Hi all,
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
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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
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