Hi there

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Hi there, my mum has recently been diagnosed with this cancer at age 63 and I am finding it extremely hard to cope with the news as I have already lost my dad and have no siblings. 

She’s already had an endoscopy and CT scan with dye  we’ve had a meeting with the doctor who was very positive and told us it a better type of cancer which they can’t see has spread anywhere else and can either be cured or treated. He said they’ve done 70% of the tests but would want to do a further PET scan to make sure which was done yesterday. Once this is back they are going to decide a treatment, the doctor/nurse did explain this can potentially but cured/put into remission without the need of surgery. Surely the doctors/nurse should not be telling us this if it wasn’t the case. However I have stupidly gone on Google and I am now just assuming the worst and am thinking the doctor was just trying to keep us optimistic. At the moment my mum is in high spirits, continuing to work and has no discomfort other than heartburn and swallowing meat. We will be working with a dietitian for her to gain some more weight but since been diagnosed 10 days ago she has already put on 3 pounds.

please can you share your positives stories to pull me out of this dark mind set, thank you all in advance! 

  • HI Lucy2024 welcome to the forum and I am so sorry to hear what is happening for you and your family right now, none of this is easy and none of it often makes any sense either.

    If I was you I would disregard what you have read on Google as google is a general search engine, but what you need are specifics about your mums type of Cancer, unique to her. The only people who have this specific detail are the Doctors that are treating your mum, so whilst it may not always be the best to hear what they have to say, they say it based on evidence and science and thats what mum need right now  and Google doesnt provide that

    If I can share anything with you its to stay OFF Google. xxx

    gail

     
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  • Hi Lucy,

    Sorry to hear that your mum has joined this highly undesirable club. If it helps, my story is as follows. I was diagnosed with oesophageal cancer in October 2023 following an endoscopy and CT scan. I was 59 years old. The PET scan, which I also had, is a more detailed CT scan which allows the doctors to see if there has been any spread of the cancer to nearby organs. Once the results of this are back, then they can grade the cancer using the TNM staging system and the MDT (multidisciplinary team) will meet and discuss your mum’s case and determine the best course of action. For me (and many others on this forum) this was four rounds of FLOT chemotherapy followed by surgery and then another four rounds of FLOT. I recommend that you download the Macmillan guide to oesophageal cancer as it explains everything. I read it several times during the course of my treatment. My surgery was on 29th February so I am over 6 months past it now and slowly coming to terms with a new way of living. You will also get lots of advice and information on this forum from those unfortunates like myself who have trod or are still treading this course. Best wishes to you both. CB

  • Dear Lucy

    i am so sorry to hear about your Mum.  And you too. Cancer affects not only the patient but their loved ones as well. I think Granny59 has given you some excellent advice, “googling” may only add to your anxiety. Although having said that,  I do it myself because the  MacMillan literature is useful for learning the vocabulary about diagnosis and treatment but it does not speculate about prognosis. The question most prominent in all of our minds. 
    Granny 59 is also wise to advise you to discuss the specifics of your Mum’s cancer with her Doctors. If you think that they are being over-optimistic about non-surgical pathways  ask them for the evidence that their opinion is based on. They will answer questions that are put to them in as much detail as the patient wants. This may put your mind at rest. 
    First of all. I would check with your Mum how much she does want to know. Some people cope by not wanting to know everything  and carrying on with life as normal in (for wont of a better phrase) in blissful ignorance. And Doctors are often criticised for either being too blunt or sugar coating a dismal outlook. 

    I wish you and your Mum all the best.

  • Hi Lucy2024. I am awfully sorry your mum has this horrible illness. However, I think you have received some very good advice so far from other contributors and the last thing you should be doing is trying to pursue a diagnosis through Google. It does sound like your mum is only at the first stages of diagnosis and the feedback she has received so far from her team should be viewed as encouraging.  Her next meeting with her team will offer her much more explanation of her particular diagnosis and their recommended route forward. There is every hope at this stage for a positive outcome albeit there could be a long haul through the process over the next few months. When she and her team decide on her particular route then you will be able to research through this forum for others with similar experiences of that particular route.  There are, as you will find, different routes according to the exact diagnosis.  I, for instance, was fortunately diagnosed at an early stage and hence offered a radio/chemotherapy route followed by surgery.  The outcome 15 months post surgery has been very good so far and I am very much older than your mum.  I do hope everything starts to get sorted for her as soon as possible.