Just curious

I know that IBC is quite rare but I wonder if anyone knows how many of us there are in the UK at the moment? There are a few dedicated websites in the US and some awareness there of the different issues for people with this condition. There doesn’t seem to be here. Is it because we are so few? A lot of the medical profession I have come across in the last few months have never heard of it. Most women I talk to have no idea about looking for changes other than lumps in the breast.

Jan

I read somewhere that it is 1% of cases in the uk… it does seem to vary greatly from country to country… it is meant to be over 40% in Tunisia…

I don’t think it is just the UK, as I live in France and my initial mammogram and u/s didn’t indicate I had cancer, I was told by my then GP that it was hormones!

After bleeding from the nipple started, a biopsy was taken of the blood and still I was told it wasn’t cancer.

Eventually following what was supposed to be a minor operation to remove milk ducts - when this so called surgeon made the incision it was obvious that I had more than just hormones! My initial dx was IDC, but after changing hospitals 3 months later due to various problems that weren’t being dealt with in the correct way I was then told it was IBC, not IDC!

I will always wonder if I had gone to this hospital right in the beginning whether my dx would have been made straight away.

They do seem to know quite a lot about it here, well, at the cancer hospital I now attend they do, but as for the previous GP needless to say I want to punch her in the face!

Sorry for rant, I wish we could raise more awareness about IBC as it is such a serious form of BC.

No need to apologise for ranting Peacock. It seems you had a very rough time and sometimes people need to get angry enough to want to change things. I was relatively lucky. It took a while to get an appointment with a specialist consultant but once I got there I was diagnosed very quickly. It only worked that way because a scientist friend recognised the symptoms and made me insist on being seen without delay.

What puzzles me now is that I’ve found it very hard to find any survivor stories anywhere but there are lots for other types of cancer. I’d like to think it’s simply because there are not many people suffering from IBC but can’t help wondering if it’s because most sufferers never really recover. I know that sounds very negative but all the wondering doesn’t stop me from being determined to beat it.

I’ve always wanted to write but never had the time or enough passion about a subject to get around to it. I have plenty of time on my hands now since I haven’t been able to work during my chemo. I’m thinking of trying to interest some of the better women’s mags in running articles to raise awareness about IBC. If more women knew what to look out for maybe they wouldn’t have such a hard time getting a diagnosis.

jan - i know what you mean about survivor stories…:frowning:

jackie - would probably know better than any of us of people who have survived a long time as she has had this the longest out of us… i do know that a good friend of jackie’s died last summer and i think she was 6 years post diagnosis… there was a lady in the north of england running an ibc site and she was 8 years - but sadly died at christmas…:frowning:

Hi ladies,

Sorry only just caught this thread, been manic at work this week due to SATs!!! Poor kids:(

Hmm, survival rates…
In my experience most (not all) IBC dx are triple negative. Therefore once you run out of chemo options things become difficult. I’m not triple neg myself.

I posed a question a year or so ago asking about reconstruction and its impact on survival for IBC ladies. I was thinking about recon myself (prior to my skin mets developing)but wanted reassurance due to the way our cancer likes to attack the skin.

I also posted on the HER2 site, as most ladies in America seem to either have immediate recon or are offered one when skin has settled after rads. From what I have read it seems to me most have gone on to develop secondaries, including my friend (which originally prompted my question) as she was doing so well prior to hers. This is only an observation, no one would/could confirm either way.

October brings me to 4 years since dx. though I’ve always been on some kind of treatment , my skin mets are classed as a local recurrence, but they are not life threatening.

If you take a look at the HER2 site you will find many ladies with longer survival, though most have been through a lot of treatment in the past and are still undergoing treatments of one kind or another.

When I was first dx I couldn’t find anyone else with a dx of IBC, gradually a few of us appeared from the woodwork. Strangely though when I went for my surgery the lady in the opposite bed had IBC too and was from the same GP practice as me!

Jackie xx

Thanks Jackie,

Your post confirms the impression I had that most people, even if they do well, go on to further treatment for mets.

I’m HER2+ myself so I have the option of Herceptin which I’m hoping will give me as good a chance as possible.

I sympathise with the recon dilemma. At the moment I’m still at the early stages (FEC and Tax) but I know I’ll have big decisions to make along the way.

I too was surprised to find someone else within 10 miles of home who has IBC. She has finished her treatment and recon and is clear for the moment.

Hope you continue to manage yours. Fingers crossed.

Jan

Hello ladies

Sorry if this sounds a really dim question, but, is there a usual/set time period in which skin mets might occur?

I got the impression from my surgeon that it is more likely to happen by about six months after mx, because he said reconstruction wouldn’t be possible until at least 6 months depending on how the skin heals and to see how it goes.

So from that statement if I manage to get to say a year after mx without skin mets does that mean I am “in the clear”? Obviously other mets are possible at any time I know and I will never get complacent.

P xx

Hi Ladies

I am about to ask another really dim question. What do I look for as far as skin mets are concerned. Red Marks, Lumps, raised areas, sore spots or what?

Andie xx

Sorry ladies, I can’t help with these very relevant questions. I’ve no idea. Best I can suggest is that you ask your surgeon/breast care nurse or phone the Breast Cancer Care helpline. You’ve raised something I wouldn’t have thought to ask but I will now.

Andie, there are some pictures of skin mets on the American IBC website but I’m not sure that they always look the same. You might find some info there on what to look for though.

Jan

Hello ladies,

Skin mets often accur within the first 3 months. The 6 month wait is more to do with rads than the threat of skin mets, that said I think they like to wait a year before talking about possible recon.

My original mets looked like tiny red full stops, mostly quite flat, only one slightly raised.
Now they are red bumps, larger, and look like scar tissue. One, the latest looks like an insect bite but doesn’t itch.

They can look like a rash or a series of flea bites.
Although known to occur with IBC not all of us get them.

Jackie x

Thanks Jackie…:smiley:

Thanks Jackie, as usual very informative.

Jan - I can’t ask a BC nurse because I live in France and there is no such thing here. The best I can do is wait until next month when I have a surgeon’s appt, presumably to look at the scar and see how it is doing. So if anyone finds out the answer before then, please post.

Theresa - hope all is well, have you had your CT results yet? Hope you are managing to walk further without getting so breathless and that everything else is ok?

Bye for now all