Hi there,
Last week my Mum was diagnosed with inflammatory breast cancer stage 3. I am 23. It has been a difficult week and I am trying to stay as strong as I can for her but just can’t help feeling so down. She’s terrified and I want to help her but don’t know how. We are still waiting for a CT scan to see if it has spread but my mum is having bad back pain and various aches around her body. She’s convinced this means it has spread. I don’t know how to help her or what to do to make her feel better. I try and tell her not to jump to conclusions but it’s so difficult when she’s already had such a shock. She just thinks of the worst. I am trying to stay increasingly positive for the both of us. Chemo is due to start in 3 weeks, then surgery, radiotherapy and hormone therapy. I am so scared. I know how rare this form is and even though she is strong I am terrified of the prognosis. Does anyone have any advice? Thank you in advance.
Hi kikajess
I am sorry to read your post, it sounds like you and your Mum are going through a very worrying time at the moment and I am sure you are being a great support to your Mum even though you are scared yourself
I am sure your fellow users will be along soon with support for you and our helpliners are on hand for both of you on 0808 800 6000 weekdays 9-5 and Saturdays 10-2 so please feel free to call and talk things through
I am posting a link to the information on the BCC site about IBC which I hope you will both find helpful:
breastcancercare.org.uk/information-support/facing-breast-cancer/diagnosed-breast-cancer/primary-breast-cancer/inflammatory-breast-cancer
Take care
Lucy BCC
Bless you x
It is such a scary time and the shock is awful! I think we all react the same way initially so it’s natural. Things will calm down for you and your mum once she starts on the treatment. I feel for you because my daughter is 17 and has gone through the same as you… watching on, trying to be brave. I don’t want her being upset privately I want her to share her fears so we do talk about how we are both feeling. Make sure you do the same else you will be ill yourself. You can do no more than be there but make time for yourself, carry on doing fun things yourself. Try to live in the moment, one day at a time. Nothing is guaranteed whether it’s cancer or a car crash we don’t know what tomorrow brings.
It’s amazing what they can do these days so don’t think the worst unless the worst happens.
sending love x
Hi There…
Felt I had to join this site just to message you 
I was diagnosed with IBC back in Feb this year and know just how scary it can all be. Having this type means also that treatment is approached slightly differently and even some medics won’t have come across it before. I have 3 daughters and two of them are 24 and 22 and I know it was and still is really hard for them as they want to support me but they are also at an age where they are ready to really step out completely on their own path in life… I will send this link to one of them and I’m sure she will share how things have been for her over the past 6 months… I am crossing all my fingers and toes that the aches and pains are just that - I felt exactly the same and prepared for the worst but was happily proved wrong!
Treatment is no picnic but focusing on each stage and still trying to get the most out of each day has been the approach that has got me through to this far…I did 6 cycles of FECT which meant the cancer became operable…and I had a mastectomy and lymph removal only 11 days ago… radiotheraphy and hormone therapy next on the list!!
Don’t think you need to be “strong” as your mum will be as worried about you as she is about herself if not more so - talk to her, listen but also tell her how you feel. Find someone else you can talk to as well so if you want to cry when you feel she can’t deal with it you can. She will go through highs and lows as will you…I’ve read a lot about being positive and I actually couldn’t quite see things in that way as IBC is a long and hard journey to fight. I prefer to think of it as constructive coping - not sure this works for everyone but I wanted to face it all - deal with the negatives so they could be parked and then deal with the treatment and LIVE…and living means each day that I am given…no matter how many they are…? Means as a family we have done lots together, might be restricted due to my treatment but we’re still making those all important memories together…
I’ll happily discuss anything with you both that might assist…
Good luck to you both - huge hugs xxx
Hi,
My mum sent me the link to this, I have been in exactly the same position as you so can completely understand how you feel.
My mum was diagnosed back in february with IBC and its just awful, nothing can ever prepare you it. It kind of felt like a double whammy; not only has my mum got cancer but she has the cancer that nobody else gets. It makes things scarier and harder to underatand, there is less information out there and less people who have gone through it. There were days when I would be endlessly googling, especially in the beginning because you get information in drips and drabs, all the scans and results seem to happen really slowly so you’re never sure what is actually going on. It gets really frustrating especially with all the waiting because all you really want to know is “is my mum going to be okay?” all of the medical gumf means nothing compared to that.
I guess the only advice I can really give is that as hard and difficult and scary as it is for you, your mum will be feeling it ten times more (her brave face is probably very good), all you can do as her daughter is let her deal with this in the way that she feels comfortable with, just be the person that if she needs to rant or cry or talk you are there. Sometimes you need a bit of escapism too, days where you don’t have to talk about cancer and can have fun and have a laugh. I genuinely don’t think that my family have laughed as much as we have since my mum’s diagnosis. As cliche as it sounds; life really is short and getting a shock like this made me realise that the time you have is all you have so make damned sure it counts.
I have no idea if any of this has helped you at all, I hope it has and of course if you do want somebody to talk to who knows what it’s like then I would be more than happy to be that person
Good luck to both you and your mum and I really hope you get good news.
Lovely insightful post Penny. I want my daughter to read it. Thank you and love to your family. X