| | Joined: Jul 2010 Posts: 5 Member | OP  Member
Joined: Jul 2010 Posts: 5 | Hi all
I am really happy to see so many positive words around here and it makes my life brighter. The situation is, my dear wife Natasa, mother of 2 beautifull little boys, born in 1972, was recently diagnosed with Adenoid Cystic Carcinoma of the submandibular gland. She undervent surgery, gland was removed and one lymph node cancer has spread to, together with local lymph nodes, it all was removed. We are still waiting for the finalo pathological reports, but it seems to be low differentiated, G3 tumour. Doctor told us radiation will most probably be done after they have consilium.
Since I we are living in Serbia, that has good doctors, but not so good equipment, any recommendations regarding clinics in Europe would be really helpfull.
Also any advices about that particular type of cancer would be great.
Thank you good people, may the God be with you | | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Sorry you had to join us, but you came to the right place. I can not answer your questions, but I am sure others on here can. This a hard thing to go through and we are here for you and your wife.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | There are several posters here who have dealt with AdCC. If you type adenoid cystic in the search box at the upper right of each forum page, you'll get three pages of results. You can then contact a poster by clicking on his or her name next to the post -- that will enable you to either send a private message through OCF or click through to his/her profile for an e-mail address.
As for clinics in Europe: OCF has a number of members from the UK, and I recall at least one poster -- Peter_Stuttgart -- from Germany.
You've come to the right place for information and support.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF. You will find lots of info on the main pages of OCF. There is also a search function there as well. Not too many members have had that type of cancer. My advice would be to get as many people lined up to help you during the time your wife has radiation. Even if someone would take the children for a few hours or a day it would give you both a break. When your wife is able to eat she should try to eat all her favorite foods. During radiation, the ability to taste and eat can be dramatically changed so its best to gain a few pounds now and eat all her cravings.
Hope your wife recovers quickly from the surgery. Best of luck.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | Here is a link to the foundation's page on ACC. Wishing your whole family well as you go through this journey. http://oralcancerfoundation.org/facts/rare/ac/index.htm
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jul 2010 Posts: 5 Member | | OP Member
Joined: Jul 2010 Posts: 5 | Thank you very much for kind words. Right now I will try to learn as much as I can about radiation therapy. Do you know if any medicines are recommended to make it easier, like Cesium, Oxygen, etc? | | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi
I had ACC too although it did not spread to my lymph nodes. Any thing I can help with please ask.
PJ
Surgery to remove tumour from on top of saliva gland 3rd August 09. Biopsy revealed adinoid cystic carcanoma. Further surgery 28th September 09 to remove saliva gland, nerve to top lip (buccal branch) & scar tissue.
Radiotherapy finished 30 Dec 2009 IXA x 33 (60gy).
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