Referred to wrong clinic

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

Parents Reply Children
  • Hi, I'm really sorry this has happened to you. It's awful having to wait again. If it helps to put your mind at rest a little bit- if they find anything things do happen quite fast from there. I had a scan on Saturday afternoon and a phonecall Monday at 9am. I had an ultrasound of my neck (GP can refer you for that). Mine shows what has been explained to me as a dark spot on my thyroid with lots of smaller light flecks. No blood supply that they can see... but classed as suspicious. Basically a small, solid mass on my thyroid. Been referred back to ENT. They looked at my collarbone and said it's just swollen, probably because of my thyroid. I'm quite relieved because even thyroid cancer is usually treatable. I would say that most of the stuff I found on google about collarbone lymph nodes just scared me and was unhelpful. For instance, one website said that it only swells in relation to cancer in the chest or abdomen. Obviously I cannot rule these things out but there is no sign of lymphodenopathy for me personally, so there must be other reasons why it can swell that people haven't written about online. I really everything goes OK for you - did ENT do any tests?

  • yes he did a ct scan the letter he sent back said i need to see a sarcoma doc to plan treatment .so did he know it was  bone cancer

  • the lump was a pea size 8 weeks ago it now 4 times the size and spreading other lumps are forming too and joining with the first. the are really painfull too

  • funny you should say that.it says on the letter that the ent sent me suspicious cancer of the sternoclavicular joint