Just been diagnosed with IBC, very scared

Hello everyone

I’m new here and feeling a bit desperate for support and help. I found out 2 days ago that I have inflammatory breast cancer, which has spread to my lymph nodes. I’m only 35 and have two very young children who really need me, and I am finding it very hard to stay positive. IBC seems so rare and so serious, I am struggling to believe that I have any chance of surviving this.

I have a bone scan and a CT scan next week and then have to wait a week to see the oncologist for the results. I am trying to stay positive and hope that this remains primary cancer but it’s so hard. I’m still in shock and I can barely sleep or eat, and I’m struggling to be around the children without being upset.

I just need a little hope.

Hello Cym,

Welcome to the BCC discussion forums, I’m sure you’ll get lots of support from the many informed users of this site as they have a wealth of experience and information between them.

While you are waiting for replies I have put for you links to some of BCC’s publications which you may find useful.

IBC:

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/72/

Resource pack:
breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/82/

Treating Breast Cancer:
breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/88/

If you feel you would like a chat with someone away from friends and family or just a good ‘listening ear’, then BCC’s helpline staff are here for you. Calls to the helpline are free, 0808 800 6000, lines open Mon-Fri 9-5 and Sat 9-2.

I hope this helps a little. Take care,
Jo, Facilitator

Hi Cym
Well the one thing you will get here is a lot of support!
There are lots of young Mums on here, and l am sure they will soon be along to ‘welcome’ you, and offer lots of support and advice.
I cannot help with the IBC, l do have lymph node involvement though, and l know how frightened l am with that.
We are all terrified when we are first diagnosed, but as time goes by, with the support of the forum and your breast care nurse, it really will get easier, it is a horrible rollercoaster, but you will get there.
We all come away from diagnosis thinking this is it! only natural, it is too much to cope with. But just take one stage at a time.
The bone scans and CT scans are always a worrying time, but once they are done, your onc will arrange your treatment.
Hope someone comes along with more answers to IBC for you
Take care
Sandra xxx

Hi Cym
So sorry that you have to join us. I am 38 with two small children they are 2 and 5. You would be surprised how many others there are. When I was diagnosed with IDC in march I could not look at my children without crying. I will say it does get easier with time but for now I hope you don’t feel too alone. Your reaction is perfectly normal and you need be allowed to feel upset.
Hopefully soon you will get a treatment plan and then you will know all of the things they are going to do to help you. There are a group of women on here with IBC so hopefully they will be along soon. Please post any questions or just share how you are feeling. Dx

Hi Cym - sorry that you have had to join us but welcome…

Here is a link to the IBC subforum - breastcancercare.org.uk/forum/inflammatory-breast-cancer-ibc–f103.html as you can imagine we are a very small group as IBC is so rare but we are very supportive.

the first thing i would say is please don’t read too much about ibc on the web as alot of it is outdated and survival rates are improving all the time… (just read about it in information sheets on sites like and macmillan etc…)

i so remember what it is like when you are first diagnosed… i was diagnosed 27th May 2008 when i was 43… and like you had to have bone scan, ct scan chest xray and heart scan the first week… (the heart scan was to check my heart was okay for the type of chemo my onc had in mind…)

You are almost sure to find the treatment will be six months chemo, mastectomy, rads and then hormone treatment and or herceptin if suitable for your tumour…

now the hope - my tumour was 5.5cm at diagnosis and by the time of my mastectomy had shrunk to 2.1cm x 2mm (so like a tiny piece of cotton) and even along that it was a mixture of dead cancer cells and dying ones… Like you at diagnosis we could tell a lymph node was involved and after chemo they could just find dead cancer cells in one lymph node…

I’m not going to pretend it has all been easy - but it really is “do-able” and we will be here for you every step of the way…

Love Theresa x

Hello
I am sorry you have had this diagnosis. You are right in the thick of it at the moment. This is a very hard time - it is all so raw but what you are feeling is perfectly normal. It does improve though. Once you get to grips with exactly what is going on with your cancer and your treatment you will feel more in control of things.
My son was only 14 months when I was diagnosed. I do know exactly how you are feeling. Just hang on to the fact that being scared and shocked is perfectly normal. Your life has been turned upside down. But it will improve I promise.
Good luck and take care.

Hello there,
just to re-iterate what Theresa said,DONT read things that are going to scare you,I think ignorance is bliss,specially if you have a vivid imagination. My DX was Nov 08,like Theresa had chemo first then MX and they found 2 tumours plus 5 cancerous lymph nodes. Then rads which I found a lot worse than I expected plus 8yrs on tablets and this time last year I felt very pessimistic but now Im living in Spain and loving every day,my Marks & Spencer mastectomy swimming
cossy is a bonus. How ever good life is now,Ill never forget how terrified I was in Nov08 and Id already seen my kids grow up,even my grandkids are teenagers but Gods good and Im hoping to help you see that the light at the end of the tunnel is NOT an on-coming train. Dont refuse any offers of help with the children,youll almost certainly be shattered,Im still catching up on the sleep that I lost when I lay worrying myself silly. Put your faith in the docs and do what they say,youll get through this,take care love Mags xx

hi cym

i really hope some of these posts give you some much needed hope. i am so sorry you have found yourself in this position and i understand how raw you will be feeling.

My cancer was ductal not ibc like yours.( hopefully “was” as have had lumpectomy and would be lovely to think that all the chemo and rads i am having now are pointless as its all gone and never coming back anyway)

But i am your age-ish (36) with 2 little boys aged 5 and 2 who need me very very much and i, like you, am terrified at this thing that has happened to me so out of the blue. It feels like my life has been hit by a truck and i am now on a different track and the rest of my friends etc are still travelling down the other track, waving at me , being sympathetic but obviously just getting on with their old normal lives.

However, the good news is that you will get your head around it more and more, Its bloody hard, and isn’t a straight line of improvement, theres many good and bad days. But the intial shock/terror period subsides and you find out more about your tumour and treatment plan, and you start, little by little, to cope with it and appreciate your good days. I am about to have my 4 th chemo out of 6 tomorrow and i feel sick at the thought, but it is doable and i only have to look at my boys to get the motivation to go through it again.

How old are your children? Do you have a good support network round you? I have been really surprised at how well mine have coped . Just try to keep their lives on an even keel and accept help from everywhere. You will be amazed by the way some people you wouldn;t expect really step up to the mark. My sister’s husbands mum does me a batch of plain home baked buns every few weeks as she knows that i find them tempting to eat and eating has been a real problem for me since my appetite shut down after diagnosis.

Don’'t read too much ahead, allow yourself to deal with the shock, shout and scream if you want and above all be kind to yourself. You are not alone and we will all support you as much as possible. I have bumped up my thread from my first diagnosis ( 36 and diagnosed…)as that may help you to see the progression your emotions and ability to cope will have, plus you will see what you are feeling is totally totally in the spectrum of normal, even if being in the small number of girls diagnosed with this shit so young is totally toally unfair and incomprehensible,

take care, pm me if you need to

Vickie

Hi Cym

Just take a step back and give yourself some time to think about you and the children and forget the diagnosis as much as you can.

In Feb 2008 I could have written your post almost word for word. I was 40 when I was diagnosed with a 15cm, stage 3, grade 3 IBC tumour.

My baby boy was just 5 months, and my daughter 2 years.
It had spread to my lymph nodes and had all the tests you’re describing, and some more too!

More than two years, six rounds of chemo, a mastectomy and 25 sessions of radiotherapy, I’m still here and (hopefully) disease free.

IBC is the big bad ogre of breast cancers perhaps, but it is beatable and we’re all here to help as much as we can.

Please feel free to PM me if you want to chat more, or else I’ll just catch up with you around the boards.

Remember to be kind to yourself, Rebecca x