Newly diagnosed Oesophagus cancer

Thank you all for your messages.

The latest update is Mum has been very sick these last two weeks.

Some days just surviving on two ensure drinks a day.

Foamy sick, and very painful.

Her back aches from the bones sticking out, wobbly on her feet due to no food.

I phoned her Macmillan Nurse and she organised a barium swallow.

This was yesterday.

Today we had a phone call, they want Mum in tomorrow to fit a stent.

The 5 days of radiotherapy hasn’t done anything to the tumor.

I’m just wondering what happens now?? 

If you have the stent fitted can they then do more treatment to stop the cancer spreading?  Xx

Dear Running lady

You seriously need to escalate her situation. The oncologist has completely failed in his responsibility to her. 

If he felt she could not sustain curative treatment he should have fitted a stent and given her palliative care. He has failed his duty of care. 

She urgently needs this stent fitted as otherwise frankly she will literally of starvation. I am shocked and horrified. You need to find out who to raise this with really really urgently. She cannot survive on 600 calories a day. She can also be fitted with a feeding tube. 

The oncologist is supposed to have done the following tests:

Barium swallow for sizing of tumour

Endoscope to view tumour and tame biopsy for histology for type and staging of cancer

Ct scan to ascertain the staging

Pet scan to assist in showing whether cancer contained or spread - critical to staging

Endoscopic ultrasound to find staging

All of this is standard procedure

Once he has staged her for example say she is t4n1m1 - stage 4 with lymph and metastatic spread she would be given say a stent so she can fatten up and potentially give her palliative chemo to extend her life

If she were say t3n2m0 then she could be given a stent chemo to reduce tumour and radiation (and only if she has a squamous cell cancer as the more common type adenocarcinoma is not receptive to chemo). 

T stands for tumour stage

N for lymph node involvement 

M stands for metastatic spread 

I simply cannot believe this. You need to be contacting your hospital. But what is not appropriate is to let her starve to death!

Blossomstix,

Oh no.. please don’t panic, this is my ongoing post from the first diagnosis of the cancer.

 Mum was diagnosed late October, had all these tests done. Staging, 5 days of palliative radiotherapy (hasn’t worked)

It was T3N1M0, 

But It’s grown according to Monday’s barium swallow.

We dropped Mum in this morning to have the stent fitted today.

Xxx

First I’d like to say the biggest thank you to so many of you who have replied to my original post from October when Mum’s cancer was diagnosed.

Mum had the stent fitted last week, was kept in overnight, and is doing really well.

Still very weak, but managed some mash potato, mince, and mashed carrot yesterday.

The first meal since November, a small amount but she loved it, and was not sick.

However the consultant is worried about Mum’s constant cough, and the report that came from the hospital showed pneumonia. 

We are back for another swallowing test on Monday to make sure things are ok then the next step.

We have the most caring specialist nurse called Gill who is so kind. 

Thank you all for helping me through these tough months, my worries, we will keep taking one day at a time xx

Hi, Runninglady,

I am really pleased your mum is doing well since she had her stent fitted my mum had had hers since last June and I’d still doing really well with It. 

It all sounds so scarey when the word stent is mentioned I know I was horrified at the time but it has really benefited my mum so much and hopefully your mum too. 

Shine27 xx

Shine27 

Thank you so much, you’ve really helped me

How is your Mum now? 

Has your Mum had anymore treatment since the stent was fitted? X 

Hi, runninglady,

She had 10 sessions of palliative radiotherapy since the stent that was last July. 

She is eating, not a lot though thank god  for the feeding tube she has lost a lot of weight though and can’t walk very far as she is too weak. 

I am just glad she isn’t in any pain that is my biggest fear can’t face seeing my mum in pain.

She was offered palliative chemo in September but refused to have it kept having a go at her to have it, she is to weak for it now anyway. 

Has your mum been offered any more treatment after the stent at all ?? 

Take care shine27 xx

Shine27, 

Thank you for the quick reply.

Mum has yet to find out what will happen next.

The stent being fitted was the big thing.

If offered chemo she wouldn’t have it as seen her sister so sick with it last year, and passing away at just 53 years.

We are awaiting a scan to see if the tumor has shrunk or grown, but this can’t be done till this mystery hole has closed up. 

We are back having another barium swallow on Monday.

Has your Mum spoken to a palliative care team? They keep offering but that p word is so final?? 

Mum said she’s not ready yet. 

We are hoping to have a walk today if it’s warm enough xxx

You have a good weekend too. 

I want to thank this group, and especially the people who have helped give me answers I wasn’t brave enough to ask the questions too.

We met Mum’s consultant yesterday who broke the heartbreaking news.

Mum was so brave, we all hoped the cancer would stop growing after the radiotherapy.

This is going to be a time now to make the most of Mum, manage her pain and enjoy ever last day we have together.

Back in October when Mum was diagnosed I thought we could fight this, but cancer your stronger than we thought.

We didn’t want to know how long, but yesterday we were told it won’t be long. 

I wish Mum could live forever.

My wonderful Dad is totally heartbroken but putting on such a brave face. 

41 wonderful happy years married.

I’ll carry on updating you with things, but I just wanted to say a big thank you xx 

Hi, 

Running lady I am so sorry you have bad news about your mum. 

How is she in herself I hope she is not in any pain.

Tbh I don’t know how my mum is fighting this she weighs next to nothing she is on steroids now as she has no appetite at all. 

So I know exactly how you are feeling ,can’t get cancer out of my head it is in my thoughts all the time.

How long exactly have they given your mum(if you don’t want to say I won’t be offended) 

Thinking of you and everyone else fighting this horrible disease. 

Shine27 xxx