Adenoid cystic carcinoma

[Tarsh49]

Does anyone else have or had adenoid cystic carcinoma?

[Caro1]

Hi Tarsh, I had, diagnosed May 2020, have you found the Life without a Ribbon FB page that's the Acc page in Australia, there is alot of info there.

[Tarsh49]

Thank you. I will have a look now. On the upside, it's 8 days since I finished radiotherapy and I think I hit my peak 2 days ago, it's 3am and I just joined 3hours sleep for the 1st time in about a month. Hopefully I join ano t her 3 after this post. How are you going now?

[Caro1]

Thats good news then. Not too bad, last check up and MRI were good. I do have an issue with a tooth on my radiated side which could be an problem, I look like i have a golf ball in my check at the mo. 

[Tarsh49]

So how long ago was your treatment? Does the oncology dentist at Peter Mac in Melbourne look after you for your teeth? I go back to see them at the end of June.  I feel strange now because since I have finished the treatment my friends all say that's great and now I can recover and out it behind me but it's not that simple is it. 

[Caro1]

I finished RT mid August 2020. I'm in NZ.

No its not that simple, especially when you read the literature, but I just try to take one day at a time, its hard but have to keep up beat. Mine was in my submandibular gland, had PNI and no clear margins. It had been there over 5 years a s dismissed as a swollen gland, even had a biopsy in 2017 as I was worried no tests has been done, it came back clear so that put my mind at ease. Then it started to grown at the end of 2019 so i went to dr again and asked for further testing. Worst day of my life getting diagnosed especially when it had been there so long. But that seems  common with Acc, I read somewhere average time to diagnose is 8 year! There are some excellent FB pages with alot of members and their stories, some give hope others not so much.

[Tarsh49]

Oh wow. Yours  is so similar to mine. Mine was in my left submandibular gland too. I had my thyroid gland removed 7 years ago and it was about a year after that I noticed the gland was swollen. I saw my Dr and it was dismissed as a gland. I got her to check it everytime I was there which wasn't often coz I don't get sick at all really. Then October last year it was just under the skin and I tender and I started to get stabbing pains. Only about once every few days but I insisted on tests. MRI, ultrasound, another MRI with die all showed it as benign.  Then they tried to do a biopsy and hit a nerve and I nearly hit the roof. Apparently the tumour had it's own cluster of nerves. They still thought it was benign but I had surgery to remove it mid Feb. That's when it came back as ACC. I couldn't believe it. I go for my appointment with the radiotherapy specialist next Tuesday so I will find out more then I guess. All of my friends think it's all over now but I know because this cancer tends to come back that it's always going to be a monkey on my back. This treatment is hopefully going to keep it away for 20+ years so I hope it does. 1st they told me 5yrs and I am 49 which sounds old but 5 years is not long enough for me. My jaw bone is a little achy too so I hope that is ok. I am on my own with my 2 teenage kids so I have to keep it together for them. 

[Caro1]

Wow, very similar it just shows you really have to push for your health and listen to your intuition, I got to the point I thought I was just being paranoid, I had absolutely no symptoms either so that didnt help. No 49 is not old, I have just turned 50 and hope to have many for years yet, my youngest is 9 so need to stick around to support her through life, that's the hardest thing for me that perhaps I wont be here for her. On a brighter note tha antibots are working and my face has returned to normal now to figure out what to do with the tooth, it should have come out probably but obviously didn't think it a problem, then only took 2. I had physio after Rt and that helped with my achy jaw, you could ask about that, it might help.