Salivary Duct Carcinoma

Hannah531

Hello, 

my name is Hannah and I am newly 26. I live in CT and work as a children's outpat clinician. I was recently diagnosed with stage 1 salivary duct carcinom...I start 6 weeks of daily radiation next week and I'm feeling pretty nervous about it...I had my treatment planning session last week and left feeling pretty overwhelmed...they made a mask to fit my face which basically pinned me down to the table and stuck a tongue blocker in my mouth which made me feel like I was choking and gagging the whole time...now I'm even more anxious about starting! I know my type of cancer is rare, but just wondering if anyone else has been diagnosed with this...I have had one salivary gland removed so I know I'll be experiencing dry mouth as a symptom...anythig  I should be prepared for? Also, hwhat were everyone's experiences working full time during daily radiation?

 

thanks!

hannah 

Mom68

Salivary Duct Carcinoma

Hi Hannah! Is Salivary Duct Carcinoma the same as salivary gland carcinoma? There are just a few of us on here, if that is your diagnosis. Our cancer is specifically mucoepidermoid carcinoma. Either way, welcome to the forum. I'm sorry you have to be here, but you're in great company. There are many wonderful people on this forum, and we'll support you in whatever way we can. God Bless...Mary

CivilMatt

welcome

Hi Hannah,

Welcome to the H&N forum, sorry that you are here.  Good news, in 7 weeks you will be finished and you can tell me what to expect.

My SCC was stage IVa at the base of tongue and 1 lymph node. I only had to work sparadically when undergoing treatment, so I am not a good example.

I never liked the mask, but came to find it interesting.  Also,, I took 1 Lorazepam daily for anxiety.

You might line up some good tunes for mask time, it helps.

You will develop your own procedure for getting ready for rads.  Mine included a shot of magic mouth wash in the parking lot, a pee, adwish of water and drink to clear my throat and a good face and arm rub to loosen up.

I hope you do fine.

Matt

tommyodavey

MEC?

Hi Hannah, I too like Mom68 had Mucoepidermoid Carcinoma which is a salivary gland cancer.  There are two main ones called the Parotid Glands and are located just below your ears at the top end of the jaw.  There are other glands along the bottom part and also very small glands running down your tongue but mostly this cancer affects the major glands and uppper palate areas.  Mine was base of tongue and that was a rare one to treat.  Like you, no chemo, just surgery to remove the tumor, right Parotid salivary gland and a radical rght neck dissection.  If yours is stage 1 then that is the best news possible.  Had they caught mine early all I would have needed was the radiation treatments.  

It sounds like you'll be just fine with only the rads to deal with.  See if you can get away with a reduced amount of those too.

Welcome to the forum! 

Jarvis1976

hello,

hello,

 

my dad has been dignosed with stage 4 salivary duct carcinoma. he is 62 years old. he went though just under 10 hour of surgery. they remove a buch of his jaw muscle on the left side also nerves 5 and 7 as far as they could. He also no cannot hear very well if at all from his left ear. the doctors have also side it spread to his spine and shouldn't have move there at all. he just had his 1st chemo treatment 4 days ago. We were told this is a rare type of cancer and is very aggressive. 

aprilshower55

dry mouth

Hi, Sorry to hear you will going through your radation. I was diagnose with stage 3 NPC cancer. Had 35 days of rad, and 5 months 

of chemo. Rid of cancer and a year half later my cancer return to both my lungs. Now on chemo twice a month for the rest of my life.

After my radation side effects damage my salivary glands. Had dry mouth could not sleep my throat would be so dry and it would 

wake me up to drink water that would go through the nite. I found on this form that someone suggest to try Xylimelts, what a life

saver. You can order on line they don't sell it in stores. 

I forgot to mention there is delayed side effects from the rad treatment which doc's don't tell you. I am not sure if it happens to 

anyone else. But for me, I am not able to move my tongue since 12/20018 (my radation treatment 6/2011). I had to get a 

feeding tube because I can't move my tongue to chew and when I swallow my throat does not close like normal people when we

eat or drink. All these damages the doctors never informed me. The mask is wierd but ask for anxiety meds, that might help you.

Good luck God Bless