Saliva gland cancer surprise after eye loss

Hi Andrew! I'm really sorry to hear about your diagnosis. I can relate, as I'm almost a year out from 35 rounds of radiotherapy to my neck for lymph nodes and base of tongue cancer, and I haven't experienced any issues with my eye at all. I totally understand your hesitation, but it might be helpful to chat with your oncologist or the radiotherapy team for more insights. Take care!

I’ve been told the eye effects can be 5 years down the line which is why I’m worried as I only have one eye and it’s on the side of the neck issues.

radiographer has explained this is very rare but it does happen.  They can’t see my cancer on ct or mri as they took the mass out and this is more preventable RT but I am so unsure about proceeding

Hi Andrew 

• I just about to finish 30 sessions of RT this Friday.. I had salivary gland carcinoma 3.5cm removed plus lymph node which means nerves to left side of face either removed or damaged resulting in me able to close my left eye. The RT was a lot easier than expected and was quite a relaxing with full face mask. You need to think positively about the treatment and just follow advice given. I've come out the other side with slight redness on cheek but nothing else..with all these treatments be glad they're trying to help you. Wish you the best .

I didn't know that about eyes Andrew. I understand why you would be concerned. There are people on here a lot further down the line and experienced than me so hopefully someone will reply. 

Hi Andrew,

I am so sorry to read about your diagnosis.

I am currently having radiotherapy (33 fractions) after surgery for removal of my parotid gland and neck dissection. During surgery the team had to cut my nervs to remove the tumour and I cannot close my eye now. To be honest since starting treatment my eye is a bit more dryer than the new normal, but I have been provided with eye drops to protect my eye. 

Additionally, at a post op check with my consultant he explained that the systems used in delivering radiotherapy treatment are much more precise and efficient nowadays. His words sumed up were "You don't get blasted all over your head and neck like in the past. We can now modify the beams and can avoid structures such as eyes and glands". I know with my treatment plan, I have a higher localised dose at the site and lower on neck. Have they mentioned if they have ethos machines? 

Wishing you all the best. X

No mention yet, I’m just about to go for dental checkup before they make the mask but i can ask when they’re making the mask as they said there’ll be a time for questions I get leading up to the treatment.

The mask is created and adjusted during an appointment. It's essentially a plastic-like material that is heated in a small bath, then placed on your face and molded to fit. Afterward, it hardens. Initially, I wasn't fond of it, but you eventually acclimate. I was scared by the thought of it being clipped down and regrettably looked up images of it. However, it was manageable once I adjusted to it.

I’ve watched the face mask making videos and I’m ok with that and the being held down as I’ve had numerous MRI scans with head holding masks.

its the radiotherapy damaging my only remaining eye that I’m sacred of and not knowing for 5 years or more of it’s been affected.  So scared actually thinking of saying no so I’m hoping they manage to reassure me during the consultations.

Oh I would feel the same Andrew. I hope you get the reassurance you need. 

Hi Andrew, 

I had radiotherapy 12 years ago after surgery to remove a malignant parotid salivary gland. I never experienced any issues with my eyes following radiotherapy, However, after surgery my eye very occasionally looked a little smaller (my eyelid drooped a little), which was barely noticeable to others, and only late into the evening (when I was tired). But this was after surgery, I had no issues after radiotherapy. My sight was unaffected. 

I did experience some dental issues years later (arising from the removal of my parotid salivary gland, as you produce less salvia). Frequent sips of water, rinsing mouth after eating, brushing teeth before bed would’ve helped prevent some of the issues I had, if I’d known. 

Radiotherapy is far more targeted these days, than it was 12 years ago, When I had mine, the area that was ‘affected’ was square in shape, about 2 inches below my eye, and 2 inches out from my nose, down towards my chin, mostly across my cheek and into my neck area. The parotid gland sits quite low on the cheek, nearer to the ear and chin, than the eye. By ‘affected’ I mean that the area was quite tender after treatment, and very red, I had to avoid being in the sun, I also had a small bit of hair loss (an inch of so below my ear). None of these were permanent, the redness improved within weeks and hair grew back. 

I’ll try and attach a photo, if you show it to your oncologist, they might be able to draw a outline to show you (by way of comparison) what the difference would be these days (12 years on) with targeted radiotherapy. I had 36Gy radiotherapy in 2013.

Also, it might be worth asking your oncologist if they can give you an idea of what percentage (if any) of their patients have experienced issues with their eyes - sight following radiotherapy (specifically for salivary tumours). And, what the risks are of not having radiotherapy. I found being informed helped me make a decision. 

I hope this helps.