It's back

Hi

I'm sorry to hear that you suspect your husband's cancer may have returned. 

I don't have any knowledge of this type of cancer but I noticed that your post had gone unanswered. By replying it will push it back to the top of the page where hopefully someone with the right experience will see it and be able to help.

x

Hi

I've not been on for a while so thought I'd come on as I got 10 minutes spare & come across this,I too got diagnosed with tonsil cancer spread to the lymph nodes I had tonsils out then treatment3 bouts of chemotherapy & radiotherapy  for 7 weeks, I had a pet scan in September All clear,& I'm doing well practically 90% back to my old self, there is certain foods I can't eat & dry mouth is a pain but small price to pay.

But I got a small swelling on the side of my neck where my cancer was,asked my oncologist last week as I had to have a check up he put camera up & all is good but he is sending me to have ultra sound just to be safe,he doesn't think it's my lymph nodes but better to be safe then sorry I suppose,personally I think it's scar tissue.

Did your husband have a swelling?

Good luck & God bless

Hi Bigfeet

No my hubby has no  swelling at moment. He did last year but hopefully this time it hasn't spread to lymph glands it s more or less where his tonsils were hopefully they removed it all last Monday. We are just waiting to hear what next hopefully that won't be too long. We both feel that the not knowing and second guessing is by far the worst. Paul has an appt on 9th May but we are hoping to get a call after mdt meeting on wednesday fingers crossed 

Good luck to you too hopefully it's scar tissue

Springy

It s almost like I have written this post myself, Springy.

Same situation for my husband.

Left tonsil, HPV related, supposedly

Six weeks of radiation May June 2018. It s been tough. Tremendous trouble coming off the morphine

Taste and saliva have not really returned but a bit better. Lost load of weight and regained a little bit, but looking good  

I have no idea what these  three new “hotspots” detected by the PET scan last week and confirmed by MRI on Tuesday are exactly.

8 bits were taken by needles in the neck this morning so we ll  know more next week. 

There doesn t seem to be any doubt about whether they are malignant or not. They are.

It s hugely disappointing for us too,  just when it seemed he was making good progress, eating more varied foods, had loads of plans for the Summer, weddings, trips.  All down the drain now  

What is being discussed now is MANDIBULOTOMY for the tumour which cannot be reached any other way. 

I keep myself away from looking on Google. It s just too scary. 

Has anybody had a mandibulotomy? Sounds like...from the Middle Ages to me. 

What complete rubbish.

Venezia  

Sending love to you all at this worrying time.. Hopefully your tests will all be fine.  May I ask Venice did your husband receive a scan as a routine follow up, or did he have concerns?  I have only had one scan  following treatment my other checks ups just involve the camera and a feel of next.

Please keep us updated how things go  

Thanks x

Thanks, Sunshine. 

He did have concerns, a pain in the back of the jaw when opening his mouth. The dentist also saw a suspicious spot, which we consulted about. 

Same here, one scan post radiation, clear, and twice the camera, which showed nothing. We lost a bit of time here, I fear. Then it was the whole armoury of Pet scan and MRI and Xrays and biopsies. All bad  

Well it is what it is and we ll go for the rather gruesome MANDIBULOTOMY. 

Date is not fixed yet but it s soon as the pain is getting worse  

What a total bummer. 12 hour op. We re off to Greece for a few days, away from it all while we still can  it will be a tough Summer.  Again    

if you have a doubt, do consult and make a noise! The squeaky wheel gets the oil  

best  Venice  

I am so sorry to hear that. I often think it may be wise to give us more follow up scans as a precaution too for the areas the cameras do not detect but appreciate everything is down to budgets..... The good thing is hopefully it has been caught early enough.  Enjoy your holiday and keep thinking those positive thoughts 

Sending love

Marie x

Hello Venezia,

so sorry to read your husbands cancer has returned. I had a mandibulotomy and lip split in September 2016 after 18 months in remission from cancer to right tonsil.

He will find this really tough I'm afraid and recovery is slow. If you want to ask me any questions I'm more than happy to answer as frankly and honestly as I can. Feel free to message me privately if you prefer.

Wishing you both all the very best on this next part of your journey and keeping you in my thoughts.

Best wishes

little-fi 

Thank you very much, little-fi. 

I gather you are a lady?

We have been put in contact with a man who has had the same thing and we spoke with him yesterday. He s had everything, radiation, mandibulotomy (this word still makes me chuckle, although I fear we are not going to be chuckling for long), another surgery on the base of the tongue...  he started in 2003, so it s been a LONG journey. But he s still alive.

He can speak fairly clearly but it s the swallowing which has plagued him and after all these years he still doesn t dare eating out with friends. He can either eat (slowly) or speak, but not both at the same time  

Oh boy, one wonders.

He had no real advice to give us.  

He says he enjoys every moment of life, though, which was encouraging, I suppose. If you think about it...2003 to 2019, is a long period of time.

What a wretched, wretched sickness.

Truth is, I almost don’t want to know in advance how bad it s going to be for Keith.  Happy the ignorant, it says in the Bible somewhere, or something like that  

We are still waiting for a date for this awful operation.  I wish we could really enjoy this short respite, but all is looming above our head and it s tough to think of anything else  

Thank you for your good wishes.

How are YOU?

Venezia  

PS I don’t know how to message privately  

Click on the name of the person you want to message and near the top right you should see an envelope, click on it and you should be able to message.