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just diagnosed with salivary gland cancer

MorganS's picture
MorganS
Posts: 7
Joined: Mar 2010

Hi, i'm new to the site. I'm only 21 and i was diagnosed with acinic cell carcinoma of the parotid salivary gland last month. i am 3 weeks out of surgery (they removed most of it but couldn't get to some that was below my facial nerves) and am waiting to move up to Seattle for neutron radiation.
I think i'm still in shock, i still have another year of college and have so many goals and my only problem before was which should i do first. now, i don't even know if i'll be able to achieve any. if anyone has any advice that you think would be helpful before i do radiation or anything else, i'd love to hear your input.
thanks, morgan.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Morgan,

I was diagnosed 1-18-10 with Scc primary right tonsil. I have had a right side neck dissection, tonsillectomy, and several lymph nodes removed. I am now on my 10th day of chemo and radiation treatments and all in all I am doing fairly well, considering some
reports of what I see people having to endure. While my subject title says Welcome, the only thing that refers to is that you have found this site. There is a wealth of information here for you, all you need do is ask. I am 52 and thought I was way to young for this, but it can and does affect all ages and types no doubt. I am sorry you have this struggle to contend with. But know this, your life is not over as you will see upon further study of this site. There are many strong and willing people that will help you on this site. So what ever your question may be just ask and someone will talk to you about it.

Best,
Steve

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Morgan,
Sorry to hear of your diagnosis but sounds like you were early to catch it. You might post what staging etc for others to contribute.

I had SCC of the Left tonsil (Aug '09), surgery through the mouth to cut it out but not radicalized so 10 days later started Erbitux (target Chemo) and IMRT (Intensity Modulated RadioTherapy) for 7 weeks (70 Sessions). When I was diagnosed and during the surgery time I detoxed and got into a bunch of supplements as advised by my Naturopathic Doctor. I went mostly vegetarian as this line of thinking ie the 'Anti-Cancer diet' means no animal proteins and no processed foods, sugars etc. This is a personal choice and there advocates for and against. I am convinced there is substance to using diet and nutrition to help you get through, recover and avoid further events with this beast. Ensure any such practitioner has Cancer related experience.

I had a rough period through the treatment (Pain, eating) and was admitted full time for 4 weeks as well as 2 weeks post treatment. I had a PEG tube (Feeding tube) put in week 3 and kept it for 2 months after treatment ended. There are plenty of threads here about PEGS but find out if your Docs think you need one. If so, you can get one before or during treatment.

We all react differently so one can't really determine exactly what will happen and how well you cope but the main thing is that you can and will get through it. You might inquire with your docs (not sure about Neutron Radiation sorry) the drug that is supposed to preserve your salivary glands during radiation. Loss of saliva is probably the most complained about side effect so look into that. There are posts on it here.

Your Doctor should inform you of potential side effects, level of pain, Chemo with? etc so work from there. Get back on here when you have more info or post away as there are plenty of good people here to help you out. I'm sure there will be plenty of good posts following my little bit.

Get yourself informed and remember no question is a dumb question here. Keep positive and an "I am getting better" attitude and get support when and where ever you need it.

Ciao fa now
Scambuster

MorganS's picture
MorganS
Posts: 7
Joined: Mar 2010

actually, after the surgery my doctor said that the tumor had been there for at least a year so that scared me. But he said that it's stage 1 and slow growing so i guess it technically was caught early (at least before it could spread, thank goodness). my doctor said it's the "best worst news" -to find out that it's stage 1.

I can't imagine having a feeding tube put in, i'm such a baby when it comes to needles and pain.. I think my doctor said the only thing i need for radiation is a tongue guard but i haven't gone in for the consultation up in Seattle yet so we'll see. And about the loss of saliva, my right salivary gland was removed with the tumor so i guess i should be prepared to drink lots of water?

I've been a vegitarian for the last 4-5 years so going on that "anti-cancer diet" sounds doable. (though i do love chocolate..)

thanks again,
morgan

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

as one who is down a salivary gland, i can tell you that you may experience more intense side effects with your mouth than those with two salivary glands. its been like 9 months or so, and i am still dry as dust., and struggle with eating and pain. i feel like i could spit rattle snakes and sand. i would really do research on getting a peg, and work with a nutritionist. a lot of head and neck patients die of malnutrition. i am totally not trying to alarm of scare you, but it is so painful. you may not be able to take anything by mouth. i could not do food or drink for months. even water was burning my mouth. the radiation also closed my throat down to 2mm. but, i had and unknown primary, so i had a lot of radiation. also, since you only have one salivary gland you may also want to research amophostine which is injected about a half hour before table time, and that is supposed to help perserve your remaining salivary glands. there can be some side effects with the amophostine. so i took a benedryl, and tylenol because it can cause a rash and spike a fever. you have to tell the docs right away if those happen. the shots also burned and hurt going in. they would alternate the shots on the backs of my arms. i bruise like fruit and was solid with black and blues, but i cannot imagine how bad i would be without getting those shots.

just letting you know what happened with me. i must admit, i might be the worst case senario. some of the others had a bit of any easier time and some even ate through treatment. just somethings to look at and question. it may turn out to mot be relevant in your case, but it can't hurt to ask questions about it, and find out. as i said before, i really wish i was better prepared going in, and wish i found this site. and believe me, i did a lot of research on stuff, but i did not get everything.

when they put in the feeding tube you are out of it, so you won't remember it. believe me i am a scaredy cat, and if i can do it, anyone can.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I am so sorry that you have to go through all of this at such a young age but believe me when I say that it is all doable. I think everyone, when they hear the word cancer, automatically thinks their life is over. It's not!!! I was diagnosed with inoperable Non Small Cell adenocarcinoma in my left lung in May '09 and then Squamous Cell Carcinoma of the larynx a couple of weeks later. Both inoperable - naturally my first thoughts were that my life was over.

I am now 5 months post treatment and doing fine, I have some side effects from the chemo and radiation but they are nothing so serious that I am not able to enjoy my life, my family and my friends. Unfortunately neither of my cancers are gone but they are treatable and I am quite confident that with my doctors help I will be around for many years. It has made me appreciate life more and I make sure that I live each day to its fullest. I notice things that I took for granted before and am thankful for everyday I have.

Unfortunately I am not familiar with the neutron radiation, is this a more targeted radiation?? I had 35 sessions of radiation on my throat and 4 sessions of Stereotactic Radiosurgery on my lung. The Stereotactic Radiosurgery is a more targeted radiation that does not destroy the healthy cells like the traditional radiation does.

My advice to you is eat, eat, eat!!! Most of us on this site have lost weight due to treatment and it may be to your advantage to gain a few pounds now while you are able to enjoy food. One of the side effects of radiation is it plays havoc with your taste buds and food does not taste good for several weeks. It does come back but while it is gone it is rather difficult to eat, most foods taste like crap. Also, be sure to drink plenty of water, you need to stay hydrated so your body can heal itself.

You also need to keep a positive attitude, this is very important as it will help you through the rough spots. A lot of us here are "older" people (LOL - I never thought I would hear myself say that I'm old) and we have survived all of the ups and downs of cancer and the treatments you have to endure.

Please keep posting so we know how you are doing. We all care, you now have a very large extended family on this site and we will help you through this. Whether you have specific questions, concerns or if you just need to vent your fears - we are here for you.

Take care and stay strong,
Glenna

MorganS's picture
MorganS
Posts: 7
Joined: Mar 2010

thank you for your response, hearing all of your stories on the site make me feel much more optimistic about my situation. I really had no experience with close friends or family dealing with cancer before i was diagnosed so it's that much more of a shock.

The neutron radiation (as opposed to proton or electron) is just a more concentrated/powerful treatment as far as i can tell (so good news is i only have to go to 4-5 weeks of radiation instead of 7) Also, it's supposed to be the most effective with parotid salivary gland tumors in particular.

thanks again for your support =)

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

How strange, I thought I posted to you last night, but it is not here. Sorry, that you are having to go through all of this.

I found a swollen lymph node, and it turned out to be SCC when biopsied. They did a modified radical neck dissection 1-09-09. They took my salivary gland and 23 lymphnodes, 3 were cancerous. I had a Tumor Board at my hospital, all the doctors from the different departments come together and work on your case. I don't think that happens in every hospital, and would reccomend that.

Had my wisdom teeth and the ones next to them pulled in preparation for radiation, and a PEG Tube placed.

I went for 3 opinons becuase I am also a Fanconis Anemia patient. We cannot tolerate chemo. Was scared about the radiation. I ended up starting IMRT radiation 30 treatments 200 CGY per day, 6,000total, 5,000 regular, 1,000 neck boost. That was 4-06-09 to 5-15-09.

I am unfortunately still having some problems with the side effects from radiation. My mouth is still painful, and extremely dry. I cannot swallow very well and I have to have a 3rd dillatation. The radiation made my esophogus stricture to 2mm. Even with the PEG I ended up getting sick and I went down to 88lbs. They got me a pump for overnight, and I managed to gain 6 lbs in a month. I seem to be behind the healing curve. Most people here could eat this far out from treatment and no longer rely on their PEG for nutrition.

Do searches on the site, there is tons of info. I wish I would have found this before I did my radiation. Feel free to ask anything to me.

also have they said why you had such a rare cancer so young? like a genetic predisposition or something? if that is too personal to ask, i apologize. i am not trying to pry, i am just wondering since my head and neck cancer is a result of my fanconis anemia.

best of luck to you.

MorganS's picture
MorganS
Posts: 7
Joined: Mar 2010

thanks for your input. unfortunately, the doctors i've talked to have no answer for why i got such a rare cancer at my age, though they do say it's mostly likely not genetic. My parents think it might have something to do with me living near a Jet Propulsion Lab (radioactive waste?) because another girl exactly my age who lives in the town over was diagnosed last year. she's doing well now and going to Stanford.
thanks again.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Glad you found your way to this site - sorry you are in a position to be needing to find it. You've found a wonderful, experienced, caring community. Lots of folks are here to help. If you have questions, or just need a pick-me-up, ask.

Diagnosed late October 2009, I have 7 more radiation sessions and one more chemo session to go to (hopefully) complete my treatment for scc, base of tongue IV.

Along with echoing the "eat, eat, eat", I'd have to add "DRINK". Get yourself acclimated to getting in lots of water, if you haven't already. Not sure what you're able to do at this point after surgery - assuming you're drinking and eating some foods. Also, stay as physically active as you can (within reason). My only other advice at this time is get used to hearing all of us say "check with your doctor" - I tell my doc everything.

Don't know if you're still attending classes. If not, please be sure you have things to do to occupy your mind part of the time. It helps me to not be sitting around all the time, focusing on me. Having said that, you still need to be sure to not neglect yourself, and make sure that taking care of you is first - distracting your thoughts comes later.

Do well,

- Pam

MorganS's picture
MorganS
Posts: 7
Joined: Mar 2010

thank you. i am still taking classes, i've missed a lot of class because of the surgery but i really want to finish out the quarter so i don't have to retake anything. The good thing is i have a disabled students advisor that's helping me through everything (like being able to park on campus instead of biking 15 minutes and getting extensions on my papers etc).
i wish i could be more active, i used to do 100 jumping jacks every day but now i just do stretches, i've been weak since surgery..
thanks again, Pam

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

Morgan, please let us know how you are doing now. It has been quite a while and I'm hoping your done with treatments and are on your way to recovery.
God Bless you friend,
debbie

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

Hi Morgan. I cannot express how sorry I am that you were diagnosed at such a young age. I have to echo what everyone else said, eat, eat, eat, and drink, drink, drink (water) while you can. I was diagnosed with SSC in Aug. 09. Had 35 radiation treatments. The side effects are many but hopefully only temporary. I am 4 months post trmnt and I still can't eat many foods or drink coffee. Choc is one of the things I can eat, not to mention peanut butter and peanuts. There are many more but those are the ones I really miss. My throat is still very swollen and I spend a lot of time coughing. I lost 70 lbs during my trmnts and the last 4 months. I also still have a metal taste in my mouth and have to brush my teeth 5 to 6 times a day. The radiation burned my neck very, very bad and it was quite painful, but it cleared up quickly with aquaphor.
I wish you the very best and please keep us posted as to how you're doing. I will put you in my prayers with the rest of the extended family. Good luck.
God Bless You,
Debbie

MorganS's picture
MorganS
Posts: 7
Joined: Mar 2010

Debbie,
thank you so much for the kind words. Although i am sorry to hear about all of the pain and side-effects that you've gone through (and everyone else here), it's comforting to know that there are others out there that have gone through the same thing and are doing well.
thanks again,
Morgan

Fire34
Posts: 353
Joined: Feb 2010

Morgan
You will be able to achieve any thing that you set your heart & mind desires. Definetly take care of yourself first & formost. Your goals will still be there when you finish treatment. I found out going thru mine that the PMA was really needed and also a great support person who keeps egging you on when things start looking down also helps. I believe we are all in shock when you get the news, in my case my wife more so. Do you know about chemo yet? Keep a Positive Attitude and best wishes
Dave

Michael Abrams
Posts: 4
Joined: Mar 2010

Dear Morgan

I am sorry to hear of your cancer and impending radiation. I face my first in six weeks of planned radiation tomorrow after my surgery for mucoepidermoid cancer of the salivary gland (grade 2 cancer). As a nurse told me "you aren't the first and won't be the last" to undergo this, and that was some small comfort, but I guess that the good wishes and prayers of friends and family have been the most meaningful to me. As I am the world's worst patient, I hope to be able to absorb the optimism and positive attitudes I need and wish you the best as we both face all of this.

Regards

Mike

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

welcome to CSN, glad to have you here with us, sorry to hear you have this nasty stuff but you will find a lot of help and support here, all the best to you are you start treatment.

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

Like everyone I too want to welcome you here to CSN, here you will find a lot of help and support. I know cancer is a scary thing but I want to assure you there is life after cancer

MorganS's picture
MorganS
Posts: 7
Joined: Mar 2010

thank you, i think i'm finally getting it through my head that everything will be ok after all, that there is life after cancer

i just got back from Seattle for my consultation with the radiation team that'll be working with me at the Univ. of Wash. Medical Center. I had my mask and mouth stint made. I don't know if anyone else had this problem, but it's really hard for me to swallow with the stint in, and i'm afraid i'll be unable to swallow and choke or something because i can't take the stint out while i'm bolted to the table. does it get better with time or should i have it reshaped? I also had another PET scan done, and the nurse missed my vein the first time so my arm is really sore.
The good news is i'll only need to go through 16 treatment (4 weeks) of radiation because i'm doing neutron therapy instead of electron.
now i just have to study for my three finals i have on tues and wed.. but it's really hard to concentrate with all of this other stuff going on in my life.
oh, and i found out that i have to get my wisdom teeth pulled and two cavities filled before going through radiation, so i'm going in for that on friday. i'm really not looking forward to it but at least it'll be over with.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Morgan,

Your mouth Piece should NOT cause you grief so maybe get it reduced. Make sure the hole in the mouth piece is a good size so you can suck in air without effort. There is long thread earlier for Mike n Steve on prepping for Rad sessions and the mask.

In brief, learn and practice before (like now) and in your earlier sessions - to breath through both your nose and mouth at the same time and also consciously make sure you can switch between the two. Get some practice doing this. This will help you relax. Most of us developed very heavy mucus after a couple of weeks and this can freak you out if you think you will gag during a session. You can usually just switch and breath through your nose without a problem.

I also used a nasal spray before every session. I made sure i coughed and hacked before each session to get the muck out of my mouth and throat before going in. That may not start till the second or third week depend how you respond.

Learn how to relax. Often you can focus on your breathing and zone out during the sessions and they are over in a flash.

Work out a signal system with the Techs so they can come in and unstrap you if you are having difficulty. Usually you just raise you arm and they will stop and come in.

Some people opt for some mild sedative (Xanax?) so that is also an option if you are prone to claustrophobia.

I hope these few tips help. more on the way I'm sure.

Hang in there, you will be fine.

Scambuster.

mm _81
Posts: 1
Joined: Mar 2010

Hi I have been diagnosed with acinic cell carcinoma of left parotid gland in Sept 09. I underwent a total perotidectomy and only started movin parts of my face a month ago. I also had 6 weeks of radiotherapy- I was not fully prepared for that. First 3 weeks were bearable and the pain was managed through some mild painkillers. next stage was a bit more tricky.. I had complete loss of taste, loss of hearing in my left ear, horrible ulcers and burns inside left cheek, left side of tongue and throat and loss of hair around ear and neck. I was in a lot of pain (had to be given morphine) but i managed somehow to push through without having a feed tube inserted (eat,eat,eat, and drink, drink, drink is a very good advice trust me on this)although I have met someone who was less lucky..... I finished my radiotherapy mid Jan 2010. I have now returned to work (on a part time basis) and am slowly getting my life back. Do not be put off by slightly longer recovery periods... at the end of the day do this right and you will then have the rest of your life to do everything you ever wanted......do not push yourself and honestly take it easy... no stress (during the treatments at least) AND LOTS OF LOVE AND CARE FROM FRIENDS AND FAMILY IS A MUST... I was really lucky to have my parents and my friends there with me through all this.... my friend even gave up on everything i couldnt do so i wouldnt feel left out.....good news is that this is low grade cancer and the prognosis is very good once surgery and radiotherapy have been done.... I hope this helps you a bit more and i wish you strength and love and see you on the other side.....

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

would just like to welcome you here to CSN, great post and glad to hear you have passed through the fire and doing well.

All the best to you

LLeslie
Posts: 2
Joined: Sep 2009

Hi Morgan,
I felt horrible to hear of your diagnosis especially at such a young age. I was diagnosed with a parotid tumor in 2009. I am 46 and was 45 at the time of my diagnosis. I had to wait a few months before my surgery because I was diagnosed hyperthyroid in January of 2009.My thyroid needed to be regulated before I would be cleared for surgery. My biopsy was benign so it was a shock to get my final pathology that said there was a slight malignancy. My surgeon said he would have taken more tissue if he knew he was dealing with cancer. It was a 9mm tumor. He sent me to an oncologist, a radiologist and a head and neck cancer specialist at Emory in Atlanta. They all said my margins were clear so there was no need for more surgery or radiation. A head and chest CT was done following my diagnosis and it was clear as well. The head and neck doc saw me every 6 weeks at first and now every eight weeks. I am nine months clear, but am still worried that this will come back to haunt me. Please let me know how you are doing with your radiation. I would love to hear any information in case I will be following that path in the future. Nutrition and exercise are my hobbies and I have always had excellent health up until the thyroid problems (it is Graves) and cancer diagnosis in 2009. I am very fortunate to have a wonderful husband, two daughters (age 14 & age 12) and a huge network of supportive friends and family!

Tanager75
Posts: 87
Joined: Aug 2009

SCC left tonsil, 2 lymph nodes, chemo and radiation. I just got done with about my 20th bottle of water today. I miss having spit available. I hope what you get for treatment will spare you some of the side effects people have told you about. Stay positive and good luck on the finals. I liked essays better then multiple guess.

Peace,

mark

Jessica3503
Posts: 2
Joined: Jun 2010

I have been diagnosed with acinic cell carcenomia as well- age 26. I assume you are done with radiation? Not sure if you will get this, but if you do please let me know how it went! I start next week!

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

Jessica, welcome to CSN. I'm very sorry to hear of your cancer, especially at such a young age. I'm not familiar with that type as I had cancer of the voice box. I am now 8 months post trmnt and starting to get back to normal (my new normal) finally.
I will put you in my prayers. Keep coming here as you will find people here who have been where you are, have already had treatments and are now in the recovery stage. People here are very friendly, truly care, and are a wealth of info. You will find great support and encouragement here also. Please stay positive, well, as positive as you can be, it is very important. When you have a rough day and need to vent of just talk to someone who TRULY KNOWS WHAT YOU ARE FEELING AND GOING THRU, come here and you will find that someone. I wish you all the best. Please let us know how you are doing.
God Bless you,
debbie

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Jessica,

I, too, am sorry you have a reason to be here, and glad you found the site. I have no experience with/knowledge of acinic cell carcinoma, but am hopeful someone with knowledge will see your post and step up.

If you have any questions about your treatment, please feel free to post them. Lots of helpful people here can provide you with lots of great info and tips.

Do well,

Pam

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

jessica, I didn't want to ask b/c I didn't want to look stupid but I have to. What is acinic cell carcenomia cancer? I hope you will forgive my ignorance.
God Bless You,
debbie

Jil
Posts: 5
Joined: Jul 2010

So sorry and no doubt like everyone here, I know the fear and the shock of it all. I cried every day for months - the whole family got used to it, often cried with me, and learned beautifully how to just let whatever needed to come out that day express itself and we'd move on.... Initially I felt so much shock, I felt as if all of a sudden I had been robbed of my good health and terrified of the future. But somehow getting started on treatment helped, I thought of it as getting on board the train to wellness.

Doing what needed to be done and taking the very best care I could of myself, letting others help, and NOT thinking about the future was all of great benefit. Mine was staged T4. It has only been 7 months since my journey with this cancer began - I had a nine hour surgery & 30 radiation treatments. For me, a relatively healthy and quite active 54 year old, it really wasn't as bad as my fears. I wasn't too bothered by the side effects until the last two weeks of treatment; lost a good size patch of hair behind my ear (the rest covered it up) sores in mouth, lack of taste buds, nausea, fatigue, . I did not have much of an issue with dryness even though the salivary gland was removed - maybe a little drier than usual during radiation, but now 7 months later, no problem at all.
I made a lot of effort to get exercise, get out in nature, eat well, take supplements and find some fun each day whether from my kids, my husband, a movie, a dance - whatever! Be strong, keep moving, walk tall, and look for a little joy in each day. All the best to you! jil

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