Cancer in the roof off my mouth

Hi Joanie

I am so sorry that you need the operation to remove the cancer from the roof of your mouth. It sounds like a maxillectomy. Is that right?

I had a maxillectomy in 2019 and another in Feb this year to the other side of my mouth. I have cancer of the jaw and it sounds as though it is the same operation.

 With my first maxillectomy I had the jaw and teeth removed on the left side of my mouth and was left with a hole in the roof of my mouth. I had the option of having the hole covered with a skin graft or having an obturator which was like a denture that clipped to the teeth on the other side of my mouth and covered the hole in the roof of my mouth. I opted for the obturator.

I was also concerned that I would find the obturator uncomfortable and gag but in fact it worked out really well and was quite comfortable. I woke up from the operation with the obturator already in my mouth although it was not screwed in place as yours will be. This was an interim obturator until the swelling settled down. Several months later I had another obturator made which fitted really well and was even better than the first one.

Without the obturator in speech is very nasally and you are unable to drink as the liquid comes out of your nose. With it in speech is perfect and I found no issue with drinking except the odd time the liquid came out of my nose if the obturator was not seated properly.

I did not ever have any issues with gagging with the obturator in place. Unfortunately with the second maxillectomy the obturator is no longer an option as there is nothing left for it to clip onto.

The maxillectomy is a big operation and for me I had to eat differently afterwards as I could only manage a soft diet but everyone is different with this.

While in Intensive Care I had a temporary tracheotomy but this was removed before I went into the general ward.

 I had a naso gastric tube in place for a few days and then I was put on a soft diet monitored by the speech pathologist. The naso gastric tube was removed before I left hospital.

 I found it took me about 8 weeks to recover from the operation but after that I was fine.

Ask your surgeon as many questions about the operation that you can think of as that will help you be more prepared.

Wishing you all the best for your operation.

Lyn

Thank you Lyn for your reply it's very informative. I am not good at asking questions or seeking information from my doctors I just sit there and nod a lit and say OK thats fine whatever you think. It's the waiting that's getting to me it's been 2 weeks and another week to go before I go in for the operation. I have toothache as the biopsy loosened a tooth (that's coming out anyway) living on painkillers. Avoiding people cause I am.pissed off with seeing "the look" on their faces and the questions that I don't have answers to. I know they are worried and concerned for me but arghhhhh sorry I have gone onto venting sorry. Anyway thank you for your information much appreciated

Joanie xxx

Hi Joanie  ranting is perfectly ok. Rant away on here nine if us judge you. Sophie is the expert on her with regard to mandible s were lucky to have her all the way from Australia. Yes the waiting’s the worst part of it all it’s the fear of the u known 

hugs Hazel x

Hi Joanie

Vent away as this is a trying and worrying time for you. Once you have the op hopefully things will start to settle down. It does take time to adjust but you will get there. The waiting is the worst. You can only try to distract yourself by keeping busy although I know it does keep creeping back in.

People are uncertain what to say at this stage so it is difficult for them too although they have the best of intentions. I hope you have some family support as that does make a huge difference.

I also found great support from this forum as the people on it have gone through the same or something similar so understand exactly how you are feeling.

Do you know at this stage if you are going to have radiotherapy? If so you will find a wealth of helpful information on this forum.

I found what worked best for me was having as much info as possible about the op and after effects as I find knowledge and knowing what to expect makes me less anxious. However everyone does it differently. I definitely had every confidence in my surgeon and medical team and they were fantastic and I know yours will be too.

There is still a very good life to be lived after a maxillectomy.

Sending you hugs

Lyn

xx

Thank you both for replying to my moans. Consultant said he doesn't think radiotherapy should be used at this point as seemingly you can only do it once? And he wants to keep that option in case its needed later. This us my second mouth cancer after 14 years of constant monitoring. The last one was a tumour in my cheek that was taken out full thickness leaving a scar but no further intervention. I have severe leukiplaquia all over my mouth for the last 15 years and its always been monitored for changes biopsy and deal with the results. I have lost count voluntary of the biopsies I have had over the years but this one felt different from the beginning.  And it's going to be a big operation I understand but once again my fears are these holes on the roof of my mouth and the screwed in plate and gagging. I guess I will just have to cope cause the alterative is doing nothing and that's not an option

Anyway thanks for listening. My GP is encouraging me to go to the local Maggies Centre has anyone been before? Is it worthwhile going? I don't want to be sitting around in a group going whoooo is me I have cancer and swapping diagnoses I have enough yo deal with my own. That sounds so negative sorry.

Love Joanie  

Hi Joannie 

Try your Maggie’s. It’s not about swapping cancer stories. I’ve been a few times to offer support and it’s just a place where you can meet chat and swap jokes as well as get advice and therapies.

There are of course groups where folk do chat about their cancer but there is a lot of well being support Give it a go. 

Hi Joanie

I had a matxillectomy in 2019 with a plate screwed in place when I came around from the operation.  I then had radiotherapy and when healed this plate was removed and I was given a temporary obturator and then later a definitive obturator.  I didn’t have any problems with gagging but I’m not prone to gagging so can’t really help with this. Maybe discuss with your surgeon and team your worries about gagging.  There are other options than the obturator, such as a flap,  but these are bigger operations.

Hope all goes well for you.

Hi Joanie

I am glad you do not need radiotherapy as that can be an added challenge after an operation. The leukoplakia you have sounds so similar to the cause of my cancer which is lichen planus. This also presents as white patches in the mouth with only 1% of cases becoming cancerous. Aren’t we the lucky ones!! I have also had numerous biopsies over the years and have lost count too. I was diagnosed with lichen planus in my mid 40’s and it was not until I was 59 that I got my first cancer.

However life goes on and I have bounced back each time and am living a happy and fulfilled life and I know you will too. We have our wonderful medical team to thank as their vigilance makes all the difference.

Sending you positive thoughts.

Lyn

xx

UPDATE

All ready to go to hospital today to have the operation tomorrow only to receive a phone call to say my PCR test has come back positive COVID. Operation cancelled stay at home don't go out blah blah blah. We will get back to you with a new date. I am devastated I was diagnosed 12 April and am still sitting here on 11 July. How far has this spread? What's the long term issues? I know the covid thing can't be helped but I did a lateral flow and thats negative.i have ZERO symptoms. I am driving myself insane today with worry. 

Joan xx 

Hi Joan. Sorry to hear you’ve tested positive and the impact in tomorrow’s surgery. Am sure they will get you in as soon as possible. As for the cancer spreading try not to worry too much . Unbeknown to me I noticed my lump in collarbone late March 2018 we were in extended holiday in Spain it was  mid May before we returned . I was put   Straight on cancer pathway the next day and treatment started mid July. It’s not easy this waiting did they give you any indication of when you would be back in theatre ? Hopefully you’ve a phone number to ring to chase up. Fingers x you get over covid soon.  Keep venting on here we’re all happy to listen. 
Hugs Hazel x