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 😩

I'm sorry OP I have no experience in this but im bumping for you

Thank you - I’m beside myself with worry

Were you alone at the GP appointment? That seems an odd thing for a GP to say. If she actually believes that why did she leave it two days for you to ring a booking line?

16 days is only 2 days longer than the two week target for referrals. It feels like a long time but it's not that long. Did you ask the GP about the timeline?

It's one of those occasions that PALS at the hospital are there for. Contact them and it's likely that they will contact the people necessary to bring it forward if there is any possibility of doing so. If there is a particular consultant that you have been referred to, it may be possible to contact their secretary (some trusts still run this way) and explain - they may be able to get their consultant to agree to bring the appointment forward as well.

https://www.macmillan.org.uk/cancer-information-and-support/get-help/macmillan-support-line

Hi OP,
I'm currently awaiting an appointment in the breast clinic for a lump. My appointment is 16 days from referral, and I know the wait is agony. I don’t think there is much you can do sadly. Other recent posts have people who are having to wait a month or so in fact a few days ago one poster was told she wouldn’t even hear about her appointment until 25 July. Which is really really shit. Unfortunately though I don’t think there is much prospect of getting seen any sooner.
i really hope you get good news at your appointment 💐

I initially went on Monday - she put the referral in straight away and it came up on the NHS app advising if I hadn’t been called with an appointment by today to ring the booking line which I did .
I also went back to the gp today to get anti biotics in case by sone slim chance it was mastitis but unlikely given I’m 52 and that’s when she said she thought it was IBC .. I notice she had put that on the referal to

I know but my uunderstanding was you are “supposed “ to have an appointment within 14 days and IBC spreads very quickly so I’m worrying.. the booking line said most people are waiting up to 6 weeks

Very sorry you are having to go through this, OP. You don't need this stress.
I hope one of the suggestions works for you.
If not, I would just call them every couple of hours to see if there is a cancellation. People cancel appointments for all kinds of reasons.
Sending good wishes to you.

God it’s awful isn’t it 😩 I’m sorry you are going through this wait too .. I suppose I’d be slightly more chilled if it were just a little lump
but I know IBC is very aggressive and 16 days seems so long

I’d book a private breast consultant appointment. If you have a local Spire / Private Hospital contact them now. They will do deals for you if you’re paying outside private medical insurance — I got to see a breast consultant, got an ultrasound, and mammogram for 600£ and all within 24 hours.

The clinic won’t deal with appointments and the booking line said they don’t hold cancellation lists so I’m stuck with that date

I can offer some reassurance about the referral. Mine also says “likely to have cancer”, but it’s a screening tool to say you need to be on the 2 week pathway, and is put in the referral of everyone who needs the pathway. Checked with husband who is a doctor because i was beside myself when I saw that on mine. He wasn’t troubled by it because it’s standard on a 2w referral.

I suppose I could give that a go tomorrow - I looked at private but it’s the needle biopsy which is so expensive and then if the news isn’t good I’d have to ask to be refered back to the NHS which could delay things

@SpikeyDee Thanknyou - I know they have to say that to push the referal through but when she said to my face today that she thought it was IBC , my heart sank , I mean I appreciate her honesty but I felt a bit sick

Yes, I did understand that they don't have a cancellation list.

But I just thought you could keep calling the booking line to see if there was anything further forward.

IBC treatment is fast. The biopsy, mammogram and radiation treatment can be same day. And some private breast consultants even have direct routes to NHS referrals that bypass GPs. It in DH’s family and all of them went from private to nhs treatment within a few days.

I rang back later today when I asked about possible earlier app but she said the appointment is now booked for that date and they can’t help me further 😩

@Ozanj Thank you that’s worth knowing . I’ll probably have to stick with NHS as I looked at a few private places this evening and they don’t have anything earlier than the NHS

Your reaction is totally understandable. She should not have said that (especially as she cannot actually say with whether you have IBC or not). I thought GPs were actually meant to reassure the patient that a two week referral does not mean cancer and she has done the opposite and made the wait even worse for you. I really feel for you 💐

2 days won't make much difference overall. This may just be an initial meeting with the doctor who will talk about treatment options and get you booked in for the tests. It might be an all in one appointment where they actually do biopsy on the day but don't count on it. My experience of cancer treatment was that it involved a lot of waiting and watching the calendar and brief spaces of treatment. Looking back of course everything was done in good time but when you are the one watching that calendar, it feels like a lifetime

I'm really sorry to hear that. My mother unfortunately died of IBC (sorry I'm sure that's not what you wanted to hear) and as you said, it's a particularly aggressive form of cancer. I hope you get the news you're looking for x

Just to say my best friend was diagnosed with IBC 8 years ago and yes it’s aggressive, and yes the wait for the initial referral to diagnosis appointment felt like forever, but once diagnosed they had her in treatment within 5 days. The NHS does not hang about.

I hope you get a completely boring non IBC diagnosis, but please be reassured that if it is, they’ll be all over it x

That is disappointing, OP.
Hoping that everything moves very quickly from when you get in and they take good care of you.