My 53 y/o dad Re diagnosed

FormerMember over 4 years ago

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Hi all

hope today is a good day for you all in this battle.

I wanted to share my story and also see if there was anyone going through the same situation that me and my family are going through at the minute.

my dad was diagnosed with esophageal cancer in July of 2018 where he was having difficulty swallowing. The pet scan revealed T3n0m0 which was a relief that it hadn’t spread. He had regular chemo which was FLOT that had shrunk the tumor and got rid of another satellite tumor which was growing in the esophagus. He then had surgery to remove the 1 visible tumor flowed by more flot and radio thereapy.
his scans have been clear for 1 and a half years but he recently had difficulty swallowing again.

he was booked in for a endoscopy where they found no visible tumors but took biopsy’s as a precaution.
the biopsy came back with cancer a positive and a pet scan was done to see where it was and if it had spread.
it revealed there was a tumor growing out of his esophagus back towards the spine where it is very near touching the spine but it’s still localized. They have told him no treatment is available and he only has a year to live which we are struggling with as it hasn’t spread anywhere ( he is 53, extremely fit and hasn’t drunk or smoked in 14 years) he has the option of having chemo to try and shrink the tumor but it’s inoperable because of the previous op that was done and they would have to remove his voice box which means no quality of life. Radiotherapy won’t work as it’s been done before and also he came back negative for her2 for immunotherapy so that can’t be done even though her2 changes as the cancer progresses. We are out of options really but I was just wondering if anyone has any other suggestions or story’s similar to my dads to help keep a positive outlook.

I find it really hard that he has been told he is dying and there’s nothing they can do even though it’s not spread at all.

sorry for the long message and again I hope you are all well today.

FormerMember over 4 years ago

Hello Jacob,

I am so so sorry to hear this.

This is very much like my mother's story. Cleared after 1 x-ray, & 1 endoscopic biopsy collection. Tumour had gone, totally. So we are elated. But to be sure she had a CT which showed the cancer had found its way into the lung nodules. When the oncologist met & told us it was the end of the world. You think it's gone, you feel so relieved, then you get the news that it has returned. And you get a rough lifespan which just seems far too short. And nothing can be done!!

Our close friend lost her husband to brain cancer only last year.

She gave us what has turned out to be the best recommendation we have had.

If you haven't already done so, get your dad's GP to refer you to your local hospice. Please.

The support & care network is 24 hours a day for every day, including weekends. You'll have an assigned highly qualified nurse for your dad & for you. You get their private phone number & a 24 hour weekend hotline as well.

I always thought the word "Hospice" meant the end, a place to go when there is no quality of life & just suffering. A place to pass away peacefully.

The hospice system was overhauled a long time ago, this isn't an end of life nursing home. This is a place where they can give your dad a bed if he is really poorly, so they can get him better & send him home to you. Your case nurse will visit regularly, find out how things are, amend any med's that aren't doing their job of painkilling, or any other med's your dad takes. And because this is their area of expertise, they have a plethora of great ideas to help your dad.

So don't even think that a hospice is a final destination. They want your dad to feel as good as possible, they want you to have their full support too.

But above all, they feel like a family member, they are such nice people, never forcing you, just advising you. They give you plenty of face time at home, you get their full attention. If you are worried sick about anything, just give them a call. If your nurse is off work they will send another nurse who works closely with your assigned nurse.

It will change how you feel, how your dad copes, & as I said, they feel like family. I hope this helps in a small way, it certainly helps us.

Again, my heart goes out to both of you, & you are never alone on this forum.

My best wishes,

Graeme.

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