Cancer Research UK main site

Missed chance for early diagnosis.

Cazann
Offline

My husband was diagnosed with Ca oesophagus last week. He had been having regular gastroscopies every three years as he had Barrats Oesophagus (pre cancerous). He should have been followed up after his 'scope in Sept 15, it was posponed twice and now T3 stage. We assumed everything was ok as we hadn't heard anything - clearly not! Now, just over a week since diagnosis and I feel abandoned, he had a scan last weekend and has one next Tues before treatment can be decided upon. We have been left alone without any contact from health care professionals. I thought we would  have, at least, one contact from Macmillan to see how we were coping - NOTHING.

Our first grandchild is due any day now too, our eager anticipation has been overshadowed by this terrible disease. 

  • Offline

    Hi Cazann,

    Welcome to the forum, though I'm sorry to read your reasons for joining us.

    I was diagnosed with OC in October 2013, nothing seemed to happen for two or three weeks, then suddenly everything came together as the results of scans and biopsies became available. There's not much anyone can do until the course of treatment has been discussed and options presented to your husband.

    You should have been given the name of a nurse at the hospital who would be your key contact. If that hasn't happened, either his oncologist or the MacMillan nurse should be able to put you in touch. She/he will be able to advise what the next steps to expect should be and chase things up if needed.

    The waiting around between diagnosis and treatment was about the most frustrating experience of my life, I can only empathise with what you're both going through.

    Good luck

    Dave

     

     

  • Offline in reply to davek

    Thanks Dave,

    you are correct in saying it's the waiting between tests and treatment that is so frustrating. I have never known such long days and weeks, all the time I am thinking 'is it getting much bigger as we wait?'

  • Offline in reply to Cazann

    Cazann I can't offer any advice but just know that we too are in the same boat in terms of waiting (father diagnosed recently with terminal cancer). We've been really lucky that the Head Cancer Nurse at our hospital has been in contact and was absolutely amazing - the surgeon not so much unfortunately . The waiting is killing us! I find myself thinking at night "there goes another day wasted" and worry that with every passing day things are getting worse and worse. It's an extremely overwhelming experience and I wish you all the best with your husbands journey x

  • Offline in reply to alexmc

    Thanks alexmc, you have summed up my feelings exactly! I too feel that each day feels wasted in waiting. Today my husband had his EUS, I thought I would feel better after this, as though we were making progress, and yes, I know it is progress but guess what? We are back to waiting again until the multi disciplinary meeting takes place.

    I am finding the constant waiting exhausting, (added to this, we are expecting our first grandchild, who was due last week). And yet, I seem to be able to do less and less. Housework seems more difficult, going shopping is more of a task. The only thing that I am putting any energy into is making high calorie, high protein foods for my husband, along with his smoothies.

    I really hope that things speed up for all of our loved ones. Best wishes for your father.

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.