Newly diagnosed adenoid cystic carcinoma in submandibular gland

Lif Ane
Lif Ane Member Posts: 3
edited March 2014 in Head and Neck Cancer #1
I was just diagnosed with this apparently uncommon cancer. I have not found very much about it online. I would love to hear from anyone familiar with this. I am scheduled for resection of my gland and selective resection of some lymph glands as well. I will be having radiation treatments after surgery but no chemotherapy (not very effective with this cancer). I have alot of support but can certainly benefit from your support as well. I have lurked a little bit and love how positive yet realistic you are.
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Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Lit Ane

    I can’t help with this type of cancer, but I can welcome you here to CSN. I guess we all have a different type of cancer I am NPC which is also a rare type of cancer here in the USA but not in the rest of the world.

    I wish you all the best in your treatment and hope that someone here can help you with the info you need.

    All the best
  • Lif Ane
    Lif Ane Member Posts: 3
    #3
    Hondo said:

    Hi Lit Ane

    I can’t help with this type of cancer, but I can welcome you here to CSN. I guess we all have a different type of cancer I am NPC which is also a rare type of cancer here in the USA but not in the rest of the world.

    I wish you all the best in your treatment and hope that someone here can help you with the info you need.

    All the best

    Thank you Hondo. I am sure
    Thank you Hondo. I am sure that I will be having alot of general questions as well as specific ones on my cancer. I think just browsing the posts on this board will be very beneficial and if I find anyway I can help I certainly will be happy to.
  • ballonk
    ballonk Member Posts: 39
    #4
    Welcome
    Hi Lif Ane: I'm not familiar with your type of cancer but did an online search and here's a web link with lots of other resource links for Adenoid Cystic Carcinoma:
    http://www.rare-cancer.org/adenoid-cystic-carcinoma/.

    Welcome to this site; I'm sure you'll find a lot of support here. Sending warm wishes and hugs your way!

    Kathy
  • Lif Ane
    Lif Ane Member Posts: 3
    #5
    ballonk said:

    Welcome
    Hi Lif Ane: I'm not familiar with your type of cancer but did an online search and here's a web link with lots of other resource links for Adenoid Cystic Carcinoma:
    http://www.rare-cancer.org/adenoid-cystic-carcinoma/.

    Welcome to this site; I'm sure you'll find a lot of support here. Sending warm wishes and hugs your way!

    Kathy

    Thank you Kathy
    I have joined the rare-cancer forum also. All info helps - there does not seem to be much out there for this particular cancer.

    All wishes and hugs returned! I have always been a big hugger and even virtual hugs are great!
  • deb5fun
    deb5fun Member Posts: 4
    #6
    Newly diagnosed adenoid cystic......
    I was diagnosed on October 8. I had my gland removed September 30. Initial pre-surgical biopsies came back negative, but once the entire gland was sent to pathology, it came back positive. I went through radiation. It wasn't horrible, lol! It's funny how little you hear about it. My oncologist told me she has someone in her 20s she's been treating, and the prognosis is very good. It seems to reappear after a long time, from what I understand, most commonly in the lungs. My doctors told me 15-20 years, if at all. Still, there's always the fear that lies underneath. I'm told it's quite common. I didn't have too much trouble eating while I had the radiation, as long as I kept with bland, soft foods. The 2 weeks immediately following the treatments were rough, but right after I started feeling better. I'm glad you have a lot of support. I am single, so it was a bit hard. I have a lot of friends who love me very much, but the days when you feel the worst, it's nice to have someone there to help you out. Be sure to let me know if you have any specific questions as you go through your treatments. I'll try to help as much as I can. Know also, that prayers surely do help.
    Take care!
  • ladyartprof
    ladyartprof Member Posts: 2
    #7
    adenoid cyctic carcinoma
    Hi Lif Ane, My name is Sharon. I was just diagnosed too and had surgery May 4, 2010. I had 3.3 cm tumor in the submandibular glad with limited perinural invasion and also one lymph glad affected as well. I am getting a thorax scan to check for mets in my lungs, but they don't think it has metasticized at this point...we'll know more after the scan. I am scheduled to begin radiaiton in late June. So it is all new to me too and I have many questions. I have readydozens of success storis on the ACCOI (Adenoid Cyctic Carcenoma Organization International) site here: http://health.groups.yahoo.com/group/Adenoid_Cystic_Carcinoma_Organization/

    There are some wonderful 20+ year success stories, some sad ones, but mostly great support there. Good luck and here's hoping for more research to help us out.

    Sharon
  • ladyartprof
    ladyartprof Member Posts: 2
    #8
    deb5fun said:

    Newly diagnosed adenoid cystic......
    I was diagnosed on October 8. I had my gland removed September 30. Initial pre-surgical biopsies came back negative, but once the entire gland was sent to pathology, it came back positive. I went through radiation. It wasn't horrible, lol! It's funny how little you hear about it. My oncologist told me she has someone in her 20s she's been treating, and the prognosis is very good. It seems to reappear after a long time, from what I understand, most commonly in the lungs. My doctors told me 15-20 years, if at all. Still, there's always the fear that lies underneath. I'm told it's quite common. I didn't have too much trouble eating while I had the radiation, as long as I kept with bland, soft foods. The 2 weeks immediately following the treatments were rough, but right after I started feeling better. I'm glad you have a lot of support. I am single, so it was a bit hard. I have a lot of friends who love me very much, but the days when you feel the worst, it's nice to have someone there to help you out. Be sure to let me know if you have any specific questions as you go through your treatments. I'll try to help as much as I can. Know also, that prayers surely do help.
    Take care!

    Hi Deb, My story is very
    Hi Deb, My story is very similar. Thanks for the info on radiation...it's about what they told me to expect. I'm 62...I'll take 15 - 20 years! And you are right, having great friends and family for support are priceless. Prayer does help!
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
    ladyartprof said:

    adenoid cyctic carcinoma
    Hi Lif Ane, My name is Sharon. I was just diagnosed too and had surgery May 4, 2010. I had 3.3 cm tumor in the submandibular glad with limited perinural invasion and also one lymph glad affected as well. I am getting a thorax scan to check for mets in my lungs, but they don't think it has metasticized at this point...we'll know more after the scan. I am scheduled to begin radiaiton in late June. So it is all new to me too and I have many questions. I have readydozens of success storis on the ACCOI (Adenoid Cyctic Carcenoma Organization International) site here: http://health.groups.yahoo.com/group/Adenoid_Cystic_Carcinoma_Organization/

    There are some wonderful 20+ year success stories, some sad ones, but mostly great support there. Good luck and here's hoping for more research to help us out.

    Sharon

    Sharon and Lif, I'm very
    Sharon and Lif, I'm very sorry that you are gong thru this but please know there are many people here who have been thru it and are very willing to help in anyway they can. We also have lots of info. I had cancer of the voice box and went thru 35 rad trmnts. The side effects were hard but I make it thru. You will also make it. The road will not be easy but comeing here will help, as people here will gladly answer any questions you may have, listen to your vent and release some anger you may feel and give your support. It truly helps talking to people who know what you're going thru b/c they'ver either been there or are currently on that road with you.
    I'm sorry that you are both going thru this but welcome to CSN. You will also be survivors!!
    God Bless,
    Debbie
  • Kaydub
    Kaydub Member Posts: 14 Member
    #10
    HOw are you doing almost a year later?
    I was diagnosed with Adenoid Cystic Carcinoma in Nov. 2010, had surgery to remove the left sub mandibular gland, and have undergone 33 days of radiation. The last two weeks of radiation side effects were brutal. I am done with radiation, but am still having awful throat pain. How did your treatments go, and are you getting your taste buds back etc?
  • Kaydub
    Kaydub Member Posts: 14 Member
    #11
    !

    !
  • mshavick
    mshavick Member Posts: 3
    #12
    Kaydub said:

    HOw are you doing almost a year later?
    I was diagnosed with Adenoid Cystic Carcinoma in Nov. 2010, had surgery to remove the left sub mandibular gland, and have undergone 33 days of radiation. The last two weeks of radiation side effects were brutal. I am done with radiation, but am still having awful throat pain. How did your treatments go, and are you getting your taste buds back etc?

    adenoid cystic carcinoma
    I am completing 33 radiation treatments and wondering how long it tastes for taste to come back, So far beyond pain, and not being able to eat it is bearable. First posts I've with others with this rare cancer.

    Thanks,

    Margy
  • katenorwood
    katenorwood Member Posts: 1,912
    #13
    ACC
    I'm sorry to hear you have this rare cancer, so do I. And I saw a post for you to link with, I agree one hundred and ten percent...ACCOI and their sister site ACCRF is a tremendous source of information. All they deal with is our cancer. You are a year out, I am only 6 months out. How are you ? If you haven't joined our other site, please...please do. Much hope and prayers are sent to all the ACC survivors ! Katie
  • katenorwood
    katenorwood Member Posts: 1,912
    #14
    ACC
    Darn computer wanted to repeat message and no way to delete....oh well!
  • katenorwood
    katenorwood Member Posts: 1,912
    #15
    mshavick said:

    adenoid cystic carcinoma
    I am completing 33 radiation treatments and wondering how long it tastes for taste to come back, So far beyond pain, and not being able to eat it is bearable. First posts I've with others with this rare cancer.

    Thanks,

    Margy

    New to site...
    Margy,
    Hi, I'm Kate also an ACC survivor of 6 months. Would love to stay in touch with others with our type of cancer....posted on other site for us to use, maybe you found it already. Hope all is well, and stay in touch ! Katie
  • katenorwood
    katenorwood Member Posts: 1,912
    #16
    Kaydub said:

    HOw are you doing almost a year later?
    I was diagnosed with Adenoid Cystic Carcinoma in Nov. 2010, had surgery to remove the left sub mandibular gland, and have undergone 33 days of radiation. The last two weeks of radiation side effects were brutal. I am done with radiation, but am still having awful throat pain. How did your treatments go, and are you getting your taste buds back etc?

    Wow....
    Hello !
    I had the right submaniblar gland removed one year later than yours ! How are you ? I'm only 6 months out, was only able to do 11 out of 33 rads. Waiting til July to go back into cancer center for more tests...didn't have clear margins, and have perinural invasion present. Hope all is well...and read my other post for a great link to a fantastic group dealing with our specific cancer. Lots of prayers are sent your way, and positive thoughts ! Katie
  • katenorwood
    katenorwood Member Posts: 1,912
    #17
    ladyartprof said:

    adenoid cyctic carcinoma
    Hi Lif Ane, My name is Sharon. I was just diagnosed too and had surgery May 4, 2010. I had 3.3 cm tumor in the submandibular glad with limited perinural invasion and also one lymph glad affected as well. I am getting a thorax scan to check for mets in my lungs, but they don't think it has metasticized at this point...we'll know more after the scan. I am scheduled to begin radiaiton in late June. So it is all new to me too and I have many questions. I have readydozens of success storis on the ACCOI (Adenoid Cyctic Carcenoma Organization International) site here: http://health.groups.yahoo.com/group/Adenoid_Cystic_Carcinoma_Organization/

    There are some wonderful 20+ year success stories, some sad ones, but mostly great support there. Good luck and here's hoping for more research to help us out.

    Sharon

    Yay ....another ACC warrior !
    Hi Sharon,
    I am linked and a member of ACCOI and their sister site ACCRF. I couldn't imagine not having this site and theirs for our very rare cancer. They are so committed to finding a cure, and have positive, accurate info for us. I also find such amazing people on this site, and am connecting with them also. How are you ? I'm very new here, kind of found it by accident....but so glad I joined ! Warmest regards, Katie
  • katenorwood
    katenorwood Member Posts: 1,912
    #18
    deb5fun said:

    Newly diagnosed adenoid cystic......
    I was diagnosed on October 8. I had my gland removed September 30. Initial pre-surgical biopsies came back negative, but once the entire gland was sent to pathology, it came back positive. I went through radiation. It wasn't horrible, lol! It's funny how little you hear about it. My oncologist told me she has someone in her 20s she's been treating, and the prognosis is very good. It seems to reappear after a long time, from what I understand, most commonly in the lungs. My doctors told me 15-20 years, if at all. Still, there's always the fear that lies underneath. I'm told it's quite common. I didn't have too much trouble eating while I had the radiation, as long as I kept with bland, soft foods. The 2 weeks immediately following the treatments were rough, but right after I started feeling better. I'm glad you have a lot of support. I am single, so it was a bit hard. I have a lot of friends who love me very much, but the days when you feel the worst, it's nice to have someone there to help you out. Be sure to let me know if you have any specific questions as you go through your treatments. I'll try to help as much as I can. Know also, that prayers surely do help.
    Take care!

    Posts are positive...
    Hello !
    I'm hoping you all are still here on this site ! It is so wonderful to connect with people that have insight to ACC. I'm very new to this 6 months in. Please stay in touch if your still on this site....we can be very good help to one another....it's amazing I found you guys ! Warmest regards Katie
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #19
    katenorwood said:

    ACC
    Darn computer wanted to repeat message and no way to delete....oh well!

    Patience Grasshopper...
    It's slow to respond quite often... If you click it more than once, it's going to post more than once... Most of have done it once or twice... LOL some more than others.

    JG
  • Hondo
    Hondo Member Posts: 6,636 Member
    #20
    Skiffin16 said:

    Patience Grasshopper...
    It's slow to respond quite often... If you click it more than once, it's going to post more than once... Most of have done it once or twice... LOL some more than others.

    JG

    Nothing wrong with a little re-pete now and then, sometimes we are just twice as good. lol

    Hondo
  • katenorwood
    katenorwood Member Posts: 1,912
    #21
    Skiffin16 said:

    Patience Grasshopper...
    It's slow to respond quite often... If you click it more than once, it's going to post more than once... Most of have done it once or twice... LOL some more than others.

    JG

    lol !
    Hi !
    Just thought it was me or my comuter...lol, thanks ! Have a great Day ! Katie

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