topic Re: head and neck cancer in New? Start here!

head and neck cancer

Marg246 — Sun, 14 Nov 2021 00:16:32 GMT

I have had reconstruction of the mandible , neck resection , removal of Rt. fibula , skin graft from Rt femur . Radiation -34 fractions . It has been 2 and a half years . I now have a few white patches in my mouth . I do not do well when having biopsies and am a high anaesthetic risk . Does anyone else get these patches in their mouths ?

Re: head and neck cancer

Stell87 — Wed, 15 Oct 2025 12:14:00 GMT

Hello Marg

Well you have been through alot.

How have you been lately??

If at all possible could you please give me some feedback regarding the reconstruction of your mandible .

They want to replace mine with my fibula...

Thank you Yours Sincerely Stella

Re: head and neck cancer

Marg246 — Thu, 16 Oct 2025 05:25:54 GMT

Hi Stella I have through Cancer twice now . Along with 2 long Surgeries . Each were 13 and half hours .

Each time I awoke in Intensive Care . The first Op was removal of 3/4 of my Mandible . My Rt. Fibula and graft and skin graft on Rt. Thigh . Also Tracheostomy and Neck Resection .

I was in Hospital for 16 days . I could swallow , breathe on my own and was on a soft , pureed diet and walked with a moon boot . I could also talk .

The Physio came the next day and got me out of bed . I walked with a frame and a boot . I ended up being able to eat with a plastic spoon ( BigW party section has many colours .

I had 36 fractions of Radiation as my Margins were too close together . For almost 5 years I did well . I continued my checks at the Maxio Facila Clinic . A second Cancer was found and this time my whole Mandible was removed . Also Lt. Fibula . Skin graft to Lt. Thigh . Another Trachaeostomy and Neck Resection .

My Recovery has been harder the second time . I was in Hospital a month and had a Peg tube inserted as I could not swallow . Walked with a frame and moon boot . It took me 3months to start to slurp water with a straw . Speech therapy is wonderful . I had peg feeds for 10 months . Then supplements for another 4 months .

My Mobility is now good and my swallowing is stronger . I still use a straw to drink and am on a Puree diet which I eat with a plastic spoon . The Radiation charcoled my Mouth . So I don't tolerate ordinary Cutlery .

I have survived again and intend Living a lot longer . My Speech took a lot longer the second time . I still have difficulty speaking on the phone .

Do you have any specific questions .? All the best for your Surgery . Be kind to yourself . Rest . Sleep as much as your Body tells you too .

Marg

Re: head and neck cancer

Stell87 — Thu, 16 Oct 2025 10:52:40 GMT

Thanks for sharing Marg

During my radiation and chemo I had a peg and do recall longing just to sip water..

I bet you really appreciate being able to slurp again...

I'm concerned about a few things like how much bone will they take along with how many teeth?

And will my body accept it will the blood flow will the flesh live or die??

After recovery will I be able to open my bite or chew ?

Where will my scars be ??

How will I take pain relief if I can't swallow?

I know you can't answer these questions even the Surgeons can't really say as everything is quite unpredictable..

The only thing that is predictable is the location of the jaw..

I'm trying to remain calm and sensible but I keep coming back to the fact that try as they may there are no guarantees it will go well.🥺🤔🙃

Re: head and neck cancer

Stell87 — Thu, 16 Oct 2025 10:55:51 GMT

Dear Marg
Thank you again for sharing all those details..
And I'm very glad that you have a great attitude and do love life despite its trials.i admire your resilience x Stella

Re: head and neck cancer

Marg246 — Fri, 17 Oct 2025 00:32:02 GMT

My scar is under my Chin and can't be seen . First Op all but 4 teeth were taken from my Mandible . Second Op Surgeons removed all of the Mandible and remaining teeth . Another scar where your Fibula is removed and the Flap is taken . Mine healed really well . I am proud of my Scars . Bothe legs the Scars have faded .
My Body hasn't rejected my Fibulas and the Surgeons take the long Vein as part of the Flap . My Leg Circulation is good and my Flesh is healthy .
I am not able to open my Mouth very wide .
So Stella for both Ops I was really scared . But I told myself it will be a good outcome and I am in good hands . So be scared , cry , scream and shout . But still stay Positive .
You will learn to adapt to the Surgery . All the Best .
I am here if you want to keep chatting .

Re: head and neck cancer

Stell87 — Fri, 17 Oct 2025 02:41:26 GMT

🥺🥺🥺your feedback is invaluable.
Thank you so much..
I must go to work now.
My consultation with surgeon is 28th of October.
I will be in touch ,hope you have a nice weekend.
Stella 💚

Re: head and neck cancer

Stell87 — Fri, 17 Oct 2025 02:53:12 GMT

Just quickly is there a big dent in your legs from Flap?
I only have skinny legs😁🙄
Is there any talk of dentures or implants?
How long ago was your last surgery.
Bye for now 💚

Re: head and neck cancer

Marg246 — Fri, 17 Oct 2025 08:12:09 GMT

Yes both legs are now the same length and have a small dent . It is not overly bad looking .
I was to be fitted with a Denture but the second Cancer appeared .
You can have Implants or Dentures after your Mouth has healed
My last Surgery was 17 months ago . I am glad I have been able to help .

Re: head and neck cancer

Stell87 — Fri, 17 Oct 2025 10:01:28 GMT

Thanks again for your lovely manner Marg.

Are you contemplating getting some kind of teeth at some stage??

Or with your limited mouth opening have you ruled it out??

Do you chew ?

I cant even get that chewing action happening 🙃🙄

I will be 56yrs in December ,in thinking age dosnt real factor in does it??

I am an active person....

Hey I'm thinking all that radiation and surgery you've had has removed all your cancer👍💝💕

Re: head and neck cancer

Marg246 — Sat, 18 Oct 2025 02:45:20 GMT

I would like to try again for a Denture . Implants are expensive and an Anaesthetic is needed . I have had enough Surgery .
I was 62 when Diagnosed with the first Cancer . I don't really chew but with the help of a Denture I may .

Re: head and neck cancer

Stell87 — Sat, 18 Oct 2025 10:06:38 GMT

Well you are a fine example of enduring with joy..
Sleep well Marg

Re: head and neck cancer

Stell87 — Mon, 27 Oct 2025 10:14:51 GMT

Goodevening Marg

How have you been??

I hope you've been OK..

Do you eat much dairy??

I've been eating coconut yoghurt this past week it's yummm.

Hey I'm wondering did they remove your nerve ??

Has it left you completely numb??

Take care

Stell

Re: head and neck cancer

Marg246 — Sat, 01 Nov 2025 23:02:24 GMT

Hi Stella how did you go with your appointment ?

Re: head and neck cancer

Stell87 — Sun, 02 Nov 2025 10:40:24 GMT

Hello Marg

Nice to hear from You..

My appointment was ok.

As my pain had really settled to quite minimal and my energy levels have been fairly good and no raging infection they said they will treat those who are in agony and see me in 3mths...

I was kind of relieved.

Even though my face has sunk from under my ear to half way to my chin it has just sunk there's no definitive jaw line..

They said it will be the neucrosis..

Today I was putting some numbing gel in my mouth and what I thought was painful from perhaps my teeth hitting it as my bitebis out of alignment turned out to be somthing very hard spikey like bone but it is in my cheek.inside my mouth but on my cheek side..mystery ????

Thank you for asking how have you been??