  I was a little surprised it was thyroid cancer.  First, we don't have a good thyroid anywhere in the family so I was hopeful it was just a nodule and second, less than 5% of nodules are cancerous.  Both my oncologist and my ENT said it was extremely rare for the AC cells to be in the thyroid, so I'm hitting that statistical sample as well.  I may need to buy some lotto tickets given those odds.

The actual surgery wasn't bad - had it last Wednesday and was back at work yesterday.  Other than an allergic reaction to the tape and glue, I feel good. I'll go tomorrow to discuss radioactive iodine therapy and then will meet with oncologist to see if he wants to add anything to the treatments.  

One day at a time.

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