hello my names samantha and im 20... i was told on 2nd may 2006 i had siliviary gland cancer and since then i have had surgery and am recovering everyday... my consultant and the radiotherparist at christies hospital manchester, have had a conflict of opinions on wether i should have radiotherpary with me being so young. all signs of the cancer have gone after surgery and now they are giving me the choice weather to undertake the treatment as they say theres risks either way. i was just wanting some advice and more infromation on radiotherapy before making this choice so any advice would be great...

Question:
what are the long term effects of radiotherapy

Choices:
dry mouth
damage to jaw bone

 

Hi Samantha. I'm not a doctor, so cannot advise professionally . However, my gut feeling is that if all signs of the cancer has disappeared not to go with the radiation therapy now.

Is it possibile for you to have a PET scan to see whether there's anything lurking?

If you have regular check ups with the consultant, he/she should be able to notice any signs of problems and they say that if you are clear for 5 years after treatment it should be ok.

My radiation therapy specialist explained in detail all the things that could possibly go wrong (worse case scenario) before I had radiation treatment and frankly scared me somewhat (for want of a better word). RT wasn't pleasant and luckily I haven't had the WCS yet and my advice to anybody would be - if it's not absoultely necessary, don't do it!

Fingers crossed that you are ok!

Pete

thanks pete..
my consultant doesnt think i should have radio either his reason being all of the worst case scenarios and with me being so young how this can effect the rest of my life but im being checked every month and have scans every 3 months so hopefully if something comes back then we get it quick.. my only doubt is that the radiotherpaist thinks i should have it as my tumour was a high risk tumour and with that is more likely to come back... its a very tough decision.

A PET scan?
I found out what one of those was today - 2 years after my original diagnosis. I have to travel over a hundred miles to get it done in 2 weeks time on the NHS.

I wish I'd known about them 2 and a half years ago. I would have paid myself to get it done knowing now what I didn't know then!!
It would have alleviated a LOT of suffering and have given me a MUCH better prognosis.

Tony K

What is PET?

Positron Emission Tomography (PET) is a powerful imaging technique that holds great promise in the diagnosis and treatment of many diseases, particularly cancer. A non-invasive test, PET scans accurately image the cellular function of the human body. In a single PET scan your physician can examine your entire body. PET scanning provides a more complete picture, making it easier for your doctor to diagnose problems, determine the extent of disease, prescribe treatment, and track progress.

For more info about PET scans, click here

Dear All
Regarding the PET scan in relation to my situation, I had one done before I was diagnosed, as the consultant wasn't sure where the source was.
The source, however, was very clear when the pictures arrived. I had another scan just over 3 months after my last treatment day. The comparison between the 2 scans was obvious even for me - no signs anymore

The costs here, per session is the equivalent of about 800 pounds (which luckily my insurance pays for) When I asked my consultant whether I would be able to have one at a later stage - just for "peace of mind" he said that, of course it was possible but with regular appointments, he should be aware of anything unusual happening.

Samantha, I understand that you have a tough decision to make but I suggest that you think about it for a while - you can always do it at a later stage if really necessary.

Hang in there - Pete

im goin to the hospital on tuesday and still havent made up my mind... im goin to ask for a PET scan and see what they say... bit confused about it all to be honest

Hi Sam,
To be honest I don't think you'll get a PET scan.
It's expensive. You've had your surgery and you are clear.
Now, radiotherapy, if you have it now you will never be able to have it again. As you know once you have had your dose of it that area of your body can take no more.
Personally - I would have it - you will have to suffer some side effects - but you will get more peace of mind.
You are young and will get over things more easily than the older generation of sufferers!

Obviously,over a period of time, you will have to monitor your dental health. My teeth are still fine 20 months on. In no worse condition than what they were beforehand.
As for lack of saliva - you will get used to it.
Talk about the options of combined chemo and RT . Statistics prove it gives better outcomes.
Another drug, erbitux/cetuximab, is new on the market. Statisically its use improves outcomes too.
Discuss all of this with your consultant.

Good luck Sam I think you will do well whatever choice is made.
Tony K

This message has been edited. Last edited by: Tony K,

Samantha,

Personally I would wait on having radiation treatments. If the surgery went well as they said it did; give it a bit of time before thinking about radiation or radiotherapy as it called in the UK. If you can be checked regularly.
In my situation; I was given a choice of facial and throat disection with no radio; partial surgery through the mouth and then radio, or radio. I opted for nothing; the Dr's said I would probably die without treatment. So I went with the least invasive at least in cutting. Radiation only. Surgery would be used as they call it here as a salvage option. If the radio did not work. Radio can not be used again in the same area, as I was told.
Wait, if you can; I do not know how your insurance works. I have read they are developing treatments that can target an area specifically, sparing the loss of certain healthy functions.
If there is no sign of cancer, I would wait.
Radio destroys a whole lot more than your taste. You can consider it if the cancer comes back. Other opinions say differently; who will ever know what the right decision is??

None of us do - go with what you feel is right for you; and BTW take good care of yourself and know I am thinking of you.

Hi Samantha,
I'm new here too and just wanted to send you my best for your trip to the hospital....
Obviously, in your asking about whether to have radiotherapy or not, you're unsure and confused. I hope that the docs allow you to take as much time as you require to make your own descision and remember, if it's not as educated a descision as you'd like it to be, ask for more time and do some more research...at the end of the day, you;ll know in your heart what's best for you once you have explored all the avenues that your questions will lead you.
Thinking of you and looking forward to hearing how it goes!!!

Hi am also new and i am not a doctor I am 22i had no choice but to have radiotherapy after my tumour was removed on my upper palate i can not advise you either way but what i do know is that the radiotherapy kills the cancer cells that were not removed by surgery this should be disovered by the histology if they are convinced they have removed it all i would not have it but if they unsure i think it is wise to go ahead and have the radiotherapy i will not lie it is a difficult experience and the lack of saliva is a minor problem compared to ulcers and just the pain that developts but everyone is different and the hospital provide so much support it passes and the side affects in my experience do not last forever i had my (30 days of radiotherapy finished in April)
I want to wish you all the best and not to fear what ever decision you make it has to be right for you in the long and short term you should take as a positive that your doctors are agree to differ as they are viewing all the options All the best for your future Mel

Hi Samantha,
I have recently undergone surgery for squamos cell carcinoma, in english that just means I had cancer on my tongue. First let me say that this is my second time with cancer. The first time I was only 20, I had the cancer removed and then had Radiation therapy, while difficult it was worth it. I was cancer free for 18 years, now I have to be honest and say that this cancer is considered to be radiation induced. However, this time I will have radiation again to the same affected area. The reason I can have it is over time the radiation in my body is lowered. Also Radiation therapy has come so far, they only radiation the effected area. So where I had radiation from my mouth down to the bottom of neck 19 years ago, this time I will only have the tongue radiated. I hope this helps. Like you I am struggling with eating, talking and so on. But with time I hope to make a full recovery as I am hoping for you. Either decision I wish the best for you. Good luck with your appointment.
LeAnn