Oesophageal Cancer

[Brogadaccio]

My mum has a tumour and will be having chemo within two weeks. Unfortunately my Dad was with her when she was told this and he's such a self-absorbed hypochondriac he never thought to ask how many cm the tumour is or what stage it is. I'm googling here but it's impossible to learn anything real without knowing how big her tumour is.

If stage one cells still look normal to the naked eye then would I be right in guessing that a tumour must be grade four?

It could be 1-3 most likely. Stage 4 is when a tumour spreads to another area. I'm sure had it been anything severe they would have said?? Patients shouldn't have to ask, the doctor should be going through everything?? Can your mum call her consultant?

Thank you so much for your reply MissBax I have asked my Mum a few questions that I thought were obvious questions and she says ''oh I don't know" to everything. She is being referred to somebody and I have googled him and he seems up to the job but he hasn't met her yet so I couldn't persuade her to call him. I think her notes and results would have been sent to the GP so I miiiight be able to persuade her to call the GP on Monday.

sorry to hear this. you should get a cancer nurse who will be able to help. they might not be exact on stages yet but most are 2-3. is it actually gastric junction or oesophagal? did they mention an op after chemo? hope you dont wait too long for answers. dont google too much without knowing - it doesnt help.

Patients shouldn't have to ask, the doctor should be going through everything??
Exactly. There's normally too much information to take in, medical terms people are not familiar with, people are in shock / distressed, concentrating on the one piece of information that they feel is important to them, busy supporting the person they are with to be thinking about questions someone else is interested in. Ideally, the consultant should provide the patient with a copy of the notes they will have made.
I presume it wasn't possible for you to attend the appointment, OP?
Sorry for the bad news.

I would imagine it's hard to take news like that in, so go easy on your poor mum! Are you able to go to the doctor's with her? He/she should be able to explain it to her again.

That's really a shame they didn't give your mum enough information ❤ I think some doctors can be very quick and almost cold at times. Definitely don't hesitate to chase this up further before the next appointment. Call her GP and ask what is going on and explain the disappointment of not knowing, they should really know this. Good luck with everything xxx

I am really sorry to hear about your mum's diagnosis.

Does she have a specialist nurse? She might be able to make an appointment to talk it through with them. Lots of people won't take in much information when first diagnosed anyway, so they won't be expecting your mum to remember everything to start with.

I think you're confusing stages and grades. There is some information on the NHS website. The grade just means how abnormal the cells are, but grade 1 cells are still cancerous. The grade is usually between 1 and 3, whereas stage is between 1 and 4.

I hope that your mum's treatment goes well.

Sorry I'm so slow at typing

my dad was not told the stage until later on, so maybe they dont do it routinely at this point. it partly depends on lymph node involvement but presumably they havent got that info as yet.

Is it possible that your Mum knows but doesn't want to give you all the details.

She might want to protect you or might be in denial herself.

I wish her all the best for her treatment.

Blimey yes I guess that could be possible. It does seem unlikely that the two of them walked out of there without knowing how many cm the tumour or what stage it is.

She was told that they would do chemo to shrink the tumour and then they'd see about an op.

That much she remembers! I have been going easy on her honestly! I think she can't handle my questions so I've just tried to be satisfied with the scant info she's passed on.

its really likely they were not told. I doubt she is hiding it. ok, so possibility of op after chemo makes it considered curable, they dont operate on stage 4, or some stage 3s (this is just based on my googling with my dads diagnosis, I am no expert). best focus for the moment is keeping your mum as healthy and fit as possible so she can get thro the chemo then the op. wishing you well.

also, the staging is really complex as they look at 3 or 4 different things, some of which you might not know for sure til after the op eg exact thickness or lymph.node involvement

My Dad was all set for the op when his was found to have spread to his lymph nodes. My parents did all the appointments together as at each one they knew they would 'hear' different things.

Mum also took notes and got the docs to repeat stuff if she couldn't write it down in time. The first 1 or 2 appintents they were reeling though.

Also, I had to speak to Dad's GP a couple of times but it was made clear that they couldn't tell me anything, I could only inform them of things iyswim?

I hope it all works out for you all as well as it can with this shitty disease xxxx

sorry to hear about your dad ThornyBird and for us all. it is shitty.

It wouldn't cross my mind to ask how big my tumour was.
I only know about the stage thing b/c of my work... or maybe an elderly relative dying. Anyway, the stages don't seem simple.
I'd be asking where to be when & what to be doing.

I hope your mom has successful treatment, Broga.

It's really hard to remember anything much from these appointments.

She should get copies of letters, I think, most consultants do this now but not all.

If you can get her permission, I agree with others that speaking to the clinical nurse specialist might be the most helpful thing at this stage.

Sorry to hear about your mum what a shock for you all .

It's v hard/impossible not to google but bear in mind 2 things
1 any studies/statistics are based on data collected years ( 10 ? ) ago and things have improved
2 there are many more posts from people who have struggled than from people who have coped well

This is a good site healthunlocked.com/oesophagus/posts for info and support .

This organisation is good ,I found them much better than Mc Millans ,have local support groups and volunteers that you can phone .
www.opa.org.uk/

FWIW I had a tumour at junction of stomach and oesphageous ( v common ) .It was 6cm ,stage 3 . At my first meeting I was told chemo first and then probably operation . Chemo didn't reduce size of tumour but stopped it increasing .I had op at St Thomas's in London 3 years ago and I'm very well now . I'm 66 .

Feel free to PM .Any questions whatsovever ,happy to help id I can .

Treatment and prognosis is much improved for this cancer .

Keep your chin up .

OP I think tests to assess size ,position of tumour and any spread are normally

endoscopy

endoscopy + samples ( brushings /biopsy ) of tissue to look at cancer cells

CAT /CT scan to see if spread to lymph nodes or other organs
( common to spread to lymph nodes ,these are seen to be body'd safety net catching cancer cells before they spread )

PET scan - I think this highlights where cancer is active in body and I think it's better at detecting lymph node involvment

Endoscopy with ultrasound ( EUS) to get better view of tumour and to give base line picture before chemo .

None of the tests were painful .They didn't manage to get the EUS down because of size/position of my tumour - just telling you this as I wish I'd been prepared . I don't think my tumour was particularly big or unusual ,maybe it was in a difficult position .

Oh and this www.mumsnet.com/Talk/general_health/2816118-CANCER-SUPPORT-THREAD-58-New-thread-new-year-but-the-lacies-are-still-here-Please-join-us-if-you-have-any-sort-of-cancer-or-are-waiting-for-test-results? thread is very helpful and supportive for anyone going through tests or treatment for cancer .And will make relatives welcome too !