Very disappointed I wasn't told that salivary gland damage was a permanent quality of life change

Skiffin16

minty01 said:

hi
Hi you havnt said what level of radiation you had , im going through the same have been very depressed due to taste buds gone , they have told me taste will come back in time as i am on a low dose treatment , i was ready to give up the treatment and everything i am lucky enough not to have full blown cancer for that i am very grateful , but i do know exactly where you are coming from on how you feel , even now i have my doubts i will get my taste back .

Regards Ian

Full Blown Cancer
Not sure what you mean by full blown cancer... I think you either have it or you don't..other than staging.

As for myself I had somewehre in the neighborhood of 7000gy on the right (infected side) and 6000gy on the left.

IMRT, 35 days 15 plus minutes per day.

JG

minty01

Skiffin16 said:

Full Blown Cancer
Not sure what you mean by full blown cancer... I think you either have it or you don't..other than staging.

As for myself I had somewehre in the neighborhood of 7000gy on the right (infected side) and 6000gy on the left.

IMRT, 35 days 15 plus minutes per day.

JG

hi
hi jg sorry for my terminology ,, no i dont have cancer i had to have radiation as after the second operation surgeon could not get all of the tumour out due to scar tissue from the first op and trying to avoid cutting through the facial nerve .

At the end of this week i will have had 25 sessions lasting 15mins

ian

minty01

Skiffin16 said:

Full Blown Cancer
Not sure what you mean by full blown cancer... I think you either have it or you don't..other than staging.

As for myself I had somewehre in the neighborhood of 7000gy on the right (infected side) and 6000gy on the left.

IMRT, 35 days 15 plus minutes per day.

JG

hi
hi jg sorry for my terminology ,, no i dont have cancer i had to have radiation as after the second operation surgeon could not get all of the tumour out due to scar tissue from the first op and trying to avoid cutting through the facial nerve .

At the end of this week i will have had 25 sessions lasting 15mins

ian

Skiffin16

minty01 said:

hi
hi jg sorry for my terminology ,, no i dont have cancer i had to have radiation as after the second operation surgeon could not get all of the tumour out due to scar tissue from the first op and trying to avoid cutting through the facial nerve .

At the end of this week i will have had 25 sessions lasting 15mins

ian

Oh OK....
No problem, just wasn't quite sure, so the tumor wasn't cancer...just curious.

Anyways, having radiation whether you do or do not have cancer is a rough diet for sure. Hoping for the best out come and that you have a positive recovery on the taste and saliva.

Best,
John

minty01

Skiffin16 said:

Oh OK....
No problem, just wasn't quite sure, so the tumor wasn't cancer...just curious.

Anyways, having radiation whether you do or do not have cancer is a rough diet for sure. Hoping for the best out come and that you have a positive recovery on the taste and saliva.

Best,
John

hi
thanks John and my best wishes go out to you and everyone else on here, best advise i can give on here to everyone is speak to your consultant about any fears or worries, they are the ones who know what treatment and what dose you are having , i was reading allsorts and thought that is going to apply to me when it didnt .

regards Ian

Tricia02

Almost 6 years post treatment
Cancer treatment as I understand it, is not an exact science ie no 2 patients will behave the same after having exactly the same therapy. I had nasal septum squamous cell carcinoma and received radical surgery, rads and chemo. My surgeon/oncoman did try to cover all eventualities after treatment ie dry mouth among other side effects. But he could not predict with any certainty what losses I would sustain. I experienced loss of smell and taste. Almost 6 years now and my taste is getting a little better I think, though I am not 100% sure. I have had many side effects, but nothing that prevents me from living a full and wonderful happy life, they're just inconveniences. I started a different food regime to accommodate my lack of taste and I work around all my other side effects quite nicely. I chew gum daily which helps a lot and like many i carry liquid wherever I go. Its the new me I was advised would happen. If they had told me I would suffer all these side effects, I would have still said give me everything you have, if you think you can cure this bugger! I am a grateful cured person today and do not dwell on the negative, so what I can only basically taste indian, thai, chinese etc and chocolate - whatever food I prepare I usually make a lovely hot or spicy sauce to accompany it and have become quite an accomplished cook in the process hahahahahahaha. Life is sweet and who knows you may be one of the lucky ones who regains their saliva! If not, then just enjoy your life, cos it is what it is. Good luck.