adenoid cystic carcinoma

[June1]

Thank you everyone for replied my message. I am very appreciate for your kindness help and useful information. 

[June1]

Hi Chris,Lampworks54&Sylvia, I just found this on my report, stage I, pT1 pN0. I don't know why it looks like different with yours. I actually could be diagnosed much more earlier, before I went to Dr Ben Dixon, I was referred to see Dr Roy Taylor, he just gave me 1 mth or maybe 2 months antibiotics, after 3mth I went back, he advices its just a lymph node infection, then he referred me to see his son, ENT Dr Matthew Taylor to seek a second opinion. His son told me the same word, he said tumor would not cause any pain, as long as I felt the pain, its not a big matter. And he also told me Parodic cancer is very rare, for any lump under 1cm they will not do any action. Because reason 1 is this kind of cancer rare, reason 2 is under 1cm lump is too small, unable to do fine needle biopsy test. What a bull shit! So I backed home, waited another 2 or 3 months, but during the time I was consistently feel the pain. So I did a Google and asked my GP referred me to Dr Ben Dixon. Really hope on the coming surgery he could help me get the clean margin. I am a bit worried, because last Wednesday's surgery he didn't think it could be a cancer, so did not remove enough tissue. I just hope my tumor will not spread since my last surgery as it is very aggressive. Again, thank you all for the useful information and kindness support. 

[June1]

Hi Lampworks54, would you mind email me your surgeon because I live in Wheelers Hill, and Richmond is really far away. Also the private surgeon fee is quite expensive, I am not sure if I should go to public hospital. I just think if my life is counting down, I should save as much money as possible for my 2 boys, they're so young and I feel so sorry that I am sick and may not be able to see them growing up. 

[Lampwork54]

Hi June,

That's really strange.  My ENT guy was Dr. Roy Taylor.  Fine needle biopsy showed benign tumour.  All good.  He referred me to his son Mr. Matthew Taylor.  He didn't agree with the fine needle biopsy as it also contained a few salivary cells which were a red flag to him.  He told me it could be a cancer.  I didn't believe him as the gland was painful and most cancer tumours are not painful and all m blood tests had been good.  He disagreed and I had to have a cone biopsy.  As the fine needle biopsy was excruciatingly painful, the radiologist said he would make sure that didn't happen again.  He gave me 7 local injections.  It was even more excruciating.  I cried through it, cried paying my account, cried in the taxi all the way home until I could take something for the pain.  It was incredibly distressing.  Later, I found out that as it was a nerve based tumour, normal pain relief doesn't work.  After surgery I could not get relief from pain.  The only pain relief has been from Amiltriptolene (Endep) which is an antidepressant that coincidentally is good at blocking nerve pain.

I can't believe you saw the same doctors!  Wow.  The Radiologist at the Alfred is Professor Syd Davis and he's very good as are the team.  

[Lampwork54]

Hi June and Silly,

I have sent you a friend request Silly.  I just haven't publicised to anyone that I have this disease.  Only close family know so I'd prefer not to discuss anything on my normal facebook page.

June - Go back to Matthew Taylor.  I had private health insurance but he said he needed a team so I had to go to the Alfred as a public patient.  Plastic surgeons anaesthetists, dieticians, speech pathology, radiology etc.  No cost involved which was lucky as I had just retired.  Mr. Taylor has been fabulous throughout this.  Maybe he was right that you can't do a fine needle biopsy in a tumour under 1cm.  That would be hard.  You are really lucky as it is slow growing.  Aggressive - yes but so far you are doing great because you've been diagnosed early.  You have the best chance.  I've also been through the ultra sounds, antibiotics etc.  They have to rule out everything else first.  Wheelers Hill is a midway location so the Alfred would be easy for you.  Mr. Taylor said once the reviews settle down he will see me back in his rooms again as a private patient which is fine.  

[Lampwork54]

P.S. June - Your life is not counting down but yes, you do ned to be careful with money right now.  We live in one of the luckiest countries in the world where our public health facilities are incredible.  You need to give yourself the best chance of a full recovery and a long and happy life.  x

[Bessyh]

Hi June, I'm sorry to here of your diagnosis, it is particularly scary when you have young children. But don't believe all you read on the internet there are many people who live a long happy life with ACC. I can recommend Ben Dixon, as he is my surgeon and I have been with him for nearly 7 years now. Ben Dixon has experience with ACC and I know of 3 others who had him as their surgeon for ACC when he was working at Peter Mac. When I started my journey my little girl was 11 months old and my boys were 2, 5 and 6. 

BessyH

[June1]

Thank you very much Bessy, would you mind to let me know when you were diagnosed with ACC, which stage it was? After your surgery did you have recurrence? And would you like to share some of your experience how to recover from the surgery and radiation therapy? I will have a PET CT before my surgery, but this CT is only for neck and head part, I'm not sure if I should ask Dr Ben Dixon change to a full body scan? 

[chrisuk]

Hi June.

I looked up your cancer grading/staging and it looks good to me as cancer goes.

"Small, low-grade cancer, no metastasis, no spread to regional lymph nodes, cancer completely removed, resection material seen by pathologist: pT1 pN0 M0 R0 G1"

Chris

[MelissaCraig]

Hello, I was diagnosed a couple of weeks ago with AdCC of the breast. I had surgery last week to get 2 lumps out but going back tomorrow as the margins need to be increased. Onto an Oncologist after for the next stage. I have had no luck finding others with AdCC of the breast but if anyone is out there, I'd love to hear from you. I'm feeling pretty confident about the way forward and taking it as a process and not letting these news interfere with life. For now, I know it is of no help at all to try figure out all the unknowns. Thanks, Melissa (Brisbane, 45 years old).