Possible inflammatory breast cancer - clinic app not for over two weeks

[Rockschooldropout]

I posted on Monday about this in another section but now I’m really stressing .
I went to the gp on Monday as my left breast swelled up almost overnight and became very tender to the touch , especially around the nipple area . The areola looks bigger and a little red . She said she thought she could feel a lump in the areola too and immediately referred me to the breast clinic. I called today but with my hospital the clinic don’t deal with appointments and you have to ring a central booking line .
The booking line gave me an appointment which isn’t until 23rd July . I asked about cancellations and they said they don’t have a cancel list as they are just the booking line
Rang clinic again who said nothing they can do as they don’t deal with that side of things .
I went back to my gp today to ask if maybe anti biotics in the meantime would help and she said it was unlikely as she believes I have inflammatory Breast cancer - I’m now beside myself with worry as I believe it’s very aggressive and can spread quickly .. and I don’t know what to do .
I could go private but so can’t afford the biopsy which she said I’ll likely need .
it will be 16 days from referal by the time I’m seen and I’m worried it’s too long 😩

No you’re meant to be honest with the patient.
Falsely reassuring a pt is incredible unethical.

potentially it could have been phrased better, but being honest about your expected diagnosis or most likely diagnosis is important.

Has your friend recovered ? X

The duty of candour doesn’t extend to speculating though, which is what this GP did surely? The GP cannot visually diagnose IBC. It is not her job to, and it is not possible to. To tell OP it isn’t cancer would be unethical, yes, because it might be. But once OP had been assessed as suitable for 2 week pathway, is speculating as to the relative likelihood appropriate?

The NHS 2 week info sheet says 2 week referral does not necessarily mean cancer.

Fair enough I’m not a GP so if GPs (as you may be) are saying this is good practice to make that comment I’ll stand corrected but it’s obvious the impact it has had on the OP, who may well not have cancer.

I know ! I was a bit taken about tbh as I expected her to say oh it’s probably nothing to worry about , but instead seemed very grave . I was in bits when I got home . I’m glad your DH had been able to reassure you x

@UncharteredWaters I’m an ex nurse and appreciate honesty .. it was just a bit TOO honest .. and no oh it could be nothing reassurances

My local Spire doesn’t have anything until 22nd but I’m wondering whether to call and see if they have anything sooner

Hello there, I'm currently on my 4th 2 week wait for the breast clinic in 3 years. I keep getting mastitis (non-lactational) which mimics the symptoms of IBC. My last episode was in march and despite getting to the drs as soon as my symptoms started and getting antibiotics I still ended up admitted to hospital on IV abx as my boob was not responding to the oral abx.
I would be worried that you haven't been prescribed any because obviously if it's an infection it needs treating and if it does respond it's unlikely to be IBC
So sorry you are going through this. I hope it all turns out ok 💐

I’m so sorry you lost your mum 😢 that must make waiting for the appointment all the more worrying - fingers crossed for you x
My dad died of cancer in April
and my mum had stage 4 lymphoma which doesn’t help my anxiety

I should say my last episode before this one!

@Wren77 That’s awful
, do they know why you keep getting it ? I’ve no redness but the areola looks a bit redder and slighter bigger and my boob is about a size bigger with prominent veins and a tender nipple .. it looks like a breastfeeding boob !
she did give me some anti biotics but seemed gloomy about it and not hopeful

@Notthatcatagain I’m sorry you’ve been through the cancer wringer - how are you now ?

Yes I've had mastitis twice and I'm in my 60s so also prescribed immediate antibiotic. I'm surprised GP didn't give OP any in case it was that. Most odd. Also put on 2WW just to check it out too.

I would.

@Rockschooldropout do you have any other private hospitals nearby? We have Spire, Circle and Nuffield near us. Might be worth looking elsewhere?

I'm hoping I get some answers this time as I was so relieved last time I forgot to ask but there is this thing called granulomatous mastitis which is a chronic boob thing which I mentioned to the consultant when I was in hospital which he seemed to think was a possibility - but it never got mentioned again
Just to say, I went back to the drs after a couple of days last time as the redness spread across my entire boob and up to my armpit (v painful!) and oral abx just couldn't fix it.
Its such an awful wait, especially with the unhelpful dr's comments.

Yes she has. I’ll be honest it was a rough road of chemo to shrink the cancer, then surgery to remove it, followed by radiotherapy then reconstruction surgery, and some ongoing meds for 5 years. But she’s been cancer free for over 7 years now and seen 3 grandchildren born that time, something which at diagnosis she didn’t think would be possible ❤

Sadly not within a close vicinity that offer breast screening - I live quite rurally . I checked the Nuffield but the nearest ones don’t offer a breast clinic

@Wren77 it sounds awful and so painful 😰

@YnyshirGal I’m so glad to hear she’s still here , it sounds like it was a gruelling time for her - I hope she continues to remain well and enjoy those lovely grandchildren x

It was tough for the treatment period but she says it feels like a different life now. I think IBC is so scary due to how aggressive it is, but like I said, in my experience the NHS get even more so straight on it for that very reason X

I went through similar OP (referral to breast clinic for suspected IBC). There's a UK based IBC Facebook group, can't remember it's name but I remember the 'owner' being quite helpful (if a little brusque!) when I was having difficulties with the 2 week referral pathway. Might be worth looking her/ the group up.

Happily mine turned out to be a non-cancerous condition. I hope you have a similar outcome!

For what it's worth I think your GP is speaking out of turn. IBC is very rare, many GPs won't see a case in their whole career, unless she has a background in oncology or something I highly doubt she has the experience to give a preliminary diagnosis like that.

I can appreciate your concern OP, but I'd be careful about going down the private route. We did this when DH was diagnosed with a heart condition and the NHS wait took forever. We found that the initial tests happened quickly following the initial consult, but the treatment he needed was only available on the NHS and it took forever for the NHS to move him across as a active patient. Truthfully we wasted nearly £7k on tests that didn't speed the process up at all.

I hope you get good news.

It definitely that which scares me - not that any cancer diagnosis is good but the thought of this is very daunting , my go has terrified me

@LizzieBennett73 oh god that’s demoralising 😰 I must admit I had to go private to get a serious heart condition diagnosed - thankfully I only need to be monitored for now but the private consultant I’m under is also the nhs consultant at my local hospital, so I will need open heart surgery one day and hopefully the transfer to the nhs won’t be awful … Although that’s the least of my worries right now .. I think I’ll hold out for the NHS one as at least I’ll be in the system if diagnosed

@MargotEmin what were your symptoms if you don’t mind me asking ?
I do agree about my gp ..