Hello my name is noreen

I have recently been diagnosed with a rare type of head and neck cancer. Adenoid Cystic Carcemoma. It was a very shocking and sudden diagnosis 2 months ago. It started as a painless ulcer on the palette. I have recently undergone surgery to have the maxilla removed.

I am shocked that after been diagnosed no support or advice was offered to me. I would really like to hear from people going through the same experiences, therefore not feeling so alone with this.

Hi Noreen, welcome.
I was diagnosed with SCC in 1997 but offered very little support really. I found that you have to be really pushy about it and keep kicking off until you get the support you feel you need. If you are unable to do it yourself, get a friend or relative to do it for you. Hagg.

Hi Noreen,

So sorry about what you are facing now. If it helps you could go to this blog. She is an Adenoid Cystic Carcinoma survivor. It might put your mind at ease. Probably you could ask whatever's in your mind.

http://www.cheekylibrarian.blogspot.

Good luck to you.

Hi Noreen!

If Sharifah's link doesn't work, try this:

Cheeky Librarian

I get the thing about no support. If it weren't for the members of this board I would have been totally lost, despite organizations like the American Cancer Society, social workers at my cancer hospital, etc. The Organized People make it so effin' difficult - people here jump right in with help and support. You don't always have to agree, but you can pick and choose, cafeteria style, the info and support you're seeking. Take what you need and discard the rest.

Take care, my friend.

Mimi

Hello Noreen

from American Cancer Society webpage

quote:

Adenoid cystic carcinoma is the most common type of cancer in the minor salivary glands. It is usually slow growing and often appears to be a low-grade tumor. It is very hard to completely get rid of and often comes back after surgery, sometimes many years later. The outlook for patients with low-grade adenoid cystic carcinoma is much better than for high grade tumors of this type.

You might these previous discussions related to ACC of interest.

Also check our MCF links to ACC websites.

Best wishes

Vinod

hi noreen
i am sorry to hear that you have cancer of the adenoids,peter tork of the monkees has the same type as you and has been very public about it and is doing very well.if you google him you can read his story.i'm sorry i can't give you any advice because this is a different type to what i had just over 2 years ago.i can imagine how alone you must feel but you now have a close knit family by joining this site and we will support you and hopefully someone who has been through what you are going through will be able to give you some advice.i wish you well in coming through this.love shirl xxx

Thank you all for your kind words and advice..
It's great to hear from others surviving cancer


I look forward to keeping in touch

I'm not sure what grade yet i've been told the type is pretty unpredictable...very unsure about the effects of radiation. I;m expected to have it for 6weeks monday to friday inclusive.

Very unsure if I want to go the radiation route. It's all happened so fast I have not had time to think!!!!

Has anyone got and advice or experiences RE radiation to the head and neck.

What are the possible side effects etc

Yet again I look forward to your response.

Hi Noreen,

I was diagnosed with throat cancer last April. Had 35 sessions of R/T in St Luke's, Dublin during June and July 2008.

I am very much alive and kicking. Been a tough journey and still have some side effects, neck pain, dry mouth and fatigue. Still better than the alternative?

I live in Kildare. Where are you being treated?

Best regards

Ken

Hi again,

To quote Dr. J's quote:

quote:

Adenoid cystic carcinoma is the most common type of cancer in the minor salivary glands. It is usually slow growing and often appears to be a low-grade tumor. It is very hard to completely get rid of and often comes back after surgery, sometimes many years later.

Radiation can be tough but with the possibility of recurrence it's best to attack it now with all the big guns that medicine has to offer. I can't think of any effective alternate therapy. As a popular cable host over here says, "It's time to take your Big Girl pill."

You've got lots of homework to do. This message board is filled with information about radiation as well as anecdotal information from patients and their carers. You can use the Find option to research radiation (or radiotherapy) and you'll be overwhelmed with the sheer number of threads. Take your time and learn all you can before making any decisions. If you get overloaded with too much information, go to the Survivor Stories forum and you'll be reminded that there's lots of life left after cancer. I tend to overthink situations and wind up depressing myself. Don't let that happen to you!

Best of luck to you Noreen. This is tough stuff but we're all here for you.

Mimi

Hi ken I live in Thurles, being treated at Limerick Reginal. It's a bit of a treck but could be alot worse at least it's not cork. My twin sister had to travel there for her treatment 5 years ago. I reckon thats why I'm terrified at the prospect of radiation. she didn't make it she fought cervical cancer for 7 years.

Hi Noreen
I have been following your posts without comment because I couldn't add more than the information you were being given. However I can't help myself, have to put in my two bob's worth.
The treatment route you choose is entirely up to you on the advice of your team but as Mimi says, if you're dealing with something that might come back at you, let it know right from the start that it's not welcome and hit it with all you can. Why give it a chance? This disease is a bastard, there's no point pussy footing around it.
Head and neck cancer treatment is cruel. No two ways about it. However there are many people who have survived and survived well so, as tough as it is there are plenty rewarded for their fight.
Of course there are also those who don't make it but the fight isn't over til it's over and you don't know when that will be so why not fight for every extra minute/hour/day/month/year that you can? Believe me, love and relationships take on a whole new clarity, depth and value if you're faced with losing them.
You have a tough time ahead, Noreen. You have big decisions to make regardless of what treatment path you choose and then coping with the outcomes of the treatment. That being said though, we have all been down that road as either patient or carer and have all coped in different ways. The one common thread for us all (and I'd call it a life line), is this forum. No matter what you face in the coming months, there will be someone on the board who has been there/done that so keep us all close. We're here to support you when it seems no-one else can. Everyone on here understands what you are facing and dealing with better than any dr, consultant or specialist. We're here for you.
Love from Down Under
Deborah

Noreen, you are right... radiation is no fun. however, if the doc recommends it, i would have to rely on his advice.

my little story is when i was going thru radiation i got to talking with another guy who was on the same schedule and he told me his story. maybe a year or so earlier he had some cancer in his jaw and they did surgery. after surgery the doc said he should have radiation. this guy told the doc, that wasn't part of the deal and refused to take radiation. so 8 or 10 months later, the cancer is back and he is taking radiation and chemo. got to put it on my list as one of the things to do.... check up on him.....

you can read my story on survivors and read where i dwelled on how i made a pig out of myself eating everything in sight to gain weight before the radiation started.... as a result no one other than my immediate family knew i was battling cancer....

later, pete

Hello Noreen ,sorry to hear your news ,I agree with all the advice the others have given you ,this is one condition that does not fit a pick and mix approach .It has to be tackled head on with the best treatment advised first time round .It will be a toughie Noreen but once you spend time going through everyones experiences you will find that a lot of people do well through treatment and each person has different tolerance levels and a lot have minimal side effects.

You will get through this and with all the support and tips here will soon be posting about how your recovery is going.The help here is invaluable and everyone will see you through .

Hang in there and build yourself up prepare in your head with others experiences through treatment and you will find it less stressful as not knowing what little problems could occur during treatmant are the niggles which cause anxiety .If you are aware of what may arise and know others have had this and resolve you will feel more in control.

All here to help you though.


Best wishes Bell.

thank's for all the replies it's great to know the support is out there.

it's better to get the support from people who are suffering from the same disease.

I dont think people understand how difficult this is, i find my speach is causing me some frustration
i am worried that it is going to be worse after r/t.
thank you for listening.