Would welcome support from other IBC sufferers

I was diagnosed with IBC on the 30th April 2013 and am about to go in for my 3rd cycle of chemo. Thankful that I saw my GP straight away, he referred me to the Breast Clinic and I was diagnosed within 8 days of the first symptoms. Had my first chemo within 19 days of diagnosis. However there is evidence of cancer in 2 sites in left breast and in the lymph nodes. Possibility of some spread to the liver. However cancer is responsive to Herceptin and as treatment began so swiftly, I’m hopeful.
I am 62years old and recently retired. I had a busy and active lifestyle and thought of myself as fit and healthy for my age so this has come as a bolt out of the blue. I don’t appear to fit the usual profile for this type of cancer.
I thought of myself as breast aware and have attended all my screenings but until this happened I had never heard of IBC and it was by chance I acted on the symptoms quickly.
I’d welcome support from others in my situation. the plan is for me to have 6 cycles of chemo, introducing Herceptin from cycle 4. This will be followed by a full mastectomy of the infected breast and removal of infected lymph nodes. If the cells in the liver don’t respond to chemo this may involve further surgery. Further treatment after surgery.
Have you been through this and how are you coping?

Hi Roo and welcome to the BCC forums

In addition to the support you will soon have here please feel free to call our helpliners for support and information on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays

BCC have published IBC information which you may find useful too, you can read this and about further support from BCC via the following links:



Take care


Thanks for welcoming me.

Hi Roo50, sorry that you find yourself here , there are a few of IBC girls but don’t come on here very often, I am 2 years since Dx and currently NED, I will send you a private message.

Hi Roo!

Thought I would post too. I am 18 months post diagnosis and am friends with Jean above! I am 33 years old and have a blog at Redirecting.... If you use facebook we do have a group there too for us UK IBC ladies which we use more often.

Sorry you are here but there are ladies here who can and will advise you. I have so far been NED since september :slight_smile:

Emma x

Hi Roo.
I too have an IBC diagnosis. I am almost at the end of my treatment and all has gone well. If you use facebook pls check the group IBC Support UK. I have sent you a mmessage
x catzooo

Thanks for your message it was very reassuring

Will look you up on FB. Good to have a support group as IBC is so rare.

Hi Roo I was diagnosed with IBC, which had spread to lymph nodes and possible liver mets. After completing chemo, mastectomy and radiotherapy, I now continue to take tamoxifen which I will take for 10 years, I have been in remission now for 8 years (I’m 54). It was never conclusive it was liver mets but the oncologist was pretty certain it was and that the chemo did its job. Just wanted to give you some positive news as I know that was important to me at the time.
Good luck.

Thanks for your heartening message. Your experience seems very similar to mine so here’s hoping the treatment does it’s job. I’m in for my 3rd session of FEC-T tomorrow.

Hi everyone

I too was diagnosed with IBC in January. This week I will go for my last chemo treatment (4xFEC + 4xDocetaxel), and have a consultation with the surgeon on Friday. Does anybody know the chances of recurrance? I will be on Tamoxifen for the next 5 years. Although only my right breast is affected I am considering a double mastectomy but Im not sure if this is a little extreme?


I forgot to say that Im 44, and there were no secondaries detected from bone/ct/Mri scans, although some lymph notes are affected.

Hi Paula, sorry you find yourself here , hope you are well, in answer to your question I think there is a high chance of recurrence with IBC because of the skin involvement, I am 2years and 4 months since diagnosis and so far I have not had a recurrence, I am stage 4 but currently NED, we have a little group of ladies with IBC on facebook if your interested let me know and I will send details,
Jean xx

Hello from me too, 18 months post IBC diagnosis and currently doing well. Had the full works, 6 x FEC-T, mastectomy, ANC (7 nodes affected with little cancer in them), rads, Herceptin and on Tamoxifen. Prognosis is generally not as good with IBC but it is not impossible to absolutely fine, so head up :slight_smile:

Thanks for your replies ladies, both of your stories sound positive so thats a bit reassuring. Im so up in the air with all this, knowing reconstruction is a long way off. Did you both opt for double mastectomy? i do have a facebook account so any input is welcome at the moment.
paula x

Hi, Trish here I was diagnosed with immflamotry breast cancer in December 2012, with three negative receptors. I have just finished six months of chemo and will have surgery removing breast in July, then radiation. I just wondered if there is anyone else out there wiith this, with three negative receptors. I have been tested to see if I have the Braca gene as lost both my mother and sister to breast cancer in their forties. It came back inconclusive as I did not have braca 1 or 2, however they are in the process of trying to locate a braca 3 gene as they think it must exist because of cases like mine with a strong family history, I also have two aunties whop have surviived breast cancer. Because of my family history I was having mamograms every year but they showed nothing, my daughter has been advised to have MRIs as they are more accurate in the under 30s.

Hi Paula try not to dwell on what might happen and just deal with the here and now. I was 46 when diagnosed had right breast removed with chemo and radiotherapy following. My oncologist recommended I stay on tamoxifen for 10 years because of the aggressive nature of IBC. I suggested left breast removal but he said there was little point as IBC Can return in the chest wall. eight years on I never think about reoccurrence. I know it’s scary but just take it one step at a time and don’t project too much into the future.
Good luck Roo50 with the chemo it will be over soon.

Thanks for all your comments. I have now had my last chemo and surgery looks to be 3 weeks away. I had a consultation with the surgeon who pretty much said the same as above, in fact, he was quite frank, stating im more at risk of reoccurance of what ive already got than developing a new primary Cancer. Going fowrard, how can IBC ladies continue to be breast aware after mastectomy? I worry that an annual mammogram will not be sufficient due to its aggressive nature?

Hi Paula, I have regular mammogram on left breast only. Guess there is no way to my knowledge of checking where the breast has been removed, nobody has checked mine since I was discharged 3 years ago. However it’s always best to be vigilant and trust your instincts if you think something isn’t right. That said, the further away from diagnosis you get the less you will dwell on reoccurrence. Never underestimate the power of tamoxifen to keep this at bay. Talk to your oncologist about taking it for 10 years assuming you get on with it, it may give you some piece of mind.

Hi roo50


I had what looked like mastitis in late 2006; diagnosed as IBC in 2007, took 6 months to diagnose. IBC does seem to be very variable…  Surgeon did lumpectomy as he felt he could get sufficient margin so I can still have mammograms and MRIs for monitoring, which gives me some reassurance. After the very frightening IBC diagnosis, I’m still hanging on in!


Turns out I’m also BRCA2, which came through after all the ops and treatment, so I chose to have a BSO . 


Not sure how much use this is to you except you’re not alone… Very best wishes, hope the chemo has gone well. 


Invasive ductal carcinoma Grade III, ER + PR, HER2 negative. Neo-adjuvant chemotherapy (EC & taxol 4+4) therapeutic mammoplasty, axillary lymph node clearance, contralateral reduction, radiotherapy.)