Meet others living with Head & Neck Cancer: Introduce yourself

Hello all, I have been diagnosed with adenoid cystic carcinoma of the minor salivary gland. It was diagnosed by biopsy back in February and I am waiting for treatment now. It’s in my sinus region and they don’t think they will be able to get clear margins as is too close to the skull base. Has anyone else been in this situation of not being able to get clear margins in surgery and if so did you end up having the surgery or just radiotherapy? We have had 50:50 responses on whether it’s worth removing as much as possible/debulk before radiotherapy or just do radiotherapy alone (although previously told alone wouldn’t do much). Just wondering what experiences people had and whether thoughts vary around the world? Thank you, nice to be a part of this group

Hello @alexandra24 and welcome to Head and Neck Connect. Also sorry that you need to be here, but we can offer support to help you get through this. I know your cancer is a rare one and hopefully others will chime in with their experiences.

My SCC of skin origin began in my ear canal near the eardrum and invaded into the temporal bone of my skull. I had surgery at Mayo Clinic with partial parotidectomy and neck dissection and margins were not clear. The followup was then radiation with a targeted drug to sensitize the tumor cells to the radiation. That was started 5 weeks after surgery, delayed due to logistics. SCC is not particularly sensitive to radiation unless it is HPV associated, which mine was not. I have not had a recurrence at that site in 13 years. I have had 4 metastases which have been dealt with surgically, and the last one by Immunotherapy.

My advice is to ask for referral, even by videovisit, to a major referral cancer center where they have the most experience in rare cancers. It sounds like you may have done this already. If radiation alone does not offer a good prognosis then I would be seeking out a surgeon with much experience. My surgery and recovery were not fun and games, but it was certainly better than having a cancer growing into my skull. Radiation and chemo were the tougher part of the whole treatment.

Is your medical team already a part of a large referral center? Have you asked about complications of surgery ? Have they discussed following surgery with radiation if margins are not clear? Having a rare cancer means there is less information available to help you and your medical team make decisions. Be strong and you will get through this.

Thank you so much for this @sepdvm . I’m sorry that you’ve had to go through that but amazing that you are 13 years down the line with local recurrence. I get the impression from consultants that metastasis is the main problem but again that’s amazing that you’ve been able to have them dealt with.
My ACC is very near the near blood vessel and nerves going through the foramen rotundum so they wouldn’t be able to remove this bit. Therefore the thoughts are what’s the point in removing the large part sitting below this and below the skull base if this problematic part will be left. Some surgeons have said if you debulk the tumour the smaller parts will be easier to deal with for radiotherapy. Others have said that it makes no difference - radiotherapy will deal with the large tumour in the same way it will the smaller parts. So this is the bit I don’t know! The worry is the risk of surgery given the closeness to the skull base and the risk of CSF leakage. Also someone mentioned the increased risk of metastasis with surgery if it gets in the bloodstream. In my mind if less of the tumour is there there are less cancer cells to ‘wake up’ from the radiotherapy. I didn’t realise you could sensitise the tumour before radiotherapy - ACC obviously being pretty radio resistant one too. I will look in to this. Did they know they wouldn’t be able to remove your tumour with clear margins? I tried to get a telephone appointment with Mayo clinic but they only do them in person sadly.

I was diagnosed with SC tongue CA 2 .5 years ago followed by partial glossectomy and flap graft, then radiation for 6 weeks. More than 40 nodes were removed from my right neck with only one being positive. I had no significant risk factors other than a sibling with tongue CA. The most traumatic part of treatment was post radiation side effects including significant oral pain. Magic mouthwash and Hydrocodone did not give adequate relief, so finally I was placed on long acting morphine that did relieve the severe mouth burning. I was weened off of morphine after 6 weeks with no issue. Subsequently, I learned how to eat solids again but had some limitations with chewing on one side as a molar became loose, then eventually fell out. I continue to have severe dry mouth especially at night with mouth breathing, some difficulty with large pills, too big of food pieces and occasionally choke just on liquids. I find that xylogel works the best for the dry mouth. My speech is slightly affected but can be understood for the most part. I have experienced new tongue pain far posterior to the the site of the original ulcer that was on the lateral mid side of my tongue. It is especially uncomfortable with solids sliding past that portion of my tongue and aggravated with talking. CT and MRI recently are negative, as well, as having no findings on the oral exam by my surgeon. I am awaiting the next steps to follow up. In addition, I am dealing with one more loose molar that has been shaved off to the gum line to enhance cleaning that tooth that had been surrounded by an inflamed gum. Eating has changed again to pureed foods or very soft foods to reduce pain with swallowing. I have been told that on occasion there may be unexplained oral pain following radiation. One caveat I learned after the radiation treatment that is, don't hesitate to seek adequate pain treatment if the initial medications are not doing the job. The other caveat is that the water pick became my new best friend using it after every intake along with brushing with a rodadent TB. Taste has change a lot, especially sweet flavors. I may get a burst of flavor with the first one or 2 bites then it is very blunted. I can distinguish non sweet foods but some may be more over powering than before. I tolerate very few spices, especially hot spices. ETOH and peppermint are absolutely not tolerated. Even things like cinnamon or garlic applied too heavily will burn my mouth. It's been trial and error for many foods making eating out a considerable challenge. By joining this group, I hope to give some insight perhaps and learn from other's experiences. It has been a difficult journey for me, so when I say I understand at least some of your difficulties, it is coming from a pace of personal experience and empathy.

I was diagnosed with SC tongue CA 2 .5 years ago followed by partial glossectomy and flap graft, then radiation for 6 weeks. More than 40 nodes were removed from my right neck with only one being positive. I had no significant risk factors other than a sibling with tongue CA. The most traumatic part of treatment was post radiation side effects including significant oral pain. Magic mouthwash and Hydrocodone did not give adequate relief, so finally I was placed on long acting morphine that did relieve the severe mouth burning. I was weened off of morphine after 6 weeks with no issue. Subsequently, I learned how to eat solids again but had some limitations with chewing on one side as a molar became loose, then eventually fell out. I continue to have severe dry mouth especially at night with mouth breathing, some difficulty with large pills, too big of food pieces and occasionally choke just on liquids. I find that xylogel works the best for the dry mouth. My speech is slightly affected but can be understood for the most part. I have experienced new tongue pain far posterior to the the site of the original ulcer that was on the lateral mid side of my tongue. It is especially uncomfortable with solids sliding past that portion of my tongue and aggravated with talking. CT and MRI recently are negative, as well, as having no findings on the oral exam by my surgeon. I am awaiting the next steps to follow up. In addition, I am dealing with one more loose molar that has been shaved off to the gum line to enhance cleaning that tooth that had been surrounded by an inflamed gum. Eating has changed again to pureed foods or very soft foods to reduce pain with swallowing. I have been told that on occasion there may be unexplained oral pain following radiation. One caveat I learned after the radiation treatment that is, don't hesitate to seek adequate pain treatment if the initial medications are not doing the job. The other caveat is that the water pick became my new best friend using it after every intake along with brushing with a rodadent TB. Taste has change a lot, especially sweet flavors. I may get a burst of flavor with the first one or 2 bites then it is very blunted. I can distinguish non sweet foods but some may be more over powering than before. I tolerate very few spices, especially hot spices. ETOH and peppermint are absolutely not tolerated. Even things like cinnamon or garlic applied too heavily will burn my mouth. It's been trial and error for many foods making eating out a considerable challenge. By joining this group, I hope to give some insight perhaps and learn from other's experiences. It has been a difficult journey for me, so when I say I understand at least some of your difficulties, it is coming from a pace of personal experience and empathy.

Welcome, @jeghotsheet. Your experiences will be helpful, especially to newly diagnosed members. You may wish to use the group search to find discussions of interest. Here are a few suggestions:

- How do you care for teeth and dental health after H&N cancer?https://connect.mayoclinic.org/discussion/recommendations-for-teeth-and-dental-health/
- Mouth issues (blisters and gum swelling) years after radiation https://connect.mayoclinic.org/discussion/upper-gums-swell-up-now-and-then/
- Anyone have difficulty with speech (forming words) after radiation? https://connect.mayoclinic.org/discussion/speech-difficulty-after-radiation/

Sorry to hear about your troubles. I finished treatments 1/10/2025. Followed by 3-4 weeks of gradually increasing tough times with pain and difficulty swallowing, dryness of mouth, absence of taste, periodic thickness of mucous.
Then most of my issues resolved.
Still have dry mouth pretty frequently.... and food in my mouth dries up particularly with bread or pasta in my mouth with it.
Little taste has returned.... can taste things like sweet potato, pickles, cucumber, olives, but little else. Though I have experienced a few times where I taste food for the first couple of bites then taste gets muted as I continue eating (sounds like you have this experience too).
Throat gets sore from time to time so I go back to the salt/baking soda gargling. Actually keep up with this gargling pretty regularly again.
Most recently, Lymphedema (swelling of neck) set in at the two month, two week point after I terminated treatment. Seeing a PT with license for treating lymphedema and a neck compression brace is ordered.