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Forum: Inflammatory breast cancer (IBC)

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They told me there was nothing to worry about

My story is that having been told for four weeks that I was perfectly health. I was diagnosed was inflammatory breast cancer stage 2 and after tests told it had spread to the bones. Not bad considering I was told not to worry. As you can imagine there ...

Posted by Sunnychair on Thu Jan 26, 2012 10:42 pm with 4 comments

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Hi Girls, I have bumped up another IBC thread - EmsyLou 79 (Emma) is also going through IBC. She has a blog on Facebook which is worth a read. I've bumped up her original posting with her blog details for you. Hugs to you all Axx

AnnieK68, Sat Feb 11, 2012 9:43 pm
Newly diagnosed with IBC yesterday :0/

Hi ladies, I have posted in "Do I have BC" & also "Waiting for results" but now I am joining "The Club" Hello Ladies, I have been pointed in your direction by "Rhapsodyangel". Yesterday I was officially diagnosed with Aggressive Inflammatory Breast ...

Posted by EmsyLou79 on Sun Jan 01, 2012 4:03 am with 15 comments

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Bump for Sunnychair

AnnieK68, Sat Feb 11, 2012 9:38 pm
chest wall reccurrance

i have had my second reccurrance, more nodules appeared in my skin on dx side plus this time a chest wall reccurrance, starting more chemo in couple of weeks, the having another op to remove the muscle and the affected skin + tummy tuck, is there anybo...

Posted by lollypop59 on Wed Feb 08, 2012 1:28 pm with 5 comments

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Hi again lolly As you know I'm not an ibc lady but a TNBC recurrence in chest muscle lymph nodes like moser. Previous separate hormone positive primary in opposite breast. No chemo for that as small grade 1. Had Epi-CMF 4 + 4 for 2nd primary as grad...

Lulu34, Thu Feb 09, 2012 7:44 am
FOR IBC LADIES

please can anyone tell me if they have had two local recurrance in ten months, i am so stressed i had nodules last sept removed cancer cells from oringinal dx now i have 3 more nodules appeared again not sure what they sre yet but seeing surgeon next t...

Posted by lollypop59 on Thu Jan 12, 2012 3:58 pm with 5 comments

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hi newyork, its nice to read that i am not alone, it does not help because they are saying it does happen but its rare because are had ammediate recon, i had some nodules appear on my recon 3 months ago, i had them removed, did not need any fur...

lollypop59, Tue Feb 07, 2012 4:00 pm
How do they diagnose IBC ?

Can someone please confirm how they diagnose IBC ? I've been told by my breast care team that there is "Suspicion that this may be either inflammatory cancer or Paget's disease". They have therefore taken further biopsies of my right areola and als...

Posted by angelherts on Fri Jan 27, 2012 8:58 pm with 3 comments

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Hi Angelherts, I had both pagents and IBC, they could tell by the look of my skin on presentation, my nipple had dry skin on it and my breast had 'orange peel' appearance, but they also did biopsy's to confirm IBC. As has been said there are a few of u...

tillybob, Sat Jan 28, 2012 10:10 pm
Back for 2nd post op check in October

Hi all Finally I've got my appointment to have a mammogramm which is followed by an appt with the surgeon on 5 Oct. I also have a first appointment to see the plastic surgeon the following week, so at last I hope to move things forward. It will be i...

Posted by peacock on Wed Sep 09, 2009 9:28 pm with 3 comments

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sorry i forgot to mention i had the lattimus dorsi muscle flap from the back, and they basically monitor you very closely while you are being operated on. hope this helps you .

lollypop59, Tue Jan 17, 2012 5:42 pm
Paranoia - here it goes again!

Hello ladies Yesterday I noticed ONE red spot about an inch away from my scar, today its still there. I tried not to think anything of it yesterday, put it to the back of my mind, hoping it would be gone today, but its still there. I know its stupid...

Posted by peacock on Tue Jul 28, 2009 9:33 am with 6 comments

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hi peacock, i had a red raised spot appeared it turned out to be nodules, i had four altogether but only one was red, anyway i has them removed and they said it was some cancer cells left from original dx, but no further treatment needed. hope t...

lollypop59, Sun Jan 15, 2012 8:31 pm
found the ibc section..:)

hi all, im jo and was just diagnosed with ibc on tuesday, i posted on the site but i think i was at a different part, i found the forum really comforting after everything i went through and will continue to check back on here to chat with others in a s...

Posted by jominks on Thu Aug 11, 2011 8:35 pm with 27 comments

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Erin I remember both your posts well, as there are few of us with ibc. I am so sad for you and hope you can take comfort from the obvious love and support you gave each other. Rest in peace Jo, my prayers to you both. Sue

Blackspotk, Sun Jan 15, 2012 2:57 pm
local reccurance

i have had a local reccurance last sept,they were nodules some cells left from oringinal dx did not need any further treatment, they said i was NED, but now three more nodules have appeared again on sat, going to see my surgeon next thurs has anybody e...

Posted by lollypop59 on Thu Jan 12, 2012 3:50 pm with 0 comments

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i have had a local reccurance last sept,they were nodules some cells left from oringinal dx did not need any further treatment, they said i was NED, but now three more nodules have appeared again on sat, going to see my surgeon next thurs has anybody e...

lollypop59, Thu Jan 12, 2012 3:50 pm
Life after treatment

Hi everyone, this is the first time I have been on this forum, though I have read many, many comments and stories.. Hellow to you all and hope you can help.. I was diagnosed with IBC in Feb 2010, I have had chemo (TEC and taxotere), mastectomy with ly...

Posted by Pinkhair on Sat Jan 08, 2011 3:30 pm with 29 comments

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hi jan, hope you are well i have got another worry three more like bumps have appeared again under my skin on rec side, got to see my onc next thurs, it just bloody never ends i am hoping its nothing sinister. best wishes to you an...

lollypop59, Thu Jan 12, 2012 3:01 pm
ibc ladies

hi there everyone, just thought i would start a new thread, anybody got any holidays planned for 2012, i am going to egypt in feb and dubui in nov cant wait for that.

Posted by lollypop59 on Tue Jan 10, 2012 7:25 pm with 8 comments

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hi marybrim, yes i think tha t is the best was we have not booked yet i have got a appointment with my onc next week and also a ct scan on the 31st so we will book after then providing everything is ok . best wishes ...

lollypop59, Thu Jan 12, 2012 2:28 pm
two more small lumps have popped up on my reconstruction aga

two small lumps have appeard on my reconstruction again, since i had the last four removed in oct 2011 waiting to see my surgeon next week it never ends.

Posted by lollypop59 on Mon Jan 09, 2012 1:45 pm with 3 comments

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Happy new yr to u too. Fingers crossed these new nodules are unrelated + u can put it behind u ;) good luck xx

Gingerbud, Tue Jan 10, 2012 11:59 pm
Inflammatory breast cancer .. so easily misdiagnosed!

new member diagnosed with ibc in jan 2009. Have had chemo;bilateral mastectomy, and radiotherapy but cancer still aggressive. No secondaries as yet I believe. Have had several different chemo cycles in 2010 to keep cancer localised but onc running out...

Posted by lastferry on Sat Jan 22, 2011 4:59 pm with 12 comments

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hi i was dx sept 2010 with ibc had 4 nodules removed sept 2011, turned they were cancer cells left from oringinal dx but no further treatment need but now two more have appeared recently so waiting to see onc next week hoping they not the same. good lu...

lollypop59, Tue Jan 10, 2012 7:53 pm
ibc second time - anyone else with experience?

Help - just been diagnosed with second lot of IBC. Was diagnosed last year sept on one breast. Had chemo, then mastectomy, then rads. Now found problem with other breast (inverted nipple) and was promptly diagnosed with a new bc of less aggressive kind...

Posted by ChristineP on Sun Dec 25, 2011 7:41 pm with 3 comments

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hi christinep, i was diagnosed with ibe in sept 2010 had all the standered treament plus herceptin, had a local reccurance in sept2011 four nodules removed they said it was some cells left from oringinal dx no further treatment needed, but now just fou...

lollypop59, Mon Jan 09, 2012 1:51 pm
Need some support and positivety

Hi i am 34 and got diagonsed with breast cancer, three weeks ago. I went into hospital today for a mastectomy, was put to sleep, but when the surgeon went to operate he had found that the tumour had grown a lot in two weeks and my breast was incredibl...

Posted by wallace80 on Tue Nov 01, 2011 12:33 am with 15 comments

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Hi Wallace, I was diagnosed with IBC in May last year and I was 35yrs old. I have had 6 cycles of chemo FEC-T (3 FEC and 3 Taxotare), mastectomy and now am having radiotherapy. I am 36 now and have 3 rads left to go. My IBC spread to my lymph nodes...

bam922, Sat Jan 07, 2012 5:20 pm
Sending some positivity

Hi All Havn't been here for far toooooo long tut tut naughty naughty!!! But I'm here now .. better late than never thats what I say :)!! Just wanted to send some positivity and wish you all well!! How are you all?? It doesn't seem two minutes since I ...

Posted by phoneutria on Tue Oct 04, 2011 10:05 pm with 6 comments

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Hi Haxted and Pinkhair, good to hear how you're doing. I didn't know the bones could heal, Haxted, that must have given you a boost. I hope you manage to get away on holiday. For me it can make such a difference to how I cope with winter if I get a lit...

JanB, Wed Nov 02, 2011 4:03 pm
Awaiting results

I have just been to the docs on Tuesday and he says he thinks I may have IBC. He did a biopsy and I have to go back on 11th October to get my results. I lost my husband to cancer of the osophogus in Jan 2010, I think waiting for the results is the wo...

Posted by weme on Sat Oct 01, 2011 12:17 pm with 11 comments

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Hi Weme I'm so sorry you've had that bad news, as everyone says, the waiting is the one of the worst parts, and once you have a clear plan of action you will feel better. And a brandy always helps I think. Best wishes x

impatiens, Tue Oct 11, 2011 11:38 pm
Clinical trial of new drug at Wolves Hospital

I have been to see Dr today for my treatment plan and she asked me to join a clinical trial of a new drug they are testing to improve the chances of chemo working on IBC. Is anyone taking part in this trial at the moment or could anyone give me info on...

Posted by Mary Most on Mon Sep 26, 2011 7:17 pm with 1 comments

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hi mary most just read you post, i have not heard of this new drug, but what i do know is i was diagnosed with ibc last september ihad chemo first which shrunk the tumor completly, then had masceptomy, and immediate consruction. sta...

lollypop59, Sun Oct 02, 2011 1:29 pm
possible ibc

Posted on behalf of new user Mary: I was diagnosed on Wednesday (21st Sept.) with IBC, my lymph gland was also tested but no lumps were found, there was however a thickness of the lining of the lymph gland, has anyone else had this problem and what e...

Posted by Louise BCC on Sun Sep 25, 2011 12:50 pm with 5 comments

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Hi Mary, There were no suitable trials running when I had my treatment. I just missed one for reducing the treatment time for Herceptin. I was already a few months into my treatment when it was announced but I have been through the decision making wit...

JanB, Wed Sep 28, 2011 9:56 am
possible ibc

Hi all, would really appreciate some advice from those of you that have been through this. Saw GP initially with an orange peel like rash on breast who referred me straight to a breast consultant. Had ultrasound and mammogram which seemed ok but showed...

Posted by juju on Mon Jul 18, 2011 12:53 pm with 20 comments

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Mary says on 25 Sep 2011 11:37 I was diagnosed on Wednesday (21st Sept.) with IBC, my lymph gland was also tested but no lumps were found, there was however a thickness of the lining of the lymph gland, has anyone else had this problem and what exac...

Lucy BCC, Sun Sep 25, 2011 3:53 pm
Its the LITTLE things......

Thought this might raise a laugh or two ... Had my hip replacement and was doing really really well. Was looking forwards to being "signed of" last Friday with the 6 weeks post op surgeon appointment so I could get back in car and be FREEEEEEeeee! Of...

Posted by Haxted on Thu Jul 07, 2011 8:59 am with 12 comments

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I cant really say I'm in pain - just crooked and gait like quasimodo where the hip replacement rehab was interrupted by toe break and I was then non-weightbearing and on crutuches for total 14 weeks. My pelvis didn't know which way it was supposed to b...

Haxted, Mon Sep 19, 2011 9:38 am
Moving Forward with hope

Hi I was DX with IBC exactly three years ago and for the benefit of all the new IBC ladies who have posted here recently I wanted to point out that I had all the standard treatment, chemo, MX, rads herceptin and now hormone treatment and I am still he...

Posted by AndieT on Thu Aug 18, 2011 7:01 pm with 5 comments

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Hi girls Your words have supported me through diagnosis and treatment since august 2009. Still have a few hurdles to jump myself with complications before i can consider recon. But i know i will get there one day. Really pleased for you peacock. Xx ...

Dee Dee, Mon Sep 19, 2011 1:54 am
need 2 ask ladies about mx?x

good morn every1, i got diag in april wit ibc on chemo no5 2day, had herceptin yest all ok lump shrinki +redness nearly gone. so am a bit shocked tht onc said thy may not gv me surgery 2 remove lump+may just hav 5 weeks of radiotherepy!!!! wil hav a bo...

Posted by albie on Thu Aug 04, 2011 7:37 am with 14 comments

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hello every1 been told i gota hv 2 more sess of chemo so will b 8 all2gthr,then havin surgery thank goodness!! then 5weeks of rads, i feel like a hedgehog now spikey hair+wantin 2 hibernate as sooo tired, jean hope surgery went ok , thanx 4 all replies xx

albie, Mon Sep 12, 2011 4:22 pm
Can't get a doctor to consider IBC

Hi I'm a RN so I though I could present my problem to the docs professionally. So we have one breast that has enlarged by a cup size,gets rashy, hurts increasingly more every day itches some days it's bright red has confirmed by mammo asymmetrical thic...

Posted by jimmel on Sun Aug 21, 2011 10:39 am with 6 comments

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Hi Jimmel, One of the reasons IBC is often mis-diagnosed is that it tends not to show up in a mammogram. The radiographer who did my mammo told me in her opinion I had mastitis. Thankfully I ignored her. I saw her again earlier this month for a routin...

JanB, Sat Aug 27, 2011 2:27 pm
INFLAMMATORY BREAST CANCER

Hiya, I am 35 and have just been diagnosed with Inflammatory breast cancer on 2nd June. I am not sure about anything else yet as I have another appointment on Monday to see the chemo dr and then a CT scan on Thursday. All this happened within a six w...

Posted by bam922 on Sun Jun 05, 2011 8:38 am with 46 comments

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Hi Cat lady, So sorry you've had such a rough time. Unfortunately IBC is often mis diagnosed as mastitis and, as you've experienced, it's one of the reasons it's often difficult to treat. Mine was diagnosed as mastitis by my GP but I'm lucky enough to...

JanB, Sat Aug 06, 2011 1:22 pm

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