Salivary Gland Cancer

appel

Looking for anyone who has salivary gland cancer, or specifically basal cell adenocarcinoma of the submandibular gland. I know it's rare, but looking for someone to share experiences with. thanks

AuthorUnknown

Hello,

You may want to do a search of the CSN website using the term salivary gland. You can type this into the search bar at the top of the page. If you find someone who has gone through this experience, you can contact them through the CSN internal email system.

Take care and be well,

Dana
CSN Dana

blackroze1000

Basal Cell Adenocarcinoma -- Parotid Gland Cancer
I know I am commenting on a very old post, but this is a very rare type of cancer I went through about a year ago, and I would LOVE to talk to anybody who has/had this or even knows anybody that went through this. I really need some support. I've been cancer free (from this cancer, anyway) for just over a year. I have most of my taste buds back, but my saliva is almost non-existent (I live on Biotene spray, mouthwash, gel, etc.). My biggest problem is still not being able to swallow. I can only eat things with a lot of butter, condiments, etc., and must have a lot of water to swallow it down with. I can barely eat beef, chicken, pork, etc., and forget about breads, cookies, crackers, etc., unless they are smeared thick in butter. I can get some pasta down with tons of sauce, but even that's hard. I just want to swallow again. Is there anyone else going through this whose shoulder I can cry on? I promise you can cry on my shoulder right back!

I found the CSN site just recently while looking for answers to my current problem -- breast cancer. Unreal. I feel like I'm a walking target for cancer. Anyway, I put off my PET scan to deal with the breast cancer treatment. Hopefully, I did the right thing. Needless to say, I'm a little overwhelmed right now and just need some feedback. Help!

sweetblood22

blackroze1000 said:

Basal Cell Adenocarcinoma -- Parotid Gland Cancer
I know I am commenting on a very old post, but this is a very rare type of cancer I went through about a year ago, and I would LOVE to talk to anybody who has/had this or even knows anybody that went through this. I really need some support. I've been cancer free (from this cancer, anyway) for just over a year. I have most of my taste buds back, but my saliva is almost non-existent (I live on Biotene spray, mouthwash, gel, etc.). My biggest problem is still not being able to swallow. I can only eat things with a lot of butter, condiments, etc., and must have a lot of water to swallow it down with. I can barely eat beef, chicken, pork, etc., and forget about breads, cookies, crackers, etc., unless they are smeared thick in butter. I can get some pasta down with tons of sauce, but even that's hard. I just want to swallow again. Is there anyone else going through this whose shoulder I can cry on? I promise you can cry on my shoulder right back!

I found the CSN site just recently while looking for answers to my current problem -- breast cancer. Unreal. I feel like I'm a walking target for cancer. Anyway, I put off my PET scan to deal with the breast cancer treatment. Hopefully, I did the right thing. Needless to say, I'm a little overwhelmed right now and just need some feedback. Help!

Hi blackroze
Well, you and I do not share the same diagnosis, but we do share the same problems. I had a neck dissection after they biopsied a swollen lymphnode on my neck finding SCC. It was about the size of a large lemon by the end, and I could feel two distinct lumps in there. They had to take my salivary gland and 23 lymph nodes, 3 were cancerous. I had radiation which ended 5-15-09. Very early on during treatment I lost my ability to swallow, and I had such bad mouth sores I could not even drink. I went from 4-20-09 to 10-09 without eating by mouth. I have had two dillatations to stretch my esophugus, and now I can swallow some things. Has to be very tiny though. I drink 95% of the calories I put in my mouth. By the time I manage to get a couple of table spoons of food down, I have had to drink 16 oz of drink, and I am full. I don't drink water, no calories. Have to drink things with nutrition, and calories.

My mouth is still extremely sore and dry. I cannot even tolerate biotene mouth products, they burn my mouth. Can't swallow any meat at all. Forget about bread, crackers, cookies, even with butter. Not happening. A lot of things hurt or burn my mouth still. I still cannot taste much. I made pastina yesterday, and put some alfedo sauce on it. After a couple of bites, which i could swallow, I got kinda gaggy because it was like eating paste. I only ate a few bites. I can taste some sweet things.

I am pretty frustrated. I can eat bananas, drink milkshakes with Bolthouse protein drinks. I still have my PEG tube in and I use Nutren 1.5 overnight. I was down to 88lbs. Now since I got my machine to feed me overnight I am about 93 lbs.

I have been very frustrated, and really regretted my choice to have radiation. If I would have known that I would not have been able to eat normally again, I would not have done this. I found this site a few weeks ago, and I am feeling a little better in the fact that I can now see that I am not the only one that is having trouble. Makes me feel less isolated, and that there are others that do understand, since we have to deal with people everyday that cannot fathom what we are going through.

I am sorry to hear about your breast cancer. I cannot imagine hearing that diagnosis after going through HNC.

blackroze1000

sweetblood22 said:

Hi blackroze
Well, you and I do not share the same diagnosis, but we do share the same problems. I had a neck dissection after they biopsied a swollen lymphnode on my neck finding SCC. It was about the size of a large lemon by the end, and I could feel two distinct lumps in there. They had to take my salivary gland and 23 lymph nodes, 3 were cancerous. I had radiation which ended 5-15-09. Very early on during treatment I lost my ability to swallow, and I had such bad mouth sores I could not even drink. I went from 4-20-09 to 10-09 without eating by mouth. I have had two dillatations to stretch my esophugus, and now I can swallow some things. Has to be very tiny though. I drink 95% of the calories I put in my mouth. By the time I manage to get a couple of table spoons of food down, I have had to drink 16 oz of drink, and I am full. I don't drink water, no calories. Have to drink things with nutrition, and calories.

My mouth is still extremely sore and dry. I cannot even tolerate biotene mouth products, they burn my mouth. Can't swallow any meat at all. Forget about bread, crackers, cookies, even with butter. Not happening. A lot of things hurt or burn my mouth still. I still cannot taste much. I made pastina yesterday, and put some alfedo sauce on it. After a couple of bites, which i could swallow, I got kinda gaggy because it was like eating paste. I only ate a few bites. I can taste some sweet things.

I am pretty frustrated. I can eat bananas, drink milkshakes with Bolthouse protein drinks. I still have my PEG tube in and I use Nutren 1.5 overnight. I was down to 88lbs. Now since I got my machine to feed me overnight I am about 93 lbs.

I have been very frustrated, and really regretted my choice to have radiation. If I would have known that I would not have been able to eat normally again, I would not have done this. I found this site a few weeks ago, and I am feeling a little better in the fact that I can now see that I am not the only one that is having trouble. Makes me feel less isolated, and that there are others that do understand, since we have to deal with people everyday that cannot fathom what we are going through.

I am sorry to hear about your breast cancer. I cannot imagine hearing that diagnosis after going through HNC.

Hello sweetblood
I am truly torn -- although I'm relieved that I've finally found someone that relates to my problems, I am so sad that you have had to go through it. I, too, lost the ability to eat or drink early on. It happened about 2 weeks into treatment. Then came the PEG tube for 5-6 months with Nutren. Thank God for that. I'm 5'10" and was 186. I am now 132. I tell people I finally went on a diet. Unfortunately, it was the hard way! I chose to do radiation because I was at Stage IV. I'm still glad I did it, but man, who knew it was going to be this tough. The other thing that really bothers me is the fact that my smile is gone. My heart sinks everytime I try to smile at a child, and instead I frighten them. Or when people look at me and you can tell they are thinking "what's her problem?" I have always done my best to be pleasant and friendly to people. Now I work extra hard when I speak with someone to show that there really is a nice person behind this ugly face. It breaks my heart sometimes. I moved from Illinois to Georgia due to my husband's job change, so now I am out of work. Then I got cancer again. I know when I'm ready to look for work, I will have a hard time because nobody will want to see my face everyday and that's understandable. If I were a boss, I would want to see a cheerful face everyday, you know what I mean? So now I'm thinking of trying to work from home doing something although I don't know what. I've been a legal secretary for over 25 years, and don't really know how to do much else so that's a little scary, too. Sorry for sitting on the "pitty pot," but right now, this is just where I am. Sometimes I just can't rise to the occasion and fight the good fight. How about you? Do you have any major facial issues that you are dealing with? I hope not, but if so, maybe you'd like to share your feelings here like me. I feel like this is a safe place to say these things, cuz if I said something like this to my friends or family, they'd feel all awkward and not know what to say . . .

Elaine

debbiejeanne

sweetblood22 said:

Hi blackroze
Well, you and I do not share the same diagnosis, but we do share the same problems. I had a neck dissection after they biopsied a swollen lymphnode on my neck finding SCC. It was about the size of a large lemon by the end, and I could feel two distinct lumps in there. They had to take my salivary gland and 23 lymph nodes, 3 were cancerous. I had radiation which ended 5-15-09. Very early on during treatment I lost my ability to swallow, and I had such bad mouth sores I could not even drink. I went from 4-20-09 to 10-09 without eating by mouth. I have had two dillatations to stretch my esophugus, and now I can swallow some things. Has to be very tiny though. I drink 95% of the calories I put in my mouth. By the time I manage to get a couple of table spoons of food down, I have had to drink 16 oz of drink, and I am full. I don't drink water, no calories. Have to drink things with nutrition, and calories.

My mouth is still extremely sore and dry. I cannot even tolerate biotene mouth products, they burn my mouth. Can't swallow any meat at all. Forget about bread, crackers, cookies, even with butter. Not happening. A lot of things hurt or burn my mouth still. I still cannot taste much. I made pastina yesterday, and put some alfedo sauce on it. After a couple of bites, which i could swallow, I got kinda gaggy because it was like eating paste. I only ate a few bites. I can taste some sweet things.

I am pretty frustrated. I can eat bananas, drink milkshakes with Bolthouse protein drinks. I still have my PEG tube in and I use Nutren 1.5 overnight. I was down to 88lbs. Now since I got my machine to feed me overnight I am about 93 lbs.

I have been very frustrated, and really regretted my choice to have radiation. If I would have known that I would not have been able to eat normally again, I would not have done this. I found this site a few weeks ago, and I am feeling a little better in the fact that I can now see that I am not the only one that is having trouble. Makes me feel less isolated, and that there are others that do understand, since we have to deal with people everyday that cannot fathom what we are going through.

I am sorry to hear about your breast cancer. I cannot imagine hearing that diagnosis after going through HNC.

Sweet, have your docs told
Sweet, have your docs told you that u won't be able to eat normally again or just until you recover from treatment? I am now 18 wks post trmnt and I hope with every week that my throat will be back to normal. Unfortunaely, my docs, ent and oncol, never told me one thing to expect!! NOT ONE! Everything I have learned, I learned thru the good people on CSN. So I'm wondering if my hoping is in vane?
God Bless,
Deb

debbiejeanne

blackroze1000 said:

Basal Cell Adenocarcinoma -- Parotid Gland Cancer
I know I am commenting on a very old post, but this is a very rare type of cancer I went through about a year ago, and I would LOVE to talk to anybody who has/had this or even knows anybody that went through this. I really need some support. I've been cancer free (from this cancer, anyway) for just over a year. I have most of my taste buds back, but my saliva is almost non-existent (I live on Biotene spray, mouthwash, gel, etc.). My biggest problem is still not being able to swallow. I can only eat things with a lot of butter, condiments, etc., and must have a lot of water to swallow it down with. I can barely eat beef, chicken, pork, etc., and forget about breads, cookies, crackers, etc., unless they are smeared thick in butter. I can get some pasta down with tons of sauce, but even that's hard. I just want to swallow again. Is there anyone else going through this whose shoulder I can cry on? I promise you can cry on my shoulder right back!

I found the CSN site just recently while looking for answers to my current problem -- breast cancer. Unreal. I feel like I'm a walking target for cancer. Anyway, I put off my PET scan to deal with the breast cancer treatment. Hopefully, I did the right thing. Needless to say, I'm a little overwhelmed right now and just need some feedback. Help!

can't imagine
blackroze1000, I had a hard enuf time making it thru one diagnosis of cancer, can't even imagine 2, espceially so close together. I am so sorry that you will have to go thru it all again. You will find this site will help you tho if you come here to post, ask questions and provide info for others. Like sweet, this is a place where I KNOW (unfortunately) that everyone knows what I'm going thru. People here are very friendly and always willing to answer questions. I hope you have someone at home with you who can physically be with you. Although you and the CSN dont' live close to one another, we are still a family who will be there. You will be in our prayers and I hope that you will keep us posted.
God Bless,
Debbie

sweetblood22

blackroze1000 said:

Hello sweetblood
I am truly torn -- although I'm relieved that I've finally found someone that relates to my problems, I am so sad that you have had to go through it. I, too, lost the ability to eat or drink early on. It happened about 2 weeks into treatment. Then came the PEG tube for 5-6 months with Nutren. Thank God for that. I'm 5'10" and was 186. I am now 132. I tell people I finally went on a diet. Unfortunately, it was the hard way! I chose to do radiation because I was at Stage IV. I'm still glad I did it, but man, who knew it was going to be this tough. The other thing that really bothers me is the fact that my smile is gone. My heart sinks everytime I try to smile at a child, and instead I frighten them. Or when people look at me and you can tell they are thinking "what's her problem?" I have always done my best to be pleasant and friendly to people. Now I work extra hard when I speak with someone to show that there really is a nice person behind this ugly face. It breaks my heart sometimes. I moved from Illinois to Georgia due to my husband's job change, so now I am out of work. Then I got cancer again. I know when I'm ready to look for work, I will have a hard time because nobody will want to see my face everyday and that's understandable. If I were a boss, I would want to see a cheerful face everyday, you know what I mean? So now I'm thinking of trying to work from home doing something although I don't know what. I've been a legal secretary for over 25 years, and don't really know how to do much else so that's a little scary, too. Sorry for sitting on the "pitty pot," but right now, this is just where I am. Sometimes I just can't rise to the occasion and fight the good fight. How about you? Do you have any major facial issues that you are dealing with? I hope not, but if so, maybe you'd like to share your feelings here like me. I feel like this is a safe place to say these things, cuz if I said something like this to my friends or family, they'd feel all awkward and not know what to say . . .

Elaine

I am usually not this completely honest, but screw it.
Debbiejeanne, the last time I went to my RO, I started to cry a bit and said, "I just want to be able to eat normally." He answered, "That may not be a possibility." He had never said that before. He was always, "hopeful" that I would be eating again.

Blackroze, yes, it bothers me that I look the way I do now. I realize there are people worse off than I am though. I have a pretty narly scar, if you click on the expressions page you can see my neck dissection. I have a bit of paralysis with my lower right lip. I have a 'quirky' smile. I sometimes forget that I cannot whistle anymore, and I have mostly learned to drink without dribbling all over myself. Mostly, I like to use a straw. I am still talking a little funny since radiation. Considering I completely lost my voice for a while, I supoose I should be happy I can talk. I have a sort of lisp, or something now. My 'sp' is hard to say, as well as 'th'. I feel like people notice I sort of talk out of the right side of my mouth. I am pretty self concious when people look at my mouth when I talk.

I learned to be smiley working with the public. I have one of those faces that if i don't smile all the time, I look like a royal beyotch. Most people are afraid of me, or think I am cranky or better than them, till they talk to me. I don't 'see' it, but that is what I am told and have tried to make an effort to be extra nice and smiley, but it still happens. i magine if i wasn't trying. lol

I am or was I guess, a workaholic. The only thing I did for fun was sing with an 86 member Chorale, and my church choir. I sang 2nd soprano, every sunday with church, and 2 concerts a year with the chorale. It kills me that I can no longer sing. I tried at christmas and could croak about one line, and my lips were stuck to my teeth. I get too dry even talking.

I had a good outlook, and felt better going through treatment. Now, I am having a bit of trouble. I never thought I would be so fragile, and still in pain, and not eating. I had a self esteem issue for a while when I left my husband for cheating on me, after 15 years of marriage. It really knocked my self confidence. I had one date since my divorce in 2008. I felt like crud, thinking no one would want me. Now, after this whole cancer thing, and looking and being the way I am I figure I am really doomed to spending my life alone with my dog. I get pretty lonely. So, believe me. I can relate. If i say anything about my lack of person in my life, friends and family tell me to get over the cancer and get well first. Not to worry about that right now. Or be happy you are still alive. Okay, then they go home and get to hug and hold their spouse, where does that leave me? I get pretty lonely.

I have not worked for 13 months. There is no way I can ever do what I used to do. I had a very physical job, and had to work a minimum of 48 hrs per week. I cannot physically do the job now. I had been torn as to whether I should apply for disability, and I decided to. I am afraid that I am not going to be able to support myself anymore. I am not physically capable of working that much. I was a retail store manager. I have worked like a dog, 60-65 hrs a week, managing people to make the salary I was making. I live out in the sticks, and I am thinking even if I can work part time how the heck am I going to support myself. And insurance? I know my cobra is going to be running out. That just went up to over $400 a month. I am trying to not be anxious over these things, and keep focusing on just trying to gain weight, try to eat, and keep praying.

I cannot imagine another cancer diagnosis at this point, so I don't know how you are coping. You are stronger than I am, that's for sure. You have my complete admiration.

Finding this site has been helpful, at least I know that there are other people that are in the same boat I was, and I am. Unless you have been through HNC you really would not understand how painful emotionally and physically it can be. I am seeing a crack of light at the end of the tunnel, and thinking it may not be an oncoming train.

blackroze1000

debbiejeanne said:

can't imagine
blackroze1000, I had a hard enuf time making it thru one diagnosis of cancer, can't even imagine 2, espceially so close together. I am so sorry that you will have to go thru it all again. You will find this site will help you tho if you come here to post, ask questions and provide info for others. Like sweet, this is a place where I KNOW (unfortunately) that everyone knows what I'm going thru. People here are very friendly and always willing to answer questions. I hope you have someone at home with you who can physically be with you. Although you and the CSN dont' live close to one another, we are still a family who will be there. You will be in our prayers and I hope that you will keep us posted.
God Bless,
Debbie

Debbiejeanne
Thanks so much for your support, Debbie. I'm glad I found this site, too. I wish I would have found it when I was going through head/neck cancer, but that's OK -- I found it now. Everyone has been so friendly here. I love it. It really does feel like family, only better because everyone knows exactly what I'm feeling and what I've gone through and am still going through. The only other person I could really open up to was my Mom. She moved to Georgia with us, but the day we were to move into our new home, she suddenly became ill and ended up passing away. She never even saw her room. I miss her so much. So basically life has been pretty crappy for a while now. I keep waiting for the light at the end of the tunnel, too. Well, I better get some sleep. I've got radiation first thing in the morning. Thanks so much for keeping me in your prayers!

Elaine

blackroze1000

sweetblood22 said:

I am usually not this completely honest, but screw it.
Debbiejeanne, the last time I went to my RO, I started to cry a bit and said, "I just want to be able to eat normally." He answered, "That may not be a possibility." He had never said that before. He was always, "hopeful" that I would be eating again.

Blackroze, yes, it bothers me that I look the way I do now. I realize there are people worse off than I am though. I have a pretty narly scar, if you click on the expressions page you can see my neck dissection. I have a bit of paralysis with my lower right lip. I have a 'quirky' smile. I sometimes forget that I cannot whistle anymore, and I have mostly learned to drink without dribbling all over myself. Mostly, I like to use a straw. I am still talking a little funny since radiation. Considering I completely lost my voice for a while, I supoose I should be happy I can talk. I have a sort of lisp, or something now. My 'sp' is hard to say, as well as 'th'. I feel like people notice I sort of talk out of the right side of my mouth. I am pretty self concious when people look at my mouth when I talk.

I learned to be smiley working with the public. I have one of those faces that if i don't smile all the time, I look like a royal beyotch. Most people are afraid of me, or think I am cranky or better than them, till they talk to me. I don't 'see' it, but that is what I am told and have tried to make an effort to be extra nice and smiley, but it still happens. i magine if i wasn't trying. lol

I am or was I guess, a workaholic. The only thing I did for fun was sing with an 86 member Chorale, and my church choir. I sang 2nd soprano, every sunday with church, and 2 concerts a year with the chorale. It kills me that I can no longer sing. I tried at christmas and could croak about one line, and my lips were stuck to my teeth. I get too dry even talking.

I had a good outlook, and felt better going through treatment. Now, I am having a bit of trouble. I never thought I would be so fragile, and still in pain, and not eating. I had a self esteem issue for a while when I left my husband for cheating on me, after 15 years of marriage. It really knocked my self confidence. I had one date since my divorce in 2008. I felt like crud, thinking no one would want me. Now, after this whole cancer thing, and looking and being the way I am I figure I am really doomed to spending my life alone with my dog. I get pretty lonely. So, believe me. I can relate. If i say anything about my lack of person in my life, friends and family tell me to get over the cancer and get well first. Not to worry about that right now. Or be happy you are still alive. Okay, then they go home and get to hug and hold their spouse, where does that leave me? I get pretty lonely.

I have not worked for 13 months. There is no way I can ever do what I used to do. I had a very physical job, and had to work a minimum of 48 hrs per week. I cannot physically do the job now. I had been torn as to whether I should apply for disability, and I decided to. I am afraid that I am not going to be able to support myself anymore. I am not physically capable of working that much. I was a retail store manager. I have worked like a dog, 60-65 hrs a week, managing people to make the salary I was making. I live out in the sticks, and I am thinking even if I can work part time how the heck am I going to support myself. And insurance? I know my cobra is going to be running out. That just went up to over $400 a month. I am trying to not be anxious over these things, and keep focusing on just trying to gain weight, try to eat, and keep praying.

I cannot imagine another cancer diagnosis at this point, so I don't know how you are coping. You are stronger than I am, that's for sure. You have my complete admiration.

Finding this site has been helpful, at least I know that there are other people that are in the same boat I was, and I am. Unless you have been through HNC you really would not understand how painful emotionally and physically it can be. I am seeing a crack of light at the end of the tunnel, and thinking it may not be an oncoming train.

Sweetblood
Everything you said really hit home and I applaud your honesty. The whole left side of my face is paralyzed, so I can't blink (that's been interesting) nor smile. If I clench my teeth together really tight, I can make my mouth look horizontal, but then I can't talk with my teeth clenched, right? Catch 22. My 'sp' and my 'b' and my 'm' and my 'v' and my 'w' (the list goes on and on) do not come out right. Very frustrating.

I, too, love to sing. I sang many moons ago in my school choir for all four years, and basically continued to sing all these years to any song that comes on the radio. But due to the radiation, my voice became very deep. Now I can finally sing all the "guy band" songs without too many problems.

I'm so very sorry to hear about the breakup of your marriage. I can't imagine going through something like that and then cancer, too. And you say I'm strong? Talk a good long look in the mirror and you'll see a wonderful woman who is stronger than she knows . . .

As far as the job situation goes, I think all we can do is pray. It's in God's hands and He'll take care of us. The worst part is the not knowing when it's all going to get better. They say He has perfect timing. I just hope He'll meet us half way!

I feel better already writing about everything that's been going on with me physically and mentally. You're right. People really do mean well, but unless they've gone through it, they'll never truly understand. God bless them, though, for trying. Thanks for being here for me. I appreciate it more than you know.

Elaine

Alicestar26

salivary gland cancer not yet diagnosed basal cell
Hello I am new to this forum. I am a mother aith 5 children. My youngest has cardiomyopathy and have I have pain present most of the time from a parotid tumour which they are not sure if malignant or benign
I have constant pain in my R ear and did for 2 weeks before my operation on parotid tumour and now 4 months cannot get away from this pain. My FNA needles before surgery were not diagnostic. My tumour was in posterior parotid - which is rare and in both superficial and deep and was hard as a rock. i found it coming out the back of my head. I was told it was coming out the back of my head through my right temporomandibular joint. i was told the nerve was dissected out of the tumour. I have not had any radiation. I have read that malignant basal cell adenocarcinomas can look like benign basal cell adenomas under microscope and with staining.
also now on my face ultrasound shows is salivary tissue (?tumour or scar tissue) on same side but instead of behind my ear this salivary tissue which is growing is lower down on angle of face which was 15 x3 mm on 6/1/2011 which was 1 week after surgery; to now is 49x 21 x 7mm 4 months after surgery. I also notice my eyesight has diminished quicker than expected.
Does anyone have any ideas what could help me?
I will try alternative as do not know wh to see for parotid tumour to work out what else is useful for me
Also when I look at back of my mouth it is now looking much further back behinf my back teeth but there is not any way to measure this
I am 54 and am hoping to get rid of the pain and to find a good specialist and have treatment tohave more life
Can anyone please help with any information regarding my salivary gland- parotid tumour as I am hoping for a future Thankyou