Hi about six weeks ago i had a biopsies on a small nodule in my esophagus i was then told i had high grade dysplasia and the nodule would be removed by emr.i went yesterday to have this done and was told by this doctor that the biopsie showed i had a carcinoma.but then to make matters worse the nodule wasnt removed as 2 different doctors couldn't find it.i wasnt given any explanation for this and all they did was take more biopsies.has anyone ever heard of this.im wondering why the first doctor told me i had high grade dysplasia and not carcinoma.the first doctor is now on annual leave.im worried sick over this.has anyone had this happen to them.
Welcome to our forum, James5159.
I'm sorry to hear about your situation and that now you're left with this unanswered question which I suppose don't help matters.
When will you be able to talk to your doctor again?
I hope that some of our members who can relate to your situation will be popping here soon to give you advice and offer support.
If you wish to speak to someone medically trained before your next appointment with your doctor, our cancer nurses will be back after the holidays and you can reach them on this phone number 0808 800 4040, Monday - Friday between 9 a.m. - 5 p.m.
Once you know more come back if you find a moment and give us an update.
Wishing you the very best,
Renata, Cancer Chat Moderator
Hi James, I wondered how you are doing. Last July I was diagnosed with nodules and high grade dysplasia and eventually had EMR treatment early January. They removed a large nodule which turned out to be squamous cell carcinoma. I am now waiting to see what further treatment I need. I hope you have had some positive news regarding your treatment.
Hi christine hope you are well.its a month now since my last biopsies and i still haven't had the results.i was phoned today and told i have an appointment with the doctor on thursday to discuss what further treatment i will receive.i hopefully will get the results then.everthing happens slowly on the nhs.i would just like to know if i have a adenocarcinoma or not.have you still not been told what treatments or not you need since your emr.it seems a long time since your diagnosis until you had the emr.can i ask you if you had any side effects after your emr.
welome to the forum
James sorry to hear that your testing process is not going smoothly
holly sorry to hear your woes too
i am now 3.5 years post treatment for a head an neck cancer and doing well in recovery
i was diagnosed on 28th April, but did not enter treatment until the 8th July as many tests had to be comepleted in between
so testing takes time but it’s there to make sure that you get the right treatment plan
you are dealing with the best health service in the world, however it does creak and groan sometimes and I do understand that service differes from region to region and experiences may not be as positive as mine.
The testing process is one of the worst parts of this journey as you don’t yet know what you are dealing with and the fear of the unknown can sometime become overwhelming.....I know I’ve been there
However you have both done the right thing and started the testing process
my advice to you at this point in time is to try and distract yourself, do stuff to give your brain 10 ,imutes or more relief from the worry being caused at present. I know it’s easier said than done, but it works believe me
keep us up to date with how both your journey continue and there are many of us on here to help at every stage of you concern, so shout whenever
Welcome to the forum.
Sorry to read about your situation - I was going to say that your story sounds very similar to Holly4's but then noticed that Christine had already replied.
The only reason I can think of for you being told different things is that more information came to light between you seeing the first and second doctors. As I understand it, biopsies are examined under a microscope by two independent specialists. This is as a safeguard against mistakes being made by a single person, which does happen as they are only human.
I hope you get to the bottom of this soon.
Hi James, I had my meeting yesterday with the endoscopy specialist who did my op and diagnosis of squamous cell carcinoma. My next step is a fast track whole body CT scan to check for any other abnormalities and I will then be referred to Oncology for treatment which may well be radiotherapy. I am quite scared snd worried about all this. I went in for the EMR treatment on the right hand side of my throat in Jnuary and that is when they found the large cancer nodule which they removed. It had grown within matter of a few months since July last year. Apart from having a very sore throat and only being able to sip water slowly straight after my op as well as only managing very soft foods, after two weeks I was in no pain at all and I could swallow much better because of what they removed.
I hope all went well with your appointment on Thursday and please keep in touch.
Hi christine i hope you are well.i finally got to speak to a doctor and got to ask some questions.it seems that because my nodule was small 6mm the doctors think that the 5 or 6 biopsies on it have removed it.so the positive is on the surface of my esophagus the cancer seems to have been removed.but i have now to have some emr treatment to remove a deeper area around where the nodule was to make sure that the cancer isn't underneath that area and have more biopsies also.i am now waiting for a date for this to be done.got to speak to the doctor for a good half hour and told her that i thought she should have spoken to me a while ago to put my mind somewhat at rest and she agreed.i also told her that i was unhappy that the previous scope before the nodule was discovered was well over five years ago.i have barretts esophagus and was told that i would be scoped every 2 to 3 years.and maybe if i had been scoped earlier it might have been found before it had progressed to cancer.she said that it was too long and she had put a note on my files saying so and if i wanted to make a complaint she would support me in this.i wont be making a complaint though.anyway everything sounded positive but i still have a bit more worrying until the emr is completed and the biopsy results from that come back.i hope everything goes well for you christne and please let me know of any further news regarding you own situation.
Best regards james.
Hi James, Glad you have now seen a doctor and that your EMR treatment will be done soon. Your case sounds very similar to mine except that mine is high up in my neck area just above my food pipe and yours is lower down the oesophagus. The doctors think that my cancer was caused by an auto immune condition called lichen planus which I've had since 1998 in my oesophagus which caused strictures and scar tissue. Like you, I went for years without any biopsies but was taking medication to control the disease. After having a really sore throat for about 18 months, they decided to take biopsies last July and that is when the pre-cancerous cells were found. Between August and January the nodule grew quite large and the doctors were surprised to find it when I went in for EMR treatment on my pre-cancerous cells. It was removed and I had some sort of heat treatment on the area but now I may have to have radiotherapy treatment in case they haven't removed it all. My CT scan is booked for 13 February and then I have a meeting with the Oncology doctors when they have discussed my case. The good news, though, is that now the nodule has been removed I can swallow normally and the pain has gone!! I hope that your EMR treatment is successful and please keep in touch and let me know any news regarding yourself.
Hi christine thanks for replying,its nice to speak with someone who's in the same situation as me.my cancer is roughlly halfway down my esophagus so slightly different to yours.i have already had a ct scan with contrast to check that the cancer hadn't gone through to the other side of my esophagus which thankfully it hadn't in fact it barely showed because it was small.but the scan did show i had 2 nodules in my lungs.the doctors have said these are likely scar tissue from a previous infection,although i will need another ct scan in 6months just to make sure.apparently lung nodules are quite common and mostly nothing to worry about.
Best regards james
Hi James, Thanks for your reply. I find the not knowing and waiting for results to be the worst part of all this but everyone has to do the same. Glad we can keep in touch and see how each other are doing.
Well I had my emr on friday and the report says I've had a possible nodule and a tongue of high grade dysplasia removed by duette and something that I never heard of called avulsion polypectomy.im hoping the doctors havve got everything and the cancer isn't any deeper.the lab results and mdm meeting will take a month I've been told,so a bit more of an anxious wait.as for the emr itself,it wasn't as bad as I thought it would be.afterwards I had a pain in my chest for a couple of days a bit like bad heartburn.im just finishing a soft food diet and im getting a twinge of pain when the food passes the spot where the esophagus lining was removed by the emr.but im sure this will go as I heal.unfortunately for the second time the sedative had no effect on me and I didn't feel sleepy or relaxed.just my luck ehh lol.but at least I heard everything the two doctors talked about.
Hi James, I was just about to post asking how things went for you last Friday. Glad that it all went smoothly and that the EMR wasn't as bad as you thought. I had exactly the same feeling as you afterwards regarding the twinge of pain when food passed the spot where they operated. Sorry to hear the sedative didn't work for you as I can never remember anything afterwards after sedation but I had a general anaesthetic when they did my EMR and removal of the tumour. I have some good news that my whole body CT scan came back clear but after meeting with the Oncology doctors I am to have six and a half weeks of radiotherapy and three doses of chemotherapy. This Thursday I go to have metal clips in my throat so Radiology know exactly where to treat and then the day after I go to Radiology for a CT scan before treatment begins. Today I had some really sad news to add to everything else. My 95 year old mum has just been diagnosed with squamous cell cancer in her mouth. She has Alzheimers so doesn't really understand but just something else to worry about. Hope you don't have to wait too long for your results but let me know how you go on.
Hi christine first of all.im sorry to hear the news regarding your mother.but im pleased to hear that the ct scan went well for you.it sounds that you are in for a fair bit of treatment. I really hope that this treatment has a positive outcome for you and that you dont have to many side effects.at least you now know what lies ahead of you treatment wise.please let me know how you get on with everything.
Best wishes james