Hi all

I’m a 29 yo married female and out of the blue discovered that my mother has adenoid cystic carcinoma and my understanding is that it’s quite rare. I’m struggling to find in depth information. I’d like to understand this type of cancer a little bit more, can anyone help?

Just wanted to reach out and speak to people in the same situation. I’ve never used a forum before so not sure exactly what I’m doing.

She’s going in for a MRI and pet (?) scan tomorrow then another appointment next week with the surgeon.

Was told today that it’s incurable and they recommend to operate instead of undergoing radiation therapy.

Has anyone else experienced this situation? Just would like a better understanding of it. Struggling to cope with being told it’s incurable

An.

Welcome to OCF, An! Im sorry you are going thru this with your mother! We'll do our best to help you with info and support.

We have had members diagnosed with ACC over the years. Im sorry, I cant think of anyone recently but that doesnt mean we dont have someone to help you. Heres a couple links with info from our main OCF site.

Im not quite sure what other countries have thats comparable to the US's comprehensive cancer center (CCC) where they use a team based approach with all the doctors and specialists working together to create a treatment plan. The best thing for rare cancers would be to find a large teaching type hospital where they would have the most experience with rare cancers.

One thing I wondered about your post is your mother is given treatment options but was given a terminal diagnosis. Usually a terminal diagnosis comes without any further curative attempts. Im sure your mother would find it very helpful to take someone along to her appointments to take notes. Too often we hear some pretty scary news and thats all we are able to absorb at that time.

Main OCF Site...Understanding

Main OCF Site... Rare Cancers, ACC

Hi there - I was diagnosed with a malignant ACC in 2016. I was told it was very rare but I've never been told its incurable. My doctors always told me it is slow growing and can spread along nerve endings to the liver or the lungs. I was told the disease specific survival is high at 5yrs but decreases fairly dramatically after 5 years. I will get a head and neck mri and chest ct scan every 6 months for the next 5 years. I had 6 weeks of daily radiation therapy that was very very rough. I stopped eating, was nauseous a lot and lost a lot of weight. I lost my sense of taste and smell and a little bit of hearing loss. Post surgery a part of my reconstruction failed to heal correctly and an oronasal fistula developed. That is basically a hole in my hard palate that allows for liquids and food to enter my nasal cavity. This causes a chronic sinus infection and nasal leakage. I had a 2nd surgery to attempt to close the hole but that didn't work. I then was referred to a prothodontist who makes prosthetics for the mouth. He made me an oral opturator to block the whole but that hasn't worked either. I've just joined this forum to find out what others experiences were and if they had any luck with successful treatment of an oral fistula.

Ask me any questions you like. Hopefully I can help.

Hi

Thank you for taking the time. It’s hard to deal with the news and understand exactly what it is. When they operate, so they remove nerves? Apparently my mum has 3 nerves that have the cancer growing on them and almost the whole right side of her face is numb. It started when her eye stopped tearing and the GP she saw told her it was nothing just menopause. This happened for a year until the numbness started and she went to seek another opinion. Thats how we discovered the tumours as the second doctor requested an MRI.

We are from Australia and she is seeking advice and treatment from the Peter McCallum centre? We called a US clinic and they advised Peter McCallum is apparently a sister clinic?

I also want to know how to support my mum through this and make her feel as if her life is as normal as possible??

Thanks

At your mothers treatment facility, ask about what they offer to help support cancer patients. Here in the US, depression and anxiety are prevalent with cancer patients and caregivers. Many will seek out a therapist and quite a few will need anxiety meds on a temporary basis. Family counseling may be an option where your mother is being treated.

Hopefully the facility you mentioned your mother is being treated at will be one of your countries top facilities. We do have some members from Australia but they may not be actively posting right now. Im sorry but OCF does NOT have info about what international centers are the best or who is affiliated with who. The best places in the US for patients to get treated are called comprehensive cancer centers (CCC's). The top CCCs use a team based approach where all the specialists work together so everyone is on the same page. The US CCCs attract the brightest and most talented physicians who are the most experienced in complex cases and rare cancers and are often teaching hospitals. This info might be helpful when seeking treatment centers in countries outside of the US.

When looking at the very best cancer treatment facilities, please use caution when you vet them! Unfortunately, cancer treatment is a BIG business where there are far too many unscrupulous people who are only looking to fill their pockets. Patients and their families are especially vulnerable when first diagnosed, they're understandably upset and not sure where to go or what places are the best for their situation. Be especially careful making calls to unknown international facilities! You definitely do NOT want to end up calling a "for profit" type facility that is heavily advertised or some back alley clinic that does not comply with regular medical treatments or guidelines. These organizations often only accept certain cancer patients/conditions that are the easiest to treat making their rate of success appear much higher than if they accepted all cancer types and patients. These so-called "cancer centers" are very deceitful and only have their eyes on their bottom line and not patients welfare. They are so tricky you will sometimes see these facilities use cancer center as part of their name to make patients think their facility is an accredited one thats a top clinic. Sadly, there are far too many people/businesses who take advantage of cancer patients and their families with false claims and fake cures.

Even if you name where your mother is being treated, being that Im in the US, I would have no idea what places are good and which one arent. Plus OCF is NOT a doctor/hospital referral or rating organization. For those types of things you will need to find something in your country that provides that type of rating service. Here at OCF, its best to leave out specific doctors names and to be very careful when posting the names of treatment facilities. We can NOT allow the posting of any negative info associated with any doctor or treatment facilities name to be written on our public forum.

The best thing you can do to help your mother is to read and learn about your mothers cancer. By being an informed caregiver it will help make you a strong advocate for your mother. I posted a couple links on my previous reply. Take some time and read thru the main OCF site. Theres page after page of info to help you better understand cancer and how its treated. Its certainly is a small world having another patient join OCF who had ACC recently. While every patient is different and will respond to things in their own unique way, Im sure you find it comforting having another ACC patient/survivor who is actively posting. Our site helps make the world a much smaller place! Members become friends, often very close friends which are like long lost relatives. Ive made many close friends from all over the world and been fortunate enough to have been able to meet many OC patients/survivors and caregivers in person at different OCF events over the years. Knowing theres others out there who have been thru similar situations helps to create strong bonds. Im sure your mother will find great comfort in knowing she isnt alone with her illness.