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Not Being Listened to and absolutely exhausted with no answers.

Scousebattler
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Hello Everyone,

First time I have ever posted on such a forum but I am at my wits end and desperate to feel listened to and get help. Since April 2021 I have had squeezing pain behind my left breast and chest wall and stabbing pain behind my left shoulder blade between my spine. This can catch me by surprise and leave me breathless when I exhale. I was originally incorrectly diagnosed with costochondritis and then spent the next year ruling cardiac causes out though they did find a mildly dilated aortic root. This pain has since moved into my left shoulder and my right breast with swollen lymph nodes under my breasts and in my armpit. I feel I have a malignancy at this point but my GP and Doctors are no longer listening to me and do not understand the gravity of my situation. I have not been able to sleep laying flat on my back for the past 2 weeks due to this stabbing pain and I have gone from running marathons to not being able to run around the block without provoking squeezing or aching pain. I am also having crazy muscle spasms and hand palsies.I am 40 and young and try to stay active but I feel this is working against me with my interactions with medical professionals. I have been to a and e 8 times and had multiple GP appointments who are not giving me answers to my very obvious symptoms. I am being condescended to and patronised and not being listened to at all. My Bloods are all coming back fine which is a good sign but things such as Lung Cancer, Bone Cancer, Sarcoma or Lymphoma can show normal bloods. 

I was recently referred to a breast clinic to assess the lumps in my breast and the technician stated 'I know what you mean' when i directed her to the lump location but said 'I dont think its cancer' and did not do any biopsy. Upon going back to the Dr this comment was not relayed and the Dr despite agreeing before the ultrasound that he could feel definite lumps appeared to take a more defensive view of my condition. Both my breasts have lumps that are throbbing but they are not telling me why this is. I also have unexplained bruising, muscle atrophy and red spots on my trunk as well as headaches and pulsatile tinnitis but again noone is listening. Remember this was only atypical chest pain 3 years ago. It is progressive and nefarious and causes me constant pain and discomfort.

I have recently been referred to the vague symptom clinic who do look for malignancy however despite no examination they called and said we dont think you have a malignancy based on your history and notes. I have appealed this decision as I need at least an examination and answers however I am really scared that my condition is advanced and Im not sure what else I can do. I have paid for my own scans to no avail but I am being met with resistance when trying to explain my concerns or get answers to questions such as what is causing the bruising. I am worried at this point I will have a stroke or heart attack soon if i do not get help.

I just needed to vent here and open to advice from anyone.

Thanks for reading.

  • Welcome to the forum Scousebattler although I'm really sorry to read what you're contending with and what you have been through.

    I can't even begin to imagine how stressful and frustrating this time has been for you, but I really do hope writing everything down has helped somewhat and I will have my fingers crossed that the  clinic will reverse their decision so you're finally able to get a step closer to some much needed answers and peace of mind.

    We have a lot of members who have found themselves in similar situations, so you are not alone, and hopefully some of them will stop by soon to offer their support and advice.

    If you'd like to talk any of this through with one of our nurses, you can do so on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Offline

    Hi 

    I’m sorry you’re having this experience. I’m not medical, so can’t offer any help on that, but I can empathise with you.  Up till 12 months ago I could count on one hand how many times I’d seen my GP + had never been to a hospital except when my children were born. However, the last 12 months have felt like I have a season ticket to GP!  Started with left abdo pain + bloating, bloods all OK (bit low in iron), no offer of referral. Finally paid for private CT/colonoscopy and (happily)found only a polyp which was removed. Pain subsided, bloating intermittent with some indigestion. Back to GP - still no referral for investigation. Then locum gave me HRT which I took for 2-2.5 months till developed swelling front armpit/pain breast. Was referred to Breast clinic + had full works (mammo/ultrasound/examination) again, thankfully OK. Stopped HRT + swelling settled (have since been told shouldn’t have been given the HRT I was as it’s only recommended for post NOT peri menopausal women (so ? caused the breast issues). Then low back pain which I’ve had on + off for long time flared up and is on-going, affecting hip too. Another trip to GP - now having physio (flexibility improved, pain hasn’t) Next pain neck/globus, which I’ve to take anti-inflammatory and go back in month. Asked if could thyroid, but told bloods months ago were OK! Last week has seen altered sensation in one thigh!  Frankly fed up feeling like a fraud/hypochondriac!  
    Anyways, my long winded point is - I’m wondering if it’s all hormones and menopause. I know you’re younger at 40, but does happen. I’m older at 54 (so having to now have womb/ovaries checked before new GP will give me HRT as apparently I’m bit old to still be in perimenopause!). Definitely keep going back to GP, even though it’s frustrating, but maybe it’s worth bringing it up just in case.  
    Oh & don’t Google - I’ve lost track of the sleepless nights it’s given me. Now I’m just trying to get my GP to explore all avenues and try to trust in their knowledge.

    You are not alone in feeling frustrated and fearful, however every clear test is a positive thing.  Good luck and keep us updated.

    xxx

  • Offline in reply to CLCAC

    Hello All.

    Thanks for the replies. Just for the record I am a 40 year old male. Today I woke up to a swollen mass in my right cheek. I went to the Doctor who gave me antibiotics and to come back after 7 days. I am quite certain that this is a swollen lymph node  just under my ear and due to my ongoing issues am pretty certain I have advanced cancer which is likely bronchus or a lymphoma at this point despite what all the doctors are saying (and there have been quite a few). I know my body and I have struggled in pain with this progressive issue for 3 years.My GP is unsure why I dont feel solace in the fact my tests come back clear and the reason is because I am in chronic pain now daily and cant escape it. In all honesty Ive felt it was cancer for some time but noone is listening.  It feels like I am entering the end game. I am not sleeping right now as I have squeezing pain between my spine and shoulder blade and centre of chest when I lie flat and have the worse temple headaches and muscle spasms I have ever encountered. I also have throbbing lymph nodes in my chest and armpits. I really dont know what to do as it fees I will have a heart attack or stroke if something isnt done soon. I have pulsatile tinnitus in my left ear. It is day 3 of the antibiotics and the mass is unaffected from taking them. Due to the repeated appointments and tests, at this point doctors are just reading previous notes with all clears and I have no idea how to feel listened to about this as I know some cancers show clear bloods until much later if at all. I have approached Pals and received no reply and written to my GP practice manager twice. I am waiting for a reply from the third letter to them but in the meantime if I head to A and E I am sure they will just brush me off again. This is something I just cant get past as it is progressively worsening. I really am feeling scared and desperate right now and I am not sure what to do. I was referred to the cancer vague symptom clinic last month who reviewed my scans but they also said they dont feel I have it. I just think someone has missed something in this. For me it feels obvious and there are clinical signs, I just feel these are being ignored. Originally this was just atypical chest pain behind my left chest wall. The fact it has moved into my left arm which i can hardly raise, my back which is constantly painful, my neck which is stiff and my head with temple splitting thunderclap headaches and now a swollen cheek on the opposite side is beyond belief in the lack of concern or urgency being shown.

    Thanks for reading.

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