| | 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).
| | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi Cookey
Im really lucky that we have a Force special built cancer building in the hospital grounds. Anyone affected by cancer can use it & they offer all sorts of support. I had quick peak on the macmillan website and it says that you can get free prescriptions. I really appreciate the support you are giving plus the invaluable advice.
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).
| | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi Cookey
Im really lucky that we have a purpose built cancer building in the hospital grounds, anyone affected by cancer can use it & the facilities. I have met my oncologist & radiographer already & thank heavens for the head & neck specialist nurse. My drs good but he does forget the human touch sometimes, she has been my angel of sanity. I had a quick peak at the macmillan website & it had a link on there about free prescriptions. I shall have to investigate. Thank you for taking the time to reply. XXX
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | PJ, we certainly understand being nervous before surgery. Just remember that you are in good hands and you have all of us here to support you the best we can. All of the nurses I have met have been great..the doctors, I agree with you, most of them could use some work on their bedside manner...the surgeons especially! Hang in there:)
(((HUGS)))
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: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | This is totally off topic, your home gives me an exceuse to talk about the 6 days I spent in August '02 at the Halfway Inn House in Cawsand Kingsand, literally on the Cornwall/Devon border. It was among the most beautiful and peaceful places I've ever been. Cawsand is adjacent to the Mount Edgecumbe nature reserve, & we walked part of the Coastal Path. The Halfway's restaurant came in 3rd in a "Best of England" contest. Its clotted cream was wonderful high calorie, smooth, and wonderful - just what you will need after your surgery (just to get back on topic).
My friend's nephew was having his marriage blessed at the nearby fort (Polehawn).
Good luck with your surgery and follow-up. You have many friends here!
Marlene
[quote=pjmonster]
Im based in Devon & am being treated at the RD&E.
[/quote]
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I had god Drs and nurses at all places so far and bekieve me that is a lof on them LOL also the Hospitals Of course they might think I am mental and take pity LOL
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I'm not typing my gibberish twice, LOL You know what I meant
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | It is normal to be scared. I was scared for both of my surgeries. I will be prayinf for you and your team of Doctors. It is easier when you have the confidence in your doctors. I am glad that you have a good team working for you. Good Luck to you and keep us posted on how you are doing.
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: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Thankyou to everyone that has taken the time to reply. Hey Marlene really pleased that you like my part of the world & that you enjoy our clotted cream!
Hugs to all.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Hey PJ,
Welcome and I'm sorry that you are having to go through with this experience. I've gone through chemo and radiation followed by surgery and while scary and a long road, there is hope and a light at the end of the tunnel.
Cookey has given great advice, as she is from the UK I think she can be a great resource for you. Right now the only thing you can control is your attitude and your nutrition, the rest is up to your medical team and how your body responds to treatment. Take care of your skin and teeth during radiation and as expressed above, keep hydrated and eating!
Good luck my friend, know that you have people here to answer questions, vent and relate to. Now strap on your helmet, load your weapons and start taking the fight to the enemy!
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi Eric
Many thanks, you are just what I need today, thankyou.
xx
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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