adenoid cystic carcinoma

[archie]

Silly,

Are you still with this group. I am off to the Oncologist  in 4 days time after Surgery for the ACC. I guess that means the radio therapy for me. It looks like you have been there and done that..I have read back through the posts here, but am still wondering what is in store for me.  I have been told many things by various people and that has left me  a bit on the worried side. Should I be over worried, or maybe, but not carefree about it? 
I have been told absolutely nothing by the Medical profession?  It is almost as if it is preset that this is what is going to be done so just suck it up buttercup

[Bessyh]

Hi Archie,  sorry to read that you have ACC. I hope you are doing okay and your oncologist appointment goes well. I travel 4 hours on the train to get to my appointments too. I love it as I get to rest and watch a movie on my phone or read on the way 🙂 at the moment I only need to travel to see my specialist every 6 months and sometimes travel for a scan too. It has been over 8 years since I was diagnosed

[archie]

Bessyh, thank you for your comments.  At this stage I am doing OK.  Next Wednesday should be interesting

[MM]

Hi Archie et al,

I am 5 weeks post 6 weeks of radio therapy after surgery to remove lump in submanibular gland. The treatment although not pleasant wasn’t as bad as I had anticipated, I lost my taste but it started to return a few weeks post treatment although not fully there it’s not to bad. I did have problems with my mouth, yawning was very painful and chewing particularly on the side being treatment hurt so adjusted diet to a lot of yoghurt, smoothies etc. Also licking around my gums, something we don’t notice we do to clear food could be excruciating so food that didn’t get stuck was preferable. That was probably 3-4 weeks into the treatment and lasted about 2 weeks post treatment. I also got pretty bad burn marks/dry skin but not hot like sunburn but red and sore at about week 3-4 and got progressively worse it looked pretty bad for a week. I was treated at the ENT clinic at RNS in Sydney.  I’m pretty well recovered now, I have to go back end of February for another pet scan then every 3 months for a check up which I believe is more a chat about symptoms and an examination, at 2 years all going well they will do another pet scan. It’s good to hear many others have been living with the condition for years. Fingers crossed they will find a cure before a recurrence or no recurrence would be even better. Anyway I hope this helps others as to what they may expect all subject to where your treatment may be. FYI I’m 57 years.

[archie]

It is now about 5 weeks since the surgery to remove the submandibular gland and a couple of the other bits there. The incision has healed up well, but shaving on that side is really hard to do. The whole area is still very touchy.  My left cheek is still fairly numb. I saw the Oncologist last week and I should have to go and get fitted with the mask within the next week or so, then start the radiation about 1 or 2 weeks after that..The Oncologist was keen for me to be treated at the Main Hospital, instead of at a Rural service. It does mean however that we have to be away from home for the 6 weeks of treatment. I would rather be at home but getting better treatment is an over riding thing. I am 76 and all the running around, with 4 hour train trips each way gets a little wearing on both my lovely wife and Me. Having 1hour with a Dr can mean  a 16 hour day allowing travel and waiting times.  The tyranny of distance!  It really hits you fair between the eyes when you are told, you can expect at least 6 years of life if you have the treatment or about 6 months if you don’t.  I don’t want it to appear that I am complaining , because I am not, I am just telling it like it is.  The Medical and Surgical treatment that I have  had has been and is still being fantastic. 

[Bessyh]

Hi Archie, which hospital would you need to attend? If you happen to be be A DVA white or gold card, you can apply for reimbursement of accommodation cost if you have to travel such a long distance.

[archie]

Hi Bessyh, I am in Qld and will be having the radio therapy at the Royal Brisbane. I am whitecard and Cancer endorsed. So far it has cost not much for accommodation  as it is subsidised by Qld Health.  Food away from home gets a little expensive. Train fares return Brisbane are fully paid for and mileage is subsidised if we go by car. just waiting now for the Cancer Care Unit to tell us when the mask will be done and then the start date for the therapy.  I think I could get DVA to cover any out of pocket expenses.  All staff, Admin, Medical, Nursing, and Doctors at Royal Brisbane have been and continue to be fantastic..   I t  is now just a matter of time. Old ADF saying is now in force “hurry up and wait” “just open up another box of patience”

[Lampwork54]

Hi  all,

Have caught up on your news and it's a difficult journey.  No one can really prepare you for it.  You all sound as if you are coming through it well.  I went to QLD last week with one section of our family and had a lovely time.  It was incredibly difficult though because I had to be around other people much more than what I had over past months.  Hard eating out and finding soft food.  Exhausting physically too.  As I'm not eating much, I feel as though I have no strength left in me and I don't like it.  

Good news - Today I had an appointment with the dental clinic at the Alfred Hospital.  I brought my lower dentures in with me and had not been able to wear them since surgery.   thought they would just make me new dentures.  They didn't.  They modified my old dentures to sit in my mouth with quite a bit of skill until they fitted again.  Not perfectly but ok.  They do the to get your mouth used to having the bottom teeth in and the big news was that it could possibly help to create more saliva - which it did.  Straight away.  Mouth less uncomfortable.  Was told not to eat a steak tonight but had soup with bread and ate most of the crusts!  Major improvement.  

Very happy with such a big step forward.  Will try to build up strength with a more varied diet and am quite, quietly happy with myself for the first time in a long time. 

😍

[chrisuk]

That's brilliant Lampwork54. I totally understand how you feel with regard to eating. I get very upset and depressed sometimes when I can't eat or finish a meal. I've lost 10kgs since I started treatment and the doctors are slightly worried. I've tried explaining to them what it is like but I don't think they fully understand. How could they? They tell me I MUST try and eat. I tell them that I DO try and eat but it is sometimes such an effort that eventually I just give up.

Well it's now been 3 months since I finished radiotherapy. Apparently this is the magical figure for when things start to improve!

Good luck to everybody. Stay in touch.

Chris

[MM]

Hi again,

Chris I ate/drank a lot of dairy if that helps, milkshakes, smoothies, yoghurt all full fat when usually I would go skim milk etc. I was also told to supplement with sustagen which I just added into milk.  I was told to eat soup too but it was hot weather wise so I didn’t. I lost 2-3kg which was pretty good, 10kg is a lot so hope you have turned the corner at 3 months post. 

lampworks and others thanks for the advice on treatment it was helpful information. Hope the dentures help lampworks.