5-year ACC parotid survivor ---

KathyBr

Well, I've almost made it to my 5-year post op 'all-clear' status....question is....I had NO treatments after surgery, only 1 PET scan.....should my ENT have exercised more options of CT/PET/MRI to finalize my '5-year, all clear' status?

 

lana101

Hello

I am new to this forum and would like to share some information and possible see if anyone has similar or what they decided to do. I hope everyone is doing well and I pray for us all! I would like to be involved and choose what surgery to have and not allow some surgeon to do whatever and cause defects. I having to go to another head and neck surgeon at Md Anderson so I have more options.
I already have a poor quality of life due to multiple autoimmune, so I suffer daily with these and infections. :( Most oncologist or surgeons should offer more than one treatment type of surgery anyway. I have read there are several different ways to prevent Frey or paralysis with different types of flaps etc

For example: I already have preexisting facial palsy but not so noticeable now and use botox to create symmetry. I found a little pain around left ear back in March 20th 2024 and then proceeded to my internal medicine. I have a radiology background as tech so I knew what scans to get so I asked my doctor for a CT scan/ contrast and MRIw/ contrast of parotid. I knew the MRI would be better and it was. CT scan did not pick it up because it is small.

MRI is great at delineating tumor margins, particularly in soft tissues, making it valuable for assessing tumor extent and guiding treatment planning. Its high contrast and spatial resolution allow for better visualization of tumor edges compared to CT scans. So then I had ultrasound guided biopsy which said it may be adenoid cystic but still sort of inconclusive. Said to proceed with exceptional biopsy; Even MRI said similar thing stating it had characteristics of malignancy but indicated that it still could be mixed. It did not state that it was deep lobe. Also, it has not spread to my lymph nodes so far which is good. It appears to be a stage 1 based on size. I did another MRI (this 2nd one without gadolinium) . Since not adding this contrast it will not outlined the tumor margins as well probably but I did get a 3 Tesla which has a very strong magnet. This second MRI did show it little bigger but I dont think it is accurate because ACC is very slow growing tumor from what my oncologist told us. So who knows!! But once it gets into the nerves it can move fast. ugh So far it has not spread….

(too much back to back with this causes toxicity) gadolinium now has a double black box warning on it! there is gadolinium toxicity. com forum where thousands of people are suffering from the toxicity of this contrast)

Also, my pet scan did not even light up hardly like oncologist head and neck surgeon suspected. So my spouse and are worried that I will get the wrong surgery such as total parotidectomy when a superficial would be enough. This would reduce nerve related issues. Superficial parotidectomy is not as invasion as total parotidectomy and has much less risk for Frey syndrome and facial paralysis.

They said since I have already residual nerve damage from years ago that I am very high risk to develop permanent paralysis. This not just affects the look of smile but causes eating and swallowing issues as well as the eye. It is quite horrifying and these surgeons are not telling people all the consequences with this surgeory or even with permanent damage from radiotherapy unless of course your insurance allows proton therapy which has less side effects.

We are getting a second opinion but have to travel because hard to find head and neck surgeon that has done several of these. I was told to be very careful who you choose. There is a Extracapsular surgery for removing benign tumor of parotid but if it is for sure mixed part acc and part benign like they think then this surgery is not advisable due to tumor seeding. (spreading). I have heard the Frey syndrome can possibley preventable if they perform SMAS or Sternocleamastoid muscle flap over the parotid area. But you have to find a skilled surgeon for success. Has anyone had these flaps to prevent Frey. We have research all this about these parotid tumors and noticed some of the head and neck surgeons or ENT dont even bring it up. Very sad. So just wondering if anyone has these flaps with success and/or if they already had facial paralysis mild prior due to other reasons...in past that may be affected with this new parotidectomy. I told the first surgeon I was not going to have a total parotidectomy based on just the ultrasound guided because it is not always absolute. Most recommend multiple scans, and test, exceptional biopsy frozen is most accurate. So all this is very scary. I dont want a surgeon saying I need total parotidectomy when it is only a stage 1 and has not spread to my neck. This makes no sense and it seems just because they it looks or has possible characteristics of ACC they just take the whole thing out and you get hollow indention. I feel they are insensitive. Any thoughts would be greatly appreciated.