Surviving Oesophageal Cancer

Hi Cally

Yes, especially when he eats late at night and doesn't prop himself up enough in bed.  Also chocolate in the evening causes problems...and this is 5 years after the op.  It's a lifetime challenge.

I'm glad your husband us doing well otherwise.

Love Sue

Thanks for the kind words Crystal.

Frank had an appointment yesterday to have a look at a nodule in his neck. They may want to biopsy it - he will have another scan probably next week, and the radiologist may do the biopsy at the same time.

He asked about the likely outcome though and was told that even with chemotherapy he may be only looking at 12-18 months survival. Which is roughly what he was thinking himself. I must admit I was more optimistic and was hoping for 5-8 years. This was really hard for me to hear and I have been feeling realy low since then. He's been quite philosophical about it, though obviously still fearful and sad. His symptoms do seem to be getting gradually worse. He has a hoarse voice and coughs like a 40-a-day smoker, he's noticed some twinges in his chest and sometimes has problems swallowing again.

But we are facing it, made our wills and talked about funeral plans and what he wants to do before he gets too ill to do anything.

Sorry for having to share bad news like this but it does help to face things knowing that there are lots of others in similar positions.

Michael

Hi Cally

Good to see you again and it sounds as though your husband is doing quite well apart from that cough.  As sue says, there are a number of things that can cause a cough and chocolate doesn’t sit well with me, nor lying flat on my back and sometimes I cough for no apparent reason, but never continuously.  As your doctors say, it could be the pressure of the stomach pressing against the lung which is aggravating the tissue and causing the cough.   However, I was a little disturbed where you say that food and drink go over into the lung as this would certainly cause a cough and could also cause an infection, so you’d need to discuss this in more depth with the doctors.  I do hope the cough eases in time or that your doctors can investigate further and perhaps provide medication to relieve it.

Let us know how you get on.

Love Crystal xx

Hi Michael

I’m so sorry that the prognosis wasn’t what you’d expected, it must have been a terrible shock to hear it.  Having said that, nobody can say for definite how long someone has and I’ve spoken to people that have long outlived what their doctors told them, so nothing is set in stone.

Hopefully, some of those symptoms you describe can be controlled with the appropriate medication and further treatment, talking of which, have the doctors said what Frank’s treatment plan will be?

Whilst it’s right to make those practical plans that you have, don’t forget to make really enjoyable plans as well, as this goes a long way in improving overall physical and emotional wellbeing. 

Keep in touch and let is know how you’re doing.

Love Crystal xx

My partner finished radiotherapy treatment 8 weeks ago.  We were told that he would be scanned after 6 weeks to determine the success of the RT.  We are still waiting for the scan.  It is so frustrating.  I also wonder what the next step is.  We were told the tumour had grown through the wall of the gullet and was too close to the main artery to operate.  The RT was to prevent the cancer spreading.  I am getting concerned that time is moving on and we have not heard anything.  Also, will there be any further treatment.  Or have they given up on Kenny. Should I contact the nurse or do I sit tight. 

Sheena

Hi Sheena

I’m sorry to hear that the possibility of surgery is not an option, but people have fared well by chemo and radiotherapy, which in many cases manages to control the cancer.  Sometimes, when the tumour is too close to a main artery or a vital organ, the consultant may consider the surgery too dangerous.  You are certainly entitled to a second opinion though, if you are not entirely satisfied with the answers or treatment you’ve been given.

I do agree with you that time is moving on since the RT treatment and naturally you are anxiously waiting for the results.  You should phone your Mac nurse, or the consultant’s secretary, today if possible, who are there for just these reasons and she should be able to chivvy things along or make another appointment with your consultant to discuss this.  Sometimes, you have to just push things a little, but you do need answers as to what is happening.  I’d also suggest phoning the Oesophageal Patients Association who are very supportive, sympathetic and knowledgeable and can answer any questions you may have surrounding this cancer.

http://www.opa.org.uk/

Do give all these people a call to put your mind at rest and to get things moving again.

Love

Crystal xx

Thank you so much for taking the time to reply to my questions.  I have phoned the GI nurse and am waiting for a call back.  Also going to call the oncologist to find out what's holding things up.  I had never heard of the OPA, so I am going to investigate this. 

In August last year the surgeon told us the tumour was close to the aorta and would have to be shrunk in order to operate safely.  The oncologist said he was hopeful of shrinking the tumour and said that operating was "still on the table".  After 4 rounds of chemo the tumour had shrunk but "not enough".  Hence the RT and the chemo.  In january, I asked the oncologist whether operating was still an option.  Hesaid that this would depend on the surgeon but was unlikely.  The treatment was to contain the cancer.  Now, I have not heard that direct from the surgeon.  And we don't know if the tumour has in fact shrunk enough. 

This has really given me something to think about.  I have to be careful that I don't get my hopes up, but Im not giving in without a fight.  Also, have to think about how to talk to Kenny about it, whom I think has given up the possibility of an operation. 

I had a few other replies similar to yours and I am determined to find out more. 

Thanks Crystal (and others).  I'll let you know how I get on. 

Hopefully, a glimour of hope.

Sheena  xxxxxx

Hi Crystal and all reading this,

I have been meaning to post to say Hi for ages but normal life has got in the way! :-)

All is good (touch wood)

My husband seems to have no problems or symptoms at all post op/treatment, he finished chemo/radio December 2010  (Long may it continue!)

He is going to the gym 3 times a week and working normally. He can eat whatever he wants (not as much as he used of course, but very decent amounts)

He looks great and overall all is super. I worry about the dreaded OC reoccurring  but he doesn't seem to worry or think about it at all!!

He's still coughing quite a bit, but its deal-able with, it tends to be worse after food, but its not a problem.

Lots Of love to anyone reading this x

I think of many of you often, but I try to keep away from medical websites etc as often it starts me worrying about the future, instead of enjoying the here and now.

However as my husband is very happy and doing well I have to share some positivity!

Hi Samantha

I am so pleased to hear that your husband isdoing so well.  It's so good to hear some good news and keeps me positive.

Best wishes to you and your husband

Sheena

Hi Sam

It’s so good to hear that your husband is doing so well.  Like most of us that have had this surgery, we tend not to dwell too much on ‘what ifs’, preferring, just like your husband does, to look forward and get on with life.  I know it’s much different for the carers and I would feel the same as you from that perspective.  The main thing is to enjoy what we have right now.  The other day I was just feeling miserable and low for no real reason other than things were not going my way, when I suddenly realised that I had everything and should be smiling and not miserable.  Sometimes, we need a kick in the backside to see clearly where we are going.

I hope your hubby continue doing really well and thanks for coming to bring s this lovely news.

Love and Light

Crystal xx