Respectfully asking for advice

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Hi all, 

Firstly, I’ve been reading this forum over the last couple of weeks and I am I awe of the strength and courage of everyone that posts. I can really see and feel the community here and I love how you all look out for and support one another. 

I hope I don’t offend anyone here - I don’t have a cancer diagnosis but I could really do with pulling on your experiences due to something of a journey of my own, albeit without any certainty. 

I have been diagnosed with hypercalcemia (following a blood test for tingling in the fingers)  and low sodium. I turned up at A and E one day knowing something wasnt quite right but not able to describe exactly how I felt. I also had experienced difficulty swallowing (no pain, just a feeling that food was an effort to get down). 

AandE doctors warned me that the combination of high calcium and low sodium could indicate cancer  furthermore, I had already been seeing a private consultant on a journey to diagnose primary hyperparathyroidism and she too had suggested cancer could be a possibility due to normal parathyroid hormone levels in my blood and normal calcium excretion in my urine (thus ruling primary hyperparathyroidism out). 

I was admitted to hospital as a result of the low sodium and I had  a CT scan of my chest, abdomen and pelvis which came back clear, as did a subsequent CT scan of the brain. The low sodium never returned to a normal level but has stabilised at around 132. I was in hospital for 12 days but they couldn’t tell me why my sodium was low at any point. 

I have constant tightness and pressure in the throat and neck so have also had a camera in my throat to look for cancer there and was also told I don’t have throat cancer - all good news so far, of course. 

However, aside from massive fatigue, weight loss and new, strange growths on my upper arms and a seeming reduced tolerance of direct sunlight on the hands and arms - all of which are very much present - I also have an intermittent deepish sounding wheeze when I breathe in. Today I have had this about 6 times - it typically happens when filling the lungs to capacity (not every time) but can sometimes occur on a standard breath in (again, far from every time). I also do have a whistle on exhale when forcing air out.

I just wondered respectfully whether anyone here had ever had any of these symptoms alongside a diagnosis. Given all of my symptoms, I’m genuinely concerned that they may have missed something on the CT scan and that lung cancer may actually be present. 

I am genuinely anxious and feel a million times worse than I did 3 months ago in general (especially energy levels which seem to decrease by the day). 

Has anyone had experience of my symptoms at all? Or had a tumour missed on an initial CT scan but identified on a subsequent scan? If so, how did you go about a diagnosis as I can tell medics are now just reading my anxiety and shutting down (as are some of the friends and family immediately around me). 

I’m going out of my mind at the uncertainty and as such, I would appreciate any help or advice anyone can offer. 

Thank you all for your time. 

  • Hi  sorry you have been feeling unwell, and I can see why you feel anxious with all the things that have been going on. No one here is medically trained so will be impossible for any of us to advise you as to what may be going on. We can only share our own experiences, so I will answer as best I can using my own experiences.

    Firstly low sodium can make you feel very unwell. My dad had low sodium which they believe was caused by an infection. It made him very tired and confused for quite some time, he was very poorly until his sodium levels increased. 

    My lung tumour was picked up on an X-ray, and was very clear on a Ct. I have several tiny tumours scattered throughout my lungs, and they appear very clearly on the Ct. 

    There are times when I get extremely anxious about my cancer, and I know how things can play on your mind, and how anxiety can make you feel worse than the disease itself. Anxiety can play tricks with your brain, and make you believe there are things going on with your body when there are not. When a scan is due I start to imagine all kinds of aches and pains are disease spread, but once I have the scan result these pains miraculously disappear. 

    I hope your doctor is working with you to help you with your anxiety. 

    “Try to be a rainbow, in somebody else's cloud” ~ Maya Angelou
    Chelle 

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  • Hi Chelle, 

    Thank you for the reply, it is appreciated. How are you doing and how is your journey going? 

    Understand there can be no diagnosis here, you’re right and be assured I am just looking for other’s experiences which I thank you for being so open about and sharing. 

    The more I read about Paraneoplastic Syndrome, how it affects the skin and endocrine system etc I think what I have may be that - either on its own or with a malignancy not yet diagnosed  I did read that PS often shows up early in disease progression, often with lung cancer and before it has been detected. Not sure whether that includes before it’s detectable.

    Will have to wait and see what happens next. In the meantime, I hope you’re okay and am keen to understand your story too. 

    All the best.  

  • Although I strongly disagree with doctor google, I did search Paraneoplastic Syndrome, which was quite clear in stating that this is due to cancer tumours that are already present in the body. 

    “Try to be a rainbow, in somebody else's cloud” ~ Maya Angelou
    Chelle 

    Community Champion badge
  • Well pointed out Chelle.

    My Paraneoplastic Syndrome (PNS) only appeared when it could no longer hold back my Small Cell Lung Cancer (SCLC).   

    I do wonder why PNS was introduce to the thread when it had not been raised by anyone earlier? 

    Strangely Redmist's style of writing/content is very reminiscent of someone called Patrick, who tried to engage people by pretending to have cancer.  Sadly I do despair at the increasing number of disingenuous/dubious posts appearing on here. I do wonder what the reason for this is; increasing hypochondria, mental illness or just plain old attention seeking? 

    Kegsy x

    "If you are going through hell, keep going" ; Sir Winston Churchill
    " Cancer may take my life; however it will not become my life" Kegsy August 2011
  • I agree, there have been a few lately, and it takes the help away from people who genuinely need it.  I do wish people would stop listening to doctor google and listened to their experienced and well trained doctors, who tell them they do not have cancer. They should be happy and go live their lives, instead of coming here and rubbing salt into peoples wounds. 
    I do feel sorry for genuine people who have health anxiety, but again here is not the correct place for them to gain the help they so obviously need. 

    “Try to be a rainbow, in somebody else's cloud” ~ Maya Angelou
    Chelle 

    Community Champion badge
  • I’m sorry, this was the last thing I wanted. Fully understood though and I’ll only return if I get an actual diagnosis at some point. 

    Apologies to everyone and anyone I offended - this was honestly the last thing I intended to do. 

    Best of luck to everyone on their journey. 

  • Hi Redmist,

    I am so sorry to read your story and sympathise immensely with what you are going through.

    i too am experiencing something similar however Paraneoplastic syndrome has already been suggested to me by the GI consultant I am under. 

    I too have a lot of unexplainable neurological symptoms as well as GI issues and as yet cancer has not been found (this is therefore not the right forum but I couldn’t pass by without sharing as I know just how awful this is). 

    I have been told I have a number of blood markers suggestive of cancer but as of yet they just can’t find it. I understand from my consultant Paraneoplastic syndrome can occur prior to a cancer being detected. There are blood tests that can be done to check for this and other syndromes. Sometimes the cancer can be so small that it can be difficult to detect. I would book an appointment with a neurologist.

    i have literally had everything checked and it is increasing hard when it is brushed off as anxiety etc which makes the battle even harder. Sending hugs and I hope you are further forward now x