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 said this and the two week referral target got dropped last September. (Even my gp didn’t know this!). The targets are now between referall and starting treatment.

i almost went private to but decided not to because biopsy was thousands. I’m glad I didn’t in the end because on the first day they said probably not cancer but let’s biopsy just in case and it was cancer for me.

Hi OP,

I had this - massive hot swelling boob. Took two rounds of antibiotics to clear it, it was excruciating. I was also referred to the breast clinic, but as I was 41, I didn’t really worry about it. Wasn’t on the two week wait, took about a month from referral to diagnosis.
They also thought inflammatory BC, but it was DCIS (so stage 0 and some stage 1).

It was a complete shock. TBH the infection probably saved me. We caught it so early.

One mastectomy and reconstruction later and I’m hoping to live for another 40 years.

So while the infection is bad….it might actually be good. I’ll keep you in my thoughts x

OP I’m so sorry you’re going through this. i have been there and had to wait about 3 weeks with a swollen boob with dimpling. My GP also visibly panicked when she saw it which wasn’t helpful but it did clear up and I didn’t have BC.

I live in Cornwall and the private healthcare option we have is very poor. Apart from an MRI - we can book the NHS scanner for about £500 within 7 days if we’re private but if you’re NHS you have to wait for months because there’s “no availability” - even though it’s the same machine!!

We don’t even have any access to private GP’s. Or any private paediatric care.

Hugs and handholding because not everywhere has adequate NHS or Private and it sucks!

Oh op I'm sorry you're going through this.

I recently had a similar scare, in that all my symptoms could not have been anything else but the worst, according to NHS site, Mayo Clinic, Dr Google generally etc. I literally ticked all the "common symptoms of X" boxes and I just felt like I knew it was going to be a terrible diagnosis.

It wasn't the worst. Even the consultant acknowledged that he could understand why I was in a state as he agreed symptoms were 100% typical of what I, and he, suspected.

He said something that's stuck with me - all the studies and stats in the world do not account for the fact that every single human body can act different and can do odd things.

Sending my best wishes op. I know how agonising the wait is xx

You are about the age I was when I had my first papilloma.

I grew an enormous hard lump over a couple of days, nipple all but vanished and I went up a cup size. It was incredibly painful.

The breast clinic drained nearly 100ml of fluid from around it there and then which was a huge relief from the pain and then biopsied the complex cyst. Biopsies were benign but I was scheduled for removal to be 100% sure.

I’m so sorry yours was cancer - my friend had DCIS and had a lumpectomy and radiotherapy and I’d still well three years later . It’s so frightening to get that news though , thank goodness you got an infection otherwise might not have picked it up.
Bizarrely there’s no evidence of infection , it’s not hot or red , there’s no rash .. it just looks like a breastfeeding boob ! It’s bigger , fuller , the areola is bigger . It’s sore on the outer side where the lump is and feels firm around the areola . My boob feels tender and heavy and the nipple feels sore like I’m in the throes of breastfeeding a ravenous newborn while my other boob looks like it’s had enough of 52 years and five babies and resembles a balloon three days after a party 🤣

That sounds alarming , I’ve definitely gone up a cup size , I’m having to wear a bralette as I can’t get into my usual bra .. it is sore near my armpit too which worries me

@Trurotulips I have a friend in Truro and she says the same about healthcare there as you are very much limited to Truro hospital , I’m glad yours was not anything worrying x.

I’m in the S West - Getting to London isn’t an easy option sadly as I have dcs in school /college who have to be driven there , so I’d need to go alone and I couldn’t face bad news on my own x

Yes I’m all prepared to have a biopsy and be looking into August for my results . What were your results ?

@Megifer yep I’m trying to stay off Google ! It’s just the worst ! Everything I’m reading is pointing to an aggressive cancer that’s spread , Not helpful at all !

@Rockschooldropout OK I totally understand.

Good luck. X

@Droolylabradors It’s 8 days to my nhs one now so I’m wondering if I’d even get an appointment this week and if I did is there any point as I’ll need a biopsy which I can’t afford anyway

@aodirjjd ahh sorry I saw your other post that yours was cancer , have you recovered ?
When I asked about the 2ww timeline the booking clerk said it’s actually up to a six week wait now and that I’d got quite a quick appointment 🙄

I’m currently healing up from masectomy whilst the lab analyses tumour and then will decide next steps. So probably still a chunk to go till I’m recovered but it’s moving.

My timeline btw was gp 17th April, breast appt 13th may, biopsy results 22nd may and masectomy 4th July but between first biopsy results and 4th July I had: MRI, a weeks holiday, another ultrasound and 3 more biopsy’s, oh and a mammogram and a genetics test (results still pending).

they did originally tell me the mastectomy would be end of July so I am glad it’s moved quicker than that.

im so sorry you are going through this. There is a tumour called a Phyllodes tumour which can grow very quickly, can suddenly appear from nowhere and can cause the breast to enlarge/ become misshapen as the tumour grows. They also present as a lump. They are very rare and most are benign but they can become huge. I am thinking of you as the wait can be horrendous.

its reassuring I guess to see they didn’t hang around once you had a diagnosis - so sorry you are going through this x
Have they offered you a reconstruction at this point ?

I’ve read about those , but my lump isn’t smooth and round . Gp said it was ill defined and feels like a malignant tumour , she’s actually put that on my referal 😩

The biopsy and the radiotherapy are not done on the same day.As a BC PT I had a second mammogram and a core biopsy on the same day.The biopsy sample is sent away and results can take over 10 days.

Im sorry I don’t have any additional advice to what others have said but sending

I’ve tried every private place going - no one has anything before next week , which is when my nhs app is .. it’s been a week since I went to the gp and I’ve barely slept .. think I’ll be on the verge of collapse by the time I’m seen next week . I’m just hoping to god they don’t cancel my appointment. It seems this week is the week all the consultant in the country have gone on holiday 🙈

It was! But a totally benign condition if painful and annoying.

Hoping whatever is behind yours is equally benign.

well I had two different opinions. I signed up for masectomy being told I’d get masectomy and reconstruction at same time by a surgeon who was covering for mine. Great.

Then a week before op had another appt with my actual surgeon where they said I’d signed up for masectomy without reconstruction. When I spoke up and said that’s not what I’d agreed to he said reconstruction wasn’t easily doable for me because I’m to skinny for one type of reconstruction and my boobs are to small for the other type (which was humiliating). He said it also wasnt a good idea for me to get it done at same time anyway because it would delay “further treatments” (basically you can’t start chemo or radio until you’re healed from surgery and recovery from reconstruction takes longer).

I can get reconstruction later apparently but it’s something to look at after chemo and has a two year waiting list and he’s told me I should “manage my expectations” as on how it would look and was obviously suggesting I shouldn’t do it All in all a bit shit tbh but I’m trying to forget about it till I’m further down the line. I am hoping I get to speak to a different surgeon when the reconstruction conversation happens because my current surgeon is a terrible communicator.

But honestly op you are jumping 5 steps ahead when you might not have cancer. The gp was right to refer you but that doesn’t mean you definitely have it. Focus on the appt it’s not to long now.