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Adenoid Cystic Carcinoma Right Submandibular Gland

lts's picture
lts
Posts: 75
Joined: Nov 2012

Hi all. My name is Luke and I was just diagnosed with ACC and I am looking for others with this type of cancer. I have been reading lots of your stories and you all seem so informed. I am scheduled for selective neck disection 11/12/2012 and rad treatment after. There is so much info (not much positive) out their that it is overwhelming. I posted my story and have a lot of doubts about ACC showing up in CT and MRI scans because they didn't pick up my 3.5cm tumor in the gland. Any advice or comments welcomed.
thanks

meaganb's picture
meaganb
Posts: 226
Joined: May 2012

Hi Luke! I was diagnosed with ACC back in March of this year. I had the tumor removed along with 47 lymph nodes. Afterwards I had 30Rad treatments. It was a hard road but I'm pretty close to my old self now just with a scar and some pretty wicked dry mouth. :) My scans so far have been clean. Stop looking up info on Google. It willjust scare the hell out of you. You are not a statistic and it sounds like they caught it pretty early and that is good. Hopefully Katie will jump in soon. She's a fellow survivor of ACC. So sorry you have to be here but I promise you that treatment is doable. Hope to hear more from you soon!

Meagan

phrannie51's picture
phrannie51
Posts: 3597
Joined: Mar 2012

I didn't have ACC, so can't help you there. Tho....like Meagan, I gotta tell you to stay away from Google...I just about scared myself to death.

p

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Someone will be along shorlty to relate ...I was base of tongue SCC / HPV+ ..

You have found a great bunch here ....as all said above...stay away from google...another site that is informative is www.oralcancerfoundation.org ...they have some good articles and things ....

Keep us posted and keep checking in ..

Best,

Tim

lts's picture
lts
Posts: 75
Joined: Nov 2012

I will stay away from google and try and wrap my head around the fact I am not a stat. I have an appt with my ENT/Surgen tomorrow. Another opportunity to ask questions. Thanks again.

Luke

katenorwood
Posts: 1801
Joined: May 2012

Luke,
Hello, and welcome ! As Meagan said above ACC is scary but very liveable ! My tumor was on the right side (submandiblar gland). I had what they deemed a radical resection back in Dec '11. I am going to give you a site to go to immediately. This site deals with ACC period, and has accurate, updated info for you. (including oncs. from everywhere that are experts in ACC) WWW.ACCRF.ORG or their sister site WWW.ACCOI.ORG.
If you can... print off any and all info you want to ask your doctors....make sure you have someone with you at these appointments, write down everything....and ask...ask...ask. Ok saying this come back to our site here too ! I have met such inspiring, amazing people on board here....and our tx's are similar. You can pm me with any and all questions...and I want you to know you'll do just fine ! We are a rare cancer DON'T let this deter you ever ! Good luck, and will be thinking of you through all of this ! Katie

katenorwood
Posts: 1801
Joined: May 2012

Luke,
You are dead on with the scans....many times our dx is missed because there just isn't enough information out there for doctors ! But you have been dx'd now...they know what their looking for and where to look. If you're unsure in ANYTHING ask away always ! I will pray for clear margins...and no perineural invasion....makes for an excellant outcome ! Katie

Kaydub
Posts: 14
Joined: Feb 2011

I had my left submandibular gland removed two years ago this month. As a precaution they sent it in to the lab and the results - ACC. I had 6.5 weeks of rads. The radiation itself is painless, but it is the cumulative effects that are hard. I was exhausted, needed to take naps, my taste buds eventually couldn't taste, and my mouth, throat and esophagus were very painful, Making eating and drinking nearly impossible. Also it was difficult to sleep due to the pain. The best advice I can give is to take it one day at a time. This treatment can save your life.

Eventually I got my energy back, as well as my taste buds and I feel like a normal person again.

Of course everyone is different and something that helps one person may not help another, but be open to trying different things, if it doesn't work, try something else.

Someone gave you wise advice to NOT google this. And another gave wise advice to take someone with you to your dr. appointments, and to write down your questions.

For me, when people would ask how they could help, I asked if they would be willing/able to drive me on occasion to my radiation appointments. I had a different friend or family member take me each day. I didn't have to drive, or to be alone, and it took my mind off of the reality of the situation and gave me support to get through it for that day. For me, this worked out very well.

Luke I will keep you in my prayers as you go through the surgery and treatment.

katenorwood
Posts: 1801
Joined: May 2012

Kaydub,
Wonderful advice given above ! And congradulations on the two yr mark ! ACC...at the end of your treatments were you NED ? Meagan is...myself so far stable disease. Please continue to post as I am learning as I go and am less than 1 yr into dx. Again awesome advice...thank you ! Katie

Kaydub
Posts: 14
Joined: Feb 2011

Katie:

I think NED is 'No evidence of disease....? So hopefully I am answering what you are asking.
I had the tumor removed, the margins were not clear, so hence the rads treatment. I didn't have any symptoms when the treatment completed. There have been times, when I have felt an 'odd' pain, that makes me wonder, and scares me a bit, but it is occasional, and I think it is something that is more noticeable to a person who has gone through this, where as someone who hasn't wouldn't think twice about an odd pain.

How is your recovery going? I felt like each day things were improving by tiny bits. Although my taste buds are much better, they still are not back to what they were before the rads. My mouth is still extremely dry, especially at night, and when i wake up, but I think I am just getting used to it. I remember trying some mouthwash for dry mouths, but it too tasted weird, and I can't bring myself to try it now, even though it might be helpful. I pray that you are able to make lots of good progress.

katenorwood
Posts: 1801
Joined: May 2012

Kaydub,
Yes I'm sorry I should have used the full term...no evidence of disease. My margins weren't clean last yr after surgery, and I had perineural invasion and I bombed outta rads. But I'm stable as of last July...waiting on recent results of new scans done last Thursday. I know what you mean when you say every new pain we get...the voice of what if comes at us. I too have the dry mouth...though more days are better than others finally. I have met such inspirational people like yourself that are living with ACC...this site is awesome, and the accoi site rocks for info too ! Please continue to post, as like I said I'm new to this and will need your input ! Thanks, Katie

One thing I forgot to mention...and this may be with all cancer dx's but for sure ours (ACC) is to stay on top of monitoring forever on ours. It is slow growing but....can come back in original site more than not. We can live decently for yrs...and I don't want to be a bummer on harping about this but if your onc is knowledgable with ACC they already know this.

meaganb's picture
meaganb
Posts: 226
Joined: May 2012

Luke, Kaydub is correct. Do not try to go through this treatment alone. I also had friends that each had a designated day of the week to drive me to my treatments. You may not need this at first. For the first 2 weeks they came and watched my daughter while I drove myself to treatment, but by the 3rd week I was taking pain meds and was very tired so it was nice to not have to worry about driving plus to have the company.

lts's picture
lts
Posts: 75
Joined: Nov 2012

Thanks!!!

My wife and mom have been with me at all my appts so far. I am going to enlist friends and family to drive me to treatment. Not that I couldn't but for the good advice above. I talk to my brother, who is my same age, alot. I do not feel alone, but I am going to seek a local support group. My wife and I are going to start talking to someone as well, I think we need help as far as our kids our concerned. How to talk to them and not scare them. We have told them, but they are 6 and 8, and don't know what what cancer is. The social worker at the hospital insisted we at least do this so they dont start to think anything funky. You no kids.

4 days to neck disection.Yikes

Luke

katenorwood
Posts: 1801
Joined: May 2012

Luke,
There are a few on board here that like you had to talk to their kids about their dx's. I hope they pop in with some advice...as my children are all grown. You sound like you have a fantastic support system ! Try to relax....everything is in place for you. I will be thinking only positives for you on Monday ! Warmest regards, Katie

meaganb's picture
meaganb
Posts: 226
Joined: May 2012

I don't know why, but I had a feeling you were pretty young. I'm 27 and my husband and I have a daughter that is 17 months. Luckily, she will not remember me going through surgery and treatment and she was way too young to need to worry about explaining things. Wish I could offer some advice in that area, but if you're working with a counselor/social worker then I'm sure they'll guide you in the right direction. I'll be praying your surgery goes smoothly and that they are able to get clean margins. Rest up and enjoy some time with your wife and kids till then!

Kaydub
Posts: 14
Joined: Feb 2011

I am glad you have your family and friends to help you, and am glad you are willing to consider having them take you to treatment.

I also have two other things that were helpful to me, that you might consider.

A lady from my church organized meals through an online program called: http://www.takethemameal.com/ There are many similar programs, and you can let people know about likes, dislikes, food allergies, and how often to bring a meal. I was thankful to not have to think about cooking, and meals were brought every 2 or 3 days. People could sign up for slots on line, and I was amazed at how quickly the slots filled up. So many kind and willing people. Having meals brought in disposable containers, and enough for left overs was helpful as well. Although I couldn't taste things....my kids were still hungry.... so this was a blessing.

The other thing, that turned out to be very helpful, was an online tool called www.caringbridge.org. It is for anyone going through a health issue. I was hesitant to do this, but looking back, it helped me to write down what I was going through, and kept my friends and family up to date. They could look at it as often as they wanted to.

There were times when I couldn't sleep, so I would write a couple of sentences in the middle of the night. It is exhausting to have to explain it again and again, and this way a person can read without taking more of your time and energy. Family and friends can also leave comments, I was overwhelmed by the kindness and support as people read my story, and kept up with me. It was so encouraging to have this tool. Please consider it, even set it up before your surgery, so you or your wife can let people know how that went with out having to explain it over and over. You can also add pictures. many friends wanted to know what the mask looked like, so I included a picture. I kept it going for quite aq while even after the rads. I didn't post updates as often, but friends were happy to keep up. It was good for them and good for me.

Take care,

KW

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