I'm Karen and I'm 54.
I had my endoscopy on Sunday morning and the doctor called me and my husband into a side room. He told me I have oesophogeal cancer but that he couldn't see it in my stomach, and the gap was wide enough for the tube to go down, but he isn't sure if it has spread. I had my CT scan the following afternoon (on Monday this week). The nurse with him said that I now have to start getting fit ready for surgery. She gave me a Macmillan card and said someone would ring me the next day. The nurse did ring me but just to arrange for me to have my iron and ferritins tested at the hospital when I went for the CT scan. I have been told that hopefully the biopsy results and CR results will be back by Tuesday when the MDT team meets, but I haven't been told anything else and I haven't got a clue what happens from here on in.
I know it must be different from person to person, and hospital to hospital, but I wondered if anyone could give me a rough idea of how long it takes before you start treatment. Do you have to have more scans or do you start chemo quite quickly?
Any guidance would be much appreciated. I keep trying to stay calm and upbeat for my family, but I feel like I'm on a cliff edge.
Welcome to the group and forum.
Sorry to hear of your diagnosis, but pleased to hear the medical community are giving you full attention as you start your Journey.
There are many supportive and genuinely helpful people on here that will answer, aid and assist when they can.
Here's a link to my site that I developed with the great support of my daughter to share what you may expect along the way. It's not overly comprehensive just a bit of help to explain some of my experiences when I entered a world and condition that I never knew existed
Very best wishes.
Don't do the journey alone, ask anything at anytime.
Hi Karen, sorry to hear that you have joined the group. The shock can be strange and it took me a little while to realise that it was me that they were talking about, I felt like I was just watching. It sounds like you are still at the early stages of diagnosis. You are likely going to have a PET scan that's more in depth than the CT scan. I'm sure Brent will see your post and will reply, he has been a great source of information and help to everyone here. As Pete said we will all be willing to help you with any questions you have. Trying to be positive seems like a strange thing to say but it really does help. Good luck and kind regards Frank.
Sorry to be late joining the discussion... sorry also that you have joined the OC club. You will find that we are not a sad lot. Frank has a wicked sense of humour, which besides positivity is what gets us through the rough days during treatment and recovery.
There will be all sorts of investigations leading up to surgery. But things are really moving fast for you. It may help to keep a journal of sorts of what happened when and what questions you want to ask, and of course the answers. Do get involved and informed about the treatment pathway, but not from the internet. For most of us waiting has been the hardest part. You’ve had an endoscopy and CT scan. So as Frank says there’s a PET scan and probably another endoscopy where they take ultrasound measurements of the tumour. These are for staging. If appropriate you will be offered surgery with a view to a cure.
Most of us, but not all, have chemo before surgery and if we are fit enough a couple of months after too.
Being fit enough is a prerequisite for surgery, they want you to survive and recover well.
i was always going to survive. I had too much to live for. Too much living still to do. You, being so young, probably feel the same way. I hope so. I hope also that you recover as well as me. I can honestly say I am happier and more content now than I have ever been.
i look forward to you joining the survivor’s club.
Counting the days, making every day count.
Thanks Peter, Frank and Brent
Peter - I have just read your blog and it is very helpful - very scary though when you are new to this .. I have just downloaded the book you recommended.
My main concern is my fitness - I am a total couch potato and don't do any exercise except walking part of my journey to and from work which is only about 40 minutes each day.
I am also a heavy smoker - 20 a day for 31 years - and I was diagnosed with mild asthma last September following a bad chest infection. I am worried the medical team won't deem me fit enough for surgery.
Are there any exercise regimes you would recommend for an unfit person? We have a steep hill close by and my husband and I went for a walk on Friday - I was totally out of breath but I think I will have to keep walking up and down the hill a few times a day to start with.
I know I shouldn't google, but that's all I seem to be doing while I'm waiting - I know I need to stop smoking, and have cut down to 12 a day from 20. When I was diagnosed the nurse said "start getting fit and no alcohol (Boo)" - I asked "what about cigarettes, I've been smoking for years?" and she frowned, and said, "well, you're not eating them" and shrugged. But I think I need to give my lungs a fighting chance
thank you all for your welcome and encouragement
Smoking isn't good , though I am not to judge as I was smoking about 30-40 per week ....I gave up immediately on diagnosis and have been lucky in having not a single urge to take up again.
Re exercise I guess everything is relative , i.e. any increase will be an improvement. My commitment to my surgeon and oncologist was to be as fit as possible for the operation and so I embarked on Running, rowing, cross trainer etc , all cardio , but take your time and build up gradually. It makes a huge difference on recovery rate and I'm glad for every spare minute I exercise pre an post op.
So , don't do the hill all in one go, take 20-30 steps , rest for a few seconds and go again. Funnily enough I still do that if needed.
Best of Luck, stay positive ( a positive approach and mindset is more than 50% of the battle)
Hi Karen, just to give you a bit of calmness, I was 57 years old and had been a smoker for about 45 years, not just tobacco. I told the nurse i only smoked when I had a coffee, she said " oh that's good" I said I know, I'm down to 20 cups a day! I stopped smoking cigarettes and just stuck to the joints, I was having about 9 a day prior to surgery and had my last one about midnight the night before surgery. I was in hospital for 12 days and I have not smoked anything since I came out of hospital. That was in October 2016. I was not a very active man and was also a couch potato most of the time but I adopted a positive attitude and like Brent enjoying life. Good luck and kind regards Frank.
I'm another ex-smoking couch potato. I was diagnosed nearly 12 months ago aged 58 T3N2M0 have had 2 cycles of FLOT chemotherapy and Ivor Lewis surgery. I'm now in remission.
From diagnosis I try and walk a couple of miles every day and for 4 weeks prior to surgery I went to the gym 3 times a week to build my upper body strength. I gave up smoking while in hospital for 12 days recovering from surgery. They were great and put me on a nicotine patch program in hospital.
As Brent & co mentioned things seem to me moving really fast for you. But you will need more tests before they can stage your cancer, and they need to do this before they can prescribe a treatment plan for you. I had exploratory surgery so that they could take a look at the outside of my tumour and confirm it had not spread to my diaphragm.
And again I had a couple of iron infusions which are no big deal.
As everyone says try and stay positive. I know it's a lot easier said than done, but try and find coping mechanisms to keep you positive. My worst time was in bed lying awake thinking blue thoughts. So I used distraction techniques of listening to the radio preferably someone talking who I really liked or disliked.
good luck, fingers crossed, and there's a whole bunch of us survivors here if you want our stories, or advice.
thanks everyone for your helpful advice
I had a meeting yesterday with the surgeon/consultant and specialist nurse as they had quite a few things they needed to discuss. I still don't know if the cancer has spread. They have told me that I have a 7cm Squamous tumour in upper gullet sort of between collar bone and breastbone. They are surprised that i have not had any problems swallowing and haven't lost any weight. I keep saying that the only symptoms I still have are excessive burping and heartburn. They said that normally people at my stage have lost 2-3 stones in weight so they seem pretty happy that I haven't. However (BIG BUT!) the CT scan has found 2 other remote tumours - one in uterus and one in left abdomen, but away from site of original tumour - and the gullet cancer has spread to some adjoining lymph nodes. Until they know whether the other 2 tumours are cancerous, they can't say whether my OC is treatable. I am having PET CT scan on Monday, and a CT with biopsy on the abdomen lump on Thursday. I also need to have ultrasound on uterus and Ultrasound Endoscopy. only whn all these results are back will they know if they can proceed with treatment pathway.
They did talk me through the treatment pathway in case I am OK to have this so told me if other 2 tumours are non-cancerous I need to see a nutritionist and start getting fit in readiness.
It is all the waiting that is so horrible.
Praying the other 2 lumps/tumours are just harmless cysts - they did say that it is rare (but not unheard of) for tumours to sprout off remotely from original site - keeping fingers crossed
Has anyone else had a similar situation?
many thanks Karen
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