IBC Survival

Please be aware the IBC is NOT a death sentence! I have survied for 10 years now. According to what I read back then, 15 years ago it was 100% fatal, but I am living proof that that is no longer true! Hang in there!

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Hi

Thanks so much for that really positive post. Well done you

Andie

hi thanks for that well done i was so worried when i heard about it like we all do its nice to hear your doing so well

Hello girls

When I was first diagnosed I googled away, like you do - and nothing I read was very promising. In fact I printed something off of a French site I had looked at which stated that “usually after a dx of IBC the patient rarely survives beyond 18 months - 2 years”!

Imagine my horror - don’t want to scare anyone else - but, the Onc said that information on the internet is very misleading, as these days IBC is NO different to any other type of cancer, usually as it means neo adjuvent chemo, then surgery (in almost all cases a mx). He told me not to read anything on the internet because it was old and outdated.

So, we have a lot to look forward to and many thanks to Princeigor for letting us know how well she is doing.

(Doesn’t stop us worrying though does it)

Love Carole

Wow, that’s just the kind of post I like to read.

On diagnosis my Onc warned me that my prognosis was pretty poor, and quoted 36 months, despite me having not distal spread but node involvement.

16 months down the line, I am NAD … and long may it stay that way!

Princeigor, do you still have a primary diagnosis, or have you since been diagnosed with secondaries? I’m curious to know how long people have managed with not secondaries too.

Well done you!

That is good to hear…:smiley:

Did you have node involvement…? And was it hormone receptive or her2 positive…?

Theresa

Thank you so much for your post.
It really means a lot to all of us who have been dx with IBC.

I’m not an information seeker, I don’t trail through the internet, I know what I know from my own experience. However, as the other ladies have said, I knew my prognosis was not deemed great.
I’m 4 years post dx myself in October and am very encouraged by your 10 years and counting :slight_smile:

Jackie x

Thank you for your post. You’ve made my day. It’s sooo good to hear from someone who is doing so well. Hopefully in another 10 years you’ll be telling us all about that too.

I was given some hope by my oncologist that we would be able to eradicate the cancer (since it hasn’t spread outside the breast yet) but she qualified that with the warning that my life will be shortened. You see very few good news stories of long term survivors for IBC and I was beginning to think it was inevitable. If even one person can do it there’s hope for us all.

Thanks again, you’ve given me renewed hope for the long term.

Jan

Hi all

Thank you so much for this… I would love to hear from other IBC survivors. We all need positive examples as it can all be a bit OTT and we need to keep our attention on the light at the end of the tunnel, and realise we have supportive hands to lead us along. But oh my God it is dark in here. ‘Though I go through the valley of the shadow, I will fear no ill…’

As one saint said to me ’ Whatever you put your attention on grows’ so be careful to put your attention on L I F E.

Keep up the good work.

Diana

I don’t come to this site very often anymore, but wanted to add to the list of hope

I was dx with IBC in Jan 04 aged 35 - I’m still NED and so have been discharged from all but the annual mammo as recurrance is so rare after 5 years. I’m growing in confidence and planning a life well into the future, now expecting to see my son (now 7) grow up…

Love and strong wishes to you all.

Thanks for posting that - it is so good to hear of IBC patients who are doing well… Here’s hoping that the new chemo treatments etc these days mean that we will be here in 15, 20 years etc offering best wishes to new people…:smiley:

I was interested to hear you say that recurrance is rare after 5 years as i hadn’t heard that before… Is that for all types do you know… must admit i have been concerned as i know that er+ cancer can be bad for coming back after the initial 5 years…

Theresa

Hi everyone

love to see positive threads , especially concerning prognosis, i had a ld flap recon in May, surgeon done a great job, so happy I chose the recon now.

I think I have moved on quite a bit , from the mass of jelly on the floor, which was me at diagnosis, however, I do agonise over my prognosis score. Surgeon told me I was stage 2 lobular 2 cm both er and pr pos but her 2 negative one node positive . The bit that keeps going over in my head is that she said my prognosis score was 4.5, with 8 or 9 being good, I take now that my prognosis is poor,I am half way through E/CMF and the oncologist told me that I was only having chemo as a sort of insurance for the future, so I am a little bit confused here but to scared to ask any further questions, about my prognosis.

I jost hope that new cures are going to be found pretty quick for us all to remove this scary worry about the future.

luv to all xx

I had a real downer this week and my mum found me this link.

For the 3rd time this week, I have tears in my eyes. But this time they are happy ones.

Thank you

Pash hope you have a better week next week, can I just say you look really stunning in your pic.

take care

love

Carol x

Thanks, Carol. Sweet of you to say. Next week’s too far away, going for the good weekend! I fancy cinema tomorrow (if I can stay awake!) and lunch for my best friends birthday on Sunday (the biggest roast ever I expect!)

Look forward to getting to ‘know’ you x

Hello ladies

Sorry to hear that some of you IBC Newbies are feeling a bit down about the prognosis, but they do get it wrong you know and these days treatment is much better than it used to be, so please try to be positive.

It’s scary for us all, I am only a year past chemo finishing and almost 1 year to having the MX which was quite radical and I still have physio treatment for the poor use of my arm and pain.

But I thank each day that I am here, and hope that we all enjoy many good years to come with new treatments and also hope they review the prognosis statistics soon so we can all be more positive.

Take care all

Carole x

Hi Carole - that’s great news and of course you are right. My PMA has returned as I’ve had a great weekend - aquarium and shopping and DVD with the man yesterday and a raucous, lazy and glutzy Sunday lunch with brilliant friends at the pub today. I don’t need to eat for a week!!!

x

Ok, so the stats I found that put me on a downer last week were:
25-50% chance of me making it to 5 years.

So I asked my oncologist today what stats she has.
25% chance of making it to 10 years with NO treatment.
Add 35% with treatment.
So 60% chance of making it 10 years.

Don’t believe all you find on the internet!!!

Most of the stats on the internet are out of date anyway. It takes years for new treatment regimes and better awareness to have an impact on them. Things have moved on hugely in the last 2 years but it will be another 2-3 before the stats reflect that.

That said, they can come in useful sometimes. You know what they say about statistics. If I decided I wanted to retire early, for example, I could use them to influence my employer to letting me go.

Congratulations of finishing your chemo Pash. Once you get the side effects out of the way the worst is over. Raise a glass or two for me.

Jan xx

Pash - there is an online form you can use to see the chances of survival… i was really pleased when i found it as my chances shot up on it compared to what i had seen elsewhere… lol

cancer.lifemath.net/breastcancer/therapy/index.php

you have to put the tumour size as what it was when first diagnosed - not after the op…