Salivary gland cancer

Hi Mrs AM. Welcome to the community.
Try not to be scared. I know it’s easy to say but I’ve been there so I do know how you feel. Trust your team. They know what they are doing and they are good at it.
Has a plan been discussed with you? Do you have an allocated specialist nurse you can discuss your worries with? 
Im sure you have lots of questions now that the shock of the diagnosis has tempered a little. 
Ask away here. If you put salivary gland cancer in the search box at the top you’ll find a few posts there. 
I’ll see if I can tag somebody who has recently shared your diagnosis. 

Best wishes 

Hi Mrs AM welcome from me as well. Can’t add much to Danis post but please keep off Dr Google. We’ve all been where you are and when the cancer  word  rolls off the consultant s tongue your own world stops I know mine did. Here I am 4 years later still here. Head and neck cancers are eminently curable albeit sone if the treatment is brutal I’m a wimp I did it if you need radiotherapy we will al help you

hopefully you get your plan soon. In meantime ask any questions here.
 Hazel x

Hi Dani 

This is my 4th week after parotidectomy operation.   It is only then that my ENT consultant confirmed that the tumour is malignant. Still trying to recover as half of my face is still numb and has pain. My eyes does not close completely. My ENT consultant referred me to have a CT scan of the neck and chest next Tuesday at genesis care center. After which I will get a meeting with the oncologist.  I have not met anyone so far as yet except my ENT consultant. 

I am encourage with what I read so far.  I keep reminding myself to take each day at a time but must admit it is so difficult to stay focus.

thank you for the encouragement and kind words

Maria

Hi again

Mrs AM said:

Still trying to recover as half of my face is still numb and has pain. My eyes does not close completely.

I'm sure these effects are temporary.

Chest CTs are routine. I think most of us have them

Fingers crossed everything is OK

If you do have to have radiotherapy to mop things up don't be scared. It's not a walk in the park but side effects are manageable and we all get through it one way or another

I'm three plus years clear of RT and pretty normal

Hi again.

I had my CT scan for neck and chest yesterday.  This coming friday I am booked to meet the ophthalmologist because of my eye that does not close. I had facial paralysis and nerve damage from the Operation. I am also due to see my oncologist this friday. The letter that was sent by my ENT to the oncologist that I was copied in said that I have a high grade salivary duct carcinoma within recurrent pleomorthic salivary adenoma right parotid.  Since my ENT told me that my cancer is T2 I felt I am able to deal with that but seeing that it is high grade made me feel worried.  My mind does not seem to function with so much going and I wanted to do a list of questions for the oncologist on Friday. Aside from “what next question - i.e. treatment, another surgery. I would appreciate if I can for advice what would be the possible question I should ask.  Many thanks.

regards

Maria

Hi Maria. Your  head will be all over the place. I always take a duplicate list of questions one for me one for oncologist. Then I can tick off the questions and they  know what coming up. 
you can ask are they thinking if chemo radiotherapy? If so from diagnosis ti treatment starting how long are they looking at. I was 63 days from being put in pathway seems a long time but there’s lots of planning. I had tonsil cancer with to start with several lymph nodes by time treatment started it was in 7 lymph nodes. I wasn’t a candidate for surgery as some nodes were too close to spinal cord. 
As oncologist to explain the high grade as many head and neck cancers are put  purely and simply they aren’t slow growers. But don’t stress I’m still here along with many of us in here. Head and neck cancers do respond well to treatment. 
you can ask is there any local spread or did they get clear margins 

My oncologist opening remarks to me he was in looking to cure me but apologise pe for the brutal treatment ti come which was fair enough. 
Hazel xx

Hi Maria. Take a deep breath. Pleomorphic adenomas are the most common salivary gland tumour. They are considered benign but some of them develop into cancer which is what’s happened. You have a cancer inside a benign adenoma. The fact that it’s aggressive is neither here nor there. It’s what the histopathologist sees under his microscope. It doesn’t mean that it’s spread anywhere. 
The main question to ask is what the pathology means in relation to treatment. 
Ask whether all the cancer has been surgically removed with good margins and will you need anything else. 
Get your consultant to explain exactly what is happening so you understand and note everything down. If yo can take somebody with you as an extra pair of ears. 
Best of luck and let us know what happens 

Good morning

Met my oncologist yesterday   I asked about TNM and she said that I have T1N1M0.  The Ct scan is clear nothing untoward is found in my neck and chest except that there is a 2.5 mm nodule in my lung.  She said she is not concern about that as normal people have them too.  She said it just need to be monitored in the next 3 months.  I would need another surgery because from what I understand the histology has shown evidence of salivary duct carcinoma with positive margins. Just to ensure affected parts are completely taken out. She referred me to a professor  who is part of a specialist team in Oxford for this operation. So in tuesday evening I will be seeing professor and a Mr. don’t know why 2 people have not asked my oncologist about it. Next step is 6 weeks of RT. Also saw the opthalmologist yesterday. I am now taping my eye and applying lacrilube every hour to lubricate my eye. He said he can start to see ulcer forming in the eye that I cannot shut completely.  I have been very diligent with my creams but I guess it was not enough. I felt slightly better knowing what I will be facing in the next few weeks or so. Feel overwhelmed at times. I feel sorry for my husband as my main carer. He told me this morning it is getting to him - uncertainty and the responsibility.  Even filling the critical illness form completion is now delegated to our children.  

regards

maria

Hi Maria 

well at least you now know what’s happening and that you are in the care if a specialist. When you see your new surgeon ask him what exactly is going to happen to your facial nerve? 
As for lung nodules I had two, was rescanned three months later and all was well. 
The RT is tough but doable. Side effects can be  managed. 
It will be tough on your husband. The next few months are all about you and carers get left behind. 
If he is that sort of chap there is help available from Maggie’s and particularly  from the Swallows Head and Neck Cancer Charity who have a strong carer section. 
My husband is a stoic Yorkshireman and just put  his head down and got on with it and looking for help for himself would never have entered his head but I know he had some dark moments that he had to manage on his own. I wouldn’t have survived without him. 
Let us know how things go 

Hi Maria. As Dani says Radiotherapy is tough but if I can do it anyone can. My husband did everything for me he in efffct became me  he shopped cooked cleaned drove me everywhere. He became keeper of my medication sorted my feeding tube out. The only thing he didn’t do was online banking lol I nearly delegated that  but didn’t. He like Dani’s husband is a stoic Yorkshire man he got his head down and did it. . Macmillan nurses used to ask him how was he coping. He always replied it’s Hazel that’s going through the treatment not me I’m fine. I too know he had his dark moments. He had a friend Rob who he could go and talk to even now I know he shed a tear.  You will both get there in now 4 years post treatment and happily living my life xx

hugs Hazel x