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!

So pleased to hear this, keep us updated xx

Thank you ever so much. It was so helpful to have all this support here. It really was.

Hi! Oh this is just fabulous to read! I know well that horrendous worry you just went through. It is great to hear they saw no thickening of the skin, which is a sure sign of IBC. Sometimes mammograms and ultrasounds don't pick it up though as no lump is found in many cases. If the antibiotics don't start to work in a couple of days please call them back too! With me, I was put on antibiotics first, which didn't work....as it was IBC in the end. In your case everything sounds promising though and I have my fingers and toes crossed for you that the rash disappears promptly now. Big hug sending out your way!

@WorriedAboutMyBoob Great news! In my case I had to wait to see if the little inflamed patch disappeared with a strong steroid ointment. It did and when the consultant saw me again after two months, I was discharged from the clinic. You can start relaxing now! x

Well done OP - you poor soul, you must be sooo tired. Hope the antibiotics knock it on the head

So sorry it wasn’t good news for you - how are you doing now?

Ah thanks. After a pretty tough treatment, I'm finally doing well again. We were lucky that I went and got the redness on my breast checked out when I did. That's why I nowadays encourage all ladies to get any changes of the breast checked out right away. Maybe it will help someone doe the same.

Thanks. He said it would take 2-3 days to kick in, so I’m keeping my fingers crossed. At least I’ve spent less time staring at my boob yesterday and so far today! I was checking it every time I went to the loo before, I feel like I’ve got a couple of days of grace before starting to stare at it intently hoping for an improvement. I’m really pleased to hear you are doing well after all you must have been through.

It really is quite terrifying to think how something so “minor” looking can turn out to be so nasty potentially. I know they say it’s very rare, but 1% is still 1 person with it for every 99 with a more common version. I had no idea that it could be cancer without a lump or mass anywhere, so it’s certainly been educating. I know skin changes are on the list of possible signs, but it’s not really clear that that alone might be the only one.

Any breast skin changes should be reported to the GP sooner rather than later, if they don’t disappear on their own, and this goes for everybody, females OR males. Hopefully by alerting others, more people will get checked.

So pleased for you!

@WorriedAboutMyBoob I just wanted to check in with you to make sure the antibiotics worked. Did the redness and swelling go down? Mine wasn't gone by 3 days and when my doctors heard, I was sent straight back to the breast clinic. I've been thinking of you, so just making sure you're fine now. All the best from me.

Hi,
Sorry I haven’t been back for a while, there has been a lot going on (one of my neighbours decided to have a huge health issue, so between that and family things I’ve barely had time to stop and think).
The antibiotics didn’t do anything. I thought towards the end of the week there might have been a small improvement, so spoke to my gp and they gave me a further weeks worth, but it didn’t get any better. I have an appointment back with my gp in the morning. I’m not sure what they will do. It hasn’t got much worse (as I imagine IBC might do quite quickly), except one area on the lower part of my breast has become a deeper red.
Thank you for asking, I’ll let you know what they say tomorrow.

Hi, ah no. Sorry it hasn't cleared up. Can you please also contact the breast clinic too and report this? I had also thought mine was improving, but then it got worse, and yes also a deeper red. From my experience, you should push for a biopsy ASAP. I hate to cause anxiety, but if it is IBC it needs urgent attention. Again I have everything crossed that it is not IBC, but now there are a few red flags not to be ignored. Please reach out if you need any advice. Sending a big hug too.

Please push for a biopsy tomorrow and don’t take no for an answer OP.
Wishing you all the very best.

Good luck again OP, great advice above x

Thinking of you today @WorriedAboutMyBoob . Hope you're making progress 💪

How are you @WorriedAboutMyBoob x

Hi, apologies for the delay, this really isn’t good timing with so much going on with everyone else’s health too. Especially one of my relatives that has several potentially massive things on their initial scan (it’s taken months to get them to go to their gp).
My gp has given me some steroid cream to try in the hopes it’s something dermatological. I’m hoping it’s that too to be honest). I’ve an appt to see them again this week to assess and then refer me back if no improvement. Part of me feels I should be pushing harder for things, but part of me also seems to have buried my head in the sand a bit. It just feels like too much on top of everything else. Stupid really, but it just seems all a bit much. I don’t think the cream has made it any better, but it doesn’t seem to be any worse either, so I’ll see what happens next week. I will push harder next time I see them if there’s no improvement though. Sorry I’m being so rubbish.

I think you need to prioritise your health @WorriedAboutMyBoob

I know it is easy to put yourself on the back burner but you won't be able to support all the people you are currently helping if you are unwell yourself.

It's still a good sign that the skin wasn't thickened, but if the antibiotics and cream aren't working, you do need to get to the bottom of it. Hopefully they just need to try a different antibiotic, but please don't delay in pushing for another review.

Hi @WorriedAboutMyBoob ,
Please take your head out of the sand now! I am an IBC survivor, and I have heard too many stories almost exactly like yours....where a GP will prescribe antibiotic after antibiotic, or a cream or lotion, or just wait and hope it clears up. For too many of IBC patients this is the case, as the disease is so rare, and a GP may never have come across it in their career. Too many women then go on to be diagnosed too late, and the cancer has spread around the body. I acted immediately for mine and within a week after diagnosis it had already travelled to my lymph nodes. It is one the most aggressive breast cancers, so acting immediately is critical. You need a biopsy right now. If I were you I would present myself at the breast clinic today. Enough of phone calls and waiting for appointments that are days away. That is what I did when antibiotics did not work. This is your life, and you have one chance with IBC. I know I am being very straightforward here, and I REALLY hope this is a false alarm, but a biopsy is needed to rule out IBC, and needed right away. Sending you all my best thoughts, and strength to bring yourself to pull away from all the other stuff going on in your life. Please put yourself first today.

@WorriedAboutMyBoob I have attached here an image of what my IBC looked like. I think you need to click on the image to view it properly. I cropped the image, but bottom left is where my nipple began, and the top right is my neck and my shoulder begins top left. I had a red/pink rash. I did not have any dimpling of the skin, or other notable skin changes. This is IBC. It did not respond to antibiotics. Please have yourself checked out.

Thanks you. Can I ask if it was a needle or skin biopsy they did? Did they sample where the redness was? I will chase this. Thanks.

Great advice here. It's scary, but you need to do it today. GPs will have minimal training on this and a lot more on general skin conditions due to the frequency they occur, so will naturally default to antibiotics and steroid creams etc.. Go back to the breast clinic. The receptionist will probably tell you you need an appointment and can't be seen as a walk in. Tell her you were there a couple of weeks ago, and the GPs treatment has not cleared the skin and you need to be seen.

@WorriedAboutMyBoob For me they took the two types of biopsies:

1)They took several needle biopsies at random all around my breast. They did this as the ultrasound didn't show anything too specific. IBC can grow like 'mist on a hillside' or 'candy floss', and doesn't show lumps in some people. Therefore it can be missed on mammograms and ultrasound scans. Every single one of my needle biopsies showed cancer.
2) They took 2 skin biopsies, one from a red patch and one from where my skin looked normal. These both came back negative. Skin biopsies don't always come back as positive in IBC. I have heard of many women who also had negative skin biopsies.
I would advise you push for both types of biopsies.
Good luck. Wishing you strength and the very best outcome in this. You can contact me anytime.

@WorriedAboutMyBoob I’m simply going to repeat this advice, it is really really important that you are fully checked out as soon as possible.
Please do it x