Really appreciate your sharing of exp... - Oesophageal & Gas...

Oesophageal & Gastric Cancer

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Really appreciate your sharing of experiences

Bazzer2003 profile image
18 Replies

After 6 weeks of swallowing probs I had a chest X-ray..clear and recently had a barium swallow.Something has been and have all the classic symptoms eg Barrets, hiatus hernia, coughing Swallowing probs, coughing small amounts of blood so 90% certain what it is. Encologist appt in the post. Been reading up and read “ most aggressive kind of cancer , 3 to 12 months to live and had decided not to watch any 10 series box sets lol. Your comments of many years survival rates are very heartening..Thank you. *something has been found I assume . Weird thing it is just a standard appt, no mention of biopsy or camera work and not til Feb 6th ..worrying times. Barry

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Bazzer2003
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Mauser1905 profile image
Mauser1905

Calm down and go and for stroll without the internet.

If it was something sinister it would have been in formed urgently and case taken on priority. Assuming and letting mind play yourself up is not going to help with any of the things.

Try to relax. Very helpful.

Bazzer2003 profile image
Bazzer2003 in reply to Mauser1905

Thanks, yeah just taken the dogs out. Just don’t understand the logic of 2 appointments 1 with ENT and other with Oncologist....no fasting for a camera and /or biopsy..strange, no mention further tests.....wait .up to 6th Feb and throat is getting worse.

Click12 profile image
Click12

I am really shocked given your symptoms that you have not had an ultrasound assisted scope ? It was the first thing they did here in Qatar and diagnosis immediate. Then followed days later with CT scan . But remember those mortality figs are averages ....you must hopes to be at the long tail of the curve in terms of survival and who knows what other treatments will emerge in that space of time. I was dignosed stage 4 adenocarcinoma at esophagogadtric junction 4 with metastases to rib and liver and lymph nodes. I am 4 months on having chemo and actually feel as normal as ever right now. I know prognosis is not good but who knows .....i just live each day totally normally ...and pray to be at the far end if the long tail of the statistical curve.

Bazzer2003 profile image
Bazzer2003 in reply to Click12

Thank you for sharing that with me I wish for you all the very best and hope you remain in good health.

Click12 profile image
Click12 in reply to Bazzer2003

Thank you and do push for that scope asap. Sooner the full diagnosis is made the sooner your treatment can start...and less delay the better. Good luck but keep pushing ....the squeeking wheel gets the oil Im afraid ! And make sure they know that you know what the NHS targets are for starting treatment ....unfortunately they kick in from date if diagnosis i think in the NHS...which doesn't account for unacceptable delay in appropriate testing to reach that diagnosis in the first place.

Have you had an endoscopy at all?

Bazzer2003 profile image
Bazzer2003 in reply to

Not recently over a year ago for Barrats.....that’s what puzzles me why 2 interviews with no actual interventions and time ticking away

adela1 profile image
adela1

Do you have Barrett’s and if so what size? Have you been on medication for reflux eg PPIs?

Bazzer2003 profile image
Bazzer2003 in reply to adela1

Been on lanzoprazole and ranitidine

adela1 profile image
adela1 in reply to adela1

Barrett’s?

Bazzer2003 profile image
Bazzer2003 in reply to adela1

I have Barrats but it was mainly confined to the lower area and my problem seems to be in my throat. I would guess whole circumference for about 2 inches

liz_crisp profile image
liz_crisp

Hi Bazzer , last summer I had a hoarse voice that just got hoarser and croakier over a few months, it felt like I had an obstruction when I swallowed, more with liquids than solids, finally I went to see my GP in October who sent me to an ENT doc. Like you I was bemused. He put a camera down at my appt but through my nose to my voice box. Very simple procedure no pain or anaesthetic needed. He said I was very tense more tense than most he sees and needed to relax. He sent me to a speech therapist, he also showed me how to just gently massage under my ears and down my neck. it’s amazing my hoarseness has cleared up and slowly the obstruction seems to be clearing . My doc did put me on a fast track appt due to my History. That took 16 days to sort out but much better than the 14 weeks a normal appt can take here. I think the worry that it could all have been starting again and I was trying to ignore it. Just made it worse. I managed to get into a right state Try to relax, as Mauser says. Good Luck and I have my fingers crossed for you on the 6th

in reply to liz_crisp

Hi Liz Last year I had much the same as you. So was sent for an appointment at the hospital to have a camera put up my nose. I was told everything was ok but very very dry so told to sip water and eat pineapple. The pineapple works but after the oesophagectomy I’m often too full to eat it! Having read your post I’m wondering if this problem is a side effect of the treatment we’ve had. Thank you for your post. You’re replies are always helpful. Suzy

liz_crisp profile image
liz_crisp in reply to

Hi Suzy, it was suggested I tried Pineapple or Papaya juice to aid digestion. I agree it helps. It’s something to do with an enzyme in it that breaks down food. Maybe use pineapple juice instead of water. Might take less room up. Nice to hear it’s not just me who gets a bit worried sometimes. I have totally lost my sense of smell and most of my taste at the moment so hoping it’s my sinuses or something simple. Take care

in reply to liz_crisp

Me too about taste and smell! But sinus’s have always been a problem! So yes I think that has a lot to do with it. Yes it is the enzymes in pineapple I was told it helps with the saliva flow. Luckily I like pineapple and it does help

liz_crisp profile image
liz_crisp in reply to

Hi Suzyeve, I have just been to see a speech therapist re the Hoarse voice and discovered that it can come from a lack of moisture, I have less saliva than I used to definitely. That the tenseness can come from the neck or shoulder being tense which makes sense to me as my back hurts at the end of the day across the top where I have my scar. and I definitely tense up the muscles to stop it hurting as much. also as I don't have much of a tummy to help my breathing like people normally do and its inbetween my lungs so not really an aid , I am straining more to get the sound out. over time it will result in loss of voice and a raspier sound. Old age apparently is part of the problem too, cheek of it Im not 60 yet!

in reply to liz_crisp

That’s very interesting. The consultant advised me to use artificial saliva if needed. I am a trained pilates teacher and it was very useful to use this as part of recovery. Pilates breathing also works very well for me. I think that having to sleep propped up causes a lot of tension in the upper back and neck area. I have to spend time trying to alleviate this. Obviously not being able to lie down to exercise is massively frustrating and I am constantly trying to adapt exercise and movement to achieve what I want from pilates. I am almost four years post surgery and only just getting on top of dumping syndrome. It’s seems to be better now my weight is in a healthy range. I get both types. I had massive post operative complications and my lungs were compressed by fluid for quite a few weeks. It’s good to hear from you the hospital doesn’t always seem aware of some of the issues we face!

liz_crisp profile image
liz_crisp in reply to

I gave up on Pilates as it is mostly lying down. I find Swiming and I do exercise In water I can float not totally flat or do exercise standing up that most do lying down as the water supports me. I am now 10 years on and still get dumping sometimes. I am a lot better at recognising it now so it can be over in 20 mins. I bought an electric bed it has made a big difference xx

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