My husband has gone through 1 round chemo, 35 radiation, finished April 21. Was told yesterday that his tumour has taken over his entire tongue and needs total tongue removed and possibly esophagus and lymph nodes. Any help would be appreciated as we are very scared.

Hello Susan

You may find these past discussions concerning living with 'tongue removal' encouraging. We have several members here who have had a complete tongue removal. Sharifah is one of them.

Best wishes
Vinod

Thank-you very much. I'm new to this website but cannot seem to find more than 2 people who had complete tongue removal.

Hi Susan

I'm so sorry for what you're going through.

Have you contacted the hospital where Brent is being treated to see if they might have a glossectomy support group, or if they might be able to introduce you to someone who's been through the same or similar?

I hope you find what you need.

Julia

Thank-you Julia. I will give that a try although our own family doctor has only had 1 patient in his entire career and he has now passed away at an old age.
Kindest regards,
Susan

Hi Susan,
I had total glossectomy in June 2008. I had this operation first and then 6 weeks of intensive radiotherapy. If you have any questions you can ask me and I would be more than happy to answer them. I was 55 years old when I had this done. I am 57 now and still surviving.

Hello Rita, and welcome.
How great to see another Aussie on board and offering support and advice to a newbie.
Where do you live? So pleased to hear you are doing well.
Cheers
Deborah

Hello June,

Thank-you so much for responding to me as we are scared to death. We have 5 young grand children and Brent has so much to live for. We all want him around for a very long time yet. I would love to know how difficult the entire ordeal has been for you and what your quality of life is at the present. I rather know the truth and face facts rather than not knowing. If it is too difficult to discuss for you I truly understand. Thank-you so much for your kindness.

Warmly,
Susan

Hello Rita,

PLEASE forgive me for saying your name was June instead of Rita. We are seeing the specialist today about the MRI results and I'm not thinking clearly. I'm so sorry for the name mixup. I hope that you can disregard my error and send a reply...........so sorry.

Warmest regards,
Susan

Hi Susan

I hope that Brent's appointment went well today.

You have the same attitude I adopted when my own adventure started: knowing is better than not knowing...but finding out is scary as hell. I'm hoping for the best.

Honestly, I'd be more worried both for and about you if you were able to maintain a calm head while all of this was going on.

Let us know how things went.

Julia

Hi Julia,

Thank-you for the email. Unfortunately Brent's tumour is so large now that it has taken over his tongue, possibly his voice box, esophagus and a golf ball size tumour in his lymph node. Surgery is not an option for him so basically there is nothing more that they can recommend. We are feeling quite numb at the moment but he is still determined. Right now he is grouting the tile in our bathroom. He was given 4 to 8 months to live. He has decided to try some alternative therapy and the rest is in God's hands.

God bless.
Susan

Hi Susan,

Sorry that nothing can be done for Brent. I still have my voice box thank goodness so I attempt to speak though I can't be understood well. They did want to remove my voice box too but changed their mind. I wish him well. Rita.

Hello Susan
I'm so sorry to hear of the news you've been given today. I know the emptiness, shock and despair that goes with such a prognosis.
Good for Brent getting stuck into the bathroom! Way to go. The world keeps turning amid the madness.
Be sure to keep posting as the usual crowd will be here to support you no matter what the future holds.
Thinking of you from Down Under
Love
Deborah

Thank-you Rita and I am glad that you were able to keep your voice box.
Blessings.
Susan

Thank-you very much Deborah. Brent has an amazing fighting spirit that is for sure.
Blessings,
Susan