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I'm in a state of disbelief having only been diagnosed a few hours ago but really feel the need of support from people who are/have been through the process themselves. I'm also wondering if anyone here has experience of mucoepidermoid carcinoma - my consultant was less than communicative (and saw fit to take a personal call on his mobile phone 2 minutes after diagnosis...) and I'm in limbo-land until I have an MRI. Obviously I've been Googling like mad since I got home (hence finding this lovely, friendly website!) but can't find much specific information about circumstances that match my own - for instance the cancerous lump is at the tip of my tongue and has been there at least 10 years! It was checked out at the time but was dismissed (from memory)as a blocked salivary gland and only recently looked different (a small white patch formed) so was investigated again. I've therefore no idea if it was originally misdiagnosed or has turned cancerous recently. In a way, I'd prefer the former to be true because the fact that I'm still here a decade later gives me some reason to hope! Particularly when the 5-year survival rates seem to range from 0-90something percent...
Anyway, any words of wisdom or comfort would be GREATLY appreciated, as I'm sure you long-term survivors must feel you're repeating yourselves sometimes!
I am sorry to hear the news you have been told.The mental turmoil you must be going through can only be understood by others who have been in the same situation.
I am one of those who subscribes to the fact that the only definite diagnosis comes after a biopsy where a decent amount of tissue is used/taken.(Not one of those waste of time fine needle biopsies).
If that hasn't been done do not think the worst. You still have a length of road to travel before the supposed worst case scenario appears.
Only when the biopsy results are through can they be sure.
I just fell upon this site and your post. I was just diagnosed this past January. 4th round with cancer for me. I opted not to do surgery which would mean losing 1/3 of my tongue according to the surgeons or chemo or radiation at this time. I am doing Chinese medicine, acupuncture, lots of veggies, only 1% maybe of processed foods, no sugar and focusing on my body healing itself. The body is so powerful. So far my neck tumor has shrunk from 1.7 cm to 1.5 cm. This is my personal choice at this time. I am a survivor of abuse and I have always had problems with expression of my deepest truth. Had problems with vocal cords too. PTSD. I am healing body, mind and spirit to unblock the body memories I have held onto. I am amazed on the rise of population of people who mouth, head and neck cancer. I am not happy with the pain I feel which seems to come and go but I am motivated to speak my Truth at all times to all people, like never before. I will send you love and light. Stand your ground. You deserve to be treated with compassion and kindness. To thy own self be true. xoxo
Thanks VERY much for your replies, Tony and Julie. Tony, it was diagnosed after a biopsy about the size of a penny which involved 5 stitches so I'm guessing that's probably not a fine-needle biopsy? Plus the consultant was so generally cagey, I'm pretty sure he wouldn't have stated it unless he was pretty sure. Just finding the not-knowing about whether it's gone anywhere else hard to deal with until I have the MRI scan and then the results.
Julie, sorry to hear you're in a similar boat but am really interested to hear about your diet. I too gave up sugar recently (to try and help my Fibromyalgia which I'm predominantly housebound with already) and haven't felt any better yet but I'll keep at it - gives me a sense of purposeful involvement if nothing else! Lashings of love and light to you too.
the mri will show spread and I think you won't have any. If you have not been having any neck /lymph swellings or discomfort that's great news. You appear to have been following this tip of tongue patch for a good while. You have been proactive and the prognosis for early diagnosis is usually v good indeed.
Mine was a very late stage 3c 7 and a half years ago. Mentally and physically I was wrecked. Still here (not without the odd scare from time to time - see recent posts -)
Good luck and be positive
Julie good luck with your alternative therapy/treatment. Listen carefully to your consultants too. Surgery is also a good route.
All the very best. tony k
Tony, is there any chance you could knock out a few quick qualifications and become my new consultant - you're infinitely more soothing than the one I've got! Yes, I'm relieved to have no lymph swelling but I've had an odd cough and a tight chest for a couple of months - had assumed they were just a virus but now I'm wondering. Plus the consultant said the cancer was likely to have been there 'for some time'. Also very physically restricted by my fibromyalgia/chronic fatigue so it's hard to find low-energy activities to escape from my uber-anxious mind at the moment. Anyway, I will hopefully know the extent of it soon. It's reassuring to hear you've come through so much from what must have been a very scary diagnosis. Fingers crossed you're right about me having no spread and many thanks for your calming words.
you need to go to your gp with your concerns and ask for an x-ray of the chest.
Both my gp and consultant sent me for chest x-rays to ease my mind showing things had not spread. It's not expensive so it should be quite quick and it would put your mind at ease. And I know from my own experience how important that is.
cheers Tony K
Welcome to the club no one wants to join, I am a care giver not a survivor, not the same but I can tell you this place is wonderful - friends, advice, shoulders to lean on - tonyk is right, get the chest xray to ease your mind. It does sound as if you have been proactive and it may be early. My father had one lymph node the size of golf ball before he went in - he was stage IV - that was 3 years ago and he is now in remission - not always an easy road but a hill that can be climbed - you can do this - breathe, listen to your body, learn, ask, come back here
Thanks very much for your advice HelpingDad and yet again for yours, Tony. I was assuming that my forthcoming MIR would indicate any potential spread and therefore they might investigate lower down at that point if necessary but I'll ask my G.P. about a chest xray anyway. Is it even likely the cancer could bypass the rest of my mouth/throat/neck and park up further down? My medical knowledge is so basic! I'm very glad to hear your dad is doing well, HelpingDad and it's informative to hear about other people's presenting symptoms (none of the links to the personal 'stories' on this website's homepage seem to be working at the moment but I have contacted the tech support about it so hopefully it will be resolved soon) - I know I'm in danger of overanalysing mine at the moment but was concerned I didn't mention the throat discomfort to my consultant. I'm also very glad I ignored (and told him I would be!) his categorial instruction to refrain from Googling my diagnosis - finding this website and supportive people like yourselves has been nothing but a total blessing!
Have just been contacted by tech support and looks like I'd ended up on the old homepage. (am guessing the forums and general info are hosted by different websites?) On the offchance anyone reading this wants to find personal stories, they are here:
How long is it to your mri appt? You push them-why should you be kept waiting. After the mri ask how long before you get results. Should be on the system in 3 days. Keep pushing. I waited over 3 weeks for mine. I had large neck tumours and the results weren't passed down the line.As I said you have to be proactive.
I have a web link to a Cancer Survivors Network which has lots of people who have had treatment (some of it v arduous). They are all brilliant positive survivors over many years . I can give it out if you want.
cheers tony k
THE CSN link is specifically for your type of cancer.
Is this the link you mean, Tony?
Or is there another as the one above is not often contributed to? Yes please to any different links you might have. I haven't been given a date for the MRI yet - the consultant said 'in the next two weeks' but I'm going to ring my GP on Monday with my concerns. Do you (or anyone else reading) know if it's customary for consultants to give them their direct contact details too? I have found various email addresses for him on my Google travels but have only ever been given the phone number of the reception desk for the dental department.
Ask for a direct number to the relevant radiology/mri appts section and ask directly when it is. Go to your gp. Speak to the consultants secretary. Push push push! It's your life not theirs. Their inactivity 8 years ago approx nearly cost me my life. 7 months from symptoms to radical neck dissection. I had an awful lot of tissue removed. It should have been much less because it should have been diagnosed so much earlier.
ps that's the link. Even if there seems to be a spread to the lung it's localised so it's quite treatable.
surgery is surgery. It's not so bad honest. time flies by (it did in my case) and when I realised i wasn't going to die. I started to feel better.
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