adenoid cystic carcinoma

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Super Contributor

Re: adenoid cystic carcinoma

Hi @Lampwork54 ,

 

It's good to hear you've had some improvement.  Things can only get better now.  😊

Take care

 

Budgie

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Occasional Contributor

Re: adenoid cystic carcinoma

Off to Brisbane next Tuesday 21st for a Planning Appointment which includes making my mask for the Radiation Therapy that is anticipated to start about 14 days from then.. The trip to Brisbane is my first experience of using DVA travel Section. The lady I talked with on the phone was very helpful.  I am constantly surprised how quickly things move along.

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Frequent Contributor

Re: adenoid cystic carcinoma

Thank you all.  Hoping things go well for you and crossing fingers to boot.

 

I have a serious question.  I have life insurance attached to my superannuation.  I rang the super fund today as I was wondering what was required.  I do have a terminal illness.  Hard to think of it in that way.  That's what the cover says - if you have a terminal illness.  Found out that you need to have two doctors state that you have less than 24 months to live.  I doubt that very much.  Just not sure is any diagnosis of cancer terminal?  What if you don't die within 24 months?

 

Any ideas and has anyone claimed this?

Cancer Council Team

Re: adenoid cystic carcinoma

Great question @Lampwork54 👍

 

You may be interested in having a read of our information sheet - Superannuation and Cancer

 

The definition we've got against grounds for early access to your super regarding a terminal illness is: "Two doctors, including one specialist, have certified that you are likely to die within 24 months. You should apply directly to your super fund."

I am definitely curious to read what people may have experienced or are finding as they come to this.

 

Also, I've moved this thread into the forums so that is a bit more accessible for everyone - all your old emails and links will just automatically come here 💛

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Super Contributor

Re: adenoid cystic carcinoma

I have no helpful advice but can say that some cancer diagnoses are able to be considered terminal . My young sister died within a few months of her diagnosis . She had a different rare cancer and at diagnosis they knew she wouldn't live long because of the spread , despite a second extensive surgery . I'm guessing this is nothing like your circumstances . 

Sorry this isn't very helpful to you . 

 

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Super Contributor

Re: adenoid cystic carcinoma

Sorry Archie , I'm not on here as often as I used to be . I'm almost at 10 years since my diagnosis , which was in February 2010. My cancer was in a different place to yours so I don't know what radiation will be like for you or what the side effects are , but do ask any questions of your doctor . Perhaps you and your wife could write a list of questions . 

 

During radiation the hospital staff are very caring and helpful and the nurses can often answer your questions between doctor visits . They are there to offer advice every day .  

   

For me radiation was not as bad as surgery but many people find the opposite . My biggest problem at the time of radiation was feeling depressed about it all and I tried to get counselling which was on offer but didn't get an appointment during that time . I did get counselling a couple of months after radiation ended and it was so , so good . I contacted the Cancer Council after having trouble finding a suitable place to go . I highly recommend them to anyone feeling down or depressed about their cancer . 

 

I can understand how all that is happening for you is taking a toll on you and your wife . I was 59 at diagnosis and luckily I had a supportive husband . I wish you well throughout . 

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Frequent Contributor

Re: adenoid cystic carcinoma

Thanks Katekat.  

 

I will let you know what happens.  My insurance was for permanent disability, terminal illness or death cover - attached to my superannuation fund.  I think I assumed that if you were diagnosed with a terminal illness - cancer - you would be able to have your insurance paid out.  What I didn't know was that you had to die within 24 months, which I've also been told by my superfund.  I have no intention of dying within 24 months so am unsure what to do.    I will look at the paperwork the fund is sending me and then discuss with surgeon.  Will update you too.

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Occasional Contributor

Re: adenoid cystic carcinoma

I have lost some of the posts here. My Radiotherapy starts on 5 Feb with 33 treatments., 5 days per week, last on 20 March. Not much else I can say is there?
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Re: adenoid cystic carcinoma

During the mask etc setup, I had an interesting comment made to me by one of the Nurses. In general chat I was informed that my side effects of the therapy would be less than normal as I was only having one side of my jaw treated and not both sides because that was all that was needed.  Has this happened to  another patient?  I thought at the time that it was an unusual comment. Is the comment a factual one, or is it just an attempt to reduce any anxiety I might have?  From day of diagnosis one constant comment I have received is - oh don’t worry about it, you will sail through it.  The more times I hear that - the more I think it is a con job to try and reduce any worries I might have.  
The only thing that has had me thinking is age v radiation. Yesterday I found some great references to the age bit, and surprise surprise radiation is really ok for those in the 70 to 90’s age group.

just as an aside a program I saw on the tv last night showed a man 98 having a heart valve replaced while he was awake, with comments from very senior Medicos that what happened in the past to those in their 60’s, surgically, is now fairly routine to those in their 90’s

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Contributor

Re: adenoid cystic carcinoma

Hi Archie.

I think the truth is that everyone reacts differently to radiotherapy and it's difficult to be specific about side effects.

I had radiotherapy to one side of my head and neck for 6 weeks and I wasn't too bad (I'm 66). The skin got a little sore but didn't break. About 2 weeks into the treatment I started to lose my sense of taste, the inside of my mouth got sore and my saliva dried up. Because of this I lost all interest in eating and survived for about 4 weeks on meal replacement drinks. When the treatment finished most of my taste returned but the dry mouth is a real pain. I now have a little saliva but eating is still difficult. I have to take a sip of warm water with nearly every mouthful of food. I've been told the saliva might improve over time but they don't really know for sure. I've lost about 13 kilos, but as I was 13 kilos overweight to start with I'm quite pleased about that!

One good side effect --- most of my beard disappeared! Shaving took a minute! Unfortunately that is returning really fast!

But as I said, everyone is different and you might have a completely different experience to me.

All the best and take care.

 

Chris

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