Salivary gland cancer

Hi Maria, 

It's so heartening to read your story and I hope from the bottom of my heart that you're doing well now. My mom went through a similar surgery after being diagnosed with high-grade transformation acinic cell carcinoma 6 weeks ago (she's very healthy and early 60s). She had a parotidectomy, they removed and regrafted facial nerves because the tumor had wrapped around the facial nerve as well as grown into the ear, they removed all the lymph nodes in her neck where there were two small tumors, and they did the leg flap stuff to help lift up portions of her face. She'll get a platinum weight added shortly, and start radiation and possibly chemotherapy (*if* a lung scan comes back clear this week, which could go either way). 

She's been recovering well, but my goodness -- for her, for our family, this is such a wildly shocking and isolating experience, when these cancers are so rare. It is a huge comfort just to read these threads about other people who've gone through this kind of surgery and treatment. 

Thank you for sharing your story, 

Caroline

Hi Caroline

It has been 8 months since my RT. Just got back from a week Northern Europe cruise trip.  I am 62.  I have a wonky smile and my face is not symmetrical after 3 surgeries but it is all worth it.  I am due for possibly another surgery because my ear hole has overhealed again. My hearing is very much reduced. I take each day as it comes.  It is amazing how our body heals up as time goes by.  I am back at work 3 days a week for the last 3 months.  It sounds like your mum has a very good team that supports her.  It will take quite some time to heal. Patience is the key to healing physically and mentally. Please feel free to contact me if I can help.  

Hugs to you and your mum

maria

Hi, I too was diagnosed with Salivary gland cancer & had a superficial parotidectomy on my right Parotid.  A bucchal nerve was severed so I ended up having a nerve graft which led to facial paralysis & I couldn't close my eye.  Was referred 

Hi Maria. That is all such good news. 
Dud you get a look at the Northern Lights by any chance? 

SoniaLT said:

Hi, I too was diagnosed with Salivary gland cancer & had a superficial parotidectomy on my right Parotid.  A bucchal nerve was severed so I ended up having a nerve graft which led to facial paralysis & I couldn't close my eye.  Was referred 

Welcome to our little community.  
How are you now Sonia? 

to opthamologist for options.  Choice was to have further surgery to implant a gold weight or a stitch to force the eye to close.  I asked about acupuncture & they said it wouldn't work.  I decided not to listen & tried acupuncture.  After 1 visit I noticed a difference & continued.  It took a total of 16 visits to get my eye to function.  I now use a portable tens machine to keep the nerve stimulated as the acupuncture visits were costly & the TENS works just as well.

I have multiple bilateral lung nodules which are CT scan every 3 months.  They have been growing but not large enough to biopsy yet.  The next step would be to get a CT guided biopsy & appointment with Thoracic Surgeon.

I  hope your treatment goes well.  Wishing you all the best.

Hi Sonia,
My case is very similar, how could we communicate more? I'm still waiting for my parotid gland operation, so I'm very worried....

Gita. If you don’t want to talk here on open forum send Sonia a friend request and if she is happy with that you can both talk via private message.