Day +3790: To the left to the right, round and round and out of sight…

“… Up and down, side to side searching all over far and wide,
I was sitting at the station waiting for my train
to a new destination to relax the strain,
Call it a holiday, call it a break,
it’s just something to save me for savior’s sake,
And I’m not looking for trouble, I’m not not looking for fame,
I’m not looking for anything,
maybe a little bit of personal gain…”

4/16/2021: Greetings all, and happy spring. I managed to stay medically boring for an entire week. Then I had my annual CT and MRI scans on April 9, routine monitoring of my lungs, kidneys, and pancreas due to prior findings believed to be benign. The good news is that all of these still look ok. However, there’s a new incidental finding:

CT – Interval appearance of suspicious sclerosis within the bodies of T9 and T10, possible metastases.

MRI – Interval appearance of vague sclerosis within the bodies of T10 and T9. T9 lesion has central lucency. Interval appearance of multiple enhancing high T2 signal lesions in vertebral bodies, suspicious for metastasis, similar to CT 4/9/2021. Calcific tendinitis involving the left rotator cuff versus small loose body, measuring 7 mm.

What does this mean? We don’t know at this point. Primary care resident called me with results same day and said they were sending messages to my transplant doctor (Jones) and my otolaryngologist (Gourin); I was instructed to contact them if I didn’t hear anything this week.

I saw my local hematologist Wednesday for my monthly appointment and blood work. Everything looks good in that regard. Because he’s affiliated with University of Maryland rather than Hopkins, he couldn’t access the actual CT and MRI images, only the reports that I quoted above which didn’t offer much info to help with differential diagnosis. He said they do see lots of referrals due to incidental findings that turn out to be benign. We discussed the possibility of PET scan, biopsy, or repeated imaging and decided to try to get copies of imaging and wait to see what Hopkins docs recommend. I finally heard from both last night and this afternoon. Neither had definitive answers or recommendations.

Jones: “I assume you are completely asymptomatic. MDS could cause sclerosis, your prior head and neck cancer much less likely. Running down unexpected findings on scan is always tricky. With involvement of 2 vertebrae, if it is cancer, it has already spread. Most likely it is nothing or old MDS, however. My druthers would be to repeat scan in 3-4 months if you are asymptomatic. Alternatively, you would need a biopsy of that area. There is no right or wrong here.”

Gourin: “I am surprised. At this date you are considered cured of the oropharyngeal cancer, so I would not expect this to be related to that.
Lets do the MRI of the neck.
The next step would be to biopsy those lesions. Can you touch base with your hematologist/oncologist as well for their thoughts? I will ask the neuroradiologists to set up biopsy.”

I’m not sure why but I don’t feel very worried. I’m tired of something new popping up every time I think an issue is resolved. I’m inclined to get the head/neck MRI and repeat the spine imaging in a few weeks after I see hematologist again on May 6. I feel nervous about any spinal procedure and would prefer an invasive biopsy only if absolutely necessary. Michael, on the other hand, would like me to go with the biopsy ASAP. Based on my history as an outlier, I feel like I’m running in circles and honestly don’t know what to do. I think I’ll sleep on it this weekend and try to decide which way to go. I’ll keep you posted when I know more.

xoxo,
Karen

Update: Just got an email from my hematologist after I forwarded him my Hopkins opinions: “I’ve asked my office to get your scans. Once we have them will review them in our conference. I’m out of town next week be back the following week.”

2 Comments:

  1. I’m here if you need me

  2. I’m thinking of you. Hugs

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