Advice please

Hi Smileraw,

1. So sorry that you find yourself on this forum. None of us wanted to be here. Oesophageal cancers are graded using the TNM staging system (you can read more about it on this site) The T refers not so much to the size, but how deeply the tumour is embedded into the oesophageal wall. N is the number of lymph nodes which are affected and M refers to whether or not the cancer has metastasised (spread) to other organs. Unfortunately the fact that your MiL’s tumour has wrapped around the windpipe would make her unsuitable for surgery but there are other treatments that may be available to her. Hopefully you’ll be much better informed after tomorrow. Make sure you go prepared to the meeting with any questions you have written down so you don’t forget to ask them. I wish you both the best for tomorrow’s meeting and whatever the future might hold. CB

Have you checked with your Mother in Law that she wants to hear the full prognosis? And that she wants her children to hear it? 

I go to my clinic appointments with my sons and/or daughter in laws. Not everyone in a family is ready to hear or to accept the answers to some questions at the same time.

I am a similar age to your MIL. I tell my children before the appointment the questions I am going to pose suggesting if they do not want to hear answers to these that they step out of the room.  And similarly they tell me the information that they would like to get out of the meeting. 

Hi Smileraw it would seem that your in limbo at the moment and although this is worrying I can say with a level of confidence that all of us on here have been at some point and with some varying degree been there.

Times are going to be challenging for all of you while you don’t fully understand what the future holds. it’s not a nice place to be right now. But the more you know about the diagnosis the better you can deal with what to expect  

Since your mother in-law has only been suffering since August I would say that her team are still at the stage of looking to see what treatment options they have and the best way to move forward. Saying that mine were pretty quick when making decisions like this so with a bit of luck you’ll get the answers your all desperately need very soon. 

As for the aspiration (food in the lung) I too had a similar experience, although mine was post operation and was caused by my sleeping position. My situation didn’t mean I had to go nil by mouth but saying that pre-op I did experience not being able to eat or drink and when I did, I would be sick straight away, similar to your situation I too had a NG tube fitted and didn’t have any solids for some time maybe a month or so? This will be different for your mother in-law as it sounds like her tumour is higher up. 

As already said by others write down what you need to know and any concerns, the amount of times I would leave an appointment and kick my self because I forgot to ask something.  

I wish you all good luck and hope you all get through this together. 

Thank you

Thank you and i hope you are okay too

Hi yes I did she was getting frustrated and anxious as she didn't know what was happening and actually so did I as everyone was in the family was coming to me for answers. So  myself and my husband went to the meeting . we have only told his older brother and my daughter (20). thank you and I hope you are ok

Thanks for your advice and support.

I rang the hospital most days for answers I have thought of even though I go to the meetings, as they have been vague. However yesterday I booked an appoint with ML's nurse to let her know what was going on.

Since beginning of September to now the tumour has grown from T4 to T4 one lymph node affected. Treatable not curable, and she will never drink or eat through her mouth again. her weight has gone from  9st 8 to 7st3 which is a bit concerning, but hopefully once she starts the feeds I am hoping she will pout some back on. 

Just waiting on the letter to come through contain all the information we were told yesterday. and fingers crossed the referral to the christies come around fast.

Good new the stomach rig is fitted we are being trained how to use it this morning and hopefully can bring her home today