Looking for anyone around 27 or under 30 who has been diagnosed or anyone who has had IBC. Please shed some positive light - all I tend to hear is ‘oh you are young!’ And no one had ever heard of it.
I was diagnosed back in November after discovering lump under left breast in September month after followed by swelling, alot of pain and then redness. Back and forth from GP as not easy to diagnose, they thought matisis, so prescribed antibiotics and eventually refered for a scan. (Not got kids) Started chemo after 2 weeks of diagnosis and nearly finished. Tumour has shrunk from 7cm to around half the size. Due to have Diep flap surgery april 24 followed by radiotherapy. My diagnosis is ER+/PR-/HER2-, in lymph nodes. No family history, genetics show no BRCA gene.
Would be great to hear from anyone who has similar diagnosis and positive stories. You can never be too young!!! Xx
I discovered a massive lump in my left breast whilst on holiday last year. By the time I had been seen by various departments, my breast was so swollen and heavy I had to use a walking stick to walk. I was told by my oncologist it was IBC, not curable but treatable and he was optimistic of treatment. It was in my liver, neck and lymph glands. Four days after first chemo treatment of docetaxel the swelling had gone and was back to normal size although I could still feel the lump. By the second treatment I couldn’t feel that either. After completing 6 cycles of chemo I had a scan and all cancer cells had gone. I am now on phesgo injections every three weeks and had a further scan yesterday. My oncologist has told me when that stops working, and it will, he has a plan B and a plan C The worst of the side effects have now gone i.e. fatigue was the worst. My hair is now growing back but my nails are a mess and don’t seem to grow at all and still a strange colour. I still have bouts of diahorrea and my eyes stream constantly as if I am crying. All in all, better than the alternative. Hope this helps
Can someone explain what 6 cycles of chemo actually means ?
Am going in to get my left breast checked out
It’s very swollen and itchy and has red splotches on it with nipple flattening
Very scared
Im sorry you didnt get a reply here. I hope you got your question answered elsewhere on forum. A cycle is a dose. A round is a set number of doses. Your cycles might be weekly or maybe once every three weeks depending on regimen. I hope you are okay. I was diagnosed with triple positive IBC in April 2024. There was no cancer present after one round of chemo and a mastectomy and node clearance. I still had radiotherapy as trimodal therapy is the standard treatment for IBC. We are a small bunch here. Thinking of you. X
I’m so sorry to hear that. I was diagnosed on weds and still waiting for further tests. They’ve done a skin biopsy and I have a bone scan today. My mri is booked for Tuesday and not had a ct scan appt yet. I just feel so helpless as I know this needs to be dealt with urgently but that feels impossible with these wait times. It’s been over two months since I first found it so time is not on my side. I have a 1 year old and I’m so sorry scared of leaving her
They haven’t. But I know, I have all the symptoms. I pushed the surgeon and he just said it might be. It’s the worry that because it’s so rare he just doesn’t understand the severity of it. Did you find you were sped through testing once they suspected it? My nurse said nothing will change in 3 weeks, it doesn’t move that fast. But she’s not accepting that it’s IBC. Based in London but considering staying with family near Portsmouth during this time for support. How about you?
Hi @Beccc i had ibc triple positive stage 3 grade 3 and in lymph nodes. I had 6 chemos last year, smx full lymph node clearance, radiotherapy I only had partial response to chemo so I’m back on it. I had a large tumour. Sometimes I’ve had to be my own advocate because my hospital had no idea about this type of cancer. Have you been given a treatment plan yet x