newly diagnosed with IBC

Hi everyone,
I have posted before on other threads but this is for the IBC club, I have been told today the results of biopsy show several areas of IDC and that there are cells in the lymph nodes,all I know at the moment is they are grade 2/3 , so chemo is the first treatment followed by Mx and full node clearance,maybe more chemo and rads, and hormone treatment depending on results yet to arrive. My breast is swollen and red and I have the orange peel effect on part of the skin, is this what you call skin mets ? I look in the mirror every day to see the progress of my BC to me its advancing quickly but probably its just me panicking ! I know because the BCN has talked to me about it , that IBC is different than ‘normal’ BC yet the actual BC is a common one, how does that work ?? why do some women present with IBC and others dont ?sorry to waffle but its all so complicated ,ANY input would help.

Dear tillybob,

I’m sure some of the other forum members will soon be along to offer support. Please don’t forget that you can also give our Helpline a ring for information and support. They are open between 9.00 and 5.00pm on weekdays and 9.00am-2.00pm on Saturdays. The number is 0808 800 6000.

Very best wishes

BCC Facilitator

Hi tillybob

I am assuming you’re talking about inflammatory breast cancer? Just checking, and also bumping your question up a bit because the forums get pretty busy and sometimes posts drop off the bottom of the list a bit quick.

I don’t have the same type, I “just” have IDC (did I REALLY say that?!) so can’t offer any suggestions, just a very big but gentle hug until other IBC ladies come along with their experiences.


Hi Jean

Sorry to see you join the forum but nice to meet you :slight_smile:

From the sound of things you are not armed with all the information you need to settle your mind a little at this very difficult time and I would list all your questions for your next appointment with your Oncologist.

Like yourself I was diagnosed with IBC in January and I have just started my chemo (2nd tomorrow hence the late night steroid goblin)

I pretty well knew I had IBC at Christmas time as Breast was badly swollen red and hot and Orange Peel all over, also scabbing around newly inverted nipple.

IBC is a comparatively rare form of Breast Cancer and this is why this part of the forum tends to be a little quiet. Ask your Oncologist all your questions but please read and post on the other sections of the forum as well, we all share a common bond and at one time or another you will find many kindred spirits to help you through the Chemo, MX and RADS etc.

Let us know how you are getting on and please do not hesitate to mail me if you need a buddy :slight_smile:

Big Hugz



Hi Scrapper, love the name ! I am very grateful to find someone else who is sufffering just like me, I would like to become your buddy and share stuff. I am seeing team later today so many things will be asked ! I was just having a rant last night, I am reasonably calm most of the time.I hope your feeling ok today I have all this to come.I live in NW England and having treatment at Preston with surgery at our local Hospital in Chorley. The medical team I have met so far have been amazing , my BCN is lovely and I trust her, which is good.There is n’t many on here that understand IBC ,so glad to meet you.
Big Hugs back to you :slight_smile:

Hi Jean, I hope your appointment goes well and that your questions are answered for you, it is nice to meet another IBC’er as the treatment does differ somewhat but whatever order we have it in we are all gonna get blasted one way or another and the threads and people on this forum keep me going :slight_smile:

Turned up for my 9.00 chemo this morning and at 10.00 was informed that my prescription hadn’t been ordered so have to go at 2 pm tomorrow :frowning:

On the bright side I got my wig today and the hairdresser did a fantastic job on trimming it and chuffed to bits!

I am in Coventry and receiving my treatment at the Arden Cancer Centre. The staff are lovely and apart from today’s glitch which is just down to human error in a very busy environment, all the staff are lovely and very caring.

All the best for today Jean and let me know how you get on :slight_smile:



Hi Scrapper and Tillybob

Sorry to find you on the IBC part of this forum but we are just as friendly as everyone else.

I was DX with IBC in August 08. I had 8 lots of chemo 4xAC and 4xTax followed by a bilateral MX and rads. I also had a year of Herceptin and am now on 5 years of Femara. The DX of IBC is scary but if you look at some of the other IBC threads there are some ladies who were DX some years ago and are doing very well. It took time to get over the absolute panic and belief that I would not be around for long, but here I am 2 1/2 years later, and feeling fine.

Ask anything you like and I will do my best to answer, and I am sure that other IBC ladies will be along soon to offer their help

Take Care

Love and Hugs


HI AndieT, we are a bit thin on the ground are n’t we !! IBC is scary and hard to get my head round, I have now been told I have Lung mets so another hurdle but I am determined to stay positive. I am also Herceptin receptive so thats good news , they tell me its the wonder drug !! Every day is a step nearer to getting my treatment started and I will feel I am starting the fight to get my body back from this awful disease, until then I carry on as best I can, with family close with me.

Hi Jean and the rest of the IBC gang

Sorry to meet you like this but welcome to the forum. I have found it so helpful when I have had concerns…there are a few of us here and everyone is always quick to respond.

I finished all my treatment in Dec and am now on Arimidex and Zoladex injections for a few years. I can clearly remember my feelings when first diagnosed and how frightening it can be…your world is turned upside down for a while. But…as soon as you have a treatment plan and it all gets started you will find it much easier to cope with.

The year of treatment seemed to go fairly quick and I think the key is to face everything head on and with a positive attitude, if you can. Don’t be afraid to ask friends and family for help and phone your BCN with any queries…try not to research on the internet as a lot of the info is out of date and won’t help.

Sending you lots of cyber hugs

HI Rachel, Thanks is good to know people like you are here for me and others in a similar place, I don’t feel so isolated.
Hugs back to you
Jean x

Hi girls both “old-timers” and newbies,
Another IBC success story here, DX Nov 08, had all the works and now
retired and living in Spain. I fly home every 3months to see the onc and the surgeon alternately, I have a painful arm & shoulder but I feel very well and want to assure you new girls that all the treatment is perfectly do-able, Im a real wimp, I fainted when I went to be a blood donor, in other words a right mard-a*** but there wasnt anything I couldnt cope with, and time flies when youre on treatment,before I knew it my hair was growing back and now its the best head of hair Ive ever had! Keep your chin up, Gods good. Accept all offers of help now or people wont offer later on when youre knackered! Take care and try to only eat home cooked food whilst on chemo, if I eat out at all it always gave me diarhoea, also clean the handle of the trolley at the supermarket with anti-bacteria gel on a tissue, youd be amazed how mucky they are, avoid germs at all costs!
Lots of love from Mags xx

Hi Jean
I’ve just put a message on your other thread. As you can see there are a quite a few IBCrs on here. Its good to know they are all out there and doing well!

Hi to you all


Hi All, Just wanted to say a big thank you to all who responded to my thread, many good ideas re:treatment and positive thinking, I will get through this !!!
Cheers girls , your all very special.

Hi Jean,

So sorry you’ve had to join us. I don’t visit so often these days so I’ve only just seen your posts. As you’ve already discovered, this is a very supportive site and you can ask anything at all. You can bet one of us will have had a similar problem somewhere along the line.

I thought you might appreciate another good news story. I know I did in the early days because that’s when my panic was the worst. I was diagnosed with IBC in March 09. I had the classic symptoms including the orange peel skin, which is actually the primary cancer affecting the skin rather than skin mets. “Mets” is short for metastases which is one of the terms used for a secondary cancer. They look quite different. I had the full monty treatment (chemo/mast/rads/herceptin) which took 22 months to complete. I had my last herceptin in December and I’m doing very well. I returned to work a year ago which I admit was very hard at first but I’vce come a long way.

Like Mags my hair is better now than it ever was. It came back a lovely dark brown with not a grey in sight. I’m 50 this year and still no grey. Can’t believe it and neither can my jealous sisters.

Totally agree with Mags about accepting offers of help. I really struggled with that at first, I was so used to being independent. Once I got over it and allowed people to help life was so much better.

Hope the treament is being kind to you.

Jan xx

Hi all,

Can someone explain please how this IBC/IDC works? I was told I had IBC on diagnosis in autumn last year, but now after chemo and mastectomy I have been told that what they found in the breast tissue was IDC. I don’t understand this (and am still suffering from the effects of the chemo and mastectomy which took place less than two weeks ago so can’t think clearly either).


Hi Christine,
my BC was IBC and Id help you if I could but I dont know what the letter D stands for, hopefully someone will be here soon, love Mags x

Isn’t IDC invasive ductal carcinoma?


Hi ,
I was diagnosed with IBC this is Inflammatory Breast Cancer, but my cancer in the breast is IDC, Invasive Ductal Carcinoma,
The onc told me the difference is how the cancer affects the skin of the breast and how it travels round the lymphatic system.
Hope this helps.

Hello again,
On the day of my DX, I was told that I had IBC grade 3, a couple of weeks later I got a copy of the letter from my consultant to my GP which stated that I had “invasive ductal carcinoma of the inflammatory type”,later on my BCN said IBC was so-called because of how it presents itself, sounds similar to you Jean. Love Mags xx

Thank you all for your replies. It looks like ‘invasive ductal carcinoma of the inflammatory type’ is probably a good description then - with it being really both IBS and IDS. That explains things to me at least.
I am recovering from my mastectomy slowly - my drains are goe, but still have fluid buildig up, which they drained with a needle once already, but will have to go back tomorrow as I think it has built up again…

very best wishes to you all