adenoid cystic carcinoma

[Lorraine4132]

I thought that I had got through the removal of my parotid gland and subsequent Radiation Therapy relatively unscathed, however I still have a lot of swelling under my jaw and it is painful in places including up near my temples.  It is hard to open my mouth fully.  MRI has shown no infection only a small cyst near my pituitary gland.  So ENT Dr wants to keep an eye on this and said that he could refer me to a neurosurgeon if I wanted.  I declined because neither of us thought that it was really important.

I had been feeling a bit odd/unwell, and went to see my GP.  A blood test has revealed Hashimoto’s Decease which is decreased thyroid function and I am suffering from all the symptoms, including my worst fear of gaining weight and unable to shift it.  I have researched this and apparently 50% of patients who have had head and neck RT end up with thyroid problems.  Anyone here experiencing this? 

[SILLY]

I am sorry you are feeling unwell , only to discover that you have Hashimoto's Disease . I was diagnosed with this about 10 years before I was diagnosed but never suffered many symptoms . My only symptom was unexplained weight loss which I was told was a temporary situation. The treatment is one tablet daily and blood tests to check that the dosage is correct . I think your gp would've told you this . I don't know if weight gain will be a problem for you . I gained weight when my thyroid went from being overactive to underactive but my diet had also changed and I was getting older too. Hashimoto's isn't something I've worried about once I began medication. 
When were you diagnosed with ACC ? 

[Lorraine4132]

Hi Silly

Diagnosed with ACC Sept 2019.  I don't worry but that.  I have also found that I have decreased kidney function and my blood pressure is high even though I am on medication for that.  I have been healthy all my life.  Hoping things sort themselves out.  

[DayR]

Hi Silly, I've been reading the thread and was wondering if you could point me in the right direction for the ACC facebook page? I was diagnosed with ACC this week and trying to find out what i can about it, i ahve googled lots but think being intouch with a community wiuld be more benificial. I live at the southern end of the gold coast and see that there are few here fron Brisbane and yourself from the GC . Thanks for your forum too 🙂 D

[Wombat]

The Australian group is: "Without a Ribbon Inc".  There is also an international group. 

Feel free to ask any questions here or on the FB page.  We've all "been there". Actually, I'll rephrase that: We are all "still there".  This is one of these shitty cancers that lurks around and just pops up or metastasizes whenever it feels like it. 

[DayR]

Thanks Wombat,  I have been through all the post of all 20 pages, so i have learnt alot from here 🙂 Im just at the starting block as im I havent as yet got a appointment with the specialist, just the a referal has been sent by GP. Looking to see if anyone has had ACC  of the Bartholins gland .. (Gyno specialty end of things 😶🤗) I can't seem to find much about that location for ACC.. 

[Wombat]

That's the trouble with ACC - it's both rare and varied.  I'm parotid. 

I can only suggest that you post a query on the FB page and see what happens. i.e. not everyone describes their situation. But, many are happy to respond.

The international group is likely to have others with the same diagnosis:

There are also some (reading) references here:

https://rarediseases.info.nih.gov/diseases/5743/adenoid-cystic-carcinoma

https://www.rarecancers.org.au/directory/245/adenoid-cystic-carcinoma

[DayR]

Thank you so much, i hope you are travelling well at the point in time... i have read everyones journeys on here and feel I know you all in a small way 💖

[Wombat]

Yes, am doing ok.

It's tricky some days.  I have ongoing and permanent side effects from intense radiotherapy.  I was diagnosed stage 4 in January and had the f**k zapped out of my neck in Feb/March. There are now no detectable cancer cells so that is extremely good (given where I started). It's just a case of regular check ups now (I hope!).  The main issue with ACC is how it "travels".  I am sure you have read about this!  So, it is about keeping vigilant re symptoms and taking note of anything that is not "right".

The rest is about trying to live as normal as possible! Oh, and trying not to get frustrated at others when they complain about their sore knee/hand (insert minor issue)! 😲

[SILLY]

ACCOI is a page on Facebook . They have reliable information . Find me on Fb. and send me a friend request and I can see that you can get into the appropriate groups . I may have already added you to the Australian group if you were the person I added only minutes ago. I sent you a friend request , if that was you . My name is Sylvia Farry .