Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Mummy of 4 yr old son. My Oesophageal cancer has spread to my liver lobe

Tay Play
Posted by

Just having some really tough days and having had 5 different consultants since diagnosed October 2017 I have found the latter 3 to be very unhelpful. I’m the sort of person who research’s  things I know little about (was a nurse in mental health for 24 yrs).However anything I bring to the table is dismissed the only exception is when our hospital of clinical excellence in the uk suggest something. 

Also my best treatment option now involves a combination of NHS and private treatment medication. Just seems so unfair that some treatment is only available to private patients. At 48 years old when diagnosed I hadn’t considered private healthcare insurance. 

My much longed for IVF son was just 2 1/2 years old. I am a single parent with older parents who currently care for my son as my energy level are limited. I’m petrified about his future without me as there really isn’t a plan B. I worry every minute about my parents health and caring for a very head strong active 4 year old!

Guess I joined here to let off steam.

Carolyn28
Posted by

hi

welcome to the online community 

feel free to have a bit of a vent

I am from the breast group and whilst being treated I met a lovely lady who persuaded me to join in her campaign to march on parliament and demand Kadcyla for breast patients. 

After which I spoke to my oncologist about the difference between paying and paying via private healthcare and the NHS.

Money won't solve all the problems, if it did rich people wouldn't die of cancer and they still do. 

However it does appear to give you more options. Most of the women I met then, with secondary breast cancer, had benefited from private care. I looked into it and decided I'd better look into it and the oncologist immediately arranged some scans, which the NHS are reluctant to do usually. I've now completed the two year moratorium which was imposed so effetely covered if I have recurrence or spread of the breast cancer, I was covered for anything else immediately .

I also looked into cover for my daughter but it's still expensive. 

Much as the NHS does provide a service it seems to lack the ability to focus funds appropriately. 

I also went to a NICE meeting, that was an eye opener. 

Have you had a look around the site ?  We have an active group dealing with incurable diagnoses. Feel free to join in there. 

Or we have the Room which is for ranting, I use it quite a bit

Carolyn

xxxx

 real life success stories to remind you that people do survive breast cancer

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

Dr Peter Harvey

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

 

Tay Play
Posted by

Dearest Carolyn

Thank you for your email.

Can I clarify it as I'm not as sharp minded as I was.

So are you saying you got healthcare insurance after diagnosis? If so who was it with?

I begged my consultant to apply for an Individual Funding Request (IFR) which is the NHS process of applying for funding for medication not licenced by NICE. He seems very unenthusiastic and to be honest when I read the criteria for exceptional circumstances, me not being able to tolerate toxic chemo due to kidney damage, will not meet their approval! Basically I'd have to have ten legs and no head to be in with a chance, it's a joke and leaves me feeling even more hopeless.

Sorry yet another rant.

Love 

Karen x

Carolyn28
Posted by

hi Karen

Funding applications are not for the faint hearted and I suspect that some medical professionals have done it and had good results, some tried once and gave up and some are so freaked out by the process they don't try.

That NICE meeting I went to, there was this doctor, he seemed really kind and friendly but he was so pin sharp when I put up a bit of an argument he played devils advocate and I crumbled, he did apologise but these are clever people and they are dealing with us statistically rather than individually, they have to make god decisions for the millions and some cases, however worthy, will slip through the cracks. 

I guess the IFR would be the way to go, I'll have a quick google, do you know what treatment plan might be available IF you had private healthcare ?

What he did say was that they do consider everything very carefully, and I do believe them, but, it's not quick.

I was frustrated by the weekly MDT meetings being literally once a week, it felt like an eternity. 

AXA PPP was the sales person who persisted with chasing me and made her commission on the sale. 

I haven't used it although I really want to test it, to see what happens. I have a mole on my thigh which some see as suspicious but most don't, trouble is, you go poking around these things they flare up, sometimes it's better to leave them alone. 

The options on healthcare are mind numbing because unless you have a specific example you can relate to you have no idea whether you'll need the various levels of cover, and as you can imagine, affordability comes into it.

I'm going to attempt to summon help, in the form of , who has been around a while and has achieved at least one compassionate drug by asking nicely, if I remember rightly. 

She's very clever and up to speed on things like the IFR, hopefully !

I'm off for a quick google.

Carolyn

xx

 real life success stories to remind you that people do survive breast cancer

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

Dr Peter Harvey

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

 

daloni
Posted by

Hi

I am really sorry to hear what you’re going through. I am not sure what I can add though. I did get access to a new drug through compassionate use - funded by the drug license holders in the US - but this was pursued by my consultant. I know it was on the basis of a highly unusual combination of a specific inherited gene defect and unusual cancer presentation but I have no insight into the process of obtaining the funding. 

All I can say is keep reading, keep educating yourself, keep asking questions 

good luck!