scans radio therapy+moods

My ACC was removed from my face 8 years ago. At that time it was noted I had a small tumour in my neck, which is still there. I had been feeling breathless 2 years ago and I had a small tumour in my lung which was removed. My clinician, A Head and Neck professor advised at that time that the lung tumour did not require excision at that time. My husband was terminally ill, but feeling well at that time and I went ahead with the surgery in case the situation changed when my husband was in need of more support. My clinician is of the opinion that routine 6 monthly scanning raises anxiety levels unnecessarily due to the sensitivity of the scans. I can understand that a scan could show a possible lesion in the heart but don’t understand that they would know it was a myxoma  which is not related to ACC as far as I’m aware. I understand most people with ACC who are supervised by an Oncologist Do have regular 6 monthly scans which can often highlight new tumour growth. I think it would not be wise to ignore your clinician’s advice but it may be sensible to ask for more information that you could use to give you a more informed view of your situation. I am really glad you are feeling so positive despite your diagnosis and would wish you well. I’d just add if you continue to have doubts if you request a second opinion your consultant would be able to arrange that for you.

I have not heard of anyone with acc having myxoma in the heart. I think it is unrelated.

I have had acc for 11 years and have regular scans every 6 months which are now showing more metastases,

Now I am on a targeted drug ATRA which targets MYB which most acc patients have. I now have 3 monthly scans to monitor the effects of this new drug 

Ruth 

acc R submandibular gland 2009 

Thanks, my oncologist said it was not related to my acc. The scan i had when they picked it up was for enlarged nodes in my lungs which were stable. I am now waiting for an ultrasound on my heart to confirm or hopefully not the diagnosis. I'm pretty active walking ,biking and such and never had any symptoms so it is hard to believe. Trying to put it on the back burner but it's not so easy. Hopefully i will have news of an appointment today.

PS hope the targeted drug goes well for you. Bit too wrapped up in my own thoughts there. Forget others are doing their best to get through their own struggles.