Maxillary sinus cancer new diagnosis

Hi Stonegate 

I can't help you myself but I've done a search for you. There are a few mentions of this cancer

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Hi Stonegate

I am so sorry to hear about your diagnosis it is a real shock when out of the blue you get a cancer diagnosis. You have found the right place to get advice and reassurance as people on this forum have experienced something similar to you so understand the anxiety you are going through. I had jaw cancer so not the same as yours but as a result have had over several years  a partial mandibulectomy and 2 maxillectomies plus 2 lots of radiotherapy. I think the op you are referring to is a maxillectomy so I do have experience in spades with that. Last year I had an upper jaw reconstruction. I did not have chemo so no experience with that. I am doing well and have got back to most of the activities that I was doing previously and am happily enjoying my life. There is definitely a good life to be had after a maxillectomy although you have to adjust to some changes.

Please feel free to ask any questions you have and I will endeavour to answer them.

Your medical team has so much experience put your faith in them and they will see you through.

Lyn

Hello Sophie 66,

thank you so much for your reply.You have been through such a lot and  I am so pleased that you are doing well,  your words arei very reassuring. 
May I ask you what are the most significant changes you have had to deal with? I keep reading about adapting to ‘changes’  and preparing for that but have little idea what they may be.

Hi Stonegate

Hi Stonegate

You need to have a discussion with your medical team to make sure that you fully understand the operation and what changes you might face. Everyone is different and my experience may not completely mirror yours.

I did not find the maxillectomy painful so did not need any pain killers when I went home.

In my case the most significant change I had after my first maxillectomy was related to eating. I had already had a partial mandibulectomy so already had no teeth or gum on the lower right side of my mouth. When I then had the left maxillectomy and then had no teeth on the left left side of my mouth in my upper jaw I had limited ability to chew in spite of having an obturator. (that is like a dental plate that blocks the hole in the roof of your mouth) This meant that I had to adjust to eating very soft food and found that food with texture was too hard to chew. On top of this the radiotherapy made my mouth very dry so the food had to be very moist.

However it sounds as though you will still have a complete set of teeth on one side of your mouth so this will probably not be an issue for you as I coped really well after the mandibulectomy when I had a full set of teeth on the left side of my mouth and got back to fairly normal eating.

I opted for an obturator over a skin graft to cover the hole in the roof of my mouth as I wanted teeth straight away. However I could have taken the option of the skin graft and then had dentures made much later on after everything had healed. However for me I don't think that would have made much difference in the eating department. I had to get used to putting the obturator in and out at night although that was easy to do and it was a bit hard for people to understand what I said when I did not have it in. Also occasionally some fluid would come down my nose as the seal of the obturator was not perfect. However in the long run I found the obturator worked really well for me and was quite happy with it.

Do you have an option of an obturator or a skin graft to cover the hole in the roof of your mouth?

Everyone is different and your medical team may be proposing something different for you. I did not have reconstruction after my first maxillectomy as they only took away my left jaw and nothing else. It was with the second maxillectomy that I had reconstruction. This was not with bone but with a titanium prosthesis attached to implants in my cheek bones with dentures attached. This was because they said that a bone transplant had a high chance of failure in my case. Your op may be different to mine in the reconstruction department.

 I have said previously I have adjusted to the changes and am able to do nearly everything I was doing before and am enjoying my life. I did go through a bit of a hiccup emotionally for a while but I found talking to my consultant and GP about my feelings really helped. Also being on this forum really helped and encouraged me.  It is only natural to be affected emotionally as it is adjusting to some difference in your  life but that does not mean that is can't still be a good one.

I am happy to talk about any other issues that may be concerning you.

Best wishes

Lyn

Hi 

I was diagnosed with a maxillary cancer in Jan 23. It’s very rare I understand. I had chemotherapy as surgery had to be delayed.

i then had a radical extended Maxillectomy with a fibulae free flap reconstruction. Then had 6 weeks of radiotherapy which ended in August 23. I’m just about back on my feet.

I’m than happy to give any advice. 

Regards

Fred

Welcome Fred. 
If you have time you could put a potted history in your profile. You can have a look at mine to see what I mean. Just click on my name 

Good evening Fred, well done in getting through the treatment and surgery and your offer to give advice, its a worrying time for people just starting treatment or surgery so please feel free to add your advice and help from your own experiences. All the best.

                                                      Chris

Ive lived to tell the tale. My experience was of brilliant care and dedicated people, to whom I’ll always be grateful. Patience is something you need to learn though. Waiting for things to happen and for answers to questions.