Inflammatory breast Cancer - Words I had never heard before

I was diagnosed with Inflammatory Breast Cancer on wednesday of this week.

Following a clear mammogram last November when I found a lump under my left arm(which my husband was unable to feel) I was not in the least worried. When it was still there a few weeks later and what I assumed was yet another cyst began to form in my breast together with a slight tenderness and a mild rash I realised that I should get it checked out by my GP. She referred me on to the hospital.At the appointment I was sent for an ultrasound and suddenly we were in the realms of biopsies although there was no actual lump .Mastitis was mentioned together with cancer.

For 15 years I have had scare after scare with cysts and lumps which have always proved to be false alarms so I really only focused on the mastitis - how stupid was I. I received my diagnosis and now next week I have to have an MRI, a CT scan and a Bone scan to see if it has already spread. Then I must begin 6 months of chemotherapy followed by surgery next year.

I am absolutely terrified. For the last few days I have spent a lot of time on this forum but to date have been unable to find anyone with a similar story. Please if you are out there can you give me a reassurance that this may not be as bad as in my imagination.

Dear AndieT

Welcome to the Breast Cancer Care chat forums. I am sure you will get lots of help and advice from the many informed users of this site. BCC have published a resource pack which has been designed for those newly diagnosed, this may help you to understand more about your diagnosis and treatments. If you would like a copy just follow the link below:

We have also published a factsheet about inflammatory breast cancer which you may also find helpful:

Please feel free to call our helpline team for further support and infomation on 0808 800 6000, the line opens 9am-5pm weekdays and 9am-2pm Saturday.

Kind regards

AndieT - sorry you had to join this club.

I hope it hasn’t spread, but remember it is standard to get an MRI, CT etc scan. I was petrified. I have an aggressive form but we, me and the docs are doing everything we can to stop it and for it not too come back.

goodluck and whatever happens, we are all here.

Hello Andie,

I was dx with IBC 3 years ago.
I will pm you.
Jackie x

bumping this to the top,

Thanks for all your messages of support.

I see the onc this wednesday to get the results of all the tests. Trying to stay positive but absolutely terrified that it has already spread before they have even started treatment. At the moment they are talking about 4 lots of AC and then 4 lots of Taxotere. This has not actually started yet and not sure if it will be changed should the tests show up something else.

I already have arthritis in my back so at the moment my imagination is in overdrive that the pains I have assumed were the arthritis escalating are in fact cancer already spread.

Whatever, I am assured that the team I am under are excellent so I trust that they will set me on the right course for me. It is just so hard the waiting to find out.

Thanks again. I will look on the other sites recommended

AndieT - we all know how you feel, I hated it, the fear is unimaginable…well, except to us. Just remember, the doctors will do everything they can to help you fight this.

Please contact us fi you need us.

K x


This type of bc really does grow fast. Saw the onc today and she took more measurements. It has grown considerably in the last two weeks. Chemo starts tomorrow so I am hopeful that there will soon be evidence of it begining to shrink.

On the plus side there is no evidence of it having spread anywhere alse in my body

The absolute terror seems to be subsiding to a dull roar now. I just want to get on with the fight.

Thank you all so much for the help over the last few awful weeks. This site has been a godsend.

I’m now going to read the top tips for chemo as am sure there will be priceless info there.


Hi Andie,

Unfortunately IBC does grow very quickly which is why quick action is needed.

So pleased that there is no evidence of spread.
I think once you start chemo you at least feel you are ‘doing’ something rather than sitting waiting for it to take hold. Things become much clearer when you know your treatment plan.
I had 4 x FEC followed by 6 x Taxotere (FEC is similar to AC). These are very commonly used to treat IBC before surgery. The taxotere particularly had good results for me.

Whereabouts in the country are you being treated?

Any q’s please fire away, I’m happy to help if I can. Will look out for you around the ‘net’!

Wishing you all the best with your ongoing treatment, I remember the first chemo is the scariest, fear of the unknown I guess, but you will be absolutely fine.

Take Care,
Jackie xxxx

Hi Jackie

I am being treated at the Princess Royal Hospital in Bromley. Their cancer unit has a really good reputation and the people I have come across so far have been asolutely brilliant.

My mum died of BC 20 years ago and the treatment now and then could be from different planets. My Dad and I were never allowed to go in to see the consultant with her. We had been told from day 1 that she would not survive but the consultant told my mum that she would be cured and sent her off for radiotherapy on the mets in her brain.

She survived for 8 months but they were 8 months of hell both for her and my Dad. Our care is so much better.

I am scared of this Chemo but know it must be done. Maybe I will be one of the lucky ones and not suffer too badly

Thanks for the kind thoughts


Hi Andie,

I hope the chemo works for you - it did for me!

Chemo is tough, but it is doable and remember it is working for you. I was happy being on chemo even though I was put thru the wringer with it (even hospitalised twice) but it was my weapon to fight - think of it that way! I even asked for more chemo after my 6x cycles - they thought I was mad.

If you need any help or tips, just ask. I’m being treated in London, so not too far from you.


Hi Andie

I was diagnosed with IBC in Feb 07 aged 46 years old. I had a grade 3 tumour of 8 cm with and spread to the lymph glands. I had 6 sessions of chemo. I felt all the horrible feelings you are in the throws of at the moment and got in a very big depressive dip beforehand.

I was dreading chemo but I would say the day I started it was the day I started to mentally start the fight and felt much more positive. I just got it into my head that the worse I felt, the more efffective it was probably being. After 2 sessions I had a bit of a feel at the lump (actually I had 3 areas of cancer one1 8cm and two smaller areas) but the big area had definitely shrunk and by the end of the chemo there was little left.

I then had a mastectomy in Aug 07 and full lymph clearance followed by 3 x 5 sessions of radio. The results of the mastectomy showed that there was no evidence of cancer in the lymphs taken and no evidence of cancer on the margins of the op site. The oncologist has said I will probably be OK, (those are encouraging words from and Onc). Now 18 months post diagnosis I am doing well, so far so good and back at work although reduced hours to 4 days.

I think my advice to you during chemo is to rest when you feel like it and live life as normally as possible. I found the earlier Wed chemo sessions put me out of action for a bit i.e. I didn’t go to work for 2 to 3 days and slept a bit in the day but after the weekend and the steroids had done their bit I was back at work not feeling quite normal but able to manage. I managed to work up to the 6th session when I finally checked out until after the mastectomy.

I tried the cold cap but lost all my hair on the 18th day following the 1st chemo, people vary in this I hear and you may be one of the lucky ones who keeps hair, that said if you do need a wig make sure you get one that can be cut to your liking and I managed very well with an artificial one although I know some prefer real hair, the maintenance is more trying.

Very good luck to you, you will come through it and there is life after all this, just try to take time in small chunks and make sure you slot in some nice times during the treatment.


Hi Andie,

Sorry to hear about your Mum, what an awful time you all had.

I’m being treated both locally (Essex) and at the London Marsden. Both terrific. I think it helps enormously when you feel confident in those treating you.

I’m back to work full time from Tuesday (Teaching Asst), have been doing only 4 days for the past school year. Goodness the summer hols went by quickly this year!

Hope you’re feeling OK after your first chemo, let me know when you feel up to it.

Take Care
Jackie xx


Forgot to say that when I found my lump (s), because one was 8cm I thought it had been there for ages but the consultants tell me that with IBC it can literally crop up over a series of weeks, so although you may think you might have had it for ages you probably haven’t. Also I have had back ache for years, muscular problems and thought the same as you but they have come and gone with treatment, backache still around but no different to how it’s always been and haven’t had any scans and am presuming nothing sinister.

Happy to help in any way I can over the coming months of treatment, I will be thinking of you. Incidentally I was treated in Leeds and by some pretty good folk who I have confidence in and sounds as though you have the same good attention. Things have really moved on leaps and bounds in terms of treatment these days. Don’t read the stuff on the internet on IBC, well do if you must but, bear in mind that it is out of date and that survival rates are far more related to good treatment which you are having, so you can’t slot yourself into those statistics which include women who have just had mastectomy’s and no other treatment, I hope you are like I hope I am, going to be one of the successes.


Hi Maria

According to my GP arthritis pain comes and goes with movement whereas cancer pain is relentless. I found that reassuring because I have long spells completely free of back pain.

I have actually given up looking for IBC on the internet because I was just getting frightened. People on this site have come through, So will we


Hi Andie,

I just want to wish you all the luck in the world with your treatment. The Princess Royal are fantastic aren’t they. I was under Mr Sinha there when I found my lump and he did my surgery. Luckily the results were benign, but you are in good hands, there a fantastic caring team. I found everbody from the lady who organises the surgery/admissions, the ladies at outpatients right up to the consultant himself were so kind and caring.

All the best.

Jules xx

Hallo Andi

Hallo Andi I just wanted to tell you that I was diagnosed with IBC in 2005 when I was then 79 yrs. of age, although very fit and active. There was an 8cm. tumour and I had a course of FEC and the lump shrunk quite quickly. This was followed by 20 ‘zaps’ of radiotherapy and then 12 months of Herceptin. There was then a rest of 6 months and I was referred to the surgeon. However, as the scans and mammograms were at this stage all clear and in view of the fact that I am now 82 I have rejected surgery - I just have a gut feeling that it is not for me. I can change my mind if I wish but in the meantime I am being monitored every 3 months, alternately with the oncologist and the surgeon. My most recent appt was last week and so far all is well.

I now have quite a lot of degenerative changes in my spine, hips and knees but that is mostly age-related and I try not to let it restrict me in any way. I take co-codamol for that if I have to, but otherwise manage quite well - had a long weekend break in France recently, going round Monet’s garden and Fontainebleu etc. and I help to run a small club for pensioners.
When I was first diagnosed I was devastated and started to plan my funeral and I don’t think I was alone in thinking like that, but as soon as treatment started I calmed down and have remained positive ever since. This is the most important thing I believe and if you can do that it will go a long way to speed your recovery. And of course having faith in the treatment your Cancer team have worked out for you.

I wish you well Andi and hope by now you are feeling more re-assured. Perhaps I should add that it is perhaps easier for me at my age to remain philosophical and as I am widowed and live alone I don’t have the worry of children or a partner to care for. My children are very good to me but don’t live very near and they know that I wish to remain as independent as possible but they are always there for me if I need them.

Good luck andi Love Frances

I have posted this on behalf of new user Sandra

Sam (BCC Facilitator)

Hi everyone

I have just re-registered on the site so I can just let you all know that I was diagnosed with IBC at the age of 42 in April 2003. I had chemo, a mastectomy and complete node clearance in one armpit, and radiotherapy. Then Tamoxifen for a couple of years and arimidex until recently. I am now officially “cured”! I just wanted you all to know that IBC is not the death sentence it once was; I was advised right at the start not to look on the Internet! A lot of out of date information even then!

I can only send my thoughts and prayers to you all and hope that you will be as lucky as me!

Much love


Hello Sandra,

Thanks so much for those encouraging words.
I was dx in Oct 06, so am about to reach my 3 year anniversary. I am currently being treated for skin mets which are responding well, am back at work and otherwise doing well.

I refuse to look at the internet , knew from the beginning it would scare the hell out of me.

Stay lucky!
Love and best wishes,
Jackie x