Together we will beat cancer

Donate

Oesophagus cancer, unable to treat

20 Dec 2019 08:27

After 3 weeks from being diagnosed with oesophagus cancer 5th December 2019 I was told yesterday 19th December it is to late for an operation, the lymph nodes are large surrounded by a large tumor and the cancer has spread to the liver, what next ? I attend a pet - CT scan tomorrow 21st December 2019 with radioactive fluid injection then the consultant will phone me Monday night after their meeting or Tuesday morning to try and work out how long I have or what happens now going forward, all I have been offered is a stent to help me swallow food.

My head is so confused how can my life change so much in 3 weeks, this living alone with no family or friends just my dogs is making it more confusing.

Oesophagus cancer, unable to treat

22 Dec 2019 11:56 in response to AlanM

Hello AlanM, 

I am so sorry to hear about your diagnosis I hope you will meet others here who have had a similar diagnosis before and been in a similar place. One name that inevitably springs to my mind is @davek ‍ who will understand exactly how you are feeling at the moment and what you are going through. I can imagine it has been a very difficult three weeks with so much to take in.

How did the CT scan go yesterday? We are thinking of you as you are waiting to find out all the details from the consultant tomorrow or on Tuesday morning. Your dogs must be a source of comfort during this anxious time - that dog on your profile picture looks very affectionate. 

Our nurses are available on this free number 0808 800 4040 Monday to Friday from 9am to 5pm (please note their helpline will be closed on 24th 25th and 26th December and 1st January) 

We're all here for you at any time so feel free to come on the forum and talk to others who understand how you are feeling at the moment. 

Best wishes, 

Lucie, Cancer Chat Moderator

 

Oesophagus cancer, unable to treat

22 Dec 2019 12:22 in response to Moderator Lucie

Thank you for replying to my post.

I am in a better frame of mind, the initial shock I found hard to understand it does not help facing this type of news alone - but I am now starting to cope taking it one day at a time, my doctor gave me some tablets and a sympathetic ear that along with my faithful dogs and long walks has made all the difference to my present mood.

I had my pet-ct scan yesterday all straight forward, now waiting for the results, I am confused to what happens next, do I start radiotherapy and chemotherapy or is that it!! Nothing has been mentioned about possible treatments to hopefully delay or allow me to fight this cancer I just feel a little powerless I need the tools to take this on, hopefully when the results from my pet scan are given I can fight back.

Thank again for replying, the dog in picture is my 10 year old rottweiler, Cain very loving faithful.

Oesophagus cancer, unable to treat

23 Dec 2019 11:47 in response to AlanM

Hi Alan,

Sorry to read about your recent diagnosis - I've a good idea about what you're probably feeling at the moment. The are s many unknowns until you get the results of your CT scan.

It didn't help that my own diagnosis was given by a surgeon with the bedside manner of an emotionless psychopath. He just said, you're untreatable so I'm referring you to oncology for palliative care. So many people confuse palliative care with end of life care - which isn't the same thing. In my case the palliative care was chemo to help shrink my cancers and extend my life by several months. There may be other treatment options available in your case. My own options were limited because my primary had grown around my aorta which made surgery or radiotherapy impossible. 

It is a good idea to write all your questions down beforehand and to write down the answers you receive. Research shows that we rarely remember more than 40% of what we're told when we're stressed. 

 

Good luck with your results

Dave

 

 

Oesophagus cancer, unable to treat

23 Dec 2019 12:01 in response to davek

Thank you Dave for your post, I am waiting now for the pet-ct scan that I had Saturday with the radioactive fluid injection, the consultants are meeting today to decide what next? Phoning tonight or tomorrow morning, I am staying positive despite being told the oesophagus cancer now has liver as a secondary cancer and the lymph nodes are large and surrounded by a large tumour, I really am struggling to eat with the food getting stuck and me vomiting, I have been informed about a stent but I will wait to see what they come up with this coming call. Hopefully not more negatives.

Thanks again Dave

Oesophagus cancer, unable to treat

9 Jan 2020 21:43 in response to AlanM

hi alan just dropping by to say hi and im so so sorry to hear your latest news, i hope you are somehow finding the strength the stay positive........miracles can and do happen all the time so never give up hope x

Oesophagus cancer, unable to treat

10 Jan 2020 14:56 in response to fisherprice88

Thank you for saying Hi, 

I am coping with life, mostly due to the support I am getting from the hospice who are sorting my care out and benefits, I am also receiving counselling once a week with them.

I am trying to stay positive but it is hard to do when you're refused any treatment, now the oncologist seems to put you to one side with an appointment weeks away !! I do see his point if he says there is nothing can be done so why should I expect him to waste his time with me when he can be helping people that are helpable.

As I say I am coping and thank you for asking.

Kind regards Alan

Oesophagus cancer, unable to treat

11 Jan 2020 06:38 in response to AlanM

Hi Alan, just wanted to say not to feel too alone....Stents can make a huge difference - my friend with stage 4 found that when she was able to breath and eat more normally she had much more strength....and that made her more able to cope with chemo etc. I also wanted to mention that if you are having to make plans which include your dogs the Cinnamon Trust charity provide volunteer dog walkers and fostering if you can't manage it at times. I recognise your dogs are your family.....and we all want those we love to be taken into account too....

Oesophagus cancer, unable to treat

14 Jan 2020 23:03 in response to AlanM

helping you wouldnt be a waste of there time at all, aww alan dont think like that, u are definately worth there time no matter what!.....just dont give up hope, miracles do happen Happy xx

Oesophagus cancer, unable to treat

15 Jan 2020 02:59 in response to fisherprice88

I have been receiving help via the phone from my local hospice who have done so much for me sorting benefits, ablue badge but yesterday I had my first visit to meet some wonderful people I had counceling expressing my fears of not being given treatment since being informed on the phone 19th December I had 12 months and the cancer was to aggressive for treatment at about7pm I was left by my Macmillan nurse inacold sweat with no support, I have not heard from her since I am far from impressed with Macmillan nurses a phone call by now to see if I was coping would have been the least I expected after a phone call saying I am a dead man within 12 months - but nothing, I will expect or ask nothing from Macmillan

Thank god for the hospice they are now attending with me my next oncologist meeting 24th January 9.45 to help.me at last get some treatments I will no longer have to face these people alone I will have much needed support they will stand by me pushing for a chance to get extra time to care for my mother with dementia and my dogs.

My utmost respect to the hospice I have been welcomed into their family my future wellbeing will be supported by them

Oesophagus cancer, unable to treat

21 Jan 2020 22:48 in response to AlanM

this isnt the first time iv heard bad things about mcmillan!! at least the hospice are helping you through this!.......sorry it takes so long for me to reply iv been so busy with work and recently found out that my stepdads lump in his esophegus is actually cancerous, i am devastated, and the waiting for results etc is horrible!! i cant even imagine how u feel with all this, u seem so strong and brave........how are u doing since ur last message? if i ever need to ask u any questions about my stepdads cancer journey would that be ok, i have no clue whats going on at the min, he finds out tomorow wether it has spread or not x

Oesophagus cancer, unable to treat

22 Jan 2020 00:32 in response to AlanM

Hi AlanM

Very sorry to hear your suffering from this disgusting cancer .

I lost my beloved dad in September to this horrible cancer it too spread to his liver . He died in 9 weeks of being diagnosed . He was 69 a healthy man , his NHS treatment was poor , they wrote him off i think because of his age and social background . I am angry so angry with how he was left and not treated quickly enough . 

The only positive was the hospice where he spent his last 9 days of life . This cancer i will never forgive , the images of my dad are in my head constantly .

I have all the respect in the world for his hospice care  but his NHS care was **** !

 

Oesophagus cancer, unable to treat

22 Jan 2020 05:42 in response to mikkey71

So sorry to hear about your dad, I know what you are saying I still have not received so much as a aspirin, I see an oncologist Friday a 24 January 2020 at 9.45 am along with a hospice nurse who is trying to get me some treatment, the NHS stinks, I have been placed on palative care but received nothing.

If it was not for the hospice I think I would have ended this pain by now, 

The worse of it is despite the fact I went to my doctor's a good 18 months ago with this concern of blood in my mouth trouble swallowing at times and acid reflux with shortage of breath all they did was give me ranitadine and inhalers.

I have not got long left I feel like giving in the lack of support from the NHS is killing me, I am losing the will to fight for life, if they don't give me some treatment this Friday along with some support ? I last heard from my so called caring Macmillan Cancer nurse 19th December 19 when she told me I may get 12 months, I live alone with no family, god it's hard.

Oesophagus cancer, unable to treat

22 Jan 2020 07:37 in response to AlanM

Sorry for the above rant, I was layed in bed wondering what the day is going to bring but also happy to have the chance to face it, I thinks!!.

My future life all depends on this oncologist I have waited weeks to see. If he is not willing to give me a chance to fight this sick evil oesophagus cancer with secondary liver on Friday 24th January  I may as well end it to save the suffering that lays ahead.

I am not one to give in but can not fight this alone I need to be given the tools to fight back and only the NHS can supply them, if I had the money I would go private - it seems to me it is all about money, my treatment if I had money would be given without question, I would be given a chance of life Not ignored for weeks. I have no respect for them that are denying me the right to fight back and Macmillan who have ignored me since telling me I was terminal and in palative care at 7pm 19th December 2019. If I am not offered treatment on Friday they will find out how I feel about them, I have nothing to lose.

Sorry ranting again.

Oesophagus cancer, unable to treat

22 Jan 2020 08:23 in response to AlanM

Hi alanM I'm surprised you aren't ranting a lot more than you are. Hopefully you will get something sorted on Friday. Or we will here more ranting, don't worry we hear plenty or we can always put our fingers in our ears. Good luck.....

Billy