hi my name is sally.
my partner has been told they think he has a benign tumour in his salivary gland.they have recomended that he has it removed.he is frightened to have this done.i would be grateful to hear from anyone who has had this done.he has had two biopsys both times have failed.they say 80% are benign but they wont know for sure until he has it removed.does this mean cancer.i would be very grateful for any info.

Hi Saly,just thought I'd say a quick hello.I have not gone through what your husband is going through but thought I'd share a bit with you. I had cancer of the tongue in April 2007,after never smoked,drank or was in the age bracket quoted. I had the cancer removed and was in quite a bit if pain for about 6 weeks after. I think any operation in your mouth is sore etc but it does get better so I think anything that can be done for your hubby should be done no matter how frightening it may seem. Unfortunately my cancer spread a bit more into my tongue and lymph nodes so had to have a further major operation and radiotherapy to get rid, I've now been cancer free since August 2007. All I would say to your hubby is just make sure they biopsy iy properly.Oral cancer if caught early is treatable. Don't put things off just because your afraid. Its probably going to be fine but its better to know sooner rather than later.

Good luck,take care for now<Sammy x

hi sammy,

Thank You for your encouraging reply.it sounds like you have been through the mill.my partner has decided to have the op he is more concerned with the general anesthetic(he had a heart attack in 1991).he is due to see the consultant 11th june and they will arrange the opp.the opp wont be done at the local hospital but at a hospital about 100 miles away(they specialise in facial surgery).i have told him i will be there for him and not to worry.he found your reply reassuring and wishes you all the best for the future.thankyou sally

Hi Sally,

I, like Sammy, had tongue cancer and had to have the tumour removed through surgery. This was a year ago and I have to say I didn't have too much pain after the surgery, it was more after the radiotherapy, but of course we all have our own pain threshold.

I am glad to hear your partner is going through with the op because my opinion is, anything they suggest they can, or should do, should be done.

My hubby is not here at the moment, but if he were I know he would sympathise with you having to travel to a hospital so far from home. I was in a hospital only 50 miles from home and I could see how this was tearing at him. For all the love and care you give to your partner, it's very important that you look after yourself too.

If at anytime either you and/or your partner are feeling low, come on this site, have a good moan, express your concerns or worries,, as I can assure you there will always be someone who will give you good advise or pick you up and make you smile. Joining this site is the best thing I have ever done.

I wish you both well, keep in touch.

Sue x

HI sally,My name is San.
I had the same problem, only when I had it removed it turned out to be an acinic cell carcinoma of the parotid gland. I would think it is better to be sure.

I think I have the same thing, a pea sized lump. When I press on it it goes away. It doesn't hurt. Any harm in leaving it alone? I hate going to the doctor. I'm 46 and in good health, never smoked.
tammy

Hi Tammy

Even though you hate to go to the doctor, it would really be the best thing to do in this situation. Don't give up--"I don't know" is not a diagnosis. Do you have someone who could go with you?

Only a doctor would be able to tell you what the thing is and whether it would be ok to leave it alone. The sooner you get it looked at, the better off you'll be.

Julia

Like it or not it's definitely better to get it checked out properly. Better to catch it early. No doubt. It's a scarey proposition but leaving it and i spreading is FAR SCARIER!

Tony

Hi there,

This is the first time I've looked at the Mouth Cancer Foundation Forum - I wish I'd visited before!

I also had a small pea sized lump in my right parotid gland. I had an ultrasound and fine needle aspiration on 5th January 2009 and the results were inconclusive. This was followed by an MRI and the ENT consultant said it was highly unlikely to be malignant as it's very rare but that it needed to be removed so they could biopsy it.

I had surgery on 20th April 2009 and got the biopsy results on 30th April - and, rare as it might be, the diagnosis was Acinic Cell Carcinoma.

Before starting radiotherapy I had a dental check up and had to have the 2 wisdom teeth on the affected side removed. Radiotherapy was every day for 6.5 weeks. I finished that 5 weeks ago and I'm off to Egypt on 5th October for 2 weeks and will then be returning to work.

All I can to everyone out there is DON'T JUST LEAVE IT TO GO AWAY - it's just not worth the risk, no matter how scared you are. I'm terrible with hospitals, needles etc. but somehow there was the inner strength to deal with it all - everyone has said how positive and cheerful I've been (even though I might not have been feeling that way inside).

If anyone wants to talk about this more then I'm here.

Thinking of you all and wishing you luck.

Henryscats

Hi Henryscats

Good to hear from you and welcome. Sounds like you are doing well and getting on with life after treatment.

Which part of Egypt are you going to? Or are you planning visiting different sites? I spent many months in Egypt before I became ill. Not sure how I would cope with the heat now.

Good luck and enjoy

regards

Ken

Hi Ken,

Good to hear from you - thanks for the message.

We're going to Sharm El-Sheikh for 2 weeks relaxation - we'd actually booked it before I became ill but the timing has worked well - a change of scenery before going back to the rat race! I would love to do the Nile Cruise and see all the historical stuff but unfortunately this doesn't appeal to my other half at all, so I guess that's something I'll do without him!

Fantastic to see that you're a year on from your treatment. I've got my first check up at Barts next Wednesday - the first of many, it would seem! I still sometimes find it hard to get my head round the fact that I've had cancer - some mornings I wake up and it just feels surreal and like it hasn't happened to me. Anyway, here's to many more years as a survivor!

Keep in touch - all the best.
Alison

Hi Alison,
It sounds as if you are doing great. May I ask what side-effects you had from the RT? For three
months after RT I had a serious postural hypotension, so much so that I could not stay on my feet for more than a few seconds, and was constantly nauseous. A short course of cortisone brought that under control, but even now, two months later, I still tires very easily. I also wonder about the RT treatments. I had treatments for four weeks, and every one else seems te have had six weeks. my tumor was 2.5 cm., and the margins were not clear, so I worry. Would you let me know what after care you are getting? According to the internet there are all kinds of tests and scans to be had, but all my surgeon does is feel around my neck, and that is still swollen and hard, so I do not think he would be able to feel anything. How is your mouth? At five weeks mine was still a big mess, and I had this horrible salty taste in my mouth. Sparkling water with a little ginger ale helps for that, in case you have the same problem.
Wishing you al the best,
San

Hi San,

I'm sorry it's taken so long to get back to you - too much going on! I feel that I'm doing really well and am glad to be on the road to recovery. The main side effects I had from the RT were tiredness, sore gums/mouth/ulcers, some skin reaction and loss of sense of taste. Pretty much all of these have now resolved although I still feel tired sometimes.

Sorry to hear about the postural hypotension - that must have been very debilitating. How are you feeling now? My treatment was every weekday for 6.5 weeks, so 33 treatments in total. My tumour was approx. 1cm and they were unable to remove it completely in surgery, so I had the RT because of the margins. My oncologist has tried to reassure me that it's highly unlikely to come back but I have seen on some website information that in the parotid gland reoccurrence happens in approx. 5% of cases. I'm doing my best not to dwell on this - at the end of the day, whether it comes back or not is in the hands of a greater force than me!

Thanks for the tip re. sparkling water and ginger. My tip to you is lemon juice made with mineral water - really refreshing and tastes good!

I'm going away for a couple of weeks R&R on 5th October but will mail you when I get back if I haven't heard from you before I go - would be good to keep in touch to compare notes and give each other some support.

Take care - thinking of you.
Alison