Parotid Gland removal

Hi Trev. I might see what the consultant says and if you’re still not happy you can seek a second opinion. None of your consultants will mind. Second opinions are common. Is this parotid affected by the radiotherapy? One of mine was largely spared but the other is knackered. I’d hate for the working one to go. Just a thought. 

Hi Dani

As far as i am aware they only irradiated the one carotid tumor and the tonsil tumor- they didnt irradiate the parotid gland at all and the consultant said it would be dealt with at a 'later date' which of course is now arriving. I was quite surprised reading this site to see people having lymph nodes removed etc before radiation as none of that was an option for me (possibly due to covid) and they didnt blast the other lymph nodes at all either.

So given the distance between the sites i would have thought the functional parotid gland would be undamaged.

It was presented to me by my oncologist as a 'risk of cancer in 10 or 20 years from now' but he never went into detail.

Trev

Of course. I remember you talking about this. I had base of tongue cancer on one side and the way the beam is aimed it’s inevitable that the parotid gland on the side of the tumour whether it’s tonsil or tongue gets fried. 
I think I would get as much professional advice as possible. The parotid is in two parts with the facial nerve running between them. 
I can’t comment on lymph nodes as I didn’t have any cancer in any of mine. 
Some people who do have a neck dissection before RT. Some others ( Hazel RadioactiveRaz for example ) had cancer in her nodes but one was too risky to excise so she had them zapped. Again, it’s something that your surgeon must explain. Let us know how you get on. 

Hi Trev some hospital s fo neck dissection as routine prior to treatment some  prefer the blast away with radiotherapy and chemo no right or wrong way. I wasn’t a candidate for surgery as one pesky lymph to close to my spinal cord to operate. I would see what your consultant has to say like @Beesuit says you can ask for a 2 nd opinion 

Hazel x

Hi Dani, the parotid tumour is the same side as the carotid and tonsil tumour so fingers crossed the other side is still good

I will definitely ask however about the risks and benefits of surgery in full.

Hazel- As you say some dont have dissection- none of this was explained to me though, i had a twenty second phone chat saying 'its cancer and we are going to do chemo and radio' then later the oncologist i was referred to had me in and out of the office in as little time as possible (i timed the last one and it was well under four minutes). The day i got my scan results he looked visibly annoyed at me asking more than a couple of questions 

I will stand up for myself and not be bundled out and will ask more questions this time

(if i sound churlish, the rest of my team were excellent!)

TrevW said:

I will stand up for myself and not be bundled out and will ask more questions this time

Take a list in duplicate and hand one to your consultant 

It might be an idea to email the same questions to his secretary before your appointment too. 

Hi Trev, I had a  deep lobe parotidectomy in Aug 20 for a malignancy. My surgery took somewhere between  six to seven hours and recovery has been uneventful from it. I took a combination of paracetamol and ibuprofen for the first couple of days and have needed nothing further. The scar is healing well and is unnoticeable, but i do have a lot of hair so that helps.   If you're tumour is benign there is a good chance it could be a pleomorphic adenoma some of which do turn cancerous over time, so definitely worth getting it removed. The op itself was easy to recover from, I was back to normal within a few weeks. As for side effects, i've pressure in my ear, my face still swells at times (particularly after doing anything strenuous), I'm still numb on my cheek, jaw, around my eye and ear but all these things you kind of get used to. If i'm busy I don't notice them but if i've got time on my hands then I do. All in all i'm glad it's gone,  Cat

Thanks cat, that is really really useful info, thanks i appreciate it!.

Trev

Hi Trev , it does depend on what the new consultant/Dr says, if the partoid gland is not cancerous could they not leave it in, i had one removed along with lymph nodes as they were cancerous or likely to be. Removal of the parotid gland will cause  quite a bit of saliva loss as i found out although my consultant said the other saliva glands will work harder to compensate . Mine was removed when i had my first op which was floor of the mouth and part of the tongue so i could not really say what side affects i had as it was all combined , but deffo lack of saliva . Wishing you all the best,take care .

                                                                                             Chris 

Hi Chris, i am probably jumping the gun as i havent seen my new consultant yet, it was receiving my appointment letter that triggered the question

My original consultant seemed to think it very likely that the parotid would go, but thought it unlikely they would remove non cancerous lymph nodes, although possible.

Yes its the saliva loss im concerned about, but also the small risk of nerve damage, but of course that is better than it turning malignant. 

Thanks again.