I have posted in “Do I have BC” & also “Waiting for results” but now I am joining “The Club”
Yesterday I was officially diagnosed with Aggressive Inflammatory Breast Cancer (IBC), stage 3…it has spread to my Lymph nodes but possibly further but I have to await CT Scan in about ten days to know more along with MRI.
My mass is 12cm as it stands at the moment. As I understand it my diagnosis is quite rare and currently inoperable so I start Chemo next week for 3-4 months to try and shrink it, hopefully followed by Mastectomy and then radiation and later on possible reconstruction.
I am lucky to be under great BC care, doctors and a lovely BC nurse and have a great hospice nearby that specialises in patients like me.
I intend to fight this tooth and nail and I will, I am 32 years old, married with 3 children, 4,8,and 12 and a wonderful husband, friends and family, so I have lots to fight for.
Is there anyone with a similar diagnosis? There is not much info out there about IBC but I intend to change that!
I’m also just looking for friends who can help guide my way and vice versa…Thankyou for all your support so far!
My lump was also inoperable for awhile. I had my mx in nov and am now on rads. Hang on in there, there is plenty in the cupboard to deal with this. This is the place for support.
Hugs to you
X sarah
My lump was also inoperable for awhile. I had my mx in nov and am now on rads. Hang on in there, there is plenty in the cupboard to deal with this. This is the place for support.
Hugs to you
X sarah
Sorry you have had to join us but there are many great ladies on this site with lots of information and advice. I am also young at 30 years with 3 children and at times have had some bad days they are the ones who keep me smiling. It’s great that you have such a positive attitude and wish you well through your treatment
Hi - I’m so very sorry that you have had to join the club… I used to practically live on here - but in the last 15 months or so have only posted twice… Anyway - I am also an IBC patient and just wanted you to know there is an IBC subforum on here… share.breastcancercare.org.uk/forum/inflammatory-breast-cancer-ibc–f103.html if you look on the left hand side half way down the page is a section “talking to other people in a similar situation” and the IBC section is in there…
As you say IBC is incredibly rare… when I was diagnosed in May 2008 I was the first IBC patient in 4 years at my hospital so it is really easy for GPs to go their entire career and never see or even hear of a patient with it…
This is a really scary time and sending you much love… I remember how I felt - you will probably find the next week or so is incredibly busy - I ended up having a nuclear bone scan, chest xray, ct scan and heart scan (the heart scan was incase we found out I would need a drug called herceptin) but honestly everyone says that things do get a little better once you have the full picture and treatment starts…
Do have a look at the IBC subforum… it has always tended to go in patches of busy and quiet times as there are so few of us - but the girls there are lovely and will try and support you as best they can…
Finally a bit of hope… I also had lymph node involvement at the start but luckily had an excellent response to chemo and am still here three and a half years later… Take care and best wishes xxx
I too was diagnosed with IBC in October. I am currently undergoing chemo, 6 x TAC, I received no 4 last Friday with 2 more to go before I have mx and then probably rads. I know what you’re going through, it’s a really scary time for you at the moment but it does seem to be better once you know what your treatment plan is. I had bone and ct scan which were clear, it has already got to my nodes though.
PM me if you want, I hope you don’t have to wait too long for the scan and results.
Dear Emma
My thoughts and prayers are with you. I had great difficulty accepting a diagnosis of breast cancer and like you am going to fight this tooth and nail so go for it. The first couple of weeks have been hard but am getting there and you will too hon.
Many hugs Emma xxxxxxxxxxxxx
hi emma it is a normal procedure with ibc you have chemo first to shrink the tumor then mx then rads and also herceptin if you are her2 positve which i was i was diagnosed sept last year i had a few complications but now iam cancer free and getting my life bck good luck with your treatment and stay positive x
Just wanted to say that I have been recently diagnosed and its a scary place to be in but I have found such comfort on this site and it has given me hope and courage … hang in there and keep coming back here to let me know how you are xxxx ((( big hugs ))))