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Hi my name is Michelle and my husband Dan (45-years-old) has recently been diagnosed with Stage IV Adenocarcinoma of the Salivary Gland. Our process started with a painless knot right under his ear along the jaw line. This was noticed October/November timeframe and he mentioned it to his dentist in December. He was referred to an Oral Surgeon and then to an ENT. The ENT identified it first visit as a tumor and did a FNA - results negative for cancer. But the doc was still suspicious and ordered a CT - this showed lymph node swelling. A second FNA w/ ultrasound was ordered - results inconclusive. All along we had been discussing with ENT the need to remove the tumor irregardless, because it could cause facial nerve trauma if left "unchecked". The surgery was performed on Feb. 5th - 6 hours later the tumor and 17 lymph nodes were out. Cancer from the frozen section done during surgery. A few days later the final pathology was in and 2 of the lymph nodes were infected, this gives us a T1N2B, which is Stage IVa. At this time we don't know extent of metasteses. May turn out to only be the lymph nodes - need additional scans to be sure though of course. Tomorrow (2/20) is our initial appointment with an oncologist at our local Cancer Center. We are armed with about 50 hours of research and a list of questions. The ENT has of course told us radiation is definate and chemo to be determined. I am desperately trying to find someone with this particular type of cancer. I'm finding alot of info on head and neck, but not this particular type. Perhaps the oncologist will have a different more precise name for it tomorrow and that may help my search.
I look forward to "talking" with you all.
Michelle

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The name of the type of cancer is a reference to the cells where it origonates ,the term adenocarcinoma comes from 'adeno' meaning 'pertaining to a gland' and 'carcinoma', which describes a cancer that has developed in the epithelial cells.

The most common form of oral cancer is squamous cell,and there is also mucoepidermoid .The type will be determined by a full pathology analysis of the portion removed and treatment will be dependant on this.

Welcome to the OCF and let us know how the appointment goes and your treatmen plan.





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.
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What Cookey said . LOL she lost me but is a smart lady. I hope it all turns out for the best.


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
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Thanks Cookey - I thought the "name" was redundant and almost all the info references different names. I thought a full pathology had been done from the tumor and lymph nodes removed by the ENT during surgery. Hopefully I can get that sorted out today with the oncologist.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

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Michelle,

You are on the right track re arming yourself with as much research as possible. This ordeal is a definite learning curve and the sooner you reach the top, the better for you and your hubby.

Lets us know about the path report and their Tx recommendations and we will offer whatever assistance we can.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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You guys are so supportive already - thanks a ton for that. We had a long and informative visit today. TX recommendations will begin with a full body Combo PET/CT scan to be done ASAP then 7 weeks of photon radiation to be done @ 5 days a week. Today was the Radiation Oncologist - next week, Tuesday, we meet with the Medical Oncologist to discuss chemo. Tomorrow we will go have a tooth extracted. Doc today said exact name of cancer is Adenocarcinoma of the Parotid. We will have a planning meeting and mask fitting session next time we go. He went over the side affects, etc. and talked about the nutrition and possible tube that could be needed on down the road. Most of the side effect stuff we had read about online.
There were actually 3 lymph nodes visually affected and the tumor was felt to be resected successfully, but the margins weren't clear. The cancer is considered aggressive and mid-grade. Stage IV was correct. Now we just need to find out if it has metastasized anywhere.
I'm of course petrified, but suprisingly feel better today than yesterday. I guess because we have something of a plan and we are actually taking action to fight. My husband's spirits are pretty good. We went to lunch after the appointment and he talked about wanting to make sure he's around to be remembered by our son (he's 2 & 1/2). That just breaks my heart and that's my biggest fear too.
I can't tell you how happy I am to have found this group. I know it will be "just the place" for us during this.

Last edited by luvmyhubby; 02-20-2008 11:57 AM.

Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

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Posts: 1,940
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Michelle i am sorry to hear you have such a rocky road to travel,and i am happy to see you are already using the royal "we" ,its a jargon we caregivers slip into very quickly and shows how committed you are to being with him every step of the way which he will surely need.Being Mom to two small children will put you under even more strain so please make sure you have backup in place for you as well,because you will definately need it.

Read some posts and if you can ,the blog by MHUPE (margret) as she too juggled motherhood with caregiving,and she and her husband are now moving forward with their lives post cancer,and doing well.

If anything will give your husband the grit he needs to fight this hateful disease it has to be the will too live long and bounce his granchildren on his knee.
you have a very hard time ahead,but know we will be here to help when you need us

love liz


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.
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Have they discussed the possible cause(s) of his cancer?

Most of us here had the concurrent chemo/radiation so when you are ready we can discuss in great detail what his journey will be like to all of you including your daughter. I would think the rad he will receive is called IMRT for Intensity Modulated Radiation Therapy which usually results in less severe side effects than it's predecessor.

Don't be to overwhelmed by the Stage IV as many of us were staged a IV and we're still alive and kicking.

You will find that this site will be as valuable as as other treatment tool in his arsenal.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Michelle,

You will have hard days ahead, but I felt like the time period you are now in was the worst...so much to absorb...so many decisions..so many doctors appts....and the specter of months of treatments and the fear of what lies ahead regarding your husbands recovery. I felt so much better once we had a treatment plan and started moving forward with that.

You have really done your homework and it shows in your posts. Now let us help you thru the oncoming days..everyone of us here has something to offer...sometimes its practical information and a lot of times, its just moral support.

Hang in there...my hubby was also stage IV and he is recovering rapidly and we have good reports so far. There is a storm ahead, but we will walk thru it with you.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Feb 2008
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I actually felt better last night and filled with hope for the first time since this started. Thank you all so much for the support and the reassurances regarding stage IV - that was making me worry alot. And prior to finding this site I kept finding statistics - and they are not what I needed to be reading.
We have read everything we can get our hands on re: rad side effects and I guess now it's just wait to get started and do the best we can with them. I'm sure there are posts in the other sections that tell of tips, etc.
I need to do some research on the chemotherapy side of things because we'll meet with that oncologist on Tuesday.
I am very intimitaded being caregiver and mother. A little background on me - I'm 35 and I lost my mother to breast cancer at 24. I already had my own home, etc. (no hubby), but did live close to my parents. I realized right away it would be too much on my dad so I closed up my house and moved home with him. We shared all the caregiving to her. Now I'll do it for my husband, by myself with 2 kids... very scared. I'm going to read the MHUPE blog that was recommended.
I'm also worried about our daughter - she is actually Dan's daughter (I just claim her as mine). She lives with her mother in the same town as us, but she spends almost 1/2 the time over here. I'm mommy also and have been for almost 7 years. Her mom and I get along real well and we are very worried about her through this process. Right now she knows daddy had surgery, they found cancer, we're seeing lots of doctors to figure out the best plan to beat it. That's pretty much it. Our son who will be 3 this spring is somewhat oblivious. I can tell he's nervous when Dan has bandages and after the surgeries if Dan spends a whole day resting in bed and then comes out with the family he is shy. I talked to his pediatrician about it and she said the stress will affect him and to try to keep his schedule/routine as normal as possible. I've got some things in mind to work on that.
Dan's got the oral surgery this afternoon and I just hope the pain is not too bad. It's on the same side/section as where the surgery was and where he had the hematoma so it's already painful there.
Michelle


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

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