| | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi
I have been diagnosed with having adinoid cystic carcanomia after having a 'benign' tumour removed from on top of my salvia gland. My dr told me yesterday that they need to reoperate to take out some of my salvia gland, the nerve to my top lip & some scar tissue to be followed by radiotherapy. Im positive but scared. Has anyone else had this done? It would be good to know that there is light at the end of the tunnel.
Thankyou.
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).
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hello PJ
while your cancer is not one of the more common forms of OC i am sure that you will get help and support through the difficult journey you are about to embark upon.
Routine advice will be to make sure you get plenty of nutrition before radiotherapy starts,as eating may become difficult through your treatment.The surgery while unpleasant will probably be the easier part of things,keep hydrated and try to keep moving your mouth and lips as much as you can.Read all the information you can about how to look after your skin and pain relief and don't let things get to uncomfortable before you ask for some help.
whereabouts in the UK are you and where are you getting treated?
good luck
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Are you having your surgery and treatment done at a cancer center where they do lots of such surgeries? I hope you are not having it done by a local surgeon who seldom sees such unusual cases and such challenging surgery. Good luck!! Stay with us and keep us posted! XO
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi Cookey
Many thanks for your advice & best wishes.
Im based in Devon & am being treated at the RD&E.
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).
| | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi
Im based in the UK & Im being treated at my local hospital. They have admitted that the cancer is very rare but I do feel very happy with my doctor & have confidence in him & his team that they are doing the best for me.
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).
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi PJ
that sounds good.I expect a bit further down the road you will have a multidiciplinary team that consists of your own doctor and an oncologist and a radiographer and a dietician and also if you are lucky a cance nurse specialist.Look out for leaflets about macmillan support when you go to the hospital.Also it may be wise to purchase a 3 month prepaid exemption certificate as prescriptions can end up costing a fortune.You can do it online .
good luck
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi PJ...welcome to OCF. Having a positive outlook is key as I'm sure you know. The fact that you have confidence in your doctor is awesome too and I'm happy to hear that. When is your surgery going to be?
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | PJ I wpi;d guess your OC and mine are about the same. Mine was and is still unique. I want to wish you the best and keep up having a good attitude , That halped me win so far and it and I are still having one hell of a war,. I will defeat this thing whatever it takes . Just as you will.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi Suzanne
Thankyou for welcome, its really good to know that Im not alone. My surgery is on 28th Sept. Nervous but also cant wait for it to be over!
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).
| | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi EzJim
Thanks for taking the time to say hi I really appreciate it. Im sitting here smiling because your attitude is sooo good.
Thank you.
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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