35year old, 4cm tumour found during an endoscopy

Hi

I'm so sorry you find yourself on this journey, especially with your partner having cancer too. I'm sure your head is spinning.  All you can do is take this one step at a time.  There is still a bit more to do for them to stage it. If you have a proactive doctor I'd suggest getting the other bits of the staging done as soon as you can - PET scan, laproscopy and the bike test. Please take a note book with you. If you can take a friend or family member with you for support and to ask questions and to remember things. I was surprised by how much I didn't hear.

Speak to your GI team re their recommendations around oncologist and surgeon. From last year they started doing fully roboticised surgeries so you want someone with experience if surgery is part of your treatment plan. Recovery is much quicker with robotics. 

I'm not sure how far you are from Guildford. There is the Fountain Centre which provides support for cancer sufferers and their families. Including counselling and some lovely other treatments.  There are also the Maggies Centres among others. They can also be supportive for your partner.

Please be careful around things like intermittent fasting.  Most sufferers of oesophageal cancer end up loosing a lot of weight. Exercise is starting to show some promise around cancer and the immune system. It's important though to not over stress the body as that may have the opposite effect. Walking is great. Very soon you'll have a team that will include a dietician.  I was treated at the Roysl Surrey and the physiotherapists ran a pre-hab programme which is an exercise programme prior to surgery. See if your hospital runs something similar.  Keeping yourself as healthy and fit as possible is so important for the road ahead.  

Stay off Google around survival rates. I think the stats are likely soon to be updated. Plus they say very little about individual journeys. I've met people online who had oesophagectomies 20 years ago when the survival rates were around 5%.

Pragmatically, speak to MacMillan and/or Citizens advice bureau re financial assistance, etc. If you want to PM me around some of this, then please do.

Cancer is a %£#@!  I'm so sorry you're on this journey with us. We are here for you!

Take care, 

Sx

Thank you for your kind and helpful reply, Suzie.

I have to admit, I’ve spent a bit too long diving into everything I can find on oesophageal cancer. Being on the spectrum, I take a lot of comfort in gathering all the facts and data I can; it helps me go into the doctor’s appointments as informed as possible - or at the very least, understanding what they’re telling me. Also, with two toddlers at home, no family nearby (my mum is under palliative care, my dad is abroad, and my partner’s parents live halfway around the globe), and having only recently moved out of central London, we’re still building a support network locally. That means I often have to go alone to appointments, so feeling prepared and informed has become essential for me - thus, I cannot avoid the stats or the feeling or dread whenever I see them.

On the fasting point, I completely understand your thoughts. Thankfully, I can still swallow (although it’s a bit limited), so I’m focusing on high-protein and high-fat meals during the six-hour eating window. I’m also using Huel Black as a supplement to the food element, adding MCT oil and other ingredients to boost calories too, and managing around 2500-3000 calories daily, which has helped me regain some of the weight I’ve lost to date. I’ve also cut out sugar and carbs to help lower blood glucose and, hopefully, limit the tumour’s fuel supply somewhat. My aim is to follow a vegetarian-keto-inspired approach (though not strictly due to the Huel) and combine it with an 18:6 intermittent fasting schedule for the next fortnight at least. I’m hoping this might encourage autophagy and slow the tumour’s growth a little.

With doctors repeatedly reminding me of my cancer’s likely aggressiveness, but still weeks between appointments, taking charge of my diet feels like the one area I can control. For now, it helps to channel my frustrations constructively rather than lashing out every time there’s a delay - especially as my CT scan and biopsy results went missing for a few days, and the MDT team wouldn’t discuss my case without them.

Anyway, I’m ranting again, so will stop here and instead say thank you again, Suzie. Your message really brought me comfort, and I’m grateful.

Hi

I truly understand. Rant all you need to. I also went into full research mode. The stats drove me crazy. Like i said they can't tell you about your individual journey. Being anxious makes it worse especially if you're on the spectrum (I come from a neuro- spicey family myself). Can your team tell you a time line for the various tests?

You really are in a tough spot with very little support network.  Please see about contacting the various charities around cancer.  The one thing about cancer is that people tend to be very kind. And to be honest I was extremely grateful for that kindness. I did some online exercise classes with a charity called something like 'look good, feel better'.

Are your little ones in nursery/preschool?

The evidence is gathering around exercise boosting the immune system. Walking is also great for mental health. From your first post it sounds as though the tumour is at the junction with the stomach so it may well be operable. My profile will give you information about my journey - it's one of the standard treatment protocols for tumours in that area that haven't metastasised to other organs. Another is a combination of chemo- surgery- chemoradiation. Immunotherapy seems to be used when the other treatment options can't be used fir whatever reason. Also there are tests to check if one is a candidate for Immunotherapy. 

Take care 

Sx

First of all I am very sorry to hear of your diagnosis especially given your young age and family circumstances. I sincerely wish you a favourable outcome. 

I am replying to you because I am interested to know if you have asked your Dietician about modifying your diet with a view to inhibiting tumour growth? 

I have been advised to eat as much as I can including sugary foods and carbohydrates. I queried this with my Dietician as I know tumour growth utilises glucose. 

Her response was that studies have shown that reducing sugar intake does not inhibit tumour growth as ultimately all foodstuffs are converted into the energy the cancer needs to survive.

i am aware Science is not black and white. And there may well be data out there that can be cited that demonstrate restricting sugar slows cancer growth. What are you basing your modified diet on?

Hi Rosiee,

I haven’t been assigned a dietician yet, so I’m relying on my own research. As a compliance consultant, I’m used to working with large datasets and studies, so I’ve turned that focus onto “Dave” (my tumour) and found some useful papers that might be of interest:

1. Article 1

2. Article 2

3. Article 3

in the past fortnight, I’ve read somewhere in the region of 100 such papers, covering all sides of the argument and also looking at effects on everything from the efficacy of chemo and immunotherapy to post surgery recovery etc, and come up with this as my best idea on what will work for me and my life.

That said, I must emphasise that this is just the path I’ve chosen, and I’d definitely recommend discussing any modified or new approach with your medical team to see what’s best for you.

Beyond diet, I’m also incorporating cold immersion (freezing cold showers) and intermittent fasting to encourage autophagy (the body’s natural process of clearing out damaged cells). I’m walking more and doing some weight training, and even buying lots of snake plants to up the oxygen level in our bedroom. The exercise and fasting is also supported by the fact I’m currently able to maintain my weight on around 2500-3000 calories a day, which I fit into the 6h eating window. Whether it actually impacts the tumour is yet to be seen, but for now, it’s something I can control and it’s certainly helping me feel better.

Hi Kehilan

Firstly let me say how terrible it is to hear the lengthy delays in your prognosis. My experience was somewhat different and I was sent for an endoscopy within a week of reporting a problem to my GP. I think age is a big factor (I'm 60) and GP's seem to believe ours is a cancer for older people.

Before diagnosis I was doing the same intermittent fasting as you (18/6) alongside regular HiiT sessions and a very low carb diet. My advice would be to ditch the fasting for the time being and instead increase your protein/fat intake. By all means keep your sugar intake low. I found out that chemotherapy can make you lose quite a bit of weight so putting some on before treatment is a good idea. This is also true post -surgery but for different reasons. Definitely keep as fit as possible to aid you through any treatment you might have (including the operation) which I've found helped me enormously. 

Googling isn't very helpful as most of the information is either wrong, incomplete or out of date. Most people are diagnosed at a late stage and are generally older too so that skews the data. I would suggest that if your CT and PET scan results are good and the cancer is either contained or even advanced locally (lymph nodes/upper stomach) that you can beat this awful disease. You have youth on your side which is invaluable. If you have any questions please ask as I've found out that there's always someone on this wonderful forum who will know the answer!

Good  luck

Anthony 

Not sure why the links didn’t post:

1 - https://pmc.ncbi.nlm.nih.gov/articles/PMC9364696/ - this one is where my journey of looking at these things started and why I’m now feet deep down the rabbit hole.

2 - https://link.springer.com/article/10.1007/s10552-008-9242-6

3 -  https://www.sciencedirect.com/science/article/abs/pii/S1046202316303127

Thank you Anthony, that’s really comforting to hear!

On the protein/fat, I completely agree - that’s exactly what I’m doing. Since moving diet I’ve also managed to put on 2kg in little over a week, and that’s without carbs and sugar, so I’m hopeful I can manage to do both the fasting and the weight gain - best of both worlds.

i’m sure this will change over the next few weeks, as I learn more about my situation and prognosis, but for the min it’s helping me to stay focused and positive,

Happy to be of assistance. I completely empathise about wanting to keep doing the fasting as I know it's benefits are wide ranging. By all means carry on with it as long as you remember to utilise those six hours with as much fat and protein as you can possibly have! During chemo it most likely won't be an option and certainly NOT after the operation as your new stomach won't be able to cope with cramming in all your nutrients in such a small window. In fact it will be the absolute opposite as you'll be encouraged to eat six or so tapas size meals throughout the day 

Best Wishes

Anthony 

It sounds like you're doing all you can. I think it would be fair to warn you to keep in mind that the treatment protocols tend to be quite rigid with dome but not a lot of room gor manouvreability. By all means ask questions  but ultimately you'll have to decide if trying for something bespoke is worth holding up your treatment for.  It takes many years for the weight of research evidence to gather enough for it to affect treatment options. I haven't looked at the NICE guidelines on the treatment for OC. I stopped short of that because I was starting to drive myself a little crazy with research.

I just want to highlight what Bob said the current research tends to have data sets eith a much older population.  For a variety of fortunate circumstances I managed to avoid falling into the trap of not being seeing urgently because OC is still thought to be men in their 70s vs me - female in my 40s with slight symptoms. 

Take care