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 😩

As a breast cancer s PT I am aware of the options thank you.Op said it is thought to be early cancer and awaiting biopsy results to ascertain what type of breast cancer she has .When a person is awaiting results we always think the worst.Talking to others who have gone through this journey can be helpful.Breast cancer now has a forum and may be more helpful than Mumsnet.Breast cancer now has fellow breast cancer patients and Breast nurses who can answer questions .

calcification doesn’t always mean mastectomy as calcification can be benign and happens a lot in women who are post menopausal and have breastfed. They will biopsy and advise but my advice to you now is not get ideas of what will “definitely” or even “probably” happen because it’s really disconcerting to have it change! I got told by a doctor who was not directly involved in my care I’d probably have a masectomy based on what I told her, then told by my surgeon I’d only need lumpectomy and then after some results by a different surgeon told I’d get masectomy with reconstruction and then finally I got told by my surgeon a week before surgery that I was signed up for a masectomy without reconstruction! I think I would have been better waiting till I had all biopsy and scan results and having the conversation for the first time with my surgeon rather than getting my head around 4 different scenarios, especially because each time I updated various family members and it’s exhausting.

Saying that I am being a bit of a hypocrite about that whilst I wait for the referral to see “if” I need chemo whilst googling wig information!

Thank you x I’m holding out for the worst case scenario

Bloody hell your head must have been in a whirl , what a sodding rollercoaster , the not knowing and the changing diagnosis just further adds to the anxiety 🙈 I hope your treatment going forward goes smoothly .

So I didn’t worry when she said calcifications , then she said they weren’t benign , it’s apparently the formation and pattern , she said it’s suggestive of malignancy . As they’ve given me the whole it’s most likely cancer and prepped me for the diagnosis I guess they are fairly certain but as you say .. I have no idea what treatment is going to look like so it’s impossible to second guess . It’s my birthday late August , I hope I can at least celebrate that !
and yes like you I’ve already googled wigs 🙈

I’m currently reducing down my hrt , horrible menopausal symptoms are kicking in .. that’s all I need 🙈

See below they do not believe it is inflammatory breast cancer.

Today is not a good day , just over a week until my results and I feel sick .. I’m terrified it’s stage 4 or at the least is aggressive or invasive . The thought of chemo terrifies me as I have a damaged heart.. Ive lost half a stone from worry and I’m a mess 😔 .

That sounds so hard, @Rockschooldropout. And having to come of HRT can't be helping.

Hold on to the fact that you won't feel this way forever.

I think the hrt come down is the worse thing at the moment ! I still haven’t told DCs as I feel I need to wait until
I can tell them something concrete like treatment plans etc

I’m hoping so - I just want to get those results and find out how they plan on treating it .. I’m more worried about how my poor heart will hold up

Rockschooldropout I'm so sorry you're going through this.

I've just got my appointment for Friday, fortunately for me it's only been a week since my doctor sent the referral.

Like you were and for similar reasons I'm convinced it's not going to be a happy outcome.

But I wanted to thankyou for describing your experience of your appointment.
It's the unknown that terrifies me so feel I know a bit better what to expect.

I'm dithering over whether to take someone with me.

I'm inclined to go alone because strangely I think I might be better alone rather than having someone fuss over me.

My DDs have each offered to come with me as has my husband and best friend.

I'm inclined to get a lift to the hospital rather than drive.

Personally I’d recommend have someone drive you there in case you need a biopsy as my boob was very sore afterwards and I couldn’t have driven .
I took a small cushion to put underthe seatbelt .

If you need further tests it’s a lot if waiting around but it seems you are pretty much told there and then if they think it’s benign or cancer . I took DH but once I’d had my mammogram, I was sent to a seperate waiting area where we all had gowns on so he wasn’t allowed to wait with me .
They did call him through when I had my scan and biopsy though .

Easier said than done but try not to worry , 9/10 referrals to the breast clinic turn out to be benign issues x

Thank you Rockschooldropout.

At the moment I'm finding it so difficult to hear people trying to reassure me it'll be fine.
I know they mean well but I just want to scream at them 😝

I've always read these kind of threads, never imagining they'd be so relevant to me.

Wishing you so much love and strength in the coming weeks

I totally get that and the honest answer is , no one knows if you will come away with a benign or cancer diagnosis , it’s easy for people to say .. oh don’t worry but unless they’ve endured the agony of the wait for this appointment, they won’t understand .
All I’ll say is .. most cases ARE something innocuous.. but in the event it isn’t .. you are being seen and you will be treated x I’m learning to take each day at a time

In a fun plot twist , I’ve had a text today to say my appointment next Monday , which is already three weeks from biopsy day .. has been cancelled .. such fun ! 🙈

Just had a call from the breast nurse , my appointment has been brought forward to tomorrow . She asked me to make sure I had someone with me .. Ughh

🙏🏻🙏🏻🙏🏻

Will be thinking of you

I saw your first post and thought it might be cancelled because it was happening sooner but didn’t want to say in case it wasn’t the case!

Nothing you can do tonight can change tomorrows outcome so just deal with it however you can.

Thank you ☺️ @drivinmecrazy @whateveryouwantmetosay
@aodirjjd I did wonder deep down if they were bringing my appointment forward , but was a bit bemused when the NHS app didn’t update . Turns out a letter was posted yesterday 🙄

so tomorrow I’ll know what shitty type of cancer I’m dealing with

I know you already know it’s cancer at this point but just as an fyi bringing your appt forward doesn’t necesssrily mean you have scarier results, it just means lab came back sooner than they thought. Same situation happened to me when it was relatively good news.

Wishing you the very best outcome tomorrow

Thank you ☺️

it’s two weeks yesterday since I had the biopsies so better timing really , I’ve been in a state all evening 🙈

So … it’s grade 2 IDC , axillary lymph node was clear ER- HER2 not back yet .
Because it’s quite large I’m told I’m most likely looking at mastectomy which I’m sort of at peace with tbh , I just want it gone .
Breast surgeon was lovely and said all the usuals about it being treatable etc but said I’m potentially looking at a year of treatment .
She wanted me to have the second area of calcification biopsies by mammogram guided biopsy and incision as she’s keen to get results back quickly but the radiographer said no as I’m on blood thinners so that’s booked in for next weds .
She said treatment won’t start till probably end of August and told me to go off and enjoy my birthday weekend .
There was a shadow on my right breast but I had another mammo and scan and the radiographer said it all looked healthy to him . He was quite breezy saying not to panic about waiting for the second biopsy but obviously my mindset is … get it out now !
The breast surgeon said I think you need a cup of tea and I was taken through to a little room and a lovely nurse made me and my husband a cup of hot sweet tea !
Everyone was lovely but it all feels surreal