Complete parotidectomy

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Hello

I had a superficial parotidectomy back in April this year, and it's been confirmed that I have mucoepidermoid carcinoma (salivary gland cancer). 

I have two options which I would like to get an opinion on from anyone who has had the same procedure:

  1. Complete parotidectomy to remove remaining tumour and salivary gland.
  2. Radiotherapy.

If anyone has any advice, I'd be very grateful.

  • Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Good evening Vegan Queen, its always hard when given choices. I think a lot depends on the recovery/cure rate percentage-wise and the side effects. I have had three big operations in the head and neck area with chemo/radio after my first operation, during my first operation i had saliva glands removed as well as lymph because my consultant said they were cancerous. He always said to me we plan an operation but its not until we start the operation that we can see if any more issues are there that's why they removed some saliva glands and lymph to make sure. Sometimes its better to have the operation first and if it comes back then they can do radio/chemo, it can be done with radio/chemo first then an operation after.  Sometimes the treatment can damage the skin tissues etc making operations a bit trickier that's why it might be worth having a word with your consultant again before you make a choice. I wish you all the best and good luck with the operation or treatment,take care.

                                                                             Chris x

    Its sometimes not easy but its worth it ! 

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  • Hi Vegan Queen

    That's a hard choice to make. Like Chris I have had 3 major ops and after the first 2 had radiotherapy. I had no choice about having the ops so did not have to make a decision like you have to. However I figured that the ops would hopefully take all the cancer and the radiotherapy would mop up anything that might be left. In all cases it has worked well for me and it is now 2 years since my last op. Not the same as yours but for jaw cancer. I have been happy with the result each time although a major op does take a bit of time to recover from and to adapt to the changes. I am currently cancer free so am happy with that.

    Your consultant will give you the pros and cons of each option so weigh them up and ask all the questions you need to.

    Sending you my best wishes

    Lyn

    Sophie66

  • Hi Vegan Queen,

    I had a lump removed from under the back if my jaw last December, they couldn't tell me before whether the lump was cancerous despite three biopsies, so I was advised to have it removed. However the location of the lump meant it's removal was very close to some facial nerves, because of this the surgeon couldn't remove all that he would have liked to, I was told that ideally they like to remove the lump and a small amount of the surrounding tissue as well; just to make sure they've got all the nasty bits taken out. Subsequently the lump was found to be a Mucoepidermoid Carcinoma and because they were not able to remove the lot (only tiny bits were remaining) I had 30 radiotherapy sessions a couple of months after the surgery. I mention all of this because I had a parotoidectomy and still had to undergo radiotherapy and the need for radiotherapy wasn't even mentioned, until after the surgery.

    If I could have had the lot removed during the operation, I would have prefered that in hindsight, the radiotherapy is fine and only takes a few minutes each session, but it has taken me longer to recover from that than the surgery.

    However, I can honestly say that if I was faced with this again, I would still trust the advice of the surgeon and have surgery.

    This may not be much help and everyone's case is different, but I have been through both treatments and if I had to do so again, then I wouldn't hesitate.

    I hope that helps.

    NickyW

  • Hi Vegan Queen,

    I'm in the same position. Had a partial parotidectomy a month ago, then confirmed diagnosis of mucoepidermoid carcinoma. They had clear margins for most of it apart from near the facial nerve which was <1mm. So my options are either to wait and see (if it came back I'd then have to have surgery, which in my case would most likely sacrifice the facial nerve causing palsy), or radiotherapy to reduce the risk of it coming back.

    Have found the decision really difficult (I'm in my 30s so need to consider long term risk of radiotherapy) but we decided today to go for radiotherapy. Hope it is the right decision. Have you decided?

  • Thanks everyone for your input. I've been giving this a lot of thought over the past couple of weeks and have decided that an operation is the way to go. My reasoning is that surgery will be quicker, and I would hate to have weeks of radiotherapy, only to be told that I need the op anyway. Extenuating circumstances have also contributed to my decision. I lost a friend to bowel cancer in May, my mum is currently under investigation for bone or uterine cancer, and having this hanging over me for the next however many months is not an inviting prospect.

  • Good luck. Fingers crossed that you wont need radiotherapy afterwards. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge