Hi,

I recently found out that my Mum has cancer at the base of her tongue. My Mum lives in the UK with the rest of my family and I live in Oz and about to make the journey over to be with Mum, to see her through this.

It's true to say that everyone is in shock over there (me included), but as I can't embrace Mum and have a good old cry with her at this stage, I'm trying to make myself useful to find out as much as I can about this cancer and what she can expect to go through in terms of her treatment and recovery.

It's understandable that Mum is in shock (since she has always been a very healthy person)and so she didn't think of what questions to ask, to the doctor that did the biopsy that gave her the bad news.

She was diagnosed last Thursday and was told that she would probably be having an op as early as this Tuesday or Wednesday but that it would be at Barts or the Royal London (and not Homerton Hospital where she had the biopsy). And was also told she may have to have some chemo or radiotherapy afterwards.

Then she got a call to say that she had to go back to Homerton Hospital on Thusday to have a scan on her tongue (she has already had an MRI scan ).

So now we are left hanging....is she having the op and when and where? Why is she having to go back to Homerton Hospial? I guess we have to wait til Thusday to find out.

We expected for Mum to be referred to a Specialist by now. Has anyone else had a siumular experience? Any information received about what we can expect would be much appreciated.

Regards
Fiona

Hello Fiona
Welcome. I'm so glad you found this site because you will get a lot of information and support from the members. Things are generally pretty quiet on the weekends and as it turns out I was just 'passing through' when I noticed your post.
I also live in Australia and can only imagine your anxiety at being so far from your Mum and the rest of your family at this early, shocking time in her illness.
It sounds to me as though things are happening very quickly if it was planned your Mum would have surgery just a week after her diagnosis. There is usually a lot of planning that goes into just how a specific cancer will be treated and apart from the biopsy for diagnosis, there is usually a barrage of tests to determine what is the best method of handling it ~ extent of involvement, whether chemo and r/t or just r/t or just surgery or all three are what's needed to get the best outcome for your Mum.
In these early stages time really seems to drag and it seems that nothing is being achieved but you must try to look at the 'big picture' and know the team that will be working for your Mum will have her best long term interests before them.
You can read any of the threads on this message board to see the kind of things that are involved with the pre, and treatment process and also take a look at the survivor stories because things may get to look very dark and bleak for your Mum at times and her road (and that of those around her) will be a rough one. However the vast majority will be here long after this initial shock to tell you how they have adjusted to their new 'normal'. It's tough, but it's all do-able.
Best wishes to you and yours, Fiona. Please feel free to send me a PM if you'd like to 'chat'. Where are you in Australia? I am on the edge of the Barossa Valley in SA.
Cheers
Deborah

Dear Fiona,

I'm so sorry to hear about your Mom and know what a shock it is to you all.

Yes, we've all had similar experiences. The best you can do right now is to spend a few hours going through the forums (fora!) and threads on this message board and learn all you can. It's all here but takes time to read and process. When you have specific questions, please ask.

Write down everything you don't understand or that you feel is important for her treatment. Have a list ready when speaking with her doctors and take notes. Sometimes the news is so overwhelming and indecipherable that we space it out, forgetting what to ask and what to remember. Share your findings with your family as you become more knowledgeable.

Best of luck to all of you. The treatment for this disease is harsh but the outcome for so many of us is rewarding and we go on to live happy normal lives (well, almost normal! What's that anyway?)

Mimi

Hi there
what a distance to have to worry over,and how frustrating it must be.I hope i can help with some of your questions.Treatment for oral cancer is very specialised,and usually involves what is called a multi disciplinary team consisiting of a head and neck specialist,and oncologist,a radiographer,a dietitian,a peg nurse specialist,and sometimes a macmillan nurse.Not all hospitals in the UK have the equipment or the staff to handle surgery and radiation,so they do the groundwork such as biposies,scans,blood tests,x-rays,then when all the information is gathered they send it to an appropriate specialist centre for referral.Once all the information is processed,decisions can be made.Barts is a world famous london hospital where treatment can be carried out initially and then follow up and scans etc may be done back at local hospitals to save on travelling and further stress during recovery.

It will be easier for you to get all the information you need once you arrive back in the UK so try not to get to worked up as your Mum will need you to be calm and ready to take on the role of carer and advocate and you will need to mentally prepare yourself for a new world of experiences and seeing your mum in a very vulnerable state.

You have the best of both worlds here with help at home and abroad from people who have been in your shoes,and also people who are in your mums shoes.Safe journey back

Dear Fiona,

Im am sorry for what is happening to your Mum. The good news is, that most of oral cancers get good results.
You know, I live in Argentina, and part of my family and friends are scattered around the world (Barcelona, Haifa, Chicago, Paris...). This arose as a painful issue when I was diagnosed tongue cancer. However, we have found that using Skype has kept us communicated and united (even if I refused to use it while in the clinic).
Another thing is that it is great that you have found this Forum. Just writting about what you feel is a relieve. Finding caring peers is a strong support. You will find here valuable information and strong, vital people.
Love,

Shoshana

Hi,

I logged on the off chance that I would have received a reply from someone out there (considering the time difference in Oz) and couldn't believe I'd already received responses! Thank you so much! I don't mind admitting that I cried, as it's so very comforting to know I am not alone and that there is hope for my dear Mum.

When I get on that plane later on today, please know that I take with me all those words of hope and encouragement you have all given me and I am so very grateful for all the information about the specialists involved.

Regards
Fiona

Hello Fiona,

Hope everything goes ok with your mum.

Best Wishes,

David.

hi fiona
i am sorry to hear about your mum and of course i can understand how upset and worried you all are.being so far away too is frustrating for you.once mum has all the facts about her cancer and the treatment does make it easier believe it or not.i wish your mum the best outcome fighting this rotten disease and it will be a huge help for her knowing she has a loving and supportive family.please keep us informed of her progress fiona,thinking of you all love shirl xxx