Salivary gland cancer diagnosis

Hi Heidi welcome ti the forum sorry you’ve had to join  us. I’m sorry I have no experience of your cancer mine was tonsil cancer age 61 when diagnosed now fast approaching 66. If you type salivary gland  cancer in the search box too right hand corner there’s a few postings on there it may help. It’s a magnifying glass symbol to access search. 
Have you met your cancer nurse or Macmillan nurse they are often a good sounding board. 
hope this helps 

Hazel x

Hi , thank you for the advice. I have met my Macmillan nurse once so yet to build a relationship. But I’m sure I will. 

Hi Heidi

Sorry to hear about your cancer diagnosis and having to make a big decision like that quite quickly is hard.

I do not have the same cancer as yours but as a result of mine have had 2 maxillectomies over time resulting in the roof of my mouth taken out as part of the operations and had to make the same decision so I know how hard it is to get your head around it. I have now had experience with both an obturator and now the skin graft option.

I am now 69 and living a full and happy life after my ops. and radiotherapy.

Like you I was given the option of an obturator or having a graft to cover the roof of my mouth. I elected for the obturator as I wanted teeth straight away as I was already a bit limited in the teeth department from a previous op. The first obturator was put in during my op and when the swelling went down was not a great fit but this one was only short term while healing was happening and the swelling going down. However the second one was great and fitted like a glove and I managed it with no issues. The issue when the obturator does not fit well is that when you drink some of the liquid comes out of your nose. I was always glad that I opted for the obturator after the first op though as it helped with eating and my face looked normal. You do have to be prepared to have multiple visits with your specialist dentist at the dental hospital to have moulds taken and adjustments made but I found it was worth it in the long run. Your voice is very nasal sounding when you take the obturator out and you can’t eat or drink unless it is in.

If I had gone with the option of the skin graft to cover the roof of my mouth I would have had to wait several months to have a dental plate made and that too would have involved multiple visits to the specialist dentist. The skin graft is taken from your arm so you are left with a scar but it fades over time. I had to go with the skin graft for the second op as there were no teeth left in my upper jaw to secure an obturator. The skin graft is quite comfortable but I am almost completely toothless at the moment. I had this op in Feb and only just now am I getting appointments to have reconstruction so you have to be prepared to wait a while to get more teeth. This has greatly affected my eating ability.

It really is a very personal decision. Write down all the pros and cons and ask your surgeon as many questions as you have to help make your mind up. I don’t think there really is a right or wrong decision as either option works out fine.  

Lyn

Hi Lyn

Thank you so much for your very reassuring and informative message.

It is good to hear your story and that you are getting on with your life despite the long journey.

I know it is not going to be an easy ride nor a short one. 

I am thinking at the moment of taking the skin graft option . I am likely to lose a couple of back upper teeth but I can have implants if I choose too. 
I have a couple of weeks to make my decision.

thank you once again, I hope you have a lovely Christmas xx

June (Heidi1)

Hello Heidi 

sorry to hear this. I had Cancer between hard and soft palate, salivary gland. 
i too was given the option of obturator or surgery. In fact its a year today since i was admitted to hospital, was in all over last Christmas. 
i chose the surgery. For me it was a no brainier! I had a wide excision sept 21 of tumour (originally thought to be benign). Unfortunately i developed a large fistula in my palate and i had to have packing and a silicone appliance to hold it in place so i could eat. I found it horrendous tbh. 
I know it isnt an obturater but similar and for me personally i dont think id have coped with that.

surgery wasnt easy either but after a couple of weeks things do start to get better. i had a tracheostomy for 5 days, they took tissue, artery and vein from my arm and reconstructed my palate, had partial maxillectomy (top jaw) removed and left neck dissection. It was hard but doable and to be honest, it happened and i got through it. 

for me personally, i found the radiotherapy the most difficult thing, the after effects. 

good luck with your decision, you will smash it. Keep positive and look to the future. My cancer has gone now!!! Im back to work now and this week back to full time hours! Its been tough but these things are sent to try us xxx

Hi Elaine great ti hear from you. Just look how far you’ve come wow a full week bsck at work bet 6 months ago you didn’t think that was possible. 
have a good Christmas 

Hazel xx

Thanks Hazel 

merry Christmas to you too!! 
Still have issues and still in alot of discomfort but im plodding on xxx

It all takes time in reality it’s still early days for you. Give it another year xx

HugsxHazel x

Hi, thank you for your frank but reassuring story.

It is very reassuring to hear you are recovering well.

I realise it is going to be a hard and long journey but I am beginning to be realise that I can get through this. 
I feel the same way regarding to obturator and that the reconstruction graft is the way to go.

I asked my consultant re tracheostomy and he reassured me I would not need one. Fingers crossed this is right . 

I really appreciate you contacting me.

Thank you so much. 
Heidi1 

You’re welcome. I hope it has helped , sometimes im a bit blunt but remember we are all unique and react to things differently. Its a personal decision and of course each case, each cancer is very individual. Do what feels right for you after getting the facts from the experts at the hospital you are having treatment at.
Good news if you don’t need the trache. however, if youre having reconstructive surgery there is going to be a lot of swelling and you will need your airway protected but like i say, were all unique and different centre’s probably have different ways of doing things. 
all the best

Elaine x