Biopsied white patches on tongue, post head & neck cancer

Well, a bit of a late update, but it's taken me a bit to get my head around. Hubby's cancer is back. The docs think this tongue lesion could actually be his primary site, as it was never found. Treatment might range from another excision with stitches, to possibly a graft, and possibly needing more radiotherapy. Scans awaited to see how bad it might be.

Telling our kids this time was a lot harder, as the older ones in particular saw the suffering he and I went through. 

We knew it might come back, but it's not even been 3 years. He has made is clear to me that if treatment impacts on quality of life, he most likely won't have it. His 44th birthday was on Monday. 

Hi Mumofmuggles. Thanks for updating us and I’m so sorry the news is not good. Hold out hope that it can be dealt with surgically and that it might be the end of it. 
Your last paragraph really touches the heart and is probably what would be my reaction but it is truly amazing what the surgeons can do and how resilient a human body can be. 
I don’t pray but I’ll do something else as well as keep everything crossed for a good outcome. 
All the best xx

I was balancing on the edge after my surgery as there were issues and I was ventilated for a while etc All I could think about was getting back to my kids and my family in general Even if I would not speak or would have some other disability There is just one life (as far as we know so far) and I believe we should fight for it till the end 

Hi Nat

if I could swear on here I would do. Grrrrr let’s keep everything crossed that lesion can be taken away surgically .there’s also immunotherapy maybe ? There’s a few on here that have gone that route for reoccurrence s. Your last bit about quality of life I can understand but before you get to that stage I hope the oncologist snd surgeons can come up with an alternative. 
we are all here for you at any time you needs us. Please keep in touch. 
hugs Hazel xx

Good evening Nat, thanks for this update sorry its nor the best news but we will keep our fingers crossed that it can all be sorted once they see the scan results, my first head and neck cancer started in 2008 when i was 48 and it took 3 years to get to the bottom of it, thankfully life id good now, positive thoughts to you and your husband, best wishes ,take care.

                                                                        Chris x

Hi Nat

So sorry that your husband’s cancer has returned. It is pretty devastating when that happens.

 Initially I felt exactly the same as him when the same thing happened to me. I had the first operation in 2013 and found that and the radiotherapy really tough. However got back to work and my life was pretty normal and that’s the way I thought it would proceed. I was pretty devastated when in 2019 I got another cancer on the other side of my mouth and was told that I would need another operation and more radiotherapy.

 I also said to the doctor that I didn’t think that I would have the operation and would just go on and let the cancer take its course. I was 66 so much older than your husband and felt that I had already led a good life.

 However my wonderful surgeon sat me down and opened up all the facts with me and how things would progress if I didn’t have the operation. It didn’t sound very appealing.

He assured me that he could remove the cancer but the thought of more radiotherapy really gave me pause for thought. My husband was very encouraging and said I needed to do what was necessary to overcome the cancer. Initially I thought, ‘what does he know, I’m the one that went through it last time and it was the hardest time in my life’.

I gave it lots of thought and decided to go ahead with the operation and it was the best thing that I ever did. The operation was a big one but I got over that well and the radiotherapy the second time around was not as bad as the first time.

I would encourage your husband to go ahead with any recommended treatment as we only have one life and we need to make the most of it. He is still young and needs to fight for it.

There were some down times during my recovery but they are now in the past.

Here I am now feeling happy and healthy, enjoying my retirement and my grandchildren and even managing a short holiday. (Covid not so bad in Australia so we are able to travel within our state.)

It is not easy to face cancer a second time but once you get over the shock and disappointment you have to put your head down and move on.

Please do encourage your husband to do what it takes particularly for your children as it will be worth it.

Best wishes

Lyn

Thankyou so much for your kind words, Sophie.

Further update

Hubby had another MaxFax appointment yesterday and has been swapped surgeons. He needs to have a hemiglossectomy, but can't have a free flap reconstruction due to his abnormal anatomy from his previous radical neck dissection. They will be doing something to the other side of his tongue to make it more functional. The surgeon was very clear that this operation will be life changing in terms of eating and speaking.

Even more devastating for hubby, he has been told he will need a PEG tube again. Last time miserable for the whole family - it was difficult to use for feeds, and he basically stopped using it, which gave myself and the kids a huge amount of stress too. This has been a real blow to him.

On my facebook memories, he rang both the chemo bell and radiotherapy bell two years ago this week!

Interestingly, they now think the cancer is a different one (though still SCC). We are hoping that hubby's critical illness insurance agrees with this, as things would run smoother with a financial buffer. I don't know, we are assuming they won't pay out, but nothing ventured, nothing gained, hey. 

He has a barium swallow booked for 13th, as they want to assess swallow pre-operatively, and op could be any time after this. 

Hi Nat

oh dear not the news you were hoping for . Thank you for posting it can’t have been easy for either of you. Sounds like the peg will be to help him through the initial period after the op. Hopefully someone will pop on who has had a similar op and can give you some more advise. All I can do his send you my love and please keep in touch. 
Hazel xx

Hi Nat

I am so sorry to hear the news about your husband’s operation and the changes he will have to adjust to. It is going to be a really hard time but I know you can both do it.  He is lucky to have your support.  

Thinking of you both and sending positive vibes.

Lyn

xx