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 admittedly it’s a bit early right now

It is hard as I can’t help catastrophising…

If you do happen to go private, don't cancel your NHS appointment--that appointment can be used for treatment. Going private won't automatically take you out of the NHS system unless you don't attend/cancel the NHS appt.

@Lavenderfields21 I’ve tried to get a private appointment before 23rd July but I live in a rural area and the nearest hospital (private) have nothing before August and I think in view of needing a biopsy , at this stage I’m not going to have the results even if I was seen privately early next week , by the time the NHS one comes round

I'm really sorry you're going through this - it's very stressful.

Just a few things - you've been referred on an urgent suspected cancer pathway. The aim is to rule out a cancer diagnosis within 28 days of referral. So in this time frame you should have relevant tests and find out if cancer or not.

98% of these referrals are not cancer.
Only 5% of breast cancers are IBC.

Waiting is so hard so please be kind to yourself and find ways to help this stressful time.
You may not have cancer but Macmillan are very supportive and you might find their info helpful - check out their support www.macmillan.org.uk/cancer-information-and-support/diagnosis/cancer-tests-and-waiting-for-results#:~:text=There%20is%20no%20right%20or,cannot%20concentrate%20on%20anything%20else.

Take care

Rockschooldropout · Today 22:20
HappierTimesAhead · Today 21:29
I'm sorry, that is incredibly hard to distract yourself from. I hope it didn't come accross as insensitive.

It is hard as I can’t help catastrophising

Of course you can’t, we all do!

From what I learned, though, cancers are generally fairly slow growing. That they would increase so much in size within weeks is very unlikely.

Thank you - I’m keeping my fingers crossed tightly xx
Thank you for the link sadly I’ve have had a lot if I go from them over the last two years due to both parents having cancer (DF died in April )

IBC is quite fast growing it seems .. quite aggressive .. I’ve banned myself from Google now 🙈

@Rockschooldropout - I'm so sorry I'm not surprised your mind is in overdrive after the GP comment and with having lost both parents to cancer too and your dad so recently. That will be very raw.

Not knowing and being in limbo land is one of the most stressful times. Def step away from google, as until the tests are done nothing is conclusive. Be really kind to yourself and I hope that you have some supportive friends and family that can help you through this time. Keep posting gear for a hand hold too if that helps too x x

@BSky . Thankfully DM is still here , she’s living with stage 4 lymphoma but doing really well , she’s on immunotherapy treatment, but DF death was a horrible shock as he’d had pneumonia (he had lung cancer ) , recovered and returned home from hospital then passed away suddenly a few days later at home . I feel like I’m trapped in a nightmare at the moment . Both sets of grandparents died of different cancers so chatting with DM we have questioned if we carry a cancer gene . No immediate relatives with Breast or ovarian cancer though except two great aunts .

I just keep hoping it’s hormonal as I’m on hrt but changed to a different type in May and I’ve put weight on with it and had heavy periods so I don’t think it’s agreeing with me

I actually think it's a good thing the GP mentioned IBC. Some women get fobbed off with other diagnoses and have to wait a lot longer. My mum died of IBC 22 years ago (sorry OP) and it took them awhile to figure out what it was. It was very unknown back then and hopefully awareness of it is better within the medical field nowadays. Fingers crossed it ISN'T IBC OP but if it is, at least it's been spotted quickly. I'm so sorry for all the stress you're going through.

So sorry for everything that you’re going through right now especially after the loss of your Dad and dealing with your Mum’s illness. Just wondered if it would be helpful to ring the switchboard of your hospital and ask to be put through to a Breast Care Specialist Nurse. You might be able to leave them a message and request a call back. At least you would be able to voice your concerns - it seems particularly hard that the GP has given you their ‘diagnosis’ ( despite no tests !) and you’re just left in limbo until your appointment. Fingers crossed for you.

@Babbahabba I’m so sorry you lost your mum 😢 x

I might give that a go on Monday - today I feel really flat and down … I just want to curl up in bed and stay there and every time I brush against my nipple area it’s so painful . Dd keeps laying her head on my boob and I’m wincing with pain and gritting my teeth

How are you doing @rockschooldropout?

Have been thinking of you today…. yes, do ring the Breast Care Specialist Nurses, especially as you’re in pain. I really hope that they can get the ball rolling for you and can get you seen a bit earlier. Worth a try.

@Wren77 not so good today , my mind is in a whirl .. I was slouching to the right on the sofa and brushed my hand against the outer side of my left breast and clearly felt the lump ! It feels huge .. I’m panic stricken that it’s fast growing and aggressive. I can’t believe I’ve another nine days before my appointment

Yes I’m going to call them tomorrow - I’m really thinking that I’ll be getting a BC diagnosis at this rate , I can’t see that it can be anything else as gp said it doesn’t feel like a cyst as it isn’t well defined

Oh wow, it sounds utterly dreadful. I think you should definitely seek help earlier - I was admitted after going back to the Dr with my breast and given IV abx because it wasn't responding to the oral and I was seen by the breast consultant the next day, had a mammogram and ultrasound. Even if you just go back and see a different Dr - you are in pain and you really need help (and I say this as an NHS clinician if that helps persuade you a bit) if it's an abscess as mine was it needs sorting ASAP!!

I don’t think it’s an abcess sadly .. I wish it was !
I don’t feel ill .. I’ve no temperature and my breast isn’t red or hot feeling .. I had had terrible
mastitis when I was breastfeeding , interestingly always in the left breast and it doesn’t feel like that at all .. I’ve just got a mad oversized boob with prominent veins and now the lump with I could barely feel .. feels huge if I can feel it this easily

Well I’ve been on the phone trying to get a private appointment somewhere as the waiting is making me ill
, but none of the private hospitals bar one within a 1.5 hour radius offer a rapid access clinic . The one that does had nothing until
August .. I think I might have collapsed from the stress by this time next week . I’m unlucky in that I live in a very rural area so facilities aren’t brilliant

@Rockschooldropout do you want to say which area you are in and maybe people can offer possible suggestions of other clinics?
Or could you get to London for the day?

Hi op massive sympathy. I had 25 days between gp referral and my breast clinic appt and I nearly went crazy. It took them ten days to even tell me when my appt was even though I was ringing constantly after 5 days.

Be prepared that they might not be able to confirm at that appt if you have cancer. sometimes they can see straight away on scan but other times it’s just a “maybe” and you have to wait for biopsy results which was another ten days for me.

But I should have said please don’t panic. Even if it’s aggressive breast cancer a few days won’t affect the outcome.