well heres my story i am 31 years old and i was just diagnosed with acinic cell carcinoma. i found a lump a few months ago they did a FNA and it showed acinic cells but was still not sure if it was cancer or not. i had surgery march 31st they took out the tumor and part of my parotid gland. they found the tumor had open edges not closed so if it was cancer this would make it alittle more complicated. the doctor called me april 4th and let me know the pathologist said that its acinic cell carcinoma. so next week i have to go back and do a second surgery to get everything they can out . i am really not looking forward to that because i havent healed form the first surgery. then i will ahve to go for another surgery to take out my tonsil . it is very enlarged and abnormal looking. he thinks it might be related. then they will do a whole body scan and start radiation. if any of you have any information for me it would very much welcome it. i would like to hear from all of you who have or have had a similar experience to this one. thanks
cybil

Hello Cybil

Please read discussion_1 and discussion_2, and contact Sarah or Brenda who also had acinic cell cancer.

Do let us know how you are getting on. We are here to help answer what questions you have or just to listen.

Best wishes
Vinod

Hiya Cybil.
My Cancer was squamos cell carcinoma on base of toungue and neck cancer, though we all generally get zapped with Radiotherapy over a similar area. A couple of weeks into treatment will be the start of a difficult time but loads of us on here have been through it all and have an abundance of top tips and our unwavering support to help you through it all.
Keep us posted with your progress, and good luck with everything.
Steve

ask your doctor about Erbitux here is the link for it I hope this helps and you have to keep positive.. I have a post about my dads ordeal .. http://www.in-pharmatechnologist.com/news/ng.asp?n=6620...head-and-neck-cancer

thank you all for your thoughts and information. if you ever think of any new info. please let me know. my goal is to be as well informed as i possibly can be before i go into this. i have alot of decisions to make. i thought of another question. i went to an ENT who specialized in head and neck surgeries and is also a facial plastic surgeon for my first surgery. is this who i should stay with for the rest of my cancer ? or find some kind of cancer dr. (if there is such a thing , i dont know) what are your thoughts on this . or will my ENT just kind of orchestrate everything and send me to different specialists. how does that all work? cybil

Hello Cybil Yes ACC is very rare and, in my case, was very agressive. If you have the time you can read my story on the home page. Please remember that no two people follow the same pattern. If I can help in answering any questions I would be delighted to do so. I can only imagine how you are feeling with three young children to care for whilst trying to cope with this illness. But cope you will, just accept all the help that's on offer and stay positive. Very best wishes Brenda.

Hi again Cybil.
I think its usual that you would be under the guidance of an Oncologist/Consultant as your regular contact through your Cancer Treatment with other Surgeons and Doctors in the sidelines for various other aspects.
You know, one of the things that is commonly bought up in conversation is wether the Doctors/Consultants are honest enough with regards to the severity of the treatment you may be faced with. I did feel that they played the whole thing down when explaining the treatment process. I was unprepared for the pain and the weight loss I suffered as a result of peg feeding and struggled to start eating solid food again. It all seems like a nasty memory now as i'm pretty much ok apart from Dry Mouth and a little neck cramp.
A few people have commented that if a Doctor were 100% honest about the effects of Radiotherapy, then nobody would want it. Also there is the arguement that the Doctors can even be a little over optomistic that healing is quicker than it actually is. Until you've been through it....you can't possibly have any idea of the discomfort involved. It's tough, but it cures many of us....for good in some cases.
I know that it affects us all differently, but to a degree...Radiotherapy is an extremely unpleasant experience for all of us with a few rotten side effects. I made the mistake of thinking I could breeze through my treatment, and got a nasty shock. None of us on here would want to go through it again...thats for sure, but coming through it and sharing your experience with others, and even passing on anything that is helpful is something we all tend to do. It's a kind of duty.
Ask your Doctor/Consultant to be as upfront as possible with you and to be clear about the time expected to fully recover from your treatment, and related side effects, some of which you may have to put up with for some time.
Things I found useful and essential for a period of a couple of months were as follows:

Cocaine Mouthwash: (but this is on limited prescription only) for obvious reasons. This stuff is a major major relief from pain after Radiotherapy to the throat/neck.
Oramorph: Morphine. effective but addictive if taken in large quantities so monitor any use of this carefully.
Thats the two major painkillers out of the way.

For neck burns from Radiotherapy you can use a variety of soothing gels and ointments, but go for non-perfumed approved stuff like aqueous cream. (keep a tub in the fridge)

For dry mouth (which most of us have or have had) there is a lot of products out there designed to combat this though none are outstanding for this complaint.
Plain old fashioned water is the most convenient way and although you may sip a lot during the early months after Rad Treatment, the benefits of drinking Water are widespread so it has added benefits.
Biotene Gel: This is a commonly used Gel in a tube that you carry round for a quick fix for dry mouth but can also leave you feeling a bit sticky and is not refreshing really.
Glandosane: My favourite Med for dry mouth. It comes in a handy little aerosol and comes in peppermint and Lemon flavours. Not as sticky as Biotene and gives your mouth a little freshness.

I'm sure that others here will elaborate on the points i've raised and will add further tips of use. Prepare yourself mentally for the road ahead and you will cope and get through it all ok. Ask your loved ones for their patience when you are suffering or feeling down and make sure you eat as much as possible after treatment as this will aid your recovery.
Blimey....just realised how long i've been waffling on.
Chin up and keep positve
Steve

thanks steve! i really appreciate all the info.
i will copy and save this post . it might come in handy when my treatments start.
cybil

Hello again Cybil I have been told throughout all my bouts with this illness that Acinic Cell doesn't respond to radiotherapy and, therefore, have not had it. I would be interested to hear your medics' slant on this. Certainly Squamous cells do respond and that is why most people on this site have undergone radio. Kind regards Brenda

Heathrow Steve lists many side effects following treatment. These in themselves are bad enough to endue through the recovery process.

What should be avoided, as on occasions happened during my recovery, was the tendency when feeling low to attribute such effects (jaw pain, swellings etc), as the return or fresh outburst of the cancer.

During the early months of recovery we are so low in spirits and fearfully aware of the destructive nature of our illness and perhaps still in shock at developing it anyway that such feelings may be understandable.

Such thoughts should be avoided. Do not beat yourself up! I did on a few occasions....silly me.

Regards,

Base of tongue diagnosed June, 2004
Radiation treatment only Aug/Sept 2004

[QUOTE]Originally posted by Brenda Brady:
Hello again Cybil I have been told throughout all my bouts with this illness that Acinic Cell doesn't respond to radiotherapy and, therefore.......


hi brenda,
the way my doctor expained it is there is about a 50/50 chance the radiation will work. he also told me that it is not always so effective with this kind of cancer. but the way i understand it ...the fast neutron beam radiation is very successful with this kind of cancer and greatly reduces your chances of a reacurrence also. you might want to get some thoughts on this from someone else also,.. this is just what my dr. said and what ive understood from online research.
cybil