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Referred to wrong clinic

joyce.a88
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Good morning

I recently made a post about a swelling on my left superclavicular area and how I felt I was being incorrectly referred to the breast clinic but didn't speak up at my GP apptmt. I was right. Breast surgeon was sort of mean to me and said go back to my GP as necks are not his area of expertise. No checks were done other than to confirm the lump. Waited all week for his letter to be put on my medical records app and it wasn't so on Friday I saw the nurse at the practise (due to the degree of urgency with these things) and she was dismissive also. Couldn't understand why no follow up by the breast clinic  did confirm there is a lump but basically told me to stop calling it that and said it's more of a swelling. She's made a referral for an ultrasound. I forgot to ask how long it will take but today the doc has been uploaded and it says within 3 months and she's picked the box to not give me the findings at the end of the appointment. I've never bothered to check my records before... is this normal? I struggle socially - would it be rude to ask for this to be done urgently considering it's a 2 month old unusual swelling in a place than can be an indication of cancer? I'm worried as it's now affecting my swallowing as it tugs my throat downwards. Also when you search swollen superclavicular area it looks exactly like everyone's photos of lymphoma. I have other symptoms. How much pressure can you put on the GP surgery without coming across unhinged? I want to be an advocate for myself but my anxiety let's me down. I didn't want to say during the nurse appointment but jugular problems can also present in this area in people with vascular ehlers danlos syndrome which I have. I was doubting myself after the breast surgeon basically made fun of me for using a wheelchair when I can transfer on my own. He said "how curious it is that everyone has ehlers danlos now and years ago I never met anyone with it". I was diagnosed by genetic testing after a uterine hemmorhage and being treated all my life for a hemmorhagic bladder. I need to not let people get to me but I have internalised ableism after losing my relatively good health. Now I just go along with what they say in order to not be a burden.

I feel like my options are...

Wait the three months

or

call and ask for a second, second opinion on what to do about the lump. Sorry  swelling. Potentially come across as a 'Karen' or hypochondriac.

Is there another option I'm not seeing?

Thank you for any advice.

Siobhan

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    BTW this is the note on my file "2/12 history of swelling to left supraclavicular region – non-tender, no redness, no obvious lump, more of a swelling – was referred to breast clinic in view of FH however advised inappropriate referral there hence referred for USS - ? cause ? pathology". By no obvious lump, the "swelling is firm and feels like a half a hard boiled egg on my collarbone area.

  • Offline in reply to joyce.a88

    Hello joyce.a88, and no, you are not being a 'Karen' or a Hypochondriac.  You should definitely ask for a second opinion.  I know how hard it is when you are not the 'pushy' type and for whatever reason, you are unable to speak up for yourself.  Is there anyone that could advocate for you?  A friend or a family member?  Years ago when my sister had a lump the size of a small grape-fruit in her stomach, the doctor treating her was very dismissive.  Naturally we were all concerned that the lump might be cancerous, and on my sister's behalf, I had to practically demand this doctor to take my sister's condition seriously.  Thankfully, it turned out to be non-malignant.  I know it is easier said than done, but if there is no-one who can speak on your behalf, please don't be afraid of speaking up for yourself.  x 

  • Offline in reply to Blue-girl

    Thank you for this. It gave me the push I needed to call them yesterday and ask why it hadn't been done as urgent. The administrator said she would speak to the nurse and call me back. They never called back but I checked the app today and they've sent an email to radiology and marked it as urgent. Hopefully I'll have some answers soon! 

  • Offline in reply to Blue-girl

    Also things are difficult at the moment as my partner, and full time carer, has to stay outside with our dog who has separation anxiety. We agreed to take him for a family member at the end of lockdown and he is lovely but he howls when left alone. We have retired neighbours with no pets and it's antisocial to leave him. I will always work from home now so it isn't a problem unless things like this come up. My friends aren't local and my only other close family is my children. Going to appointments alone is making me realise how lonely I am and that I need to make more friends. If I am very unwell I'm getting a dog sitter for appointments.

  • Offline in reply to joyce.a88

    Hello Joyce.a88, I am so pleased that are chasing this up.  Well done!  Keep me informed, xx

  • Offline in reply to joyce.a88

    A Dog sitter is a good idea.  And I am so pleased that you are being taken seriously by your health care team, fingers crossed that everything will turn out well for you, sending hugs to you and your Doggy (I LOVE Animals), xx

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    I have my ultrasound on Saturday and I can't sleep I'm so worried. As the nurse ticked the box not to give me any results I won't be told anything which seems cruel to me. Is this normal? I also saw neurology this week as I started having seizures when I developed DVTs a short while ago. I was told I have post thrombotic syndrome now and the diagnosis of DVT is a lifelong one as my blood vessels are damaged. I was surprised she was helpful in this unrelated matter and asked if she could offer any advice re my neck. Apparently not but I've been referred for a scan in June to rule out any brain tumours because I have symptoms. I can't look in the mirror at all due to this swelling. If you Google "swelling left superclavicular area"  the photos all look the same as what I have and say metastatic cancer I'm terrified. I don't want to leave my partner and children. Im finally happy in my life and evsrything else is going so well. I just dont see what else this swelling could be. I am having more swallowing problems now and on the way back from that appointment we stopped for chips... my partner nearly had to do the heimlich on me in the middle of Bolton bus station because I was choking on a piece of chip. My entire chest feels like it's on fire at the moment. My family has now banned me from eating alone until this is resolved. The swelling is still not painful but now more lumpy and definitely slightly wider than it was. Any tips on how to take your mind off the wait?

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