Newly Diagnosed Adcc

tjheron

Hello everyone!  Unfortunately I'm new to the forum and can't say I'm glad but here I am;)

I felt a tender spot vicinity my submandibular several months ago and had an MRI done to see what was going on.  The MRI showed a small 'almond sized' tumor in my left side submandibular.  A biopsy was done and the results came back as a Pleomorphic adenoma.  I had a successful surgery last week to remove the gland.  During a follow-on appointment yesterday I was told a biopsy of the gland showed the mass was a Adenoid Cystic Carcinoma (AdCC).  A tumor board is meeting next week to decide follow-on treatment.  I was told by the ENT doctor the biopsy results were at least the best news I could get out of bad news.  The tumor was rated T1 (I don't know the other numbers).  The tumor was not invasive, was contained at the spot it started and the margins were good (new terminology for me but it sounds like good news?).  

Now I'm in limbo for a week waiting on the tumor board and what to expect!?  My question is does anyone know what I should expect over the next several weeks and months?  I'm of course reading as much information as I can on AdCC.  Some of it sounds good, some not so good.  I'd love to hear others first hand experience regarding their experience dealing with this.  

meaganb

I was diagnosed with ACC in

I was diagnosed with ACC in March 2012. I had surgery to remove the tumor followed by 30 radiation treatments because I had perineural invasion.  All scans have been clear since treatment. There is a lot of negativity associated with ACC & its rate of recurrance but I have heard of some that have gone 15 or 20 years & are still having clear scans. Don't let the internet info overwhelm or scare you, it sounds like yours was caught very early & that is great news! There are a few others on this board with the same diagnosis. I'm sure they'll jump in soon. Feel free to ask any questions, good luck with any treatment!

tjheron

meaganb said:

I was diagnosed with ACC in

I was diagnosed with ACC in March 2012. I had surgery to remove the tumor followed by 30 radiation treatments because I had perineural invasion.  All scans have been clear since treatment. There is a lot of negativity associated with ACC & its rate of recurrance but I have heard of some that have gone 15 or 20 years & are still having clear scans. Don't let the internet info overwhelm or scare you, it sounds like yours was caught very early & that is great news! There are a few others on this board with the same diagnosis. I'm sure they'll jump in soon. Feel free to ask any questions, good luck with any treatment!

Thank you

Thanks for the response.  I'm glad to hear you are doing well. I do have a question - if in fact mine was removed early enough to not have spread beyond the point of origin would I stil require some type of treatment beyond monitoring?  

meaganb

I have read several stories

I have read several stories of peopke just having surgery & no further treatment. I had radiation because my tumor was growing against a nerve & ACC tends to spread along nerves. Some goid websites to check out are accoi.org & accrf.org. If you are on facebook there are several groups specific to ACC survivors. Let me know if I can help with anything else!

CivilMatt

welcome

tjheron,

Welcome to the H&N forum, sorry you find the need to be here, but fortunately you ran into meaganb.

You may want to check out the Superthread, it can make you smart fast.

Chose a good team (dr, onc, ent), ask questions, take someone with you, get second opinion, plan ahead  (3 to 6 months), prepare to move fast and slow, come here to seek info (we are open 24/7)

Better days ahead,

Matt

wmc

Welcome to the H&N Group

Welcome and sorry you need to be here too. You at least did find the best group, for help, suport and knowledge, and just an ear when you have a bad day and need to vent. There is times it is like a rollercoaster ride, and the other it is like a bumpy road you go down. The good news is the ride ends and the road gets much better, in time. The wait is one of the hardest things. Also when you lay down to sleep and it's quite, your mind kicks in and just goes on, and on. Write your questions down you want to ask the doctors, he will say something and you forget everything. I handed him the questions and he wrote the answers down for me. You need to know and beleave you will beat this, you will. Good days and som bad days and some you never want to remember. Remember this is very hard on the caregivers because they can't make it go away so they hurt and are scared too.  We'll keep you in our prayers.

Bill

tjheron

wmc said:

Welcome to the H&N Group

Welcome and sorry you need to be here too. You at least did find the best group, for help, suport and knowledge, and just an ear when you have a bad day and need to vent. There is times it is like a rollercoaster ride, and the other it is like a bumpy road you go down. The good news is the ride ends and the road gets much better, in time. The wait is one of the hardest things. Also when you lay down to sleep and it's quite, your mind kicks in and just goes on, and on. Write your questions down you want to ask the doctors, he will say something and you forget everything. I handed him the questions and he wrote the answers down for me. You need to know and beleave you will beat this, you will. Good days and som bad days and some you never want to remember. Remember this is very hard on the caregivers because they can't make it go away so they hurt and are scared too.  We'll keep you in our prayers.

Bill

Thanks for the advice,

Thanks for the advice, information, pep talks and prayers.  I'm trying to soak up as much information as I can to figure out what I'm up against.  I am grateful I found this group.  It is somewhat relieving I can speak with folks that have (unfortunately) already driven down this road.  

 

 

debbiejeanne

first, welcome and so sorry

first, welcome and so sorry you need to be here.  second, stay away form internet articles, they are mostly old and outdated.  go to recommended sites like meagan gave in her post.  that is much better than just going to google.  i'm glad the surgery is in your rearview mirror and if you need more tx, it will be also before you know it.  stay positive and come here with any questions you may have.  we are always glad to help out and there are several here who had the same type of cancer.  please keep us posted on what's next and how you do.  praying for the best for you.

God bless you

dj

TracyLynn72

Welcome

to our family   I'm sorry you have to be here, but glad you found us!!  I had two surgeries to remove my tumor (lower left jaw) and after the first one, margins were clear.  They did more testing (since they cut through bone) and found small cancer cells that were still there....fast forward to another surgery to remove more bone.  My final margins were clear, but they recommended radiation since the first one showed cancer cells still in the area.  I had 30 rads after clear margins, but mine was a strange situation. Sometimes, surgery is all you need.  Write questions down that you want to ask your doctors...going in there can be overwhelming and you could forget.  I say this from experience!  

katenorwood

hello and welcome to the site !

Sorry you had to find us, but will tell you a great source of info., and wonderful people !  I was also dx'd with ACC (adenoid cystic carcinoma) sub. gland right side.  (2011)  You need to make sure your tumor board (onc's) are familar with ACC.  Not many understand our specific dx.  Many tx's do not work.  I'm going to refer you to a wonderful site that deals with ACC period.

www.accoi.org and their sister site, www.accrf.org they have the best, most factual information on tx's for our specific cancer.  From what you have told us though, they may have caught this soon enough where other tx's may not have to be done.  Clear margins are great news !   Please check out the sites I gave you.  Lot's of information to read and share with your onc's.  There are several of us on site here also that can answer some of the questions you'll encounter.  Also our entire group on CSN are awesome people !  And will help you over the bumps.  Good luck, and please keep us informed !  Katie

Hondo

Hi Tj

Sorry to hear the news but you are in the right place for help and answers, I am NPC so can’t help you much but to say Welcome to CSN H&N

God Bless                                                                                                                                              

Tim Hondo

Goyca

Hello Tjheron,
sadly u had to

Hello Tjheron,

sadly u had to be here. But this will be the best place for info and support. God bless u:) wish u good luck.. Stay strong:)

tjheron

Goyca said:

Hello Tjheron,
sadly u had to

Hello Tjheron,

sadly u had to be here. But this will be the best place for info and support. God bless u:) wish u good luck.. Stay strong:)

So I finally received my

So I finally received my diagnosis and recommended treatment from the tumor board.  Intermediate grade (cribriform) ACC.  No additional surgeries as the margins were good and there was no neural or vascular invasion.  Because it was an intermediate grade the plan is to complete 37 treatments of radiation (M-F, weekends off) to absolutely make sure there are no stray cancer cells remaining.  I was told I'm getting the max dosage!? I have an appointment this coming Tuesday at radiation oncology find out the specific details and undergo a simulation (whatever that means).  

 

I'm not even sure what questions to ask other than what should I expect? I'm assuming, from what I've read on this forum, the radiation treatment is the proper thing to do.  Any differing opinions?  

katenorwood

tjheron said:

So I finally received my

So I finally received my diagnosis and recommended treatment from the tumor board.  Intermediate grade (cribriform) ACC.  No additional surgeries as the margins were good and there was no neural or vascular invasion.  Because it was an intermediate grade the plan is to complete 37 treatments of radiation (M-F, weekends off) to absolutely make sure there are no stray cancer cells remaining.  I was told I'm getting the max dosage!? I have an appointment this coming Tuesday at radiation oncology find out the specific details and undergo a simulation (whatever that means).  

 

I'm not even sure what questions to ask other than what should I expect? I'm assuming, from what I've read on this forum, the radiation treatment is the proper thing to do.  Any differing opinions?  

spot on

Yes, what they are telling you is the exact tx most with the adcc dx with clear margins are told to do.  Please remember to visit the sites both Meagan and myself suggested.  Mine was solid, cribform and tubular.  (pretty common also)  Good luck !  Katie

tjheron

katenorwood said:

spot on

Yes, what they are telling you is the exact tx most with the adcc dx with clear margins are told to do.  Please remember to visit the sites both Meagan and myself suggested.  Mine was solid, cribform and tubular.  (pretty common also)  Good luck !  Katie

It's comforting to know I'm

It's comforting to know I'm getting the standard tx.  From what I've read thus far, the side effects of treatment varies from person to person.  I guess I'll find out soon enough.  

 

I did visit the sites everyone recommended.  Thanks for the advice!  I learned a great deal from visiting them.  

 

meaganb

tjheron said:

So I finally received my

So I finally received my diagnosis and recommended treatment from the tumor board.  Intermediate grade (cribriform) ACC.  No additional surgeries as the margins were good and there was no neural or vascular invasion.  Because it was an intermediate grade the plan is to complete 37 treatments of radiation (M-F, weekends off) to absolutely make sure there are no stray cancer cells remaining.  I was told I'm getting the max dosage!? I have an appointment this coming Tuesday at radiation oncology find out the specific details and undergo a simulation (whatever that means).  

 

I'm not even sure what questions to ask other than what should I expect? I'm assuming, from what I've read on this forum, the radiation treatment is the proper thing to do.  Any differing opinions?  

Sounds good! I had 30

Sounds good! I had 30 Radiation treatments after my surgery. I also had clear margins, but did have perineural invasion. Some people have very few side effects from radiation. I think the side effects I experienced were pretty normal. I was very sore, had ulcers, was extremely fatigued, etc.  But I made it through without having a peg tube. I just switched to a liquid diet about2 weeks in and maintained that until about a month after treatment finished. There is a super thread at the top of the page that gives more details  about what to expect & how to prepare for treatment. It is not a cakewalk but if I did it then you can too. So sorry you are having to deal with ACC at all but please don't hesitate to ask questions as they come up.

 

Also, when you go for your simulation, you will be having several CT scans so they can map out where the Rads will be targeted. They will also fit you for your mask. Ask your Dr for some anti anxiety meds. A lot of people have trouble with the mask at first. It may not be a big deal for you, but better to be prepared than have to suffer through.

 

Keep us updated!

tjheron

meaganb said:

Sounds good! I had 30

Sounds good! I had 30 Radiation treatments after my surgery. I also had clear margins, but did have perineural invasion. Some people have very few side effects from radiation. I think the side effects I experienced were pretty normal. I was very sore, had ulcers, was extremely fatigued, etc.  But I made it through without having a peg tube. I just switched to a liquid diet about2 weeks in and maintained that until about a month after treatment finished. There is a super thread at the top of the page that gives more details  about what to expect & how to prepare for treatment. It is not a cakewalk but if I did it then you can too. So sorry you are having to deal with ACC at all but please don't hesitate to ask questions as they come up.

 

Also, when you go for your simulation, you will be having several CT scans so they can map out where the Rads will be targeted. They will also fit you for your mask. Ask your Dr for some anti anxiety meds. A lot of people have trouble with the mask at first. It may not be a big deal for you, but better to be prepared than have to suffer through.

 

Keep us updated!

So I made it through the

So I made it through the simulation and mask fitting without any issues - more of a strange feeling than anything else.  As long as I know I can get out of the mask on my own if I really wanted to I'm fine.   First of 30 treatments on the RapidArc machine begins Oct 16th.  Based upon my own research I've started taking 30 grams of L-Glutamine daily to hopefully minimize mucositis.  I've also started eating anything and as much of it as I want just because I figure I'll lose it anyway  Can anyone tell me at what point can I expect to really start feeling fatiqued?  

Knowing the vast majority of folks on this forum made it through the treatment has definitely helped me deal with this much better.

More to follow......

CivilMatt

tjheron said:

So I made it through the

So I made it through the simulation and mask fitting without any issues - more of a strange feeling than anything else.  As long as I know I can get out of the mask on my own if I really wanted to I'm fine.   First of 30 treatments on the RapidArc machine begins Oct 16th.  Based upon my own research I've started taking 30 grams of L-Glutamine daily to hopefully minimize mucositis.  I've also started eating anything and as much of it as I want just because I figure I'll lose it anyway  Can anyone tell me at what point can I expect to really start feeling fatiqued?  

Knowing the vast majority of folks on this forum made it through the treatment has definitely helped me deal with this much better.

More to follow......

it starts now

treatment

Week 1 when does it begin….................................little nauseated, feel normal

Week 2 more of the same…………………………feel ok, starting to nap

Week 3 something is happening………………….taste lousy, where’s my recliner

Week 4 half way…………………………………..keep drinking water, feeling weird

Week 5 it starts to get bad………………………..magic mouth wash is my friend

Week 6 stick with your routine………………….got to stay focused, very tired

Week 7 I made it, it is over……………………….collect my mask and sleep

CM

jim and i

Sorry for your diagnosis but

Sorry for your diagnosis but you found the best support you will get any where on this board. Praying all goes well and your side effects are minimal.

Debbie

meaganb

tjheron said:

So I made it through the

So I made it through the simulation and mask fitting without any issues - more of a strange feeling than anything else.  As long as I know I can get out of the mask on my own if I really wanted to I'm fine.   First of 30 treatments on the RapidArc machine begins Oct 16th.  Based upon my own research I've started taking 30 grams of L-Glutamine daily to hopefully minimize mucositis.  I've also started eating anything and as much of it as I want just because I figure I'll lose it anyway  Can anyone tell me at what point can I expect to really start feeling fatiqued?  

Knowing the vast majority of folks on this forum made it through the treatment has definitely helped me deal with this much better.

More to follow......

The glutamine is a great

The glutamine is a great idea! Keep that up, it should really help with any irritation/ulcers that might pop up. I started feeling fatigued around week two. My daughter was 11 months old when I started & by week 3 I hada friend caring forher while my husband worked & I slept a lot. If I wasn't sleeping I still didn't have the energy for much. But, there are some who continued to work all the way through Rads with only minimal fatigue. You could be one of the lucky ones! 

tjheron

Two down, 28 to go.  Two

Two down, 28 to go.  Two treatments in and I'm thinking to myself this isn't so bad.  I've been able to fight off the clautrophobia from the mask.  Thank god I only have it on for 10 mintues or so. I'm continuing to exercise and drink glutamine laced water.  I know its very early in the game but so far so good.  I do feel nauseous immediately after the treatment. Anyone else experience that feeling?