Hi my name is Laura and I was recently diagnosed with small salivary gland cancer. I am a 38 year old mother of 4 , 3 boys ages 21,18,15 and a little girl age 7 who happens to have Cystic Fibrosis. My diagnosis has been extremely hard for me to accept since Ive always been my daughter's advocate and caregiver since her diagnosis..cancer added to an already full medical treatment is overwhelming..emotionally and physically. With my original biopsies (one was lost via mail or the lab lost) I was diagnosed with a T1 or T2 adenocarcinoma of the small salivary gland. After being referred to a care provider in my network (Balboa Naval Medical Center) I was seen by an ent. I had surgery on October 31,2006 to remove the tumor. They came back with a diagnosis of a T2 NOMO (perineal invasion) and as a mucoidepidermal carcinoma instead of the original diagnosis of adenocarcinoma. It was a little over 2cm but with the nerves involved inside of the tumor they graded it T2.

They referred me to see subsequent doctors for a tumor board review. I first saw an oral surgeon who said they would have to remove all of my molars on both sides of my mouth because of the radiation. I was pretty upset concedering Ive taken pretty good care of my teeth. I felt like a butt after looking next to me in the waiting room and seeing a young man there around the age of my son who had lost his leg in the war, and I was feeling bad about some teeth. The radiologist felt I was already cured with surgery since they had clear margins all around and 0 lymph involved. He said he would be in favor of treating if the surgeon felt nervous at all. I happened to miss the appointment with the oncologist since my daughter happened to be in the hospital for a *tune-up* for her cystic fibrosis.

Last Thursday evening they called 30 mins after we were back from the hospital to tell me they had agreed that radiation therapy was there recommendation after the tumor board meeting. The radiologist said they decided this because of the type of carcinoma it is and that Id only have one tooth removed. The ent called shortly after him and said they would have to remove 2 teeth (my tumor was on my right side retromolar area) for radiation. He also said he was kinda on the fence as whether or not to treat. But given my age felt it would give me the best chance at the cancer not returning. He said if it were him he would pull his teeth and do the treatment. He said get it while the iron is hot. So I guess Ill be sick at Christmas.

Im confused at the types of radiation therapy there are. Imrt? I think that is what they mentioned in order to radiate just the area that was involved and not my entire mouth. Is it better to do both sides? Also from the little bit Ive read about that medication that is supposed to help keeping your salivary gland tissue healthy? They never mentioned that to me and I was wondering if that was a type of chemo or if it is something they use now to combat the salivary gland damage. How many here have opted to use it and how successful was it?

Since my surgery Ive already noticed a dryer mouth and taste seems to be off. Spicy foods absolutely are more spicy to me than ever and I cant taste everything. Ice cream seems to just feel like a cold numbing on my tongue...actually a little annoying.

Id love to hear from anyone who has had a similar type of cancer or experiences. I hope you are all feeling better.

take care,
Laura

Welcome Laura: Wow, you have a plate full right now Not a good time of the year to have to deal with it either. 1st things 1st- get your support system organized so you can focus on what you will need to do for you.2nd, I hope some others will chime in here about the teeth issueas there are different opinions about having them pulled. IMRT is a relatively new kind of radiation[not all Ratiation Centers have it to offer] but it is claimed to be more accurate in pinpointing certain areas of the mouth. You can learn more by using the search button here. Amifostine is a drug given during radiation to help protect the salivary glands. It seems to be difficult to tolerate for some folks-search that too for more info. It sounds like you are getting alot of your info via phone calls. I think I would insist on a sit down meeting with the Docs involved and ask face to face questions and record the session or have someone with you who can write everything down. This is your life and your battle, so don't let anyone shortchange you on information. I hope your taste buds recover enough for you to enjoy Thanksgiving and leftovers, because when rad tx starts, you will probably lose them for a while. Keep eating and talk to your family about who is going to take over which chores while you get well. Best luck to you. Amy

Laura,

As you can see below my signature, I had IMRT for 35 sessions. According to my RO IMRT is supposed to reduce the side effects from rad. I have read numerous posts from others that didn't get IMRT and comparing myself to them I would probably agree BUT either way, rad is not a pleasent thing to go through.

My docs radiated my entire neck, left, middle and right side. I lost most of my taste and have dry mouth. Both of which I am told will eventually return and I hope they are right!!! I lost the hair on the back of my neck where the rad exited. I also lost all my facial hair below my chin and I don't need to shave again there. I also have developed a Turkey Waddle which is discussed in a humorous way in another recent post.

Even though IRMT is "the Best" be prepared for the worse. Stay on top of your hydration and "food". You will be on a liquid diet soon after you begin Tx. Your throat and the inside of your mouth will be painful making swallowing difficult therefore keeping up with your daily water and liquid food will be difficult. Nausea will become a problem that only makes things worse. If you don't keep up you will become dehydrated which will cause constipation and nausea. You will also probably loose weight so it's best if you can try to add some pounds before things go south.

As Amy said you need to get YOUR support group organized NOW. My wife was my caregiver and I would probably not have made it without her. Someone else is going to have to be you for the next several months. Don't even try to tough it out and maintain your normal schedule. You won't be helping anybody or anything. You must focus on yourself.

This site will be very helpful in your journey through what I call the Black Tunnel. It is a short journey that seems to last forever BUT LIKE ALL OF US YOU WILL EMERGE ALIVE about 2 weeks after rad ends.

Post every question you have and question everything you are told by all your docs. It is you body and your life. I don't know of any doc that gave me advise that went through what any of us did and that's why this support group is invaluable.

We are always here for you as others were for us.

Thanks for the welcome and information John. I believe Balboa has IMRT. I had asked the radiologist if they had the latest technology for salivary gland cancer. I think he mentioned IMRT and that they would concentrate just in the area where the tumor was and not on both sides of my mouth so I should retain salivary gland function in the left side of my mouth.

The fear of all of this is paralyzing. I want to stay as healthy as possible in order to care for my daughter. Im also worried about if we should even be around each other. We are currently going to a military hospital but in the past at civilian hospitals she was never allowed near the cancer floors. She has a genetic disease but because of the sticky mucus and stuff she has she gets frequent sinus infections and pneumonias. She isn't contagious to anyone but if radiation wipes out your immune system I am somewhat concerned. I absolutely have to be around her she is what keeps my spirits up, she's also a great inspiration to me since she has gone through so much herself.

I have an appointment with the ent this afternoon so Im trying to compile some questions for him. Im definately going to be asking about the Amofistine. Is it usually prescribed when you are recieving IMRT and only radiating one side of your mouth? Or does it matter? Ive read a little and still have a lot of questions. Im not up to the nausea from it but Id like to be back to my normal self asap also.

thanks all,
Laura

Some will say the amofostine is really not worth the side effects when you are having IMRT. I didn't have the amofostine but did have IMRT and am glad I did. My RO said no amofostine when he does radiation.

I'm 2 months out of treatment and still healing. I feel pretty good but still get fatigue and my throat is far from normal yet. I have limited taste and dry mouth too. But to quote someone from this board "I'm on this side of the grass."

As far as kids go the Med Oncology (Chemo) nurses told me it was no problem being around my family because I was used to their germs, but I should stay away from strange kids.

As with everything make a list and discuss it all with your Drs. Write it down and check it off when they answer and write down the answer. Some folks even take tape recorders.

We are here for you.

Laura,

It's hard to know for sure how you're going to react to treatment -- not everyone has exactly the same treatment or exactly the same response.

I had tongue cancer (T2N0M0) at age 39 and had surgery followed by 39 radiation sessions. My radiation was the general field type, as IMRT wasn't available then. Chemo was not part of the plan then, either. While I experienced many of the nasty radiation side effects that you see described on this site, they didn't completely keep me from much of my normal routine. Before cancer, my typical workday was 10-12 hours; during treatment and for several weeks thereafter, it was down to around 5-6 hours a day. (I also managed to get in several rounds of golf.) I found it helpful to keep up as much as I could with my usual schedule, as it took my mind off of the worst elements of treatment.

I also kept doing my own food shopping and meal preparation, because as eating and drinking became more and more difficult, I felt I had to keep experimenting with different ingredients (almost all of which went into the blender) to see what worked best for me.

Thankfully, my taste buds got back to normal after a few months, my salivary function very gradually came back to a surprising extent (with the help of medication that I continue to take), and I still have all my original teeth.

Please be sure you get the answers you need to get from your medical team about the reasons for your specific treatment plan before they take the next steps. It's really important to have a highly experienced head and neck cancer team taking care of you over the next several months.

Cathy

The medication Cathy is referring to is Salagen which I also took during radiation and for a few years thereafter. I helps preserve saliva function. Works for some and not others. I have a fair amount of saliva, just a little thicker than before rads. Both Cathy and I had XRT. I don't think IMRT didn't existed when we were treated.

I assume they removed the cancerous gland? Since you said you are getting IMRT to only one side, will this affect the glands on the other side? Ask doctor. If so, can they be stented?

Take care,
Eileen

Laura, If you are having radiation alone with no chemo, you shouldn't have too many problems with your immune system so being around your daughter is not likely to be an issue.

Hi Laura:
You will find everyone on this site very helpful & caring!

I will share my Amofostine experience with you. I was diagonosed in January with base of tongue/floor of mouth Squamous Cell after sporting ear aches/and a lesion for several months and two negative biopsies. I had a neck dissection in February on the right side with removal of part of my tongue, floor of mouth, tonsils, and right side saliva glands & lymph nodes. (just to be sure) My ENT told me at that time that the remaining saliva glands would help compensatefor the loss. (something for you to discuss since your cancer is in your glands)
Everything went well enough and I recovered very good. Got back to work, was eating very well, basically back to normal.
Then, in between follow up visits I starting getting that soreness and spasms in my tongue again. I went back to my ENT who was very glad I responded immediately. He scheduled me for an outpatient biopsy where he could put me out and really get a good look while taking a biopsy. The biopsy was negative but my ENT wasn't satisfied with that. He referred me to another ENT who only sees cancer patients and performs surgery.
My new ENT scheduled a PET/CT which revealed a new tumor on BOT, now on both sides. He suggested that we proceed with Radiation & Chemo prior to another surgery. My RO suggested the Amofostine since I had already lost the right side glands and they were radiating both sides. I was told (as well as witnessed it with two other patients I made friends with during treatment)that not everyone could handle he shots throughout. They started the shots going into week 2 of radiation, 3 times a week (not every day). They also prescribed Zofran (anti-nausia)to take an hour prior to the shot. I really done ok with the shots until I got into my sixth week of radiation. At that point I was getting very sick, but it was not clear if it was the shots, or just the accumulative effects of radiation. The one thing for sure, at that point my Wife asked my RO why my neck, jaw, and chest was so "sunburned" but I had no evidence of burn around my cheek bones. He said "that's the amofostine shots doing thier job". That was enough motivation for me to make it through the last 5 shots I was to get. I have good saliva and my RO told me it will continue to improve for the next 6 months or so.
Hope I wasn't too long winded here. :-)

Thank you all for your information. I seen my ENT last week and asked him about salivary gland function after radiation. He said it shouldnt be an issue since they will be using IMRT and will be targeting just the area where the tumor was. It was agreed upon with the tumor board the neck/throat area was unneccessary. So, the plan is to remove two of my molar teeth on the lower right side, heal up from that and then Tx will begin...which I think should be very close to around the time of Christmas.

I had my flu shot last week which by Weds evening I was coming down with the flu so still feeling pretty rotten today. Im not sure if the tooth extraction will end up happening this week or next because of this.

Im still wondering are there any others in this group that specifically have salivary gland cancer? Im still baffled and angry with my diagnosis. Ive done some research on some of the typical causes for salivary gland cancer and found that radiation exposure, industrial waste exposure and woodworking can be factors for salivary gland cancer. Im trying to deal with an extreme amount of anger since I know for a fact that I was living on top of a toxic waste dump for three years. I have done some research and Ive also contacted someone about this. I know that it may be impossible to prove that is why I have this but when you get a diagnosis do you not question WHY? How do you all deal with the emotions that come with diagnosis, surgery, and treatment? I guess it isn't really that different from what Ive been dealing with since my daughter's diagnosis of cystic fibrosis six years ago (you just deal) but I do feel overwhelmed sometimes.

On another note, I hope you all managed to have a Happy Thanksgiving (for those in the US). I was exhausted after cooking and cleaning up after all of it. I still enjoyed the company and the following shopping day:).

Laura,

As you said you just deal. I'm glad you had a Happy Thanksgiving. Ours was good too. I went to Texas for my Tx so I was gone from Aug through Oct, so I'm happy just to be home.

I hope you get over the flu quickly.