PET Scan Frustration

pmsakom

Hi Everyone,

 

I've only posted a few times.  My husband was dx with BOT HPV+ SCC, Stage 3 in September 2017.  Finished 35 rads and 6 cisplatin on 4 Dec.  PET was 7 Mar.  Met with Medical oncologist on 8 Mar and she said it all looks good.  However, they just put the CT results in our online medical records and there is something no one mentioned.  It says there is a 50% right carotid stenosis (blockage) and that it has increased in size since the last CT.  Is it just me or does this sound like something they should have mentioned? Has anyone else had this come up on their post treatment PET/CT?  What was your doctor's recommendation?

 

Also, in the original PET/CT there was a thyroid nodule that they put off doing anything with until after treatment for the BOT cancer.  Husband had an ultrasound on Friday and it took 6 attempts to get cells for the biopsy because it had calcified.  Now we just wait for the biopsy results.  UGH!

 

The good news is that my husband has all his taste buds!  Yay.  Bad news, no saliva.  I keep telling him that there are lots of folks on here who don't have taste buds back and would be thrilled to taste food.  I know it is hard for him to appreciate such a small thing that most of us take for granted.  I think he is still trying to wrap his head around the no saliva part.  Although our rad oncologist told him it was most likely going to happen - given the size of his tumor - he didn't believe her. 

 

Okay, more good news from the PET/CT was that the lymph nodes which lit up on the original PET are now gone.  Yay!

 

Finally, and I know I am being picky, this is copied directly from the CT results "Post radiation changes of the oropharynx is noted with near-total resolution of large mass at the base of the tongue obliterating the right parapharyngeal fat space and minimal asymmetry remaining." What do they mean "near-total?"  We're looking for TOTAL resolution, right?  Again, maybe I'm just being picky...

 

Thanks for any and all wisdom, information and advice!

 

Melissa

Curlyn

Hi Melissa, here are some

Hi Melissa, here are some thoughts only- carotid stenosis: if present prior to treatment might not have increased enough for them to worry about it at the moment. You have carotids on each side, each branching into ext and internal, so depends where stenosis is, I guess. They removed my ext carotid and both jugulars on one side and I have been fine with the one internal carotid that side. Just ask your surgeon next visit so you know that he saw the report and can discuss c you. Sounds like if the thyroid nodule is calcified it can't hurt you, but isn't cancerous until science (test results) says it is- hope you get the results. Lastly, I tried to read meaning into every word and phrase of my reports, too, but in the end yours sounds like there is nearly total resolution of your husband's bot mass. I had no palpable masses that required radiation (tho I did have radiation) but others have reported that it takes awhile to shrink. It has only been 3 months since your husband finished treatment so early days yet. Best to ask your doc. Best wishes for continued recovery. Others will no doubt be along soon to lend experience.

CivilMatt

is it frustration like a zipper stuck, because I had one Sunday

Pmsakom,

Maybe, your doctor believes that the carotid blockage is serious enough to put in report, but not serious enough to mention (that may be strike one in the bedside manor).  I did not have this problem during post treatment visits.  I have not read my file, so there is a possibility that there is more to know.  I would need to send in a file auditor to determine if I want “just the facts” or remain quiet.

Thyroid is calcified, or as Spock said to Jim Kirk, “ship out of danger”.  I would think your ship is going to be ok.

And what is not to like, with taste buds working.  My taste buds were held hostage for 7 months, until my stomach, kidneys, liver and spleen (can you believe it my spleen) put together a ransom for the release of my taste buds.  The poor guys were pretty much tortured, but they are back at work.

I think the near-total is probably ok and the oropharynx and the right parapharyngeal fat space appear to be heading to a final position in the non-cancer position.

I do not think you are picky, but I have never eaten with you at a restaurant or bought a car with you.  I just don’t know if you are picky, but your cancer knowledge being picky is spot on.

I have rambled on to where I think I need a MRI to see if I have any horse sense.

Bye,

Matt

pmsakom

Test Results

We heard back on the Ultrasound/biopsy of my husband’s thyroid.  It is benign.  Yay.  Such a relief.

 

We also got notice of a PET Scan scheduled for June 4 and an appointment with the Radiation Oncologist. Turns our ‘near resolution‘ means they aren’t quite sure it is all gone so they want to do another PET.  We are just going to move forward and believe it was just some inflammation.  No sense in worrying about it.  

Thank you Matt and Curlyn!

melissa