Scared it might be inflammatory breast cancer

[WorriedAboutMyBoob]

Hi, I’m just hoping there might be someone here who can talk to me about their experience of having or not having a diagnosis of inflammatory breast cancer. I have a short history of a swollen breast with a large red area. My areola on that side seems to have become larger/stretched also. I’ve no temperature or other signs of something like mastitis. I’m early 50s and quite worried it might be IBC. Any information would be appreciated, thank you. My GP has referred me to the breast clinic, but I’d like to go in with as much info as possible. I understand that a mammogram isn’t always great for picking up this type of issue. It would be great to know if there are things I should be asking about when I’m at the clinic, thanks. I’ve name changed for this, sorry.

PS. Apologies for the boob photo!

I had lobular breast cancer and not an expert of ibc but glad you are getting it checked. Normally NHS check is a one-stop shop with a physical exam then mammo, ultrasound, biopsy if needed and chat with doctor at end if needed. They are very experienced so should be able to tell you either way and hope its not cancer.

Hi, I am an inflammatory breast cancer survivor. I don't want to scare you, but your breast looks exactly like mine did at diagnosis . Did your GP give you antibiotics to see if it was an infection and will clear up? Please push to get a biopsy ASAP as if it is IBC, then you will need immediate treatment, as it can spread extremely fast. I think you are in the UK, and if so there is an IBC specialist clinic in Birmingham. I hope you don't have it, and that is an infection. Sending you all my hopes for a good result.

Also, the IBC Network UK is a phenomenal support charity with a huge amount of knowledge on how treatment should be done. I would have a look at their website for guidance. Don't Google statistics for survival as what you read is old statistics, and not true in today's treatment of the disease.

Thank you both for your replies. Sorry I didn’t reply sooner, I’ve had a bit of a hectic weekend, I have 2 older relatives who aren’t well at the minute, and I’ve been yo-yoing up and down to them to try to get things sorted. Things always all happen in clusters don’t they. At least it’s helped stop me thinking about this too much until tonight.

@Penguinsa I hope your treatment was a success and you are keeping well. Thank you for your information. I had my first routine mammogram a couple of years ago and it wasn’t as dreadful as I had imagined, so hopefully the clinic won’t be too bad. It will just be good to know what’s happening. Hopefully it won’t be too long to wait.

@Love2Live thank you for all that information. There wasn’t all that much photo wise I could find online to compare too, but I did find one that looked similar that started my thinking. I did then slightly freak myself out when I started reading about it. I decided to put the tablet down and give myself a talking to. Medicine moves on so quickly now that as you say, statistics are always playing catch up. I know logically that I should just wait to find out what’s happening, at the clinic, but it’s easier said than done really. My gp didn’t give me any antibiotics which quite surprised me, as I thought she might want to try that in the first instance, but she seemed pretty sure it wasn’t mastitis. So I’m just waiting to hear from the clinic. I hope you are doing well and had successful treatment. Fantastic username.

Hi, sounds like you had a hectic weekend alright. I suggest you call the clinic today and push for an appointment. If it is IBC, which I hope it isn't, all will need to move fast. Fingers and toes crossed for you. By the way, it is always good to be informed before you meet the doctors and have questions ready. It helps a lot for both sides :)

I’ve just received a letter from the clinic saying they are reviewing my referral, and if I haven’t heard from them or my gp by the end of tomorrow then to call them. Hopefully they will call today or tomorrow to let me know.

My DP is great and really supportive, but normally it’s my DM I would share things with. She’s my best friend really. I don’t feel I can burden her with all this right now though when she’s so massively stressed out and worrying about my other relatives at the minute, she’s already on the edge, so I don’t want to push her over it, at least not until there is something to stress about. I’d hate to worry her more for a couple of weeks and then it turn out to be nothing too serious.

Thank you for taking the time to read and reply. It does help to write things down.

To be honest I'd also give them a call today. If the letter came today it will have been sent at the end of last week so the review should have taken place. They won't mind - my clinic were brilliant and were upset that it took me two hours to call them back as they had wanted to see me the same day and it was then too late. They understand that you're worried.

Yep, give them a call. Absolutely no harm in doing so. Pre diagnosis I confided in my sisters, and didn't say anything to mum and dad. I think it was the right thing to do, even if mum was furious afterwards that she wasn't in the loop. Mum is in her 70s though and I like to keep her stress low if i can. For routine scans I don't even tell her nowadays. Hey, for me the mental stress waiting on my biopsy results were the absolute worst. It was really difficult so it's good to have someone to confide in. After diagnosis my mindset was 'let's get this!'. That was 2.5 years ago, and im now 48, so treatment seems to have worked. I'm living a great life again.

Thanks. I was too late to call them when I saw these replies, but I will do it as soon as their call line opens tomorrow at 9. Thanks.
I'm so glad to hear you are doing so well @Love2Live that's just fantastic news❤️

@WorriedAboutMyBoob best of luck x

Thanks. No one answers the phone. I’ve left two messages, but still no call back.

Could you drive over and speak to them about it? People I know are getting appointments that way when they can't get through or no one calls them back.

We're you able to contact someone at the breast clinic? Hopefully they will get this sorted soon. Fingers crossed for you.

I finally spoke to someone today. I’ve got an appt for Monday. There’s nothing sooner, but they will call me if there’s another cancellation (Mondays appt was also a cancellation). Think I might book to go away this weekend, try to keep myself busy and my mind from overdrive. I’ve told my mum I can’t get up to help this weekend, mainly because I don’t want to blurt it out and give her more worries than she’s already got.

@WorriedAboutMyBoob Last year I had a breast cancer scare, I was referred under the two weeks rule, offered a scan in matter of days, and seen at the breast clinic. I obviously worried until I had the test results, and really try not to think of the worst possible outcome, I know it’s hard, but often it’s not. You’ll just have to wait and then go from there. Good idea to go away for a few days. All the best x

Glad you've got the ball rolling (at greater speed). That sounds like a good idea. The forecast looks ok so fish and chips and ice cream sounds like a good plan. Wishing you all the luck in the world. X

I’ve just popped on to wish you all the luck in the world as well, I hope it turns out to something else 🍀

Thank you. It really does help talking here, truly.

How did it go?xx

Hi, thank you for asking. It all seems ok (I hope). My appt wasn’t until 4pm, and to be honest, when I got home I just flaked out and had a nap for a couple of hours.

I had a mammogram, then saw the specialists who did a really thorough examination and an ultrasound (that he spent ages on). He said there was no sign of thickening of my skin, or altered lymphatic imaging, and he thinks it is some random cellulitis that should clear up with strong antibiotics. If not I’m to go back for another review. I had to wait an age for the antibiotics, so got home and went to lie down for “5” minutes😳 and now here I am.

I haven’t really slept for a week, so was just so tired, sorry. Driving home I kept thinking I should update here, but was just so tired, sorry. Thank you so much for all the support. I have genuinely spent the last couple of weeks thinking the worst and trying to work out what to do in the worst case scenario.

I really want to say a huge thank you for everyone taking the time to listen and offer advice, and to say I truly hope everyone keeps well and in good health for a long time to come. Thank you xxx

Oh fabulous news!

That's brilliant news! What a relief for you! X

Such good news, I'm so pleased for you - I hope you have a very good and restful sleep tonight too

That’s amazing news, the best outcome, so pleased! X

So happy and relieved for you! 😊