Cancer in Oesophagus

[SpoonFullofSalt]

A close friend’s husband has just been diagnosed. It’s all new and raw, so far it looks like he’ll have chemotherapy followed by surgery but they’ve told the outlook isn’t good.
Googling has not been helpful. If anyone feels happy to share their experiences it would be useful. She knows I’ve posted on here.

This was what finally took my Mum. She died 30 years ago, but I really don't think there has been a lot of progress since. She did have other health issues, having had heart valve surgery and blood thinning issues. It always seemed so unfair that having coped with all her heart problems, it was something totally different that finally carried her off. But the heart treatment she had meant that any chemotherapy or operative procedures which were possible, the success of such treatment was compromised. To tell the truth I think she was tired of life and was not interested in a 'fight'. Sorry to sound so negative, but if I were in this sort of position I would want to know the truth, with no sugar coating. But there was little pain, per se. Although she did have a syringe driver for about the final 10 days. It was distressing to be peckish but not able to eat/swallow. Lightly poached eggs were a 'go to'. The Uan Rennie 'hospice at home' were incredible.
Not trying to be bossy, but I would urge your friend to look into benefit entitlement. I think there are special rules for attendance allowance when a terminal illness has been diagnosed.
So sorry to learn of your news. She'll need a good friend.

That should have said 'Ian Rennie hospice at home'.

Thank you for sharing @Theoldwrinkley . It’s been such a shock to them, he’s early sixties and plays golf, rides his bike miles and was planning his retirement. It really does seem unfair. He’d had indigestion for years then suddenly started losing weight, I guess he didn’t see his GP early enough, but didn’t really have a reason to.
My friend somehow thinks that there might be a miracle cure in the US, I guess it’s clutching at straws.
So sorry about your mum, it’s good to hear she wasn’t in pain.

A close family member had chemotherapy followed by surgery. I won’t sugar-coat it; the operation was brutal. But if it’s the same one, we were told that they’d only do the operation if there was a reasonable chance of success - alternative would have been for chemo to try and get it into remission.

I don't have any personal experience but I do know there are some new immunotherapies coming through in this area - might be worth your friend asking his consultant if his specific type of oesophageal cancer would be suitable for treatment with one of these, or if he's eligible for any trials.

The outlook is pretty grim I'm afraid. I would try and encourage your friend to identify what's important to them and do those things rather than trying to chase cures overseas. Time is precious. I lost a colleague to this a couple of years ago. It was about 8 months survival after diagnosis. He was younger than your friend and very fit. It was the cruellest thing. And the father of a school friend of my daughter died more than 10 years ago from the same. He had about two years after diagnosis I think.

He has nothing to lose by trying alternative medicine along with conventional medicine. Please look up natural cancer cures and make sure he eats extremely well, lots of good veg and roots. He needs to build back natural immunity and unfortunately chemotherapy will destroy his immune system. But with a good build up of nutrition he could beat the odds.
Vitamin D and C and zinc...Also look up foods that contain iodine, quercetin, magnesium, selenium. Hope all goes as well as can be.

Im really sorry to hear about your friend's diagnosis, what a terrible shock it must have been. I don't know if my story will be of any help but my mum had oesophagus cancer in her late 50s, it was in the oesophagus junction with stomach. They did surgery and managed to remove it and so far she is doing better but they had to remove quite a bit of the oesophagus so she has problems around digestion now. The treatment was very hard on her. But so far the cancer hasn't come back and it's been 4 years now since the end of her treatment.

Before diagnosis she had been having problems with swallowing and digesting and had already had breast cancer so they did manage to catch it quite early I believe which affected the outcome.

I'm so sorry about your friend's husband. My DS's dad has just died from this in the past week so quite raw for me but I can offer a few pointers perhaps from a place of grief but also insight:

It did feel unreal in the beginning and I desperately wished we had done more things then while we could - travel, eating lots and lots of delicious food he loved, adventures and memories and recording his voice and generally just making videos and safeguarding memories for my son.

What happened for DS's dad is that although it was starting to get painful to eat before treatment started and he was a bit scared by that, the treatment itself wrecked him (to be fair he did have both chemo and radiation at once, no surgery) and it took him ages and ages to get over the effects of the treatment. He had about 4-6 weeks of feeling normal over christmas, and then it returned and he went downhill so fast it was heartbreaking. There was no time for beach trips then, he felt too tired. He was in pain and taking pain meds which made him woolly headed and then the pain weirdly went away a week before his death, then he started coughing up blood, had a few major haemorrhages and sadly, a final catastrophic bleed which killed him. No-one thought he'd die so fast, he felt he had months or at the very least weeks left. It was and is still so upsetting.

I don't want to be the voice of doom but - tell your friend to grab those precious memories NOW. Say all the things they want to say to each other - don't leave anything unsaid. Reminisce together. Thank each other for the time they shared. Get his affairs in order, make a will and pre-pay a funeral and then hope for the best, he may be one of the lucky ones. But if it doesn't work out, they will have cherished each moment while he was still relatively well and they will have fewer regrets if he does eventually pass away. I can't stress enough how much I wish I'd known how short time was. We had no idea really and it was a terrible shock.

He was only 62. I was telling him to go to the doctors from Jan or Feb last year, and I think it was already pretty established at that point. He finally went to his GP in March, started treatment in July 2021 and has just died this May, 2022. It's a hard thing to go through, your friend will need all the support around her she can muster - and she's lucky to have you as a friend.

Hi OP. Sadly there prognosis is usually poor, but not always. I had a colleague have an oseophagectomy years ago for ca, and she made a good recovery. I lost touch with her but she was still going strong several years later.

Life is very cruel.

Treatment will depend on where he lives. If in UK, and has tumour in the lower part of the oesophagus then the gold standard of treatment will be 4 cycles of FLOT chemo followed by surgery and then a further 4 cycles of FLOT. Each cycle of chemo is given fortnightly, and he will need a line in his arm (PICC Line) for this to be administered through. Usually have a break of around 4-6 weeks after first lot of 4 to recover and prepare for surgery.
Surgery is tough, and will be performed at a regional centre. Minimal length of stay in hospital will be a week ( most in 10-14 days) if no complications. Ususally have a recovery of around 4-6 weeks before second lot of chemo starts.
They should have access to a cancer nurse specialist and dietitians as part of the team caring for him. Some centres are now getting patients started on prehab programmes to get them as fit and as mentally prepared as possible ahead of their operation.
Macmillan, Cancer research UK, and the Oesophageal Patient's association are all useful, reliable sources of information. Some hosptials will have a Maggie's centre which can provide support for anyone affected by cancer, and most centres will run some sort of support group for patients and their carers.

I lost my dad to this nearly 5 year ago. He lasted just short of 2 year from being diagnosed. Radiotherapy and chemotherapy helped at first but his quality of life wasn't good.

Sorry to hear of your sad news. It's a terrible illness.

Meant to add my dad was 67

This is so unhelpful. False hope is cruel.

I am an oncology nurse and I wish so much that patients were told more about the reality of living with poor prognosis cancers. Even nowadays, doctors are reticent to be really honest for fear that their patient will ‘give up’. So much time and heartache is spent in hospitals pursuing futile treatment. After the patient has died it is common for families to say that they wished they had just taken their loved one home and enjoyed the little bit of quality of life they had together.

My dad was diagnosed with this aged 65, he was stage 2 1/2, had his esophagus removed and had chemo and radiation. He just had an all clear from the cancer doc, and is to follow up with 6 monthly scans

A big heartfelt thank you for all the messages. I’m going to let my friend get her head round it and then show her.
@ZeppelinTits your post is heartbreaking, thanks for sharing

My brother survived around 2 years after being diagnosed at stage 4. He was able to enjoy an early retirement for all but the last 4 months. I was told it’s not hereditary.

The prognosis is usually not great and eventually there’s likely to be spread or multiple organ failure. Very sorry to have to tell you this.

Nothing I said had false hope ! You are also contradicting yourself a bit- wishing you didn’t have to put patients through it? Is how I read it.

Late-DH was diagnosed Apr/May-2016.
Large tumour & mets in the lungs.
He had to have a stent fitted as he was unable to swallow.
The chemo, which was very effective, but regrowth started as soon as the chemo finished.
Another stent, radiotherapy in Nov 2016, and onto end of life care in Feb 2017. He died in Mar 2017.

He was told from the beginning that surgery was very unlikely, although after the chemo his consultant was more positive until the regrowth started.

Oh, he was 58 when he died.

My dads friend had it, he was a very fit man in his early 50's. It killed him within a year unfortunately and my god that man put everything he had into fighting it. He only lasted as long as he did due to being such a fit guy.

It's a awful thing

My dad died within 6 months of diagnosis. After the chemo, he regretted having opted for it as his last months were poor quality. I'm so sorry for your friends. It's usually diagnosed late because of mild or non-specific symptoms but the prognosis is usually poor.

My dad died of this at 65. Like a PP he had heartburn and a little problem swallowing at times. He refused to go to the doctor despite us trying so hard. He was taken to hospital by ambulance when he got so ill he agreed to let us call one. He died 5 days later.

I know this is not relevant to your query but it seems a cruel end for many. My dad was a surgeon and spent 35 years saving other people's lives (and drinking too many spirits as a result) but just as he retired no one could save his.

Elderly relative had the radiotherapy and chemo but not the surgery. 5 years on he's fit and healthy. But has been told that most likely it will come back or cancer will pop up somewhere else at some point.

But in the meantime, I repeat - he is fit and healthy. The treatment was HARSH and probably took another 6 months after to feel better. But he lives a full and active life, travels (Covid permitting), has friends etc. Main difference is diet has changed slightly.

It is a terrible disease and prognosis can be bad but it doesn't mean he's on his last legs.