Stage Iv esophogeal cancer / terminal

[smithy100]

Has anyone got any positive outcomes from stage 4 esopogeal cancer with liver mets ? My partner who is 52 has just started palliative chemo for this and they have told him it’s not curable but hopefully treatable, he’s very positive in himself and feels clinically well, he has had a stent fitted and is eating okay with solid foods. The oncologist has told him they will do 3 cycles of chemo then CT scan to see if tumour has shrunk, they have not offered any form of radiotherapy and have said surgery isn’t a option, would this still be the case if the palliative chemo does shrink the tumour, the prognosis they’ve given him is either months if chemo doesn’t work or 12 months if it does, can anyone tell me if they have had any positive outcomes with this diagnosis for longer than 12 months please or surgery etc ?? Claire

[Mauser1905]

Hi Claire,

very sorry to know of your partner's diagnosis.

I cant answer to your first question as I did not go to 4th stage myself. Will leave that to anybody else who has experienced.

Its not only oncologist but the multi disciplinary team of doctors, surgeons, specialists (MDT) et al come to conclusion of agreed best course of action for the patient, which is then discussed with the patient and their family.

In any case you are open to get second opinion from a different nhs board should you wish to pursue this option, mind you in current pandemic situation this means time delays, even if this was done on urgent basis.

In general the Oesophageal Adenocarcinoma (occuring at the lower GE junction due to GERD) is highly aggressive and top three most fatal form of cancer.

Surgery is possibly an option for very early stage of cancer where it is in a very very local area of the oesophagus without any metastasis to other organs. This is to get an successful outcome in terms of percentage post surgery. pretty much many of the times surgeon's find more cases where the cancer had spread elsewhere but not seen on the scans, there are exceptions for everything. Surgical solution is a extreme abuse on the body of the patient undergoing and the mortality rate is there to survive the surgery. Post surgery mortality rate also exists, if not other underlying or other form of cancer occurs.

Having said that always remember the doctors state worst case scenario, for obvious reasons. There are cases where the patient recovers significantly in relation to the initial advisory.

Being positive about the whole life is very admirable and definitely be helpful for him.

OPA has "Patient Buddy" where you can hook up with survivors or patient's families and speak to them one to one. opa.org.uk

[Janashlin]

Very sorry to hear your husbands diagnosis but it sounds like he has a great mindset.

Mindset is half the battle, I cannot give you medical advice but I would say make sure you ask lots of questions and ask for second opinions if you feel the need.

Good doctors do not mind patients getting second opinions.

I had my treatment and surgery all set up with a group of doctors and I asked for a second opinion which changed the path I took.

You and your hubby are the real advocates for your husbands care.

All the best and one day at a time.

[Danstable]

Hi Smithy, another Smithy here.

I was diagnosed as stage 3b, a gnatts whisker from stage 4 apparently. I went in for surgery and whilst they were routing around in the apparently the surgeon found scarring on one of my lungs which suggest the cancer had spread but gone unnoticed (thankfully), and then been beaten back by the pre-surgery chemo.

My point is, I guess it's possible for the non primary cancer to not only shrink but to disappear after chemo.

Best thing patient can do is to stay positive, get out in the fresh air and countryside for walks every day, eat healthily, and if they are in to any of the alternative therapy stuff (which I was), just do it. It all helps to build positivity.....and a positive mental attitude can get you a long way.

Best of luck.

[kiddy]

Hi there , cant comment on this staging as I had early stage. Positivity is the best thing. Never give up. I have known people with other cancers living a good standard of life and the tumours shrinking disappearing.

Your team will give him the best treatment possible.

Big Hugs

Debbie

[Click12]

Hi I am from UK but fortunately living in Qatar with exceptional free health service.

I was diagnosed stage IV OG/ Gadtic junction cancer a year ago this month. Following problems swallowing, only for a couple of weeks I had an endoscope immediately , privatelt - results next day, called in to see consultant same morning and sent to see surgeon at public hospital with the reports and images in hand within an hour. As luck had it the surgeon was a uk surgeon here on one year sabbatical and specialust in esophageal/ gastric surgery having completed a high no. Of cases with excellent results and low mortality - it is very important to check this experience out for each surgein. . He has also set up in the UK a rapid recovery programme for post this type of surgery. After seeing him i was booked for esophageal ultrasound scope, CT Scan, PET CT scan, MRI, full body ultrasound, heart echo...all done within two weeks but the outcome was not looking good with mets in lymph nodes (7 ), liver and rib. I was advised not suitable for surgery. I started chemo following the ToGA Trial regime which went exceptionally well...so well the surgeon saw me again and having already been involved in the MDT meeting about my case he spoke with Imperial College London who reviewed my results and recommended treating me aggressively as a patient younger than my 61 years if I agreed that it would be outside standard protocol. I agreed and 28 very intensive sessions of radiotherapy to the OG region later- which after the chemo ...which I sailed through.... was quite horrific after week 22, Plus 5 further sessions immediately following to the rib . Chemo continued throughout the RT in tablet form Xeloda .I was wrecked by the end...could not eat a single thing and lost 3 stone in 6 weeks..I had been pre warned of this. I could not put weight on ..reacted badly to a high nutrition drink prescribed got a severe mouth and throat infection and was admitted as an emergency case with disease related malnutrition..by this point I could no longer stand up I was so weak. I was in my apt. All alone shielding due to corona and as my husband works in construction and qatar has the highest covid infection rate in the world running mainly through the construction labour camp workers. My husband came morning and evening to make me tiny breakfasts and dinners staying 4m away from me after I came out if hospital. I had amazing inpatient treatment though and was home in 10 days , starting to eat again and recovered all my weight in 10 weeks ! The results of it all have been excellent ...liver no longer considered a problem ( it was always a bit questionable as I have a lot of scarring on my liver anyway...but the hot spot no longer show ed on the last MRI . Only 1 lymph node showed up and the rib appeared clear. The main tumour had shrunk very very significantly. Then a further PET CT scan showed a very small met on my sternum. Damn ! ...Hence I am just midway through what was going to be 12 weeks of Chemo (Herceptin with Pacitaxol every3 weeks and Paclitaxol every week. ) just been advised they are reducing to 9 weeks and PET CT again - If results are good I will again be considered for surgery. I am on weekly dosing and slightly reduced dose as unfortunately I have also suffered peripheral neuropathy to hands and feet. It is much improved with Vit. B12 and Pregablin ( which for me has been more successful than the Neurontin I was originally prescribed).

I feel totally well and normal one year on and full of hope. My consultant is very very positive..believes in Stage IV survivors (though we both know admittedly rare. ) Seems to think I could defy the odds and be one of them .The surgeon is also still very interested in my case and fighting my corner and we shall see. I do absolutely everything. I have always been very spiritual...rather than religious so I say my affirmations 50 times every morning and evening...thanking the Universe for giving me the strength and determined attitude to heal myself ....second to the thanks to my team for fighting my corner so very hard and trying absolutely everything .I sleep with crystals under my pillow and take my prayer beads everwhere with me ...a friend had them especially commissioned to protect and heal me . I no longer take any alcohol. I have never smoked. I try to eat quite healthily most of the time but weight regain asap has been put first and foremost .

Truly apart from the blip following RT and my nutrition problem i have felt totally normal throughout and life with the exception of covid and needing to shield , has been normal . I am literally a year on and refuse to think I am anywhere near dead ! I never allow my brain to think there is anything wrong with me and my daily affirmations give thanks for being cancer free ....i believe in telling yourself and your body you will be fine rather than giving it a second to think it is not all fine. It has always been my way. I am an ex Pharmaceutical Rep . So very knowledgeable about pharma and trials etc. Deep down I know the facts but I also know people do beat the odds and I do hope to be at the far far thin end of the tail of the averages curve. My consultant is Egyptian, cancer trained in America, doesnt ever talk averages with me we talk survival ...and until faced with absolute bleak results thats how its staying for now !

So I do hope this has given you hope. Get a further opinion.....

[smithy100 in reply to Click12]

Thank you for that, I also believe anything is possible, my partners diagnosis is T4N3M1 it also states it’s a solitary hepatic metatisis which I’m hoping is a positive, my understanding of this would mean that it’s one mets in the liver instead of multiples, but no one has told us anything!!! He is currently having cisplatin IV every 3 weeks and taking capactibine 500mg Bd and 150mg Bd at home for 21 days. I’m hoping that when he has a CT scan the tumour may have shrunk, but when I asked the oncologist if this was the case would surgery be an option I was told flat outright No, I’m finding this hard to understand and also there has been no suggestion of any radiotherapy, like I said my partner feels well in himself and all of his bloods have been within range and normal even up to the point of his diagnosis including his Liver function test. Does anyone know what they mean by solitairary liver metatisis does this mean only one secondary tumour in the liver instead of multiple, when I have asked the cancer nurse how much is in his liver the reply is not a lot !! Any more information regarding any of this would be appreciated,.

[Click12 in reply to smithy100]

Hi - Yes solitary is one. Look up the ToGa Trial on the internet. I started with Fluorouracil, Herceptin and Cisplatin. I was Hers 2 positive. I think my overall situation was worse at outset than your partners but the liver is not good news , However my liver had one met to start with and then on the next scan it was inconclusive and at the 3rd they decided it was not a problem. This could be why they are prepared to give me a chance of surgery (if the sternum met has responded to this latest bout of chem o plus radiotherapy to the sternum 5 sessions. I think I forget to mention that first time around. But don't lose hope. Maybe your partners liver met will be like mine. Do seek a second opinion - Royal Marsden ?

Regards

[Bunny69]

Hi Claire,

The thing to grasp hold of is we are all different. What works for one may not work for another. You and your partner are trying to find a positive outcome and that is the best way I think of trying to get through. When I was diagnosed it was thought no operation due to suspected mets to left lung. I was then stage 3 - 4 . I then eventually had the operation and shortly after was told stage 4 with liver mets. We were told incurable but we needed to stay positive. I do not know any similar survivors personally but there are some out there who are still posting online years after being given same prognosis. They aren't the people who claim to have found a cure just normal people who were told same as us but still survive. I agree with most on here that staying positive helps improve outcomes. My condition has worsened since treatment stopped due to covid. But I am back on chemo and still hoping I can be around a while longer yet. The thing with cancer treatment is it isn't targeted on a patient to patient basis, it is more generic in terms of first line second line treatments etc. So sometimes a response is seen that may not be expected. I was on EOX but it wasn't working so switched to irinotecan which had a better effect. Wishing you the best of luck and hoping your partner responds well as we are very similar stage and age.

Stay safe

Bunny

[Wojtek123]

Hello,

I was diagnosed in May of "17" with metastasis to the liver. Went into chemo for 8 sessions. Chemo was FOLFOX with Herceptin thrown in. My tumor was HER Positive +3.

After 4 sessions the tumor essentially reduced to zero with no sign of the liver lesion. I was given 4 more treatments and then surgery . They took out 2/3 of the esophagus and top third of stomach, then pulled up the rest and joined the two ends. I recovered over the next two years with clear scans until Jan of this year, when several small areas, (two of them being lymph nodes) in the lungs began to signs of activity. had a biopsy of the largest and found the cancer had started up. I was then given 8 more treatments of FOLFOX and Herceptin with the tumor sites again disappearing (at least on a PET scan) I am now on a maintenance schedule of Herceptin and Flurouracil every 3 weeks. Hopefully my next scan in December will be also clean. It seems that here in the US if there is a good response to the chemo and the mets are not extensively spread that surgery is considered.

Do ask if the tumor is HER Positive as this will indicate the use if Herceptin which is an immuno drug that can work really well.

Stay strong , never give up

Regards