Cancer talk may not be for everyone

ben2026
ben2026 Online Community Member Posts: 26 Connected

Hello there I have bad mental health I suffer badly with my depression and anxiety I'm on the strongest medication for both and been on both the last 9 years

10 weeks ago I come across a little lump on my tongue that I thought was a osser so try things like bonjour and other moths things it didn't go away it got bigger and bigger I want to my GP about this he give me antibiotics for it and as it was given me pain some pain relief as well I took the 2 weeks of antibiotics it got bigger and a lump as come along to the other side of my tongue but small like the 1st one started so I go back to my GP given me stronger antibiotics nothing as happening now the lump as split and gone white and yellow the other lump as also gone white and got ABIT bigger I don't think anything more about it to last Friday night I get a lump and the most intense pain and swelling on my throat and tongue I have ever had I have 2 lumps in my neck that is showing as it was so swollen I honestly did think I was not going to make it to morning I go doctors on Monday he told me that you may have cancer that as spread to your throat from your tongue this news as put me in shock my anxiety is all over the place I get a phone call from the hospital nose throat and ear teams in there cancer part saying they booked me in for this Thursday coming for a meeting I'm scared out of my mind now and got my throat going tight and then stopping all the time I googled the lump and seen alot of lumps that is cancer and looked at the stages and if it's right from the NHS page I have stage 4 tongue and throat cancer and the next part of the body it goes to is the lungs

If you have anything to say that can help or been and had this and got over this please message me I'm worried and just looking for something not helping relax mind thank you

Comments

  • Passerby
    Passerby Posts: 325 Pioneering

    Cancer talk should be for everyone, as more than 400,000 people are diagnosed with cancer each year in the UK, and on average someone in the UK is diagnosed with cancer at least every 90 seconds.

    All the best.

  • MW123
    MW123 Scope Member Posts: 1,184 Championing

    @ben2026

    In December 2017, after months of unusual blood tests, my GP called me in urgently. She looked serious and said, “I can’t give you any guarantees, but it looks like you may have blood cancer.” With Christmas just four days away, I had to wait until the new year for a referral to an oncologist. I was terrified. My family was still grieving the recent loss of my mum, so I chose to keep the news to myself to avoid ruining Christmas for everyone.

    Quietly, I spent hours on Google, desperate for answers and drawn to every worst-case scenario. When you said you’ve been Googling, it really hit home, because I did exactly the same. It is something so many of us do when we are afraid and uncertain. My GP’s words became the first thing I thought of when I woke up and the last thing on my mind before I fell asleep. I felt isolated, overwhelmed, and stuck in an endless loop of “what ifs”.

    That is why I want to say it is a good sign you have an appointment with the specialists so soon. They will be able to give you clear answers and guide you through whatever comes next. I know the waiting is incredibly difficult, and even with support around you, it can still feel like you are facing this on your own. No one else is in your body, carrying your exact fear. But please remember, there are people who understand what this kind of fear feels like, and many have faced what seemed like the worst and still come through it.

    I live with chronic blood cancer, and over the years I have spent time in treatment alongside people dealing with all kinds of cancer. You naturally talk, share stories, and build connections. I have met people with many different diagnoses, and I can honestly say, hand on heart, I knew a woman who survived stage 4 mouth cancer. So please, try not to lose hope.

    One thing I have learnt is how unhelpful and often distressing Google can be in moments like this. It usually points you to the worst possible outcome, which may have nothing to do with your actual situation. The NHS website offers general information, but only your medical team, after proper tests like a biopsy, can give you an accurate diagnosis.

    I know it feels dark right now, but there is still every chance that the lumps are benign. And even if it is something more serious, there are many effective treatments available today. Things that once seemed hopeless no longer are. This might feel like a lonely road, but you are not the only one who has walked it. Many people have been where you are now and have come out the other side. Try to hold on to that.

  • Rosie_Scope
    Rosie_Scope Posts: 5,710 Scope Online Community Coordinator

    Hi @ben2026, that sounds really uncomfortable and worrying, I'm sorry you're going through this at the moment. MW123 has given a really thoughtful answer, so I'm not sure I have much more to add after their kind words. But I hope the doctors are able to give you some answers at your appointment. Whatever happens there is support out there to help you through, you won't be alone and we're here if you need to talk about things.

    Is there anything that you might be able to do to distract yourself a little until the appointment? I realise that can be really difficult, but even just a couple of hours of respite from thinking about it might help you relax and rest your mind. Things that require a bit of focus like doing a craft, reading, or playing a game can help take your mind off things.

    Wishing you all the best, hope your appointment goes well.

  • ben2026
    ben2026 Online Community Member Posts: 26 Connected

    Hello @MW123 and @rosie_scope

    Thank you both for your replys mw123 I'm really am sorry to hear you had to go through everything you did having cancer is scary on its own but at a time of losing your mother and being days away from Christmas did you feel you did the right thing not to say anything at 1st as IV not told alot of people or family I don't know how to break the news how did you as of now I don't know if mine is cancer but everything points to it how long have you had yours sorry for getting asking a personnel question how did you know it was the right time to say about it to family members? Am I best to wait to see what the hospital say 1st don't make me feel any easier about it waiting to know I wish you all the best and good health I hope you get past this and everything is ok for you thank you for your message

    Hello there Rosie again thanks you for your message I am extremely worried about this as I z back there IV not told family about this but doing this on my own is hard but I don't want them to worry to I find out what it can be I thank you again for your message all the best to you

  • ben2026
    ben2026 Online Community Member Posts: 26 Connected

    Hello there everyone I have 4 lumps 2 on both sides of tongue and 2 on the same side on my throat now this is what I don't get my throat keep swallowing up and going rock hard and painful on my right side and I feel moving like bubbles in my neck it's weird feeling when it happens I became extremely tired and light headed like I'm going to pass out this as only happened 2 times one in the middle of the night and I thought I was not going to wake back up when I did get to sleep and today out of the blue is this normal as I can feel my glutes in my neck and it's moving but the other lump don't really move but get more harder the more my throat swelling up I been also getting a sharp pain in my tongue on the lump t the back behind and under my tongue IV been on antibiotics now 4 weeks and it's not going down or getting better spit can't be a virus or bacteria thing IV also seen from last night I got little small dots on my inner button lip and IV had a cut ony lip that been there from the same time my 1st lump appear over 9 weeks ies ago

  • ben2026
    ben2026 Online Community Member Posts: 26 Connected

    If this ends up being cancer I been told that I have to go to and from the hospital alot but I don't drive as I have other health issues which as stop me from.driving but the bus costs 10 pound each time I only get benefits right now is there a way I could get more help as I get the bear minimum from benefits and it's hard to get enough as it is without extra costs thanks

  • Rosie_Scope
    Rosie_Scope Posts: 5,710 Scope Online Community Coordinator

    Hi @ben2026, if you find you need to be travelling to hospital a lot, the hospital may have transport options to help you get to appointments. You'd just need to speak to the patient transport team to see if they can help.

    There's also a scheme that helps people on low incomes, so that might be worth looking into:

    Healthcare Travel Costs Scheme (HTCS) - NHS

  • Passerby
    Passerby Posts: 325 Pioneering

    There's what's called, "Healthcare Travel Costs Scheme", which can offer refunds for travel expenses incurred for medical appointments.

    To qualify for help with travel costs under the HTCS, you must meet the following 3 criteria, which I believe you meet all of them.

    1. At the time of your appointment, you or your partner (including civil partners) must receive one of the qualifying benefits or allowances listed on this page, or meet the eligibility criteria for the NHS Low Income Scheme.
    2. You must have a referral for specialist care from a healthcare professional to a specialist or a hospital for further NHS treatment or tests (often referred to as secondary care).
    3. Your appointment must be on a separate visit to when the referral was made. This applies whether your treatment is provided at a different location (hospital or clinic) or on the same premises as where the GP or another health professional issued the referral.

    To claim your travel costs, take your travel receipts, appointment letter or card, plus proof that you're receiving one of the qualifying benefits, to a nominated cashiers' office.

    Nominated cashiers' offices are located in the hospital or clinic that treated you. They'll assess your claim and make the payment directly to you.

    Hope this will help.

  • MW123
    MW123 Scope Member Posts: 1,184 Championing

    @ben2026

    Please don’t apologise for asking personal questions. I completely understand how overwhelming and frightening this all feels, especially when you are stuck in that uncertain place of not knowing but fearing the worst. I have been there, and it is an incredibly hard place to be.

    To answer your question, yes, I do feel I made the right decision not to tell my family straight away. At the time, we were still grieving the loss of my mum, and with Christmas approaching, I didn’t want to add more worry without having any clear answers. After hearing the GP’s initial prognosis, I struggled with some very dark thoughts and simply wasn’t in the right headspace to explain something so serious when I didn’t even have the full picture myself. I waited until after my first appointment with the oncologist before I shared anything. By then, I had more solid information, which helped me feel more emotionally grounded and made the conversation easier to manage.

    The only people I told early on were my CEO and my secretary at work. That was only because they needed to know because I had to start rearranging my diary for medical appointments and adjusting my working hours. I trusted them to keep it confidential, and they were both incredibly supportive, which helped make a very difficult time a little more manageable.

    Deciding when to tell others is such a personal choice. For me, it felt right to wait until I had a better understanding of what I was dealing with. Over the years, I’ve spoken to other suspected cancer patients. Some told their families straight away, others chose to wait, just like I did. It really depends on the individual and the circumstances. There is no right or wrong way, only what feels best for you.

    You also asked how long I’ve had my cancer. I was officially diagnosed in early May 2018, although my symptoms had started the year before. My cancer is in the bone marrow and is considered a rare form, usually seen in men in their seventies or older, so to be diagnosed at 57 as a woman was very unexpected.

    When you see your specialist next Thursday, I really hope it brings you some clarity and reassurance. I remember how different it felt once I finally sat down with someone who truly understood what they were looking at. My oncologist was calm, clear and reassuring. There was no panic, just steady explanations and the words, “There’s a lot we can do.” It was a complete contrast to how my GP had handled things. Her words, “I can’t offer you any guarantees,” still stay with me. I know she probably meant to prepare me, but the way it was said left me frightened and unprepared.

    That is also why I would gently suggest being careful with Google. In the early days, my oncologist advised me not to search for anything online, and I wish I had listened. I thought there were only three types of blood cancer, but there are actually more than 120. Google tends to focus on the most serious or well-known ones and can lead you down a rabbit hole of worst-case scenarios that may not apply at all. The most reliable information will come from your medical team, once they have carried out the necessary tests.

    I also want to add that, over the years, while sitting in waiting rooms, I’ve often spoken with other patients who were anxiously waiting for their test results, upset, scared, and fearing the worst. And many times, I’ve seen those same people come out of their appointments visibly relieved, even in tears of joy and relief, because their tests came back clear.

    Not every lump or unusual symptom leads to bad news, and sometimes the outcome is much better than feared. I found that the fear and the not knowing were the hardest parts for me. I was actually very relieved when I finally got the diagnosis. I’ve been with the same medical team for seven years now, and they truly feel like an extended family to me.

    I know the days leading up to your appointment won’t be easy. Just remember, you’re not alone, myself and other members are here for you whenever you need a bit of support. xx

  • ben2026
    ben2026 Online Community Member Posts: 26 Connected

    Sorry I not been on and thank you all for your help and messages and I'm sorry wm123 for going through everything you did it much of being hard and exhausting at the time I hope your doing better now then before

    Update I had my meeting today with the nose head and throat team they put me in a biopsy that I had today now I thought I was only having the one but as I have had a cut on my lip for the last 15 weeks the doctor took one look at it and told me he's never seen this level of deep infection or worse on a lip before and did a biopsy on it as well I had the biopsy on my tongue and lip at the same time now all the medication that nums you as complete gone and boy I'm in alot of pain right now with both I also been put down for a scan that as to happen within 2 weeks timeframe as it's spread they told me they don't know if it is or isn't cancer it can be and spread or it can be a really bad infection but from the way they gone ahead with everything so fast telling me it's the worst and it's cancer as time is not on my side as it's all ready spread in only 15 week from the first thing I got what I thought would be nothing and that's the cut on my lip then the lump then my neck lump but I well soon see I'm extremely anxious about it but i hope that I'm in good hands I keep you all updated when I have more information thanks

  • MW123
    MW123 Scope Member Posts: 1,184 Championing

    @ben2026

    Thank you so much for the update. I’m so sorry you’re going through all of this. It sounds incredibly painful, and it’s so hard when life is suddenly turned upside down by illness. I think you’re coping incredibly well, and I really hope the biopsy and scan bring some clear answers soon. Waiting for results is such a horrible, uncertain time. I’ll be thinking of you and hoping for the best in the days ahead, sending you strength. xx

  • ben2026
    ben2026 Online Community Member Posts: 26 Connected

    Thank you all update if anyone is still interested

    I had my scan today on my neck that took about 20 minutes for them to do the doctor did all my neck and keep going back to one of the place I been getting swollen up most when it started on my throat I never told him about it but I'm guessing he see something or more then likely the hospital had it on the notes but he push deep n abit hard there it's made it swollen up again and I feel pain ever time I drink or try to eat something that is alot harder now I have a my tongue and lip from biopsys my lip as been the painful one as got to stop it getting dry not as easy as you think when you had it on your mind and anything that go on it even a drink is painful lol fun days but joking aside I hope I get the results they did book it in for the 10th of next month but I'm hoping that because they did them a lot sooner then planned that the result be back before that as she z that it's more likely when on the phone today so I let you all know when I do but in the meantime if anyone as had cancer how did you deal with it as it gone now have you still got it are you like me waiting which is the unknown I fine hardest

    I know wm123 as deal with this and I wish her all the best in life btw I'm not sure if you did put it back down you still have it as it gone now and how you feeling now years later then when you 1st fine out about it all

    Wishing everyone all the best please all keep safe and enjoy life at it's fully