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I likely have metastatic cancer

LizzieWales1990
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I have had the year from hell, it all started last November and my life has consisted of going back and forth to doctors. My GP thought me to be a hypochondriac I paid to see a private gastroenterologist yet he didn't pick up the problem. I then decided to get a private CT scan and it looks as though I had mets in my liver my lungs enlarged lymph nodes and ovarian cyst. They don't know the primary cancer site yet however the only place I haven't had scanned is my breasts. No lumps just chest pain. My symtoms started with crippling fatigue and bowel issues shortness of breath. I have to have a mammogram and an endoscopy however I don't even know what exactly is happening my GP is not telling me anything refuses to provide pain relief and the last appointment I have he honestly said "your not in pain" and "be gone with your women" as I left the office. I was literally so full of poop the CT scan couldn't really see inside my bowels. I wish one doctor had listened to me yet everyone would rather beleive me to be a hypochondriac than give me the benefit of the doubt until now. I obviously am not going to have a lot of time if I have mets on my lung and my liver whatever type of cancer this is. I am 31 and not ready to die but have to accept it is a possibility if not a sure thing. My bloods were off for a full year yet my GP still wouldn't listen. My GP surgery has tampered with my medical notes I only found this out at a and e when a doctor when through my notes with me. On the day I had the private CT scan I am listed for having a biopsy I have never had one in my life. They also diagnosed me with enlarged inguinal lymph nodes and a hernia which the CT scan picked up. I am on two week pathway to see a specialist and honestly do not know how much more I can take. If only one doctor had thought me worth testing on the NHS I wouldn't be in this awful position. I sometimes feel sucidie is the only option now. 

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    Hey Lizzie,

    Ten years ago I found myself with metastatic cancer. At the start of my cancer journey I too felt hopeless and helpless and let down. My cancer (the primary had been moderately aggressive breast cancer- Invasive Ductal Carcenoma) had spread throughout both of my lungs and my liver and further before anyone knew. I had been really tired and breathless and I felt that nobody was listening. 

    I wanted my whole life to live, but instead felt like I was being offered crumbs. It was a terrible and emotional time and so awful for my children and my family. I wanted to lash out at anyone who gave me sad eyes - and everyone did.

    It took me a long time to realise that, even with a metastatic diagnosis, there can sometimes be a long time between diagnosis and death. And, ten years on, and still stable (I hope) I am learning to live WITH my cancer. Although it is always there in the background, and I fully expect to need further help and treatment, I am starting to realise that it is the other stuff which isn't cancer that is the most important to me.

    Please take it easy and don't jump to conclusions too soon. Your medical team will be able to give you more advice and once a treatment plan is settled on I expect you will feel much safer and more reassured.

    I found it hard to trust my medical team, but I had no choice. I did question everything and was a complete pain in the proverbial quite a lot of the time.

    If it turns out to be metastatic cancer please do not despair. Treatments are improving very quickly for many types of cancer, and I like to picture it like "surfing on the wave of new treatments". My cancer might not be curable (yet) but it is treatable.

    If you want to add me as a friend you are welcome. I am not medically trained and cannot give advice, but I am always happy to chat about the things which I feel have helped me. Through my gp, my hospice (I reluctantly used them at the start (and they were fabulous!) but haven't needed their help recently), the hospital, the mental health services locally, psychologist etc I have learnt ways of tackling the trauma. It's like having a mini armoury of techniques whenever I start to panic.

    Please take it slow. And be ultra kind to yourself.

    Looking forward to chatting again. I hope this helps a little,

    Mary

    x

     

  • Hello Lizzie

    I am so very sorry to hear about all that you've been through over the past year and that now you're facing a possible diagnosis of metastatic cancer. I can't begin to imagine how lost and anxious you're feeling after struggling over the past year to feel heard by your GP. 

    It's good to hear that you are now waiting on an urgent appointment with a specialist and hopefully you will be seen very soon. It's understandable that until you have definitive answers about your diagnosis and the next steps that this is going to be a very difficult time and I want you to know that you're not alone. We're so glad that you reached out to connect with others here on the forum. 

    You mention that you sometimes feel as if suicide is the only option now. I think many people here will understand the repair that comes with facing a possible diagnosis such as you are. Do you have friends and/or family around you to support you Lizzie? Please do speak to them and let them know how you're feeling. If you find that the feelings become too much or you'd rather speak to someone in confidence then you can always pick up the phone to the Samaritans. They're available 24/7 and are always there to listen. 

    I also wanted to suggest that maybe you might want to give our team of nurses a call at some point ahead of your appointment. I'm sure they will be happy to talk things through with you and offer any advice or reassurance that they can as well as help you think about the kinds of questions you might want to ask at the appointment. If you'd like to chat with them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. Have a think about giving them a call. 

    Please know that you're welcome to post here anytime you feel the need to offload or to chat about how you're feeling. I'm sure that the community will do what they can to support you through this time. 

    Keep in touch Lizzie and let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

     

  • Offline in reply to mare

    Thank you for responding I feel a little more hopeful after reading your message. I am in a purgatory hell at the moment but I will at least have answers soon. The sad eyes have already started with me and I have noticed friends and even family just don't know what to say. I will add you as a friend on here.

    Lizzie x

  • Offline in reply to LizzieWales1990

    Hi again Lizzie,

    I've sent you a friend request.

    I think Moderator Jenn is very sensible reminding you that it is only a possible diagnosis and that you should be seen very soon. I will keep everything crossed for you that it turns out to be better than expected.

    I used all the help lines I could find to begin with. Jenn's advice on that is spot on too. And although it is difficult to share things, I found it best in my case to allow my family in a bit - that way they were able to feel they were being useful to me and they felt less helpless themselves. The help lines were great as I was free of the worry about upsetting them, I could just be honest.

    I'm around to chat most days and I will check back on here frequently in the next day or two.

    In the mean time, take care of yourself. I'm sending virtual hugs. And definitely do reach out if you need to.

    Huge hugs,

    Mary

    xxx

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