As promised, I would update you on my first consultant appointment this week.
Unfortunately, the consultant provided me with not the news my wife and I were hoping for.
In summary, the consultation explained that I have Oesophageal adenocarcinomas which is the most common type and mainly affects the lower part of the oesophagus at the junction with the stomach. There is an operation that can be offered to remove the cancer known as the Ivor Lewis operation, but unfortunately due to the spread of cancer to my liver and a bone in my pelvis, he would not be able to offer an operation.
The treatment plan will now be focused on chemotherapy / radiotherapy at Nottingham. I am now waiting for a second appointment date to come through to meet with a Doctor in the Oncology dept.
My questions to anyone who has similar prognosis, what type of Chemo / Radio therapy was offered?
Should I seek a second consultant opinion?
Are their any other medical or non medical (for example herbal) treatments possible?
Thank you
Kind regards
K
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Thank you for coming back with your consultation to let us all know. These talks are always like this, I expected a radioablayion type surgery using gastroscopy and away, but was given radical Oesophagectomy. MDT decision.
Typically oesophagectomy (Ivor Lewis aka two stage, or sometimes there stage) is given when the cancer is localised at the GE junction area, thus by removing the part of the oesophagus and the part of the stomach the cancerous tissues could be physically removed from the body. If caught early then chemo/radio treatment may not be needed.
When the cancer is spread to other organs( metastasis) oesophagectomy may not always be prime treatment amongst other if any required. That's purely unfortunate late detection. Having said that still better than much late detection. So always positive outlook.
Each diagnosis and specific prognosis is subjective to each individual.
As it goes reading a lot feedback from chemo survivors in this forum tell me that it's very subjective, some tolerate some form of chemo good and few doesnt, but then it's all trial and error. How one reacts to the medicines is highly unpredictable. Chemo could be tiring to go through and requires strong optimistic outlook and state of the mind. This forum can be great tool to sustain through the not so good days.
Personally I havent had radio or chemo, so camt advice here, and pretty sure other members will chip in soon with their lovely words of wisdom as always.
Herbal. I use echinacea tablets to boost my immunity for some time before the surgery in 2018 and still using these successfully. Again these have 50/50 chance of working on effectively. I had very bad history of catching throat infections and since I started using these this has disappeared. and has helped me tremendously to sustain the hectic lifestyle and induced fatigue by protecting me from catching bugs.
Secondly CBD oil, with good quality and higher concentration it does help significantly to reduce pains and boost tolerance of the treatment. From personal and family use.
Please use your own judgement and consultation with your hospital team when trying to use these products. Disclaimer.
It's a long journey for all of us. and a very rewarding to interact with so many on here as well. So please keep communicating, if you feel happy to.
Do remember to talk to your oncologist about any herbal medicine you are taking if you go the chemo radiotherapy route as some herbal medicines are counter reactive with chemo therapy. Many oncologists are happy to work with you and even suggest herbal medicines that are complimentary. Good luck take care lizzy
I'm sorry to hear that your recent consultation provided the news that surgery wasn't an option for you.
Chemotherapy and Radiotherapy is very individual which is based on an individuals location and size of tumor or secondaries and where they are located.
Both treatments affect people in different ways some have very few side effects others more so. I think the most important thing to mention is to try and keep as fit as possible both prior to and during the treatment cycles you are about to undertake.
There are many contributors on the forum who have posted hints and tips on how they coped with side effects during treatment which you might find useful.
Ask your Oncologist about the herbal treatments you are considering taking so that they might advise if there are any contraindications to taking the same which is important so as not to interfere with any treatment you will be receiving.
As mentioned previously use the search button to look for posts relating to any treatments you are offered there might very well be someone on the forum who has experienced a similar course of treatment which will give you some idea as to what to possibly expect although again it will only be an individuals view point.
Thank you for coming back onto the forum to update us on the outcome of the consultation it can be quite therapeutic just to put our thoughts on paper albeit a computer screen in this case and to get others view points on questions that might be racing about in our heads and to simply know that someone who is not within our close family circle is listening. I know that you will be having concerns as to how your wife and family will be coping at this very emotional time. xx
Keith I don't know your location but I am sure there will be an OPA support group near to you my geography is hopeless but if you give the OPA a telephone call they will be able to put you in touch with your nearest group. You might find that the source of information you can gleem from there might also be invaluable. Because of the Pandemic there won't be any meetings being held but there will be contact numbers of group members who would be available to speak on the phone. xx
If you go to the home page on the left there is a box which says meet others near to you. You input your post code and it will provide details of others
Sorry to hear about your diagnosis, am new on this site still trying to figure out my way around it however my mother was diagnosed with the same 8 months ago and we are still fighting on.
As earlier said, prognosis will really depend on your general health as well as age among others. The treatments are highly subjective. My mother is in her mid 60s, and finished her 1st round of chemo but given that she is generally weak, couldn’t go through radiotherapy. The cancer had also spread to the liver so no operation could be done!
Keep the medical team close and talk to them extensively, ensure that you ask about all that you need to know to help you make the decision but bottom line is you need to start the treatment ASAP.
Herbal options are helpful especially with blood work, CBD oil helps with the pain but also consult with your doc.
It’s surely a tough and long journey, but try to stay positive plus the support of your family will take you through the bad days.
I have today heard from the Oncology at department at Nottingham asking me to attend to an appointment on the of 12th May, so am anticipating that is treatment will be scheduled for week commencing 18th. 🙏
That’s great. Keep your faith in our creator and then the doctors. These are hard times given the covid situation. Keep safe and healthy Cz u need the strength to keep those bad cells at bay!
And also enjoy all the times you can with your family, it’s always priceless...May God make this easy on you.
Sorry to hear the news.But you must stay positive and have a good attitude. Believe me , I know it’s hard , but attitude is a big part of survival. It’s always good to get second opinion.2rd opinion is always good to have,but I would try and get to a cancer hospitL or center with a top 5 rating. As far as treatment I had fulfox chemo and then 28 days of radiation with 6 chemo pills a day. I then had 13 hours of surgery and had ivor Lewis procedure .good luck and I hope it works out for you
Sorry to hear the outcome of your consultation. I was lucky as the Mets to my liver were only found after the operation. I was supposed to have chemo radio before and after but couldn't have it prior due to lfts being abnormal.
As you are aware medicine is not an exact science and we are all different. Take each day as it comes and if you feel tired during treatment rest until you feel up to going again. I started on eox chemo but it had no effect so was moved onto irinotecan which had a good response apart from 1 larger liver lesion. I had stereotactic radiotherapy on the lesion in November and up to now lfts and tumour markers are coming down. The radiotherapy seemed to take all of my energy and I must admit I struggled to maintain weight and fluid intake almost straightaway. My wife kept on top of things whilst I was struggling and ensured I got enough fluids in but it was hard. Within a week or two I was back to my new normal way of eating and maintaining weight.
Take care and best of luck. You know where we are if you need us .
I have my first meeting with Oncologist Doctor on Tuesday 12th May, so will be in a better position to understand more about the type of Chemo / Radiotherapy that is proposed.
I have a number of questions planned to ask the Doctor, which are mainly focused on treatment reactions and management, however would appreciate if you could advise on any specific questions you believe I should/must ask.
The only course of action that seems relevant for all of us: aim to get fitter than you’ve ever been. Create and stick with a workout regimen that includes cardio and upper/lower body resistance. Online you can find dozens of sites with methods, exercise—confusing, yes. Toughest part at first may be to choose components, then start. A gym would be super with other folks to share, cheer—but we know the likelihood of that any time soon. Don’t need complex equipment; body weight workouts are simple, use what’s at hand.
Whatever chemo/radio combo you undertake amounts to an insult/assault on your body (and mind); makes sense to do what’s possible to prepare for it. Many have found it helps heart and spirit too.
Hi there sorry to hear the news wasn’t what you wanted to hear, but stay positive there are people that live good lives after just having chemo/radiotherapy. Even tumours disappearing from other organs.
Stay fit eat well if you can.
Be careful with alternative or even herbal remedies.
I had ECX Chemo followed by Ivor Lewis op then chemo. It was hard on the body.
Take a note book and write everything down to refer to. Ask questions on here people have been through similar situations.
You are very brave to share such news and to me that attitude is what can and has saved so many facing cancer. I hope you find the right treatment and I'm sure you will! May I ask what lifestyle, if any , habits you think lead to this prognosis? Could you change your lifestyle radically to help preferred treatment? Also people never say what age or gender they are, but i think considering just how many of us use this forum, it actually helps a lot. Why? then you are able to compare yourself and heed warnings and suggestions from others that align more accurately with your own position. Best of luck in getting well.
In answer to your questions, my lifestyle has always been very disciplined, in diet, a little drink, 1-2 units per month, and keep myself very fit.
My life style has been good for many years.
I am 63 years old, retired at 60, having previously being a Director for a large world wide group company.
In January this year i began experiencing problems with acid reflux and a little difficultly with swallowing solid foods. An appointment with me GP resulted in a prescription of Omeprazole 1 x 20mg tablet per day, for 4-6weeks. No improvement.
At the end of February I revisited the GP and he referred me for an Endoscopy. The Endoscopy identified that I had a malignant tumour in my oesophagus at the junction with the stomach.
Would / could i have done anything earlier to help with the prognosis?
Possibly, the only one thing I should have insisted from the GP is to have requested the Endoscopy at the first signs of having any difficulty with acid reflux, and / or swallowing. Although the Endoscopy is not a pleasant experience, it may help to provide an opportunity for early treatment.
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Positive Thinking does make the journey easier My Story
Operation Eve
Stage IV stomach cancer at junction with oesophagus - now offered surgery
Treatment for recurrent oesophageal cancer
Not the news I was expecting
