Hello Patsy,

Just wanted to welcome you to the site and to say how sorry I am that you are faced with having to make a decision like this.  This disease is so cruel - no one should have to make a decison like this.  It sounds like you have been let down with your diagnosis, but I do hope that you get all the support you need in making your decisions, and with whatever you decide is for the best.  I would make sure to ask what kind of support might be available to help you come to terms with the operation should you choose to have it.  I found this site shortly after I lost my Dad to Oesophageal Cancer, its a great site for getting support with whatever you are going through, there are lots of lovely people on it.  I know when my Dad had his appointments, he was often hit with too much information all at once, but by the time of the next appointment he had lots of questions - I know he used to write some of the questions down.  His wife was pretty assertive at asking questions too, so it may help to have someone with you to support you and make sure you get all the information you need.  It might also help to ask your consultant / medical team what they think would be best - I know Dad did that, and they did offer an opinion.  In his case this was whether to go ahead with surgery to remove his Oesophagus.  Katielouie x 

Hi Patsy

Welcome to Cancer Chat.

I hope that someone with similar experiences to you reads your post and comes back to you quickly about this.

As you only have a short time to make a decision, I wonder if it would help to call our specialist nurses?

You can contact the team from Monday to Friday, 9am to 5pm, on: 0808 800 4040.

I am also linking you to our information on treatment options for this type of cancer.

Do come back and let us know how you are getting on.

Best wishes

Jane

Hi Jane

Thank you so much for your reply.

I have looked at the pages you recommended and although I had read some of them, i had not seen them all and they have helped me a lot.

I'm no nearer to making my decision but I now have even more questions that I need to ask.

It has made me realise that I can't make my decision yet and shouldn't be expected to, until I have been given a lot more infromation from the consultants.

Thanks again.

Kind regards

Patsy55

Hi Katielouie

Thank you very much for the welcome and your kind words.

I'm sorry to hear about your Dad.

I too, lost my Dad  just over 3 years ago,to the same type of cancer that I have now, only my Dad's cancer was mouth and mine is in my nose.

I have asked for the consultants opinions and have had difference of opinions, the surgeon recommends surgery most definitely, he thinks the chemotherapy/radiotherapy may lead to my nose collapsing and the oncologist thinks the cancer should be treated with the chemotherapy / radiotherapy and although it might leave me with a hole in my nose, at least I would still have one. Hence my dilemma????

I now don't think that it's just me thinking that I have too many questions and i think I need a lot more questions answering before I can make this decision.

Thanks again for your reply.

Take care.

Patsy55.

Hi

I just wanted to update on my original post in case this helps anyone else going through the same thing I did, and still am.

After a lot of soul searching and talks with the oncologist and surgeon and a delay for surgery for the removal of my nose and a prosthesis, I was sent to have supposedly 1 session of chemotherapy to ensure the cancer didn't grow as they couldn't fit me in for surgery straight away. To cut a long story short it seems somehow everything to do with the surgery got missed / forgotten? and I ended up going for the 2nd cycle of chemo and because I felt let down by the surgical team then and because i was never totally happy with the prosthesis route I had decided to carry on down this route.

The day after my 2nd cycle of chemo the multi disciplinary team must have met and my case discussed, the surgeon was on the phone and wanted to see me the next day. I told the surgeon I was adamant that i was going to carry on with the chemo / radiotherapy route but he then came up with the fact that he would do a full nose reconstruction and he would book me in for the operation to take place 5 days from then.This was totally unexpected and in the end I opted for this surgery,

I had a 16 hour operation over 5 weeks ago and am home and physically recovering. It is a lot to go through though and affects so many parts of your body, forehead flap and forehead skin recovery, skin grafts from arm and stomach, bone from arm, cartilage from ears

My face still looks horrific, especially my 'new nose' and the wound on my forehead which is still awaiting the forehead flap to be done (the wound on my forehead is covered by dressings). I won't go out, and don't know when I will feel comfortable doing so, possibly not for quite a long time, but in this regard, I know everyone is different and I'm sure some people wouldn't let this worry them and go out anyway.

I did know that it wouldn't look good and would take some time to heal but I wasn't prepared for how bad it would be and wish I had been made more aware of what it would actually look like so I could have been more prepared or that could have even changed my decision.

I'm glad I haven't got a permanent hole in my face, I don't think personally I would have managed with a prosthesis but I still don't know whether I have made the right decision, only time will tell on that one, it is dependant on how much better they can get my nose to look. It has already been mentioned that a few 'tweaks' may need to be arranged, again I was only aware that there would be one further procedure after the main operation and not 3 or 4, which is what has now been mentioned.

I've also just been told that there were a few tiny cells left behind so require radiotherapy as well now.

It may be 12 months or so before I have a 'finished nose' and probably only then will I be able to say whether I made the right decision or not.

On saying all the above, the positive is that at least I'm still here....

I'm posting this update, just in case there is anyone else out there going through anything like this at the moment so hopefully this may help with their decision or at least give them further questions to ask their own consultants as it is a really difficult decision to have to make.

Kind regards

Hi Patsy

Thank you for posting an update on how things are going for you.

It is very thoughtful and I agree, it will be very useful for others who are faced with similar treatment decisions.

Please come back again and let us know how you are getting on.

It will be interesting to find out how you feel in 12 months when you have your "finished" nose.

Best wishes for a speedy recovery,

Jane

Hi Patsy

Well your post was a realu surprise.  After giving you two options and no reconstruction to go to a full reconstruction and op in 5 days seems nothing short of miraculous.  Given the same options as you I would have gone as you did for full reconstruction as a protethic nose sounds weird and no idea how it would look/work.

To then go from one further op to possible 3 or 4 more must certainly be offputting.  surely they must have had some clue that this was a possibility.  I doubt you are the first they have done and therefore must have come across this before.

Althouh it looks horrendous now I hope that it will improve but in the meantim do not consider what anyone might think.  If you want to go out then go out and enjoy the sun while we have it.  To be stuck inside for anything up to a year must be an awful prospect.  Perhaps a low brimmed hat and large sunglasses will hide some of your face so do you not feel so concious of it.

Very best wishes.

Gill

Hello,

I've just come across this thread and I just wanted to drop you a line to say that I think you are so very brave to have gone through such an experience. It must of been a very difficult decision to make and such an awful situation for you but when you are feeling down about the way you look right now, please try and remember that the human body is a wonderful thing and will probably heal quicker than you imagine. Give yourself time and don't expect too much of yourself and you will adjust.

Nine months ago I had reconstructive surgery and just a few months afterwards people were saying they couldn't believe how far I had come along. You will be there too soon, I'm sure. Nine months on, I sometimes forget I've even been through such a thing,  it's amazing how the body adapts.

I also had radiotherapy to my head so I expect you will have a mask made too for your radiotherapy. If you have any questions about this, please feel free to ask. In the meantime, keep going, you sound fairly positive, keep it up if you can and when you can't, come on here and have a chat with us all.

Good luck,

Nicola xx

Hi Nicola

Thank you so much for your kind comments and your positive response.

I too wish you well with your continued recovery. X

Hi Gill

Thank you very much for your good wishes. X