Hi from patients Husband

Hiya, i just wanted to reply to this as yesterday was my first time writing on here. Im not normally the type that would write on forums but I felt like I needed support. 

My mum got diagnosed yesterday with tongue cancer. The investigation leading to this has been long with Dr's thinking it was thrush to start with back in October. I feel very frustrated and very much like you spent the whole of christmas worrying. 

She's been given options of surgery to remove her tongue and lymph nodes in her neck or radiotherapy and immunotherapy. 

Weve got another meeting Thursday to finalise treatment plan and confirm MRI results. 

She is now 5 stone loosing ao much weight through not being able to eat and pain in her mouth. 

I feel terrified and she has asked me to help with making a treatment decision but I honestly just don't know what to think or say. 

Its such a difficult journey and I feel for anyone who has to go through it. Ive found alot of useful information on this forum and im sure you will too

Martyv said:

Ive just realised for somebody who didn’t know what to type , I’ve typed a fair bit of nothingness .  

It's not nothing at all. It's a desperate situation to be in especially as you have no control over anything. You're caught like a moth in a flame knowing you have to touch that flame but somehow survive.

It's a huge op. Your wife sounds like she is doing really well and being looked after. 

Try not to worry about deadlines. Clear margins are hugely encouraging and these targets are just targets.So hunker down and ride it out. The omens are good.

Oh and welcome, by the way. Stay with us, ask anything you want. There's always somebody around

Hi and welcome to our little community 

So sorry to read about your mum.

A total glossectomy is a life changing op and may result in your mum never being able to talk and to be fed by tube. I'm sure this has all been explained. I can understand how you must feel. I have a cancer buddy who did have the operation but she has managed to eat and talk. She is magnificent. But she is has worked really hard at it. She has her patient story on the Oracle Head and Neck Cancer Charity ....it's HERE if you want to have a look.

Good luck with your meeting 

EDIT

I just picked this up from your post on New to the Community

They have said 1 option is surgery to remove her tongue and lymph nodes in her neck but have  made it clear that the quality of life wouldn't be great if she makes it through the operation. She'd never talk again and have to be fed through her neck. There's a also a chance they may not be able to remove it all or it may come back. 

That's a tough choice. It's good that immunotherapy is being considered

PS. Martyv 

There is an excellent charity called the  Mouth Cancer Foundation. They have a very active social media support group and weekly Zoom Meetings on a Monday . Do have a look. You are more likely to get a reply about this particular surgery there 

 Green26  This might help you too

Hi, it's good that you have come on to the forum and told us about your wife, hopefully it has it has got it off your chest a little. You are welcome on here any time, to ask questions, have a rant or just say hello. Your wife is being well looked after and is in the right place for her needs. There is a great charity called The Swallows, they have a 24-hour support line you might like to ring to have a chat. 

Ray.

24/7 Support Line: 07504 725 059

Hi welcome from me Dani’s pointed you in the right direction for the mouth cancer foundation. I know if one lady whose pec muscle was used for reconstruction hers story is also in the oracle  website.  I’ll pop the link in shortly. 
her names Jo Joy Wright 

https://www.express.co.uk/news/uk/2119207/my-cancer-diagnosis-came-post

https://oraclehnc.org.uk/cancer-care-why-mental-health-support-must-be-part-of-every-cancer-journey

she’s also a clinical physiologist 

Hazel 

Hi Martyv I am the wife of Paul, who had a pec major flap reconstruction 10 years ago, in 2015. Like your wife he had tongue cancer (stage 3, but very aggressive), plus one lymph node affected. He had a free flap reconstruction and neck dissection, but the free flap failed, so back in he went a week later for the pectoralis major flap. They didn’t get great margins round the tongue tumour so he had radiotherapy, which started about 9 or 10 weeks after the first operation. No-one mentioned a six week deadline to us, but he was keen to get on with it. It was probably good to have time to recover from two major surgeries first, though. 
Paul got through it all and has had 10 cancer free years, until last year when what we thought were long term side effects of the radiotherapy turned out to be symptoms of hypopharyngeal cancer. This was a new primary, so he was either appallingly unlucky or may have a genetic predisposition to head and neck cancer. Main point for you and your wife is that the tongue cancer was cured and he has had a lot of fun out of life since then. 
The pec major flap has given him a bit of a lumpy neck, but after all the swelling settled down that was a lot less visible than I expected based on the surgeon’s description pre-operation. His collar size is the same as it was pre-cancer.
The biggest downside of the pec major flap has definitely been neck stiffness and reduced tongue mobility compared with the results of a free flap. However, prior to the latest cancer, he could eat a varied diet of soft food and enjoy it. 
Happy to share any other details that might be useful to you; I don’t think there are many pec major folk out there nowadays as it seems to always be ‘plan B’ rather than ‘plan A’. 
I know you must be going through an awful, awful time, but there really is a lot to look forward to. Stay strong.

Hi , 

sorry to hear about your mum . For us it was quick and no time to really think , we just knew that it was serious and agreed to surgery which was carried out quickly . Sounds like a completely different path to diagnosis for us compared to your mum. 

I suppose the decision for your mum depends on various factors such as age and general health etc but this is something the professionals will discuss with you . Take advantage of the McMillan nurses , they are there to help and comfort you and are worth their weight in gold. 

I wish you the best for next week and whatever journey your mum chooses to take . 

Good luck and best wishes to both of you x 

Hi Dani , 

thanks for the info , I will check it out . 

Martyv 

Hi Hazel , 

thanks you for the info, I will have a look at the link . 

many thanks 

Martyv