Concerns of IBC - doctors ignoring symptoms

Hello all, 

This is a bit of a long and emotionally draining one so I apologise in advance… 

I developed left sided (only) breast pain back in 2023 and found a lump. Was referred to the breast clinic had an ultrasound done where the lump was not visible due to dense breast tissue, was told nothing concerning and discharged. Happy as ever to not hear anything sinister I left the clinic. Some time after that because the lump and pain didn’t go away I decided to contact my GP and ask that I get an answer as to what the lump and pain is - seeing as it’s nothing concerning. The breast clinic wouldn’t see me again as they falsified that they had done a mammogram which came back clear (they did not and a whole PALS complaint later they apologised for falsifying my medical record). I was referred to another breast clinic for a second opinion + a request for a mammogram. 

When I attended the clinic the consultant basically asked me why I’m there and that I had an ultrasound done and she will not be offering any more tests and that it was illegal for her to offer a mammogram to a woman of my age (I was 29 at the time). Needless to say I left the clinic in tears. 

Fast forward to 2024 (approx a year and a half after the pain began) it had still not gone away so I decided to contact the GP once more just to get some advice on why the pain isn’t going away. Was referred back to the breast clinic, had another ultrasound done was told normal changes in breast tissue and that sometimes pain is just normal and will likely die down after menopause. 

After that everything started moving pretty quickly. 

Not long after my appointment I found a lump in my throat (also on the left side) Ultrasound showed enlarged lymph node was told it should go away within 2/3 weeks - it’s been 7 months now it’s still there. 

In the last week another lump has popped up (also left side) this time much bigger in size on my collar bone. Made a GP appt to discuss this but haven’t actually been able to see them as yet. Ended up in a&e over the weekend due to a really bad faint episode was told liver & kidney function were ‘struggling’ and was put on IV fluids and referred for a USG of the new lump which I am due to have done tomorrow. 

Since being in a&e over the weekend I have now developed painful swollen lymph nodes under my left armpit and also there is clear change in the skin texture of the left breast (almost looks like old stretch marks, quite bumpy) 

It seems every other day something new is popping up. All on th same side. 

I feel like my general health also has deteriorated severely in the last few months. I am lethargic, have no appetite, having dizzy spells. My main concern is the extreme exhaustion. 

I poured my heart out to the doctors in a&e saying that I’m very concerned about cancer and that I feel nobody is taking me seriously and perhaps the pain that started back in 2023 was a warning sign that continued. 

They still seem to be disregarding this idea and instead are saying that sometimes, very rarely, they come across patients who just have unexplainable symptoms. 

I don’t know how to get them to listen or agree to do more tests anymore and I am exhausted for trying for the last two years. 

I am 31 years old, I have a young child and I am petrified. I just want to be told why I feel so awful, why my breast has hurt for so many years and why all these lumps seem to be popping up suddenly! 

Thank you in advance for getting this far! Any words of advice or wisdom are greatly appreciated. 

  • Hello Lola2025 and a warm welcome to our forum, 

    Poor you it's been a long time you have had to deal with this going back and forth to the breast clinic and not getting any proper answers - how frustrating it must be for you! It's incredible that they said you had done a mammogram when you hadn't you did well to complain and make sure this was rectified and I am glad they apologised to you. 

    All these new lumps popping up in your throat and collarbone must have really worried you. You should have had the ultrasound of the new lump by now. Did you find out anything new? You are having to deal with a lot of different symptoms and I can imagine this is affecting your quality of life and your wellbeing and you deserve some answers and a diagnosis. You must be exhausted by all this and I completely understand why you would want to know what is going on and it is important that you get to talk to someone who will reassure you or explain things to you in detail and also that they look into all these lumps that have suddenly appeared. I think it would be worth seeking yet another opinion, talking to a different GP or specialist even though you have seen many already but it's important to find a medical expert who will explain things to you and tell you exactly what is causing all these symptoms. There is information on our website on getting a second opinion

    I will now let members of our community say hello and share their words of wisdom with you! 

    Best wishes, 

    Lucie, Cancer Chat Moderator