My diagnosis & some questions

dodger21 Member Posts: 85 Member

William wrote a few days ago, but I was a bit late replying (I won’t blame the time difference between US and Australia). I got pernicious anaemia (Vitamin B deficiency) for the second time last December and my GP sent me to a gastrologist as someone my age (35) eating all type of foods shouldn’t be getting that again. I had a colonoscopy and endoscopy in Feb. My doctor came back and saw me as I was coming out of anesthetic and was quite excited (she is a lovely bubbly person). She said “You have two cracks in your oesophagus!” She then gave me an internal photo of my oesophagus and showed me the two cracks. When my mum came to pick me up I excitedly said, “Look, two cracks!” Mum said, “But what’s that big red patch on the other side.” I said, “I don’t know, she never talked about that, don’t worry about it.” The form that came with the photo said I had Grade A reflux oesophagitis, no hiatus hernia and mild eryth….ous gastritis. Nothing was mentioned about cancer or Barrett’s.

Two weeks later I go back to see her and, knowing how bubbly a person she is I said, “My friends said you can’t crack your oesophagus.” She said, “Well, you actually can, but we need to talk about this red patch over here (pointing to the photo).” I then started learning a lot about oesphagus’, adenocarcinomas, Barrett’s etc. Mind you I was so flabbergasted learning I had Stage 0, a lot of the words (most of which I had never heard of before) went in one ear and out the other. However, she did explain that some people reflux often and get Barrett’s oesophagus from it. Sometimes Barrett’s oesophagus can have dysplaxia which can have low grade and high grade. When you get high grade that can turn into adenocarcinoma, of which I was at Stage 0. I then thought it might be a good time to tell her that my grandmother died of oesophageal cancer in the 1980’s.

I was put on medication for two to three months (and now I’m no longer on it I can’t even remember the name off the top of my head!). I had absolutely no symptoms beforehand (never had heartburn and only occasional reflux). However, the medication I was on made me burp, dry retch and I got occasional chest pain (maybe that is what heartburn feels like) at the beginning.

I was also told not to eat anything acidic, eg no juices, soft drinks, tomatoes etc.

Anyway, she said my treatment plan is to be on this medication, then go in for another endoscope. She said the next time she was going to take biopsies of the whole oesophagus. She said it used to be the norm that they would only biopsy around the cancer area, but the train of thought now is to biopsy at certain points (meaning the red patch as I call it) and then all the way up the oesophagus. She then said there is a new machine in Australia where they can put the scope down you and eradicate it somehow. I said is that radiotherapy as I don’t want people to see a red neck on me. She then kindly explained that my oesophagus problem was between my two breasts and not in my neck. She said if this scope thing doesn’t work, there is surgery which carries a lot of risks. She didn’t name the surgery but from looking at the previous posts it sounds similar to MIE. She said the surgery involves removing the oesophagus and moving part of the stomach up to form the oesophagus. She also mentioned the word ileum while saying this but I was in too much shock to take it all in.

So, I did the 2-3 months with this medication and had lung scans, etc in the meantime which were all clear. I went back in last Monday for the endoscopy again. Before I went under I told her that I’ve never burped and refluxed so much in my entire life on that medication she put me on. I didn’t think I should be refluxing and burping if that is meant to be a symptom beforehand. So since then I’ve been taken off that medication. When I came out of anaesthetic I was quite anxious this time wanting to know what it looks like. The photo looks quite lovely (if I can use that term). There is still a red patch but there is no longer two cracks. The whole oesophagus (including the red patch) is now smooth like a baby’s bottom, and not scaly or red like it was in February. This time she wrote on the paperwork no inflammation, no grade A reflux oesophagitis and mild gastritis. She took 15 biopsies up and down the whole oesophagus. I asked her whether I need to have that radio scope now (I still don’t know what exactly it is called) and she said to wait and see what the pathology results are. That got my hopes up thinking maybe it regressed back to Barrett’s with dysplaxia and is now no longer Grade 0 adenocarcinoma.

I now have a two week wait before I go back for the results. In the meantime she has given me two different PPI’s to try. This week that just finished I tried Nexium and from Tuesday I try Parriets. I wrote a diary for her this week as I didn’t think she would believe how many times I still burp, have heartburn and have diarrhea all the time. She even gave me granules to help with the diarrhea in the months beforehand but they don’t always work. I go back on the 30th May for the results.

I am still extremely positive as, when she first broke the news to me, she walked out with me, put her hand on my shoulder and said, “You don’t know how excited I am to have found this at this stage.” It was then I realized how lucky I am and all my friends who have that shocked look on their face when I tell them, change when I say how lucky I am. But she also said, “Oesophageal cancer and Barrett’s isn’t normally hereditary.”

So, based on what I’ve read on your posts and what William has written I have a few questions so I’m a bit more prepared when I meet with her next Monday.

1. She said I shouldn’t eat anything acidic, like all juices, soft drinks, tomatoes, apples, etc. I’ve stuck to that and went cold turkey on the juices easy. But I read that tomatoes are meant to have anti-cancer properties and apples/oranges are meant to be good fruits. I can eat normally I just have very small meals now at shorter intervals (so I don’t lose too much weight). What do you guys eat that makes sure you still get the required nutrients?

2. William wrote previously that it has not been established that EC is hereditary, but that it has not been ruled out either. My paternal grandmother died within a year of being diagnosed. I was only a kid then, so I don’t remember too much. And my dad never goes to a doctor for anything so we don’t know what his health is like (typical stubborn Aussie male!) When I go back next Monday, is there something I can ask her to test for whether I have some gene that disposed me to EC. My concern is if it has regressed (if that is how it works) to Barrett’s with high grade or, even better, low grade, shouldn’t I be tested to see if I have some gene that pre disposes me to it. There was one post I read from a while back where a gentleman had Barrett’s low grade that went to Stage 3 or 4 EC. If I have some gene, mightn’t it be better just to remove the oesophagus now and not do these stages beforehand? I would figure that the US would be more advanced with their research into EC and genetics than Australia would be. If there is some genetic thing that is tested in the US, I would love to know what it is so I can ask her if we have the same testing here in Australia. I can’t find the post at the moment, but someone (I think it was William) wrote a post about HER2, which is a breast cancer gene. Is that something that is related to Oesohageal cancer that I can ask to be tested for, or will she think I’m a hypochondriac?

3. Does anyone know what my doctor means when she says there is this machine that is like a scope, gets put down you and eradicates it. From Google, I am guessing it is either photo dynamic therapy or radio frequency ablation therapy.

On a brighter note, as I am really feeling blessed it was found so early, this Wednesday (25th) Australia has it’s annual Australia’s Largest Morning Tea. This is where all work organizations have a morning tea for cancer research. I have never been to one before, but my church is having a guest minister who had previously suffered from cancer come and preach that day, as well as have morning tea. He will give a sermon on Surviving Cancer, which I am very much looking forward to. I am taking my closest girlfriend and another mutual friend who has a terminal illness (not cancer). One day at a time so not to stress too much into the future, but I can’t wait until Wednesday.

I feel blessed to have found a forum with so many Christians

Dodger (Dani)