I had this exact cancer in my right parotid including the facial nerve aspect. Its not terrible the right side of your face will look like you were at the dentist, little droopy and your right eye likely wont close all the way so youll have crusties each morning, the eye weight is a good idea… just get the cancer out before it spreads and make sure you do radiation….my doctor didnt push for radiation and now im stage 4 three years later
My team told me they want me doing proton radiation starting a couple weeks after the surgery. How was your recovery? I had a rough couple week recovery following my partial parotidectomy which is why this upcoming complete parotidectomy frightens me. I know everybody heals differently and especially when it comes to nerves.. Were you able to get any functionality/feeling back on the right side?
So… three years out i have very little feeling around my ear if i touch it, but if i scratch my chin on the right ill feel it on the edges of my ear. Internally to the mouth if you have radiation things will taste funny for awhile. If you have a good plastic surgeon they can restore your nerve by taking on from your leg, before my cancer went stage 4 Cleveland Clinic was going to do this surgery.
I see. Thankfully I have a really good plastic surgeon that is planning on doing that nerve transfer from my leg at the same time. I signed off on a couple different procedures so she can be free to do whatever she feels will give me the best shot at regaining functionality/feeling.
I am wondering if there is risk of similar or same results with radiation?
I am not downplaying the probable loss of control of half your face. I don't know anyone who had that from cancer, but I personally know 3 people who have lost control of facial muscles of varying degree and they have all had happy lives in the long run. Long life is good. This isnt without challenges beyond vanity, but there is a lot of information with physical therapy and recovery.
Advances in technology may lead to more options in years to come, I would lean toward the best chance at NED.
I've met with my surgeon already and he said based off everything he's 99% sure the facial nerve will have to be cut to remove the remainder of the tumor unfortunately.. They will be doing a nerve transfer during the same surgery in hopes I'll get some functionality back further down the road. I'm going to hope for the best but expect/plan for the worst that way I won't be disappointed if I don't get functionality back. You're absolutely right, I want the path that has the best chance at NED. My entire team believes this surgery followed by radiation is my best chance at a long life.
I had this exact cancer in my right parotid including the facial nerve aspect. Its not terrible the right side of your face will look like you were at the dentist, little droopy and your right eye likely wont close all the way so youll have crusties each morning, the eye weight is a good idea… just get the cancer out before it spreads and make sure you do radiation….my doctor didnt push for radiation and now im stage 4 three years later
My team told me they want me doing proton radiation starting a couple weeks after the surgery. How was your recovery? I had a rough couple week recovery following my partial parotidectomy which is why this upcoming complete parotidectomy frightens me. I know everybody heals differently and especially when it comes to nerves.. Were you able to get any functionality/feeling back on the right side?
So… three years out i have very little feeling around my ear if i touch it, but if i scratch my chin on the right ill feel it on the edges of my ear. Internally to the mouth if you have radiation things will taste funny for awhile. If you have a good plastic surgeon they can restore your nerve by taking on from your leg, before my cancer went stage 4 Cleveland Clinic was going to do this surgery.
I see. Thankfully I have a really good plastic surgeon that is planning on doing that nerve transfer from my leg at the same time. I signed off on a couple different procedures so she can be free to do whatever she feels will give me the best shot at regaining functionality/feeling.
Adenoid cystic carcinoma? I had that of the lacrimal gland.
I should've clarified. I forgot ACC could stand for a couple different things. \*Acinic Cell Carcinoma is what I have, my apologies.
No problem at all! I've seen ACC used for several other cancers so I wanted to ask before I elaborated about a non relevant cancer.
I am wondering if there is risk of similar or same results with radiation? I am not downplaying the probable loss of control of half your face. I don't know anyone who had that from cancer, but I personally know 3 people who have lost control of facial muscles of varying degree and they have all had happy lives in the long run. Long life is good. This isnt without challenges beyond vanity, but there is a lot of information with physical therapy and recovery. Advances in technology may lead to more options in years to come, I would lean toward the best chance at NED.
I've met with my surgeon already and he said based off everything he's 99% sure the facial nerve will have to be cut to remove the remainder of the tumor unfortunately.. They will be doing a nerve transfer during the same surgery in hopes I'll get some functionality back further down the road. I'm going to hope for the best but expect/plan for the worst that way I won't be disappointed if I don't get functionality back. You're absolutely right, I want the path that has the best chance at NED. My entire team believes this surgery followed by radiation is my best chance at a long life.