Adenoid Cystic Carcinoma

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hoppere
hoppere Member Posts: 17
in Head and Neck Cancer #1

Hi there!

 

I'm just wondering how many people on here have been diagnosed with ACC, what kind of treatment you've received, and how long you've lived with this diagnosis. My primary tumor was the submandibular gland in July and it was removed in August. I've got new growth in the parotid now and another near the middle of my throat, obviously fast growing, anyone else experience this?

 

beth

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  • katenorwood
    katenorwood Member Posts: 1,912
    #2
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    Hello Beth !

    Do you remember the link I gave you awhile ago ?  www.accrf.org and www.accoi.org ?  There is a list of doctors on there and also different tx's listed.  Also do you use FB at all ?  Under attack acc there are many doing battle exactly like you right now.  20 + yrs for some of them.  You do have an aggressive form of the adcc, and I'm so sorry to hear this.  But there are targeted medicines in use right now that may be of benefit checking out.  Also I can't stress enough on the absolute importance of having a specialist in adenoid working hand in hand with you and your doctors.  We are a sub-group of adeno...and alot of tx's that work for them do not work for us.

    If you want me to, I can contact a few people to get ahold of you by phone or e-mail.  Or if you prefer FB.  Please let me know.  And I do BELIEVE that with the proper tx's...and or surgeries you have many, many yrs. ahead of you !   Hugs sent !  Katie

    you can p.m. me here on site anytime, and I'll pass on any info you want me to.

     

  • katenorwood
    katenorwood Member Posts: 1,912
    #3
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    katenorwood said:

    Hello Beth !

    Do you remember the link I gave you awhile ago ?  www.accrf.org and www.accoi.org ?  There is a list of doctors on there and also different tx's listed.  Also do you use FB at all ?  Under attack acc there are many doing battle exactly like you right now.  20 + yrs for some of them.  You do have an aggressive form of the adcc, and I'm so sorry to hear this.  But there are targeted medicines in use right now that may be of benefit checking out.  Also I can't stress enough on the absolute importance of having a specialist in adenoid working hand in hand with you and your doctors.  We are a sub-group of adeno...and alot of tx's that work for them do not work for us.

    If you want me to, I can contact a few people to get ahold of you by phone or e-mail.  Or if you prefer FB.  Please let me know.  And I do BELIEVE that with the proper tx's...and or surgeries you have many, many yrs. ahead of you !   Hugs sent !  Katie

    you can p.m. me here on site anytime, and I'll pass on any info you want me to.

     

    dah...!

    For others adenoid cystic carcinoma is a rare dx and can be found anywhere in the body.  But most commonly found in the H/N area.  We are a sub-grouping of adenocystic carcinoma.  And it is vital to have advice or actual hands on of a specialist in this adenoid dx.

    Not much is known for tx's....but this is improving every single day as I write this.  The best and most factual related information I have found to date (2 yrs investigating) is the following

    www.accoi.org and www.accrf.org 

    phone # to talk with another survivor that has important info. is (888-223-7983)

    We are our best advocates no matter the dxing.  And it is vital to have the proper resources to turn to when needed.  I pray this info. helps many.  And as always, I'm here in anyway to help support others through their journeys !  Katie (2 yr. survivor of adcc submandiblar gland and mets to lungs) 

  • meaganb
    meaganb Member Posts: 244 Member
    #4
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    I was diagnosed March 2012. I

    I was diagnosed March 2012. I had surgery to remove the tumor & then 6 weeks of radiation that ended in June 2012. All scans to date have been clean. I hope your Dr is able to put together a treatment plan for you & that you can aggressively attack this cancer! Best to you!

  • cheekylibrarian
    cheekylibrarian Member Posts: 2
    #5
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    I was diagnosed and treated in 2006

    Hello Beth - I am so glad that you already received great information sources and encouragement in answer to your question. Let me know if I can connect you to medical librarians in your area, so you can get assistance in searching to help you make decisions on your care while you are going through treatment and healing. There aren't many of us that have this type of cancer, so individual stories can't be used to anticipate what you will be going through, but if you are curious about my personal story, you can see it on my blog http://cheekylibrarian.blogspot.com . I also link to the ACCOI and ACCRF sites, as well as other information resources. 

    Sending best wishes to you while you go through additional treatment.  -Teresa

  • hoppere
    hoppere Member Posts: 17
    #6
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    katenorwood said:

    Hello Beth !

    Do you remember the link I gave you awhile ago ?  www.accrf.org and www.accoi.org ?  There is a list of doctors on there and also different tx's listed.  Also do you use FB at all ?  Under attack acc there are many doing battle exactly like you right now.  20 + yrs for some of them.  You do have an aggressive form of the adcc, and I'm so sorry to hear this.  But there are targeted medicines in use right now that may be of benefit checking out.  Also I can't stress enough on the absolute importance of having a specialist in adenoid working hand in hand with you and your doctors.  We are a sub-group of adeno...and alot of tx's that work for them do not work for us.

    If you want me to, I can contact a few people to get ahold of you by phone or e-mail.  Or if you prefer FB.  Please let me know.  And I do BELIEVE that with the proper tx's...and or surgeries you have many, many yrs. ahead of you !   Hugs sent !  Katie

    you can p.m. me here on site anytime, and I'll pass on any info you want me to.

     

    Helpful info

    Thank you so much, Katie! I actually did find my surgeon on the ACCRF website and can honestly say I'm pleased. Treatment post-surgery is the next step and I'm interested to hear whether I can wirk thought or if I'll need to take time off. So glad to have oeople to contact!

     

  • hoppere
    hoppere Member Posts: 17
    #7
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    meaganb said:

    I was diagnosed March 2012. I

    I was diagnosed March 2012. I had surgery to remove the tumor & then 6 weeks of radiation that ended in June 2012. All scans to date have been clean. I hope your Dr is able to put together a treatment plan for you & that you can aggressively attack this cancer! Best to you!

    Love to hear this!

    Meagan, I'm so glad to hear that more than a year out you've got clean scans. Fabulous encouragement!

  • hoppere
    hoppere Member Posts: 17
    #8
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    cheekylibrarian said:

    I was diagnosed and treated in 2006

    Hello Beth - I am so glad that you already received great information sources and encouragement in answer to your question. Let me know if I can connect you to medical librarians in your area, so you can get assistance in searching to help you make decisions on your care while you are going through treatment and healing. There aren't many of us that have this type of cancer, so individual stories can't be used to anticipate what you will be going through, but if you are curious about my personal story, you can see it on my blog http://cheekylibrarian.blogspot.com . I also link to the ACCOI and ACCRF sites, as well as other information resources. 

    Sending best wishes to you while you go through additional treatment.  -Teresa

    Love resources!

    I really appreciate anything you can send me, Theresa! I'm definitely wanting to be proactive about this while also not shooting myself in the foot with ineffective procedures. Such a challenge with this disease! I look forward to hearing from you and will be checking out your blog (Someone else had just sent me that link so apparently you're quite the popular survivor).

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