Hi I’m 35 and was diagnosed 22 Sept 08, had 4 FEC with not much response then 4 Tax along with herceptin that reacted very well to cancer. (was 18cm x 15cm reduced to 4.5cm)
Had Mastectomy and Recon 4 weeks ago, start Herceptin again on 8th June then Rads start July for 5 weeks.
Found out Thurs I am Hormone -. So my diagnosis is IBC, HER2+ but Hormone -. The hospital said to me that this was bad as they can’t offer me more things, i.e hormone treatment.
I was reading through other threads on IBC and started to get worried, knew about IBC being rare but no-one has said to me I am high risk of cancer coming back! Help please as I have been so positive all the way through this awful thing now I’m so worried
thanks
Sharon x
Hi Sharon - will just say hello as i know there are so few of us in the IBC subforum… I am er+ pr+, her2 - so the opposite to you… Did you also get your lymph node results…?
It sounds like the herceptin worked well for you with the tax… so hopefully it will help you alot in the future…
Theresa
Hi Theresa
I forgot to add lymph nodes, 1 cancerous, 4 showed scarring, all lymph nodes removed, I had 11 in total.
Apparently it’s better to be hormone + as you have more drugs to get treated with.
Thanks for replying
Sharon
I was 1 lymph node as well… they could only find 6 - despite doing a full clearance…
I expect some of the others will be along later - people are probably busy with it being the bank holiday… i know some of the others are also her2 +
Theresa
Meant to say - sorry that your hospital team didn’t mention to you the increased chances of recurrance etc… i think i am abit unusual in that my first words to my gp were “i think i have ibc…” although he didn’t know what i was talking about… but it did mean i knew the full picture from the start…
But it must have been very tough for you to read that first on here… {{{hugs}}}
I guess we can only try and draw hope that survival rates are increasing - they are so much better than even 15 years ago for IBC - and as it is only fairly recently that patients have been able to get herceptin we don’t know yet what extra chances that is going to give you all…
Theresa
Hi
Just thought I would join in here. In my ignorance I have really asked very few questions. I have been put on Herceptin which I understand means I must be HER2+ and will be put on Tamoxifen or something like it when I see the onc next week.
They removed 7 nodes and 4 had what they refered to as traces of BC in them. What is a trace? surely BC cells are BC cells whether there is one cell or several.
I have worked out for myself that there is a strong possiblility of this all coming back. My imagination goes into overdrive everytime I look at myself since finishing rads last week. I am checking my skin for the deterioration expected i.e. peeling and burning but keep seeing small marks that I had not noticed before and questioning skin mets daily.(That what was my reason for asking on another thread how skin mets present)The trouble is different people have given different answers which has left the whole question open in my head. I do feel as if I have two heads - The sensible one that keeps me calm and reasonable, and the panic one that goes into overdrive more often than I care to admit.
I did hear of a lady just the other day who is 10 years post DX with IBC which was quite cheering, although she lives in Europe not here.
Take Care everyone
Andie
Hi Andie…
My surgeon told me that there were just some bc cells left in the lymph node as the chemo had got rid of most… Do you know that you are definatly getting tamoxifen? They give you that if you are er+ (oestrogen). I asked for a copy of the pathology result from my mastectomy - which at first read was horrifying as it was mentioning areas of this and areas of that… but i googled it all - and the areas were just things like fatty tissue and other expected changes in a woman in her 40’s…
I know what you mean about the skin mets description as i have also heard of them described in different ways…
I know that after my rads i had a lot of burning, peeling etc - and what amazed me was despite such damage - pre-existing blemishes were still there… so it might be that things you are noticing are just simple things that were there before…
I heard of someone recently who was 19 years post dx…
Theresa
Hi Theresa,
I don’t have IBC, but am er/pr negative and Her2 positive. I have also had skin mets which occurred 6 months after a mastectomy on the mastectomy side. I am also someone who has lived 19 years since diagnosis but had several new tumours and recurrences over those years. I don’t think you find many dx that long ago on breast cancer forums because they aren’t sad cases like me 
Dawn
xx
Hi dawn… this was someone that had posted on the ibc sub forum of the breastcancer.org site - i thought she was american… but it was the first time i had looked at that site so not sure… (i think jackie and carole post on there…)
Theresa
Hi Theresa
My Onc said on the telephone that she will definately be giving me taxoxifen or something similar beginning with L. Is that good or bad.
Sorry to keep asking questions , hope you don’t mind
Andie
Andie - no it is fine… It might be we will need jackie to answer some questions as she has had this the longest…
If the onc said you are getting tamoxifen then you must be er+… i think there are other drugs they sometimes give people depending on how close you are to the menopause etc…
I do know it is unusual to have er+ ibc… i read that most ibc is triple neg, then her2+ and then er+… i guess whether it is better to have herceptin or tamoxifen (although you will be having both) will depend a bit on how you are side effect wise… i am getting loads of side effects from the tamoxifen and will have to be on it for 5 years (and they have said probably on some sort of hormone treatment for life…) obviously with herceptin they have to keep an eye on how your heart deals with it…
i have read on various threads on here that both treatments work really well for some people - but not for others - so i guess it is a case of wait and see and hope for the best…
When you see the onc also ask how strongly er+ you were - i am 8/8 (very strongly) i’ve heard the tamoxifen and chemo work better the higher the er score was…
But as i say alot of this is things i have read in the last few months - i’m sure Jackie will have a better idea / seen how things have worked out over the last few years…
Theresa
Good to hear Dawn that you are 19years down the line although it has still came back, makes me feel wee bit better
Apparently being hormone + you have more options to get treated with, hormone - you have less, ie chemo rads and thats it unless cancer comes back
Hello ladies,
Hope you all enjoyed some sunny weather over the bank holiday
As Theresa says most IBC is indeed usually triple negative.
I’m not!
Sadly my first recurrence was 3 months after surgery,quite common for IBC, the longer you go the better chanbce of it not happening.
Triple negs have many chemos on the ‘shelf’, the fact that you had such a good response the first time around is good Sharon, your body obviously responds well. FEC wasn’t so good for me but Taxotere and herceptin worked well, particularly on lymphs.
We all, strangely, have a different amount of lymph nodes. 8/9 of mine were positive at surgery.
The lymphs lie in layers. The cancer does not skip layers, it works its way through quite methodiaclly! The surgeons therfore stop removing as soon as they come to a clear layer.
Andie the hormonal you are thinking of is probably Letrozole (Femera). I was put on this at the time of my recurrence. You will be given a blood test to determine your hormonal status and this will decide the right treatment for you.
Reading this back it seems a little negative in places, sorry. Although I do have skin mets now they are not life threatening, they do however prevent any type of recon.
Currently I’m on yet another hormonal,along with herceptin, working full time and feeling pretty good.
Take Care ladies,
Jackie x
Hi Jackie
Thanks for all the info. The name Letrozole rings a bell. I have been told that at 62 I am most definately post menopausal that is the one I am most likely to be given. The onc intends going through all the side effects with me next tuesday. I want to be in a position to take anything they are offering even if it only increases my chances by a miniscule amount, so I hope I can cope with the SE’s.
Hi all
thanks for comments.
Jackie - i’m not triple negative.
Sharon x
Hello ladies
I see that Jackie, Dawn and Theresa have kept you up to date with information so hope that you are feeling more at ease with your diagnoses.
My IBC is HER2+ so as well as taxotere I started having Herceptin, I finished tax in Oct, had mx in November and finished 5 weeks of rads in Feb. My skin held up quite well through rads and by now the scar has healed quite nicely.
I have had 15 Herceptin’s so I presume I am nearly finished - although I am having treatment in France so I’m not completely sure exactly how many I will have.
I check out my skin every day looking for marks, this week I’ve had loads of mossie bites, and that worries me because from what Jackie has said often skin mets look like bites but don’t itch! Sometimes mine don’t itch, OMG, but I guess I’ve had so many toxins I probably kill them little blighters.
I really don’t like to look at all the statistics for IBC cancer, its too scary for me to deal with.
Take care everyone and hope the weather continues to be well for you. Don’t want to make you jealous but for the last week our weather has been 31 degrees, and we’ve been swimming in the pool.
Carole xx
Carole
Sounds like your nearly finished herceptin, I finish in Feb 2010.
Weather in scotland is always rubbish, rain again!
Sharon x
Well today’s the day - my first anniversary since i was diagnosed… This time last year i was having an ultrasound and biopsys and was given the results at the end of morning clinic… just to prolong the tention… make you sit there whilt everyone else at the clinic is seen and goes back home until i was literally the last person there…
It is a rainy day here today as well Sharon… I’m in Northumberland…
Carole - are you due to see your onc again soon? Probably best to mention the insect bites to them and see what they say.
Hi
Raining again in London as well.
My year anniversary is not until August. Back then I did not expect to get this far - but time moves on and somehow more positive thoughts prevail. With the help of all you lovely ladies there is usually more white than black if you know what I mean.
Celebrate tonight with several glasses of wine and congratulate yourself on how well you have done.
Love and Hugs
Andie