Salivary gland carcinoma diagnosed.

Hi Eddie. Sorry to hear about your diagnosis. The worry about cancer returning is always at the back of our minds but as time progresses it does recede somewhat. I have not had the same cancer as you mine was jaw cancer but I have had 2 more occurrences since my first diagnosis at the age of 59. Each occurrence has been successfully treated as they were caught early because I was still having 3 monthly check ups. I have recovered well each time from the ops and am now aged 71. So in my experience early diagnosis is the key to successful treatment. I enjoy each day for what it brings me and am living a happy life and I know you will too.

Best wishes

Lyn

Hi Eddie. My best advise keep off  Dr Google unless you really know where to look you can end up down A rabbit hole that’s hard to get out off. At best the indie is around 5 years out of date at worst it’s wrong. I have a motto in life just live it don’t waste time thinking about reoccurrences. You’re been through treatment so now enjoy life. 

hugs Hazel 

Hi Eddie109

A warm welcome to the group, I agree with Lyn and Hazel stay away from Google it’s  not accurate or helpful.

I didn’t have same cancer but was devastated at 56 when diagnosed with.T4 tonsil cancer …..Getting through treatment is tough enough but you did it !! so now take time to heal and recover then spend the rest of your life trying to enjoy what makes you happy.

Luckily most of us are monitored closely for at least 5 years ( and you can contact your team after this point. with any concerns if they arise) Reoccurrence can be at the back of your mind but don’t spend the rest of your life worrying. When it occasionally niggles me I give it a thought then do something nice to take my mind back to living my best life .

If it becomes more troublesome there are support groups( face to face and online or Counselling via GP or Cancer charities.

All the best 

Debbie

Hi Debbie,  thanks and understood about Google.  It just came out of the blue the diagnosis.  Felt good and no worries just a little lump side of face.  Then bang your plans,  dreams all up in the air. Cant fault the NHS from diagnoses to having radical surgery (how surgeon described it) the hospital staff all excellent.. Just being apparently a very rare type I was wanting to see who else gone through this. But i suppose everyone takes it differently.  I am a very positive person but also realistic.  

Hi Eddie, 

I have just finished a whole series of treatment for Salivary Gland Cancer,  Mucoepidermoid T4aN0M0 to be exact, and intermediate grade that was being a bit weird.  Anyhow, short story is I had it in 2021, had surgery to remove it. IOt came back in 2024, had more surgery in August partial maxillectomy and free flap to replace it. Then I had radiotherapy, which was thw worst bit - give me surgery anyday!) Have just had an all clear MRI and am looking to go back to work next month. It's been a hard journey. but now I am OK, some weird oddities to live with, but nothing terrible in my case. I don't look for prognosis personally - now is now and whatever tomorrow brings it will - I'll deal with it then!  But it looks pretty ok for now. IF it came back again I don't know what would happen  I'm 52 next week - and yes - stuff to do! I think the main problem is there just insn't much research out there, even the MDT were like, well we haven't got the data, but we think you should have the Radiotherapy - but it's up to you. 

HAve you seen these people https://www.salivaryglandcancer.uk/ ?

Sorry I can't give you anything more solid - there is just a lack of information out there 

But there's so few people it seems with it I had to respond! 

Best  

Rachael 

Hi Rachel,   thanks for your message and encouragement,  I am to be booked in for 6 lots of radiotherapy which hopefully goes well. Just I need to except and enjoy what I have , one thing that makes it good is my loving caring and very supportive wife. Wish you all the best. 

Hi Eddie, Good luck with the Radiotherapy, I hope it all goes well

Hello Eddie- I’m Nigel, just read your email reply to Rachel - not how it got to me BUT wish you all the best and strength for your upcoming radiotherapy - I completed 6 wks of the treatment back in January for tongue and throat cancer. For me I embraced having on the mask , a sort of security / good feeling and for a fair majority of the treatments, I actually relaxed and dozed off.

wishing you the best fella - Nige 

Hello Nigel, 

cheers for the encouragement and positive outlook for radiotherapy.  See consultant Monday.

Though they booked me in the same time as seeing my maxillofacial appointment.. Sometimes you do think do departments talk to each other when arranging appointments.  Anyway cheers and wish you well.  Eddie.  

Hi Eddie, that’s something you will find, appts seem to be doubled up but they work together - you will find this - which hospital are you linked with ?

Nige