Try and avoid the web to do IBC reccie. All the positivity and info you need is right here. I made the fatal mistake of googling upon my diagnosis 2 years ago and scared myself witless. I had 2 tumours and 16 positive nodes removed, if I had believed the data I found on the net…! Only problem for me know is a wee bit of hormonal fall out though hopefully I will be able to get an effective antidepressant to help with the raging hormones and feeling a bit low. It’s the most frightening thing you’ll ever face, hearing the words breast cancer, then the follow up but it’s IBC. I log in every now and then here to remind myself of the wonderful inspirational lasses who are living proof that IBC is not a death sentence.
Hi all, just to let you know that this month marks my 10th year since diagnosis with IBC and I’m still well and clear of any signs. When I was diagnosed I didn’t know anyone who could say that so I just wanted to let you all know it can happen, and for more people as treatments improve.
Janeway2
dx Jan 2004 aged 35, with 1 year old son. Stage 3B, Grade 4, 10x12cm palpabable mass, node +, hormone receptors marginal, and they didn’t do HERstauts back then. Treatment: 6xFEC, mastectomy and node clearance, 20 Rad, tamoxifen for 3 years.
Welcome to the forum. I hope you will find support here from fellow members. You could also contact our Helpline to talk things over. They can offer practical information and emotional support at this difficult time. they will be open tomorrow from 10-2 and on weekdays from 9-5. The number is 0808 800 6000
Hi Becker what were your symptoms ? I’m just waiting on biopsy results . I went to the docs as my boobs felt generally sore and heavy , with a constant stabbing pain in my left . A week ago at my breast check I had 2 mamos , ultra sound and 3 core biopsy of my left breast . I have thickening nodes 2 areas of concern . I’ve convinced myself it’s not good news as my breasts feel different especially my left . I have a similar feeling in the right but they said my right was clear . The waiting for answers is driving me mad . Xx Jan
Hi Becker
I am sorry to read that you have this worry, along with the support here our helpliners are on hand with practical and emotional support so please feel free to call, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000
Just posting to give hope to any newbies. I was diagnosed 3 years ago Stage 3 Grade 3 IBC, and am now NED after chemo, mastectomy, rads and Herceptin, and I had a DIEP reconstruction a year ago. Good luck to any of you just starting out on your journeys. And there are other IBC ladies who were diagnosed several years ago who are still doing very well xx
Hope you can advise?
I am very worried.
Eleven years ago I DCIS, so had a lumpectomy and lymph node clearance.
Two months ago (same breast) or slightly more, I started with a clear discharge. The only other symptoms were my breast was warm and my nipple felt a little thick. I was referred to the breast clinic and they did a mammogram and a scan of the breast. Mr H, said it may be nothing to worry about but that he would see me in a couple of months to check it again. He also said if I get concerned to contact him.
I wasn’t sure what I should be concerned about or watch out for.
Anyway, it didn’t stop leaking. Then the day before yesterday it dramatically started changing. It gets quite warm, and although my nipples were always inverted, this one looks very dented like a hole. My skin is a pink (not bright) around my nipple which is very dark in the middle, which is now quite thick, hard and painful. It gets stabbing pains in it and the texture of my skin is mottled, like they say, like orange peel, but not quite as dented as an orange.
So this is my question, I have an appointment on Wednesday with him. However I’m soooo worried, can’t settle, sleep or stop thinking about it. Do you think I they would bring it forward to tomorrow or will they think I’m just being neurotic? I really think panicked because it seems to be speeding up. Should I ring them to bring it forward?
Kind regards
Audrey
Hello ladies, it’s been such a long time since I posted on here and had to re-register as I couldn’t recall my details! I was diagnosed stage 3C, ER/PR negative/HER2 + in June 2011, aged 36 (with 2 kids aged 3 and 6 at the time), with a 9cm x 8cm tumour and pretty much all my lymph nodes involved. I had chemo, masectomy & rads and a year of Herceptin and have been NED ever since. Have since had a DIEP (highly recommended!) and nipple recontruction. Coincidentally a woman I met through having IBC lived only 4 streets from me and she is about to celebrate 7 years NED.
At the time I was diagonsed I recall wondering if I would be alive to see my youngest start primary school and here I am 5 years later about to see my eldest start secondary school in 10 weeks. Survival for this dreadful disease is increasing all the time and whilst it is truely terrifying at times, there is always hope. I still get scared and sometimes wonder what the future will bring but 95% of the time I look to a bright, healthy and happy future with my children. I sincerely wish you lovely ladies all the same.
I am posting here because this is the most recent thread I found about IBC. I have some concerns, I wrote it in a separate topic but I thought maybe here I’ll find some more responses. (I am very grateful for the ones that I had there ) I am breastfeeding so it’s all so hard to say and diagnose. One day I discovered a strange looking white bumps on my breast (I had mastitis in that one week before) that looked more like acne. After couple of hours it turned into a red bumpy itchy rash. After another couple of hours ( I keep staring at my boobs as I am breastfeeding ) Then it developed into a big red patch, still with red spots on it. I went to GP, have been prescribed ointment for this, but two days later my nipple become red and swollen and also a part of my breast. I went to A&E, I’ve been told I have mastitis again, the previous one hasn’t been healed properly and it came back worse now. I had cracked nipples at that time so I actually believed that diagnosis. However this rash was making me worry. After antibiotics all the swelling is gone, redness and rash as well. However in the place when the rash was it’s still a slightly pinky dry patch. Not swollen but when I touch it, it changes it’s texture and looks like if I had goosebumps in that place. All the rest is fine, no pain, the only thing is that I am feeling strange sensation under my armpits and near the collarbone, however I know that lymph nodes are becoming enlarged when the body fights an infection (and according to doctors I have pretty bad breast infection) but I am still worried about that dry pinky patch. Did anyone experience something like that? I am so worried, I am having a breast clinic appointment in 6 days but I can’t stop thinking about it that it could be IBC… My doctor said: “Maybe if you weren’t breastfeeding I would be concerned but knowing this fact and your age it is very unlikely” (!). That’s why I am on antibiotics that actually helped but not with this pinky place. I live in UK. I am not English so I am not familiar with all the NHS system here… What should I do? Where I should go? What should I think about it? I can’t stop thinking negative about it, especially when I am looking at my little one…
I forgot to add that I found here a post from user Gatsby54 from 2007 that had the same problem with this rash. All her tests were clear but she wanted a second opinion and then she disappeared and never wrote again…
Hi ,it’s very difficult having such an anxiety hanging over you, 6 days can seem like an eternity.Your doctor is very probably right that this is mastitis but until you have further tests to rule out anything sinister it’s hard not to worry .Hopefully this time next week you will be able to breath a big sigh of relief .At the clinic they will most probably do ultrasound,maybe mammogram and if they see anything suspicious a biopsy under local anaesthetic.Fingers crossed you have your mind put at rest soon.
Hi it’s so nice to get response from all of you, much appreciated! I have no idea what to think about it. The breast looks ok, however I can still see the place when the rash was and the texture of the skin in that place is slightly different. Maybe it needs time to get back to normal? I went private today and the doctor said she’s seen some cases of IBC and she said it doesn’t look like it. To put my mind on ease she did an ultrasound and it was clear (However I know that biopsy is the best way to check it). They have also check my lymph nodes and said they are prominent but nothing to worry about as this is normal when breastfeeding. The rash came 3 weeks ago so I guess I would have some more signs till now? The only new things that I have is that I have like a burning sensation in my arms, especially one (opposite to that breast) but I think I could damage some nerves while carrying my baby… When I mentioned it to my doctor he went: I knew you would said that (?!) I guess he thought it’s because of being stressed as he knows that I am worried about IBC. Another thing is that my baby seems not to like that breast, he spends on it less time that on the other one. Coincidence? No idea, but I know babies doesn’t like breasts with cancer… I have an appointment next week as my doctor wants to see how I am progressing. Hope it will be fine… Thanks for your support ladies
Hi all i was dignosed with ibc bk end of June ,ive had all the tests and cat scan showing it hadent spread other than in my left breast and lymph nodes ,i start my first chemo on Thursday of this wk so im feeling a bit anxious as it creeps nearer.I will be having a masectomy and my lymph nodes removed later but im trying not to think that far and im taking one day at a time ,but i keep reading cannabis oil is gd have any of you lovely ladies tried this and if so how do you get it .
) Then it developed into a big red patch, still with red spots on it. I went to GP, have been prescribed ointment for this, but two days later my nipple become red and swollen and also a part of my breast. I went to A&E, I’ve been told I have mastitis again, the previous one hasn’t been healed properly and it came back worse now. I had cracked nipples at that time so I actually believed that diagnosis. However this rash was making me worry. After antibiotics all the swelling is gone, redness and rash as well. However in the place when the rash was it’s still a slightly pinky dry patch. Not swollen but when I touch it, it changes it’s texture and looks like if I had goosebumps in that place. All the rest is fine, no pain, the only thing is that I am feeling strange sensation under my armpits and near the collarbone, however I know that lymph nodes are becoming enlarged when the body fights an infection (and according to doctors I have pretty bad breast infection) but I am still worried about that dry pinky patch. Did anyone experience something like that? I am so worried, I am having a breast clinic appointment in 6 days but I can’t stop thinking about it that it could be IBC… My doctor said: “Maybe if you weren’t breastfeeding I would be concerned but knowing this fact and your age it is very unlikely” (!). That’s why I am on antibiotics that actually helped but not with this pinky place. I live in UK. I am not English so I am not familiar with all the NHS system here… What should I do? Where I should go? What should I think about it? I can’t stop thinking negative about it, especially when I am looking at my little one… 
