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 😩

Sadly in the U.K. , it’s a standard two week wait for the urgent breast clinic or more and they aim to start treatment within 4 weeks of biopsy results .

Im not sure if they are thinking IBC or not now as the radiographer said none of my symptoms were typical of IBC and that’s not what the scan was telling her . I think the surgeon was just trying to reassure me that if my treatment meant losing a breast then there’s hope etc , but yes it’s chemo , mastectomy and radiotherapy if it’s IBC . I’ll just have to see what the biopsy says 😩

I'm so sorry OP, I've been thinking of you and this was the update I didn't want to see. You will be looked after well now. Please update us if you like, there are so many well wishers here for you ❤️

https://breastcancernow.org/

You might find this website helpful

I am so sorry to hear your news OP. I can't imagine how you are feeling right now. It must be incredibly overwhelming. We are all behind you and sending you lots of positive thoughts ✨️

I couldn’t fault how lovely everyone was in the clinic , when I cried like a baby while the radiographer pointed out the images she said “and this is why you are here , we are going to look after you “
They were all so lovely , I’ve got the Breast Nurses phone number and she said I can call them anytime . I kept banging on about missing my routine mammogram in October and the Breast Nurse said that’s in the past , the main thing is you are here now .. she was lovely and said it could be that the inflated boob and pain was actually the new HRT I switched to but it was a good job I listened to my body and was checked out as otherwise they wouldn’t have picked it up
Breast surgeon said please do not worry this is very treatable .. I’m just hanging onto that

I am so glad they were so kind.

Breast surgeon said please do not worry this is very treatable .. I’m just hanging onto that That sounds very positive 💗

@Scarletrunner Yes I’ve been on that site , I was told to avoid Google and that if I wanted to look for info it was very helpful , it was the breast nurses line on there I called last week x

@HappierTimesAhead They said the areas of calicification suggest early cancer and the Consultant Radiograoher said they tend to see this with DCIS so I’m hoping that’s the case x

I’m sorry op. I don’t know if it varies by trust but at mine they bring in the consultant as soon as they confirm they need to do a biopsy but I had a similar sinking feeling when the ultrasound nurse fetched the consultant. Mine was slightly different to yours in that they weren’t sure if my lump was cancer until they got biopsy results and because I was young they didn’t do a mammogram until they confirmed it was cancer at which point they found a second lump.

it’s very hard but it’s best not to google now and just listen to the doctors. I found it very tough because I wanted to understand all the next steps and what order they were likely to happen in as soon as I was diagnosed but then I found it very distressing when what doctors told me was next wasn’t what I’d read online or what doctor/nurse had previously said was LIKELY to happen. The fact is the next steps are determined by the results of all the tests you don’t yet have. So initially that’s confirming if both the areas of concern are cancer, what hormones the cancer responds to and whether the biopsy shows cancer in the lymph node and you might need an MRI to see if any more lymph nodes look dodgy which might then trigger a CT scan or other tests if it does. they will use this to determine whether you need chemo radio or surgery first. If you need surgery first (most common) they will use the results from surgery to determine what further treatment you need and whilst the biopsies and scans gave me some results it’s this lab analysis that’s considered “proper results day”. For me that’s taking 4 weeks post surgery but they said it’s normally faster it’s just summer holidays getting in the way.

From the biopsies they were able to tell me what type of cancer I have (had?) and that they advised masectomy because I had two tumours. I have been advised by breast cancer nurse that I am likely to have chemo because I am very young but it’s not 100% sure until results are back. My lymph node biopsy came back clear but they removed one during surgery and it will be whether this is also clear which confirms whether or not it has gone into lymph nodes at all.

good luck op. Everyone’s journey on this is different and treatment changes so much so quickly that if someone tells you they did x for them it doesn’t mean they will do same for you even if it’s same type of cancer.

I am so sorry to hear your update.

I wish you all the very best, with your treatment.

I came back on mumsnet especially to see how you got on OP. I’m so so sorry it wasn’t the outcome you wanted. Repeat to yourself time and time again what you’ve been told - “this is treatable, this is treatable, this is treatable”

best of luck and keep us updated 💐

Hey OP,
I don’t know if you remember me up thread? I had an infection that lead to a mid-diagnosis of inflammatory BC, which turned out to be DCIS.

Im sorry that you’re on this journey, but please be comforted, it’s not the worst in the world.

I had four children under 7 when I was diagnosed, and the soreness really helped with the story arc for their understanding- mummy was in pain and now the doctors will make it better.

I don’t know how old your kids are?

Be aware that every bugger knows someone that’s died of cancer, and they will be pleased to tell you and your kids about it.

I always saw it as a form of empathy, but it freaked the kids out no end.

No chemo for me, just bi-lateral mastectomy, diep flap reconstruction, radiotherapy. Very manageable.

I hope your journey is as easy as mine x

I don't know if you are considering reconstruction but if not please look at Flat Friends UK which is a charity for women living without reconstruction. Facebook and instagram.

I’m sorry you are in the thick of it too - I remember you saying they weren’t sure so it must have been a shock to get the results . 😩

Yes they held back my scan , one minute it was being done by the radiographer , next it was done by the consultant radiographer , I knew then it wasn’t something innocent when she brought the biopsy trolley in . They’d already done two sets of mammogram pictures and spent ages studying them , I watched everyone in the waiting room who came in after me from mammograms go in for their scans before me .
Then when I went into see the breast surgeon she was looking serious and there were two nurses in there plus the breast nurse . I actually felt dizzy as I knew what it meant .
Im not googling at all .. I’m not looking at anything . Right now I don’t know what cancer I’m dealing with so it’s pointless- those punch biopsies are a killer though ! I’m on blood thinners so it wasn’t a pretty sight ! My boob is currently ten times bigger , covered in dressings and bright purple 🙈
Im hoping you get your treatment plan soon so you know what to prepare for x

I’m not thinking that far ahead yet as I don’t know what they plan to do until biopsy comes back x
Thank you for the link though x

I do remember you 😄 if you hadn’t had the infection you might not have known for a lot longer you had BC - how long is it since you were diagnosed ?
I can’t imagine how you felt with such young children but your explanation to them will have been reassuring that mummy was going to get better .
my youngest is 14 and had a bone tumour herself abc years of treatment from which she still hadn’t had the all clear so I’m really worried how she’ll take the news as dad died of cancer in April and DM has cancer .. cancer seems to be our family story at the moment .
whats a DIEP if you don’t mind me asking ?

Op, I've been following your thread but haven't commented until now. If it it DCIS, then I have a positive experience. 22 years ago, my mum had symptoms, which she ignored for months. She was diagnosed with DCIS. 22 years on, she's still here, fit, and well. She was treated at the time and has since had no further problems. I wish you all the best. I hope you get your treatment plan and biopsy results very soon.

Thank you for sharing - That is a positive story and I’m glad your mum is still here x

Im hoping to god it’s not an invasive or aggressive cancer but I had such obvious symptoms it feels like it can’t be early

The bizarre thing is since all the biopsies my swollen boob actually looks ok today apart from swelling round the biopsy area and I’ve no pain where I had it before !

Not every breast cancer needs chemotherapy to shrink the tumour.If the tumour is small often people have a lumpectomy and often 5 days of radiotherapy.

Hey OP, I was diagnosed in June 22, finished treatment in March 23.

My gosh! You have been on the cancer journey for years then….you already have a back bone made of steel I see.

You know pebble theory? That if you drop a pebble in a bucket the waves hit everyone else harder? The pebble just does what it does, it’s the people closest to the pebble getting buffeted.

(I’m not explaining that right…)
I feel like you are now the pebble, except you don’t get to be the pebble, because you’re a mum, so you still have to work at protecting everyone around you.
Do you have support IRL?
Even if it’s just DICS, you’re gonna need support.

I know I’m rooting for you x

DIEP is the gold standard in reconstruction if you wanna use your own tissue. They’ve taken my stomach fat, hollowed out my boobs, and shoved it in there. It’s AMAZING! I’d rather not have had cancer, but given we’re here I’ll take the perky boobs.
(honestly, I don’t want to sound flippant, but it’s hard to convey a hand hold).

Oh - just to add, Birmingham women’s hospital has the only IBC clinic in the country, so if it is IBC you need to go there.

@JoBoJoBo I’m really hoping that’s the case x
I think she just wanted to get in there and reassure me that they could treat it and I didn’t have to end up with no boobs x

@warningsecurityguards

Yes it’s sadly felt like cancer has been a large part of my family life for a while , I didn’t expect to end up in the same boat so soon after my dads death from cancer .

Did you have IBC ? I hope you are currently well , the perky boobs and tummy tuck sound like one silver lining at least !
I hope it’s not IBC for me especially with the wait for results , we are 2.5 hours from Birmingham 🙈

If it’s Inflammatory Breast Cancer this is not true, a lumpectomy is never an option. Please don’t give incorrect information on things you clearly know nothing about. Other cancers like DCIS yes, what you say is true. OP is asking about IBC.

They seemed to suggest that they were not convinced it was inflammatory BC . When I stripped off for my mammogram the radiologist was surprised as she said looking at my referal she expected to see a swollen angry looking boob but it actually looked fine bar being slightly bigger than the other one (it had calmed down a bit ) She said there’s no redness and it doesn’t feel hot .
They couldn’t detect any lumps even with the 4d images but there are two areas of calcification in a classic pattern for malignancy and my axillary lymph node is swollen , so I think I’m looking at chemo without a doubt and probably mastectomy