Salivary gland cancer

You are not alone on this journey, I too have suffered with my mental health. It’s a huge thing to get your head around, I had some Counselling that was offered to me and it did help but really no matter how much support you have it’s only you who can get your head around what is happening and accept the new you. I have some days when I just feel as if I am sinking and these days are normal and all part of your recovery, you have to grieve what you have lost. I am quite happy for you to keep in touch and ask any questions along the way. I finished my Radiotherapy on 5th November last year. I’m not sure how to send photos on here. Are you on FB. You will see from my pictures that I have come through it all ok and you will too xx

Mrs AM said:

p.s. I don’t know how to send you a private message though I have accepted your friend request.

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Good afternoon.  Just an update.. I had my second operation(11 hours) 4 weeks ago. The purpose was to ensure that there is clear margins and a facial reconstruction. Currently trying to recover from it. Still using one crutch whilst walking. Face is numb and swollen and eye not closing properly. My facial reconstruction is a work in progress.

The pathology report from second operation is good news.  No spread to the nodes in the neck and clear margins. 

Been to see my oncologist and I was given the choice whether to have RT or no RT.  However as the pathology result from my first operation said that it is stage 1 high grade carcinoma inside a recurrent pleomorthic tumour she felt that RT  would be better as RT is more effective after surgery.  

She also said that having no RT is a valid option as I had already an extensive surgery and I will need to be monitored in the future.  I can still have RT in the future though not as effective. I have spoken to my ENT doctor last week and he said he sits in the fence with whether I should have RT or not as I remembered him telling me that he took all the cancer cells after my second operation.

I am in a dilemna.  I wanted to heal up and let my face settle as it needs more doing to it.  I am also dreading the side effects of RT. Any input would be great.

thanks

maria

Hi Maria. Thanks for the update.

You seem to be making a brilliant recovery. 

You are in a dilemma. To my mind I would listen to oncology rather than ENT. I would trust somebody who knows about cancer.  You can always get a second opinion. You wouldn’t even need to be seen. The referring clinician would simply look at your notes. I hope you get  an answer. Best wishes 

Hi Maria. Good to hear from you. I too would go with my oncologist as he’s the cancer expert. The radiotherapy is hard I was 61 and I coped with ur. We don’t get all the side effects remember that. I’m 4 years post now and happily living my life. 
Hazel x

Maria 

This is a difficult one and has to be a personal decision based on your appetite for risk and what you know about where your currently are.  I am one of the relatively few people who had surgery but had kept radiotherapy in reserve.  Now 3 years post diagnosis and doing well. 

Hi,

Happy new year. Sorry for delayed response.  Just wanted to thank you for your input whether to have RT.  I decided to go for RT.  Before RT I am due for another small op next week -  eyelid gold weight, face liposuction and hole in my ear widen a little bit as my ear over healed according to my ENT. 

just wondered if anyone has experience an eyelid gold weight and how did they find it.  2 weeks ago I also started to have shoulder blade pains. I had neck dissection of 29 nodes. The speech therapist said it might have affected my shoulder muscles. My shoulder feels tight and stiff. Has anyone experience this?  

Many thanks,

Maria

Shoulder pain on the side of the dissection is quite common - all to do with the accessory nerve.  Get some physio and it will probably go over a period of 18 months or so.  In my case I could lift almost any weight close to my body (I built a summer house 2 months after my dissection) but could not reach out for a cup of coffee.  Now I am more or less back to normal.

I have had a double neck dissection and suffer from shoulder and top of neck pain. Physio has helped and I have lateral reach problems, time and physio as Peter suggests will be the cure for that, 

Thank you for your reply.  I will book physio for my shoulder.

Many thanks

Maria