Hearing and swallowing problems

Thanks Chris for sharing your experience. I barely slept last night wondering whether I’ve made the right decision or not. If the research papers I’ve read, it’s controversial. I’m scared if it returns I can’t have radiotherapy in the same place although she said there are other things to try (it seems my type of cancer tends to recur but doesn’t respond to chemo, so unsure of how effective other systemic treatments are. Surgery is the best option but I’ve just had that and don’t want to be disfigured or unable to eat /drink ). Argh decisions decisions (I’ve said yes but not had any run up yet or signed consent so could pull out still, although my hubby said I should do it) .  I don’t feel “qualified “ to say if the experts don’t know! 

Hi Elaine. This is only my opinion you’ve said yourself yiu don’t want any further surgery. That can maybe be tried later ? Please don’t go beating yourself up maybe  stick with your decision or ask for a 2 nd opinion you are allowed to do that. As for systemic I would think immunotherapy would  be the logical next step. There’s a few in here having immunotherapy at the moment. It’s not good that your oncologist wasn’t more helpful. But if you’ve decided against surgery for now think  positive and  go for radiotherapy   Hope this helps

hugs Hazel xx

Elaine. You can always get a second opinion from a centre of excellence. You won’t need to see anybody. They will just look at your scans and reports. Second opinions are routine. You won’t offend anybody. You can even go to the States for one. 

Thanks Dani and Hazel, would I contact the CNS for this?? Or do I go via GP 

is it part of Nhs care? 

elaine

You go via your consultant. It really is no problem. 
Re immunotherapy have a look here 

www.salivaryglandcancer.uk/.../

Your consultant will know this. 

And yes. It will be free. Consultants are used to giving and referring patients fir second opinions 

Hi Elaine Danis given info. There is an article here as well 

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/access-to-treatment/different-doctor-second-opinion

Give it a read it explains it for you. 
Hazel xx

Thanks everyone 

I’ve spoken with the CNS and feel reassured. The MDT meeting at the regional centre has the surgeons and 3 oncologists there. They have suggested I need radiotherapy as a preventative measure because of the perineural invasion on the 1st histology report. After the 2nd op the cancer has technically gone but they all agreed because of the previous perineural invasion radiotherapy is a belt and braces approach to try prevent it’s return and/or give more time before it returns. 
she said and I agree, they look at quality of life, future risk of return and of course cost and don’t offer it unless it’s needed. 

so after all that I’m going to just stick with the decision 

(I feel bad because I’ve only done 3 weeks work in 6 months and although I’ve got very supportive employers , just feel like I’m having radiotherapy for prevention whereas people need it for cures , may sound wierd. I suppose the sooner it starts I’ll stop worrying). 

thanks everyone for your support it really helps x

Elaine

Elaine, I’m glad your happy with your decision. It’s always difficult when things aren’t cut and dried and ACC is peculiar this way. The RT is to mop up any stray cancer that was left behind, too small to see on scans and missed in pathology. Best wishes 

Hi Elaine

I too had to make a decision as to whether to have radiotherapy after my surgery.  It was recommended asduring the surgery they found the tumour had attached itself to a vascular vein.  I decided to go ahead with radiotherapy as I wanted to be sure of killing any residual cancer cells that might be lurking.

What do they think will happen about the fluid behind the ear drum? 

Linda x