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Knowledge, discussion, & treatment (RAI)

tenzil
Posts: 4
Joined: Sep 2010

It's been 4 years since I completed chemo for testicular cancer (nonseminoma).  I had been getting CT scans every 6 months since then.  Nothing like exposing yourself to the cancer risk of radiation to find...cancer.

The scans had been clean...and I sort of learned to deal with whatever they'd try not to make a big deal out of.  It seemed like there'd be a blip, and then 6 months later, the next CT would be ok.

My oncologist thought my neck lymph nodes were enlarged so he scheduled me for an ultrasound.  Try not to worry.  Call the office to make sure they got the results.  A week later, I did, and they said they did.

The oncologist staff had changed slightly over the years.  The medical assistant who took care of me before was gone, and the new one was stressed.  One of my CT scans was sched at the wrong hospital. 

3 months later, someone from the oncologist's main office called me on a Sat.  My wife & child were napping.  I think I stopped listening after hearing something about a 'needle biopsy.'

"No.  No one scheduled me for a biopsy.  My ultrasound was over 3 months ago."

The caller told me to call the other office first thing Mon.

I called, and the MA was combative at first.  

"I have no idea what you're talking about.  Who called you?"

Hung up.  Within 30 minutes, the MA called and gave my biopsy appointment.  No apology.

Well, a different cancer came knocking.   Papillary thyroid carcenoma.  It was small < 1 cm.  Common, less aggressive.  The odds are good.  It was really amazing that my oncologist felt something, the ultrasound detected something, and the biopsy confirmed it.

My thyroid was removed a month later.  I liked my surgeon.  Confidence goes a long way in reassuring you.  

I had a follow up with my oncologist.  The pathology report confirmed that it had moved to 1 lymph node.  I was set to meet my endocrinologist.

Dr. Endo (not his real name) was great.  Asked questions, explained what the plan was.  My consult with nuclear medicine is next week, but I get some notes from them in an e-mail.  

So I read the diet plan (bleh) and the protocols for RAI.  Yeah...I had plans to go to a hotel, but that's a no no.  So I'm too dangerous for a hotel, but I can go home...and risk my loved ones' health.

I look at the surgeon's report.  I had asked my oncologist for the pathology report, but the MA could only find that one.  One of the most frustrating things is getting my own medical info.  Only recently have blood results been available online.

The surgeon's findings were a fibrosed, enlarged thyroid with significant desmoplastic reaction involving bilateral thyroid lobes.  Nodularity within the left lob.  No ominous central neck lymphatic tissue.  

I know my Dr. Endo said my thyroid was abnormal, but again, the cancer was small.  I e-mailed my concerns, and he said with 1 lymph node, there's a possibility that other lymph nodes or microscopic cancer cells are out there.

Just not too sure that the risks are worth it.  I needed to vent this out.  I will try to get a 2nd opinion.

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