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Hi All, do not know how all this works but maybe someone can give me some advice or help about my condition. Coming up to 6 years ago I was diagnosed with multifocal mucoepidermoid (no idea what that means) cancer of the right parotid gland. I underwent surgery and had the parotid gland and nearby lymph node removed the operation did not effect my facial nerve, I had no other type of after treatment. Now November 2019 after swelling over the area of my operation and a biopsy I have been told that the cancer has returned, I have also been told that I need another operation which will be very difficult due to my previous operation and it has a good chance of effecting my facial nerve. Has anyone been through this second operation and what is the chance of success. Thank you
Hi Pityaker and a very warm welcome to the online community
I haven't had the same treatment as you, as I had a different type of cancer, but I noticed that your post hadn't had any responses. This could be because no one in this group has had the second operation that you're talking about or just that the right person hasn't seen your post yet.
By replying to you it will bump your post back to the top of the page where it will be more easily seen. I'm also going to tag my fellow Community Champions chris2012 and MikeO into this response as they look after this group and might be able to help further or point you in the right direction.
Wishing you all the best
"Never regret a day in your life, good days give you happiness, bad days give you experience"
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Thank you for your reply, unfortunately I am in a very dark place at the moment, I thought I had beaten the cancer so after nearly 6 years this came like a bolt out the blue. I have been told that the size of the cancer is very small, this may sound good but it is sited in the scar tissue of my previous operation and to remove it will be very difficult, the consultant said he would like it to grow a bit bigger so it would make the operation just that bit more easier to identify it and safely remove it without damaging the facial nerve. The down side of waiting is that this type of cancer is unpredictable and has a tendency to suddenly become aggressive and spread to other parts of the body. So it the choice of a rock and a hard place. By the lack of responses to my post it is becoming obvious to me that my cancer is somewhat rare which is worrying. I am a 71 year old man and besides this cancer I am also a full time carer for my wife who has server dementia. So as I said I am in a very dark place at the moment. Thank You
Where are you Pityaker?
Is there a centre of excellence anywhere within travelling distance?
You could ask for a second opinion from a clinician with experience in this. That's what maybe I would do.
I'm sorry to hear that you're in a very dark place at the moment Pityaker but I do hope that you don't think that because you haven't yet had a reply from anyone else in the group your cancer is rare. Lots of people only come on here occasionally so it might be that the person who's had the same diagnosis as you hasn't yet seen your post.
I know that you were originally diagnosed 6 years ago but you might like to take a look at this information from Macmillan on dealing with your emotions. You'll see that how you're feeling is perfectly natural and that there are positive things that you can do to help. Do you have a Macmillan centre at your hospital where you could go for a chat and get help dealing with your feelings or a Maggie's Centre near by? If not you could give the Macmillan Support Line a call on 0808 808 0000 and have a chat about both emotional and practical support. It's free to call and they're available from 8am to 8pm daily.
Thank you for your replies and support, I live in Durham, I know my cancer is one of the most common in the parotid gland especially in woman (which I am not) although generally it is classed as a rare type of cancer compared to breast/prostrate etc. I am quite happy with my consultant and MDT and have complete faith and trust in them to do the best for me and know that the present wait till the new year way forward has its risks but risks I am prepared to take. My worry is that I do not know of anybody who has had this second operation in the same place as the original one. I have made the fatal mistake of googling it but have learnt nothing I already knew from my experience and information from my consultants however as I have said there is nothing out there about this second operation. I know my emotions are very low not helped by my wife's condition which to me is worse than mine and would not wish on my worst enemy. I do have support from varies organisations for my wife but find it hard to talk about my own illness with them. Again thank you for your support
Good evening Pitytaker, sorry that i have not replied earlier but i have been away, I'm like the other guys and can honestly say i don't anything about this cancer. There are so many areas in the head and neck and each one is treated differently depending on how easy or difficult it is to remove. If its any consolation i have had cancer in the head and neck area, twice in the lower jaw area where my jaw was reconstructed. I took a few risks in going ahead with the surgery and it paid off, in the end, trusting my consultants " cunning plans" as he called them, so there is hope out there even if we take a gamble. As you say your wife having dementia must be a big concern for you so its good to hear that there are organisations out there help with support. I'm sorry i cannot help you any further but wish you all the best for the future, take care.
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Hi All, thank you for your replies, just a bit of an update I was called in to see my consultant at short notice (which was a bit worrying) he told me that he had had the full report from the consultant pathologist who had examined my biopsy. He stated that my cancer was a high grade cancer and it should be removed as soon as practicable. Apparently the previous report on my biopsy which he had discussed with me was from lab technicians who had identified it as abnormal and most likely cancer and the new report from the pathologist was a follow up of those findings. After a lengthy discussion it was decided with my support that we would still wait till the new year (January) before any operation, this discussion and decision was mainly based on the fact that during my previous operation beside the removal of the parotid gland the nearby lymph nodes were also removed which will limit the possibility of any spread of the new cancer. So it fingers crossed till the new year and the hope of a successful operation. Thank you all
Hi Pitytaker, thanks for the update, at least you know where you stand now and your consultant is up front with the truth, fingers crossed indeed for your operation in the New Year ,lets hope they get it second time around . Best wishes .
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