66.5K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

IBC Survival

76 REPLIES 76
Mai7
Community Champion

Re: IBC Survival

Hi Colby, I was diagnosed with stage 2 grade 2 IBC, 5cm locally advanced including local lymph nodes back in March. I have just had a consultation with the breast surgeon today after 7/8 chemo treatments and they are happy that I've responded well to the chemo.  My surgery is scheduled for the end of Octiber.   My journey still has a way to go but I'm feeling much more hopeful than I was 6 months ago.  I hope you are coping well with the chemo. I'm on the May 2017 starters thread so please feel free to pop on there to ask any questions. We are a friendly bunch and all either finished or almost finished our chemo so lots of recent experience.  Have you joined the August 17 starters to chat with others going through treatment at the same time?  Best wishes. Xx

Strudel
Member

Re: IBC Survival

Hi, I had IDC not IBC but given how rare it is I wanted to post this. When I went back to work following treatment I was chatting to a colleague who I knew had had BC. During that chat I found out it had been IBC, stage and grade 3 , triple positive 9/15 nodes and a 5 cm tumour. She is 8 years out from diagnosis, 7 from the end of treatment and is fine. 

 

Kess
Member

Re: IBC Survival

no I never tried it. I hope you cope with chemo ok. Its hard work, but it can have amazing results.
Colby
Member

Re: IBC Survival

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 .
Kess
Member

Re: IBC Survival

hopefully you have continued to see improvement. It sounds like you are feeling generally anxious right now, which isnt surprising given all the worries you have had plus a baby.Hopefully your GP has been able to reassure you.
Asienka88
Member

Re: IBC Survival

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 😉
Kess
Member

Re: IBC Survival

hi - hopefully things have settled down for you now?  any breast changes are worrying, but it sounds like you have seen a good response to the antibiotics which is positive.  

Jill1998
Community Champion

Re: IBC Survival

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.
Asienka88
Member

Re: IBC Survival

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.. 😞
Asienka88
Member

Re: IBC Survival

Hi,

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.. 😞

Joanna
loushea
Member

Re: IBC Survival

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. 

 

God bless. xxx

 

Kess
Member

Re: IBC Survival

hi - really sorry to hear about your bone mets. The place generally accepted as best for IBC in the UK is the Royal Marsden. if you google "royal marsden inflammatory breast cancer" you will get a link with their contact details. You can ask your team to refer you for an urgent second opinion. Also if you want to join our active facebook support group for those diagnosed with IBC, do send me a private message and I will give you the details.
liz44
Member

Re: IBC Survival

Hi, Glad to  hear about the ladies free of cancer for many years now ,wish you all decades ahead. From where did you get the treatment , can anyone suggest me any good clinic,I am recently DX ibc with bone mets ,I am not at all satisfied with my current consultants as they took three months to diagnose it

liz44
Member

Re: IBC Survival

Hi, Glad to  hear about the ladies free of cancer for many years now ,wish you all decades ahead. From where did you get the treatment , can anyone suggest me any good clinic,I am recently DX ibc with bone mets ,I am not at all satisfied with my current consultants as they took three months to diagnose it

Kess
Member

Re: IBC

Hi Aud and really sorry to hear your worry. I hope that you have managed to get an answer. Do stop by and let us know how you got on. Anything like you describe should be checked out - it sounds like your weds appt was good timing for you at least.
squeakymouse
Member

Re: IBC

Hi Aud, sorry no-one replied earlier (I don't use this forum very often now), but hope your appointment went OK this week and you are on the way to finding out what your symptoms are xx.

Aud
Member

IBC

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

peacock
Member

Re: IBC Survival

Had an IBC dx in June 2008, had chemo, mx with herceptin then rads.  Had a diep recon in Feb 2011. Unfortunately had a different dx of bc on other side, hormone positive so now on tamoxifen after rads. But , im here 7 years on from IBC and want to give hope to others. Good luck to all.

ChristineP
Member

Re: IBC Survival

Another positive story :
I am approaching five years since diagnosis with IBC !!! Had chemo, mastectomy, radiotherapy, hormone therapy. Small hick-up shortly after finishing treatment (2nd primary, mastectomy and radiotherapy). Good news is : NED ever since 🙂
Hoping this will provide a little bit of hope to other IBC ladies.
Hugs

busyanne
Member

Re: IBC Survival

Fantastic, its good to hear such good news.

 

Anne

hedgewitch1
Member

Re: IBC Survival

Hi Squeakymouse. Your spirit is amazing. I really admire people that can go through hell and still reach back to pull others along. There's no words I can say to thank you that would be enough. I hope I have your strength &  courage. XXX

squeakymouse
Member

Re: IBC Survival

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

Becker
Member

Re: IBC Survival

Hi. I just noticed since February that my left breast felt fuller, heavier, and became noticeably larger than the right. No pain or real discomfort, no discharge, no discreet lump - just the breast tissue felt engorged. I stopped taking hrt and the difference in my breasts became more noticeable. When I could no longer pinch my nipple I became really concerned.
I have had mammography and ultrasound. Three biopsies taken from the breast and one sample from a lymph gland. I have had discomfort this week after the tests, and like you I have had some discomfort in the other breast. I am resigned to the fact that I will probably get bad news tomorrow but after three or four days of terror and dread I am now ready to fight it. Hope your tests go well.
Lucy_BCC
Member

Re: IBC Survival

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

Take care
Lucy BCC

Becker
Member

Re: IBC Survival

Hi. I just noticed since February that my left breast felt fuller, heavier, and became noticeably larger than the right. No pain or real discomfort, no discharge, no discreet lump - just the breast tissue felt engorged. I stopped taking hrt and the difference in my breasts became more noticeable. When I could no longer pinch my nipple I became really concerned.
I have had mammography and ultrasound. Three biopsies taken from the breast and one sample from a lymph gland. I have had discomfort this week after the tests, and like you I have had some discomfort in the other breast. I am resigned to the fact that I will probably get bad news tomorrow but after three or four days of terror and dread I am now ready to fight it. Hope your tests go well.
Taglagoon1
Member

Re: IBC Survival

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
Becker
Member

Re: IBC Survival

Have my appointment at Results Clinic on Thursday, but the consultant seemed almost certain I have IBC. I'm 58 and had never even heard of it before. Feel so much better reading this. Thank you! X
Kess
Member

Re: IBC Survival

Hi ennobenos. Sorry I missed your query earlier, but all the tests and scans you detail are totally normally, especially for IBC. They can tell your grade of cancer from the biopsy, but they can't give you a stage at that point. IBC is always stage 3 or 4 though.

Hopefully you have now completed all your tests and have a plan in place. I am sorry you are having to go through this, especially when you are away from family and friends, but there is some really good treatment out there so hopefully things will go well for you.
fudgeincornwal
Member

Re: IBC Survival

Hi to all recently diagnosed with IBC

 

I was dx in March 2009.   So just over 5 years later I'm enjoying life and full of energy,  am still on treatment, Kadcyla (TDM1) as had spread to liver at the start, remission for 2 years then back on pancreas.  Regular scans meant it was found early and although I have treatment every 3 weeks I have no side effects.   Treatment is improving all the time.

 

Oh and I have a better clevage than I had before due to fantastic left recon and uplift on right!!!!

 

Keep smiling all  xxx

 

 

Janet_BCC
Member

Re: IBC Survival

Dear ennobenos

 

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

 

Take care

 

Very best wishes

 

Janet

BCC Moderator

ennobenos
Member

Re: IBC Survival

Hi all,

 

I have been diagnosed Inflammatory Breast Cancer since 2 days ago. I am 28 yo and a scholarship student from Indonesia, been here since 6 months ago to study master. I don't know how to express my feeling right now actually, but since I found this thread on this forum I feel more 'alive' now. I'm glad to meet all the great woman here, I feel less lonely somehow even though I never met you all but I can feel the spirit :).

 

However, I have some issues to be concerned about, the doctor didn't give me any medications at this moment and I got an appointment to take MRI on 12th of May. I have taken mammogram, ultrasound scan and biopsy 1 week ago. The doctor suggested me to have a CT scan, see the Oncologist and chemotheraphy afterwards. And the doctor couldn't tell me about the stage until all examinations finish. Is it a normal procedure?

 

For me, it's really hard to let my close friends and family in Indonesia know about it, it's really heartbreaking to see them crying, and they can't come to UK. But, I also have great friends here who always support me, I feel so blessed. Now, I'm trying hard to focus on my upcoming final exam in school.

 

Kisses,

Enno

3network3
Member

Re: IBC Survival

So am I, 2 years and three months since DX and still doing well 🙂

Guest user
Not applicable

Re: IBC Survival

That's fantastic news ! Lovely to see ibc ladies doing well. I'm just over 2 years since ibc diagnosis & feeling good.
(((Big hugs))) x
Haxted
Member

Re: IBC Survival

Yup - another one here..... coming up for 5 years since diagnosis of IBC with spread to bones. Many treatment options experienced which were fairly new and a couple that weren't even around then.... Progress is always being made.

ChristineP
Member

Re: IBC Survival

Congratulations! That's excellent news. Thanks for sharing. It makes me happy (ibc lady too)

Anyone else ?
Christine

Janeway2
Member

Re: IBC Survival

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.

Jo_BCC
Member

Re: IBC Survival

Posted for new user Lyndsey - Jo, Facilitator

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.

Jo_BCC
Member

Re: IBC Survival

Posted for new user Lyndsey - Jo, Facilitator

st over 1year post treatment for IBC with lymph node spread. Can anyone point me in the right direction regarding SSRI'S? Currently taking Tamoxifen, but I really need an antidepressant, despite all the wonderful, positive, encouraging comments from fellow IBC peeps. My Oncologist had said the data regarding the efficacy interactions was inconclusive and that very little Pharms affect the potency of Tamoxifen. Tried Fluoxetine with no change to my mood. I was hoping to try Wellbrutin, but am afraid it may affect the efficacy of my Tamoxifen. I was diagnosed 2 years ago.

Ruby1
Member

Re: IBC Survival

Hi Katherine
I'm not an IBC lady but just wanted to say firstly that I'm sorry to hear about your diagnosis and secondly - can you try and push for an earlier appointment with the oncologist? I seem to recall that when I was diagnosed with IDC, I saw the oncologist almost immediately as they wanted me to start treatment asap. Just hearing that you have to wait for 2 weeks prompted me to suggest that you see if your appointment can be brought forward.
Hugs
Ruby

squeakymouse
Member

Re: IBC Survival

One year ago today I was dx with IBC - 80mm x 60mm HER2+ ER- PR- with spread to lymph nodes but no mets. One year ago I did not think I would be here to write this post today but I made it! I had a complete response to chemo (they found no live cancer cells after op, just the remains of dead ones).

Hope these posts here give some hope to people just starting out on this journey

Squeakymouse xx

Juliamt
Member

Re: IBC Survival

Hi Katherine2701, the initial diagnosis is one of the hardest stages to cope with, but cope you will. Then you get on the treadmill of treatment and that quickly sort of becomes routine. I found it helped me to keep working right through, I'm a secretary, it helped normalise things for me, and stopped me brooding. To be honest I didn't feel ill most of the time, I know everyone is different though.
like you my breast seemed to be growing daily BUT when I started treatment I could see it visibly shrinking. I was told by my oncologist that this type of cancer reacts well to chemo.
I won't say keep positive for some reason that never sat well with me, we're all positive we want to survive, does that mean if we aren't perky enough we won't !!!
Will be thinking of you all, two fingers to cancer I say !!!
3network3
Member

Re: IBC Survival

Juliamt, great to read this, thanks for posting!!!!!!!!!!!!!!!!!!! xxx

Katherine2701
Member

Re: IBC Survival

Hi there, I just wanted to make contact. I have been diagnosed with IBC after IDC was diagnosed in my left breast. The IBC is swelling fast and is scary. I do know it has gone into my lymph nodes but don't know if it has metastasised or where yet. I feel absolutely distraught today and am waiting for a meeting with the Oncologist which I have been told will be another two weeks! It is lovely to hear success stories anyway and I am so grateful for this site and the time people like you have taken to add encouragement at the darkest point of my life. Thank you.
Katherine2701
Member

Re: IBC Survival

Thank you, thank you, thank you! Just dx and so pleased to see a positive note re IBC!
Katherine2701
Member

Re: IBC Survival

Love this post! I was diagnosed Friday With IBC. I really am determined to give this disease the biggest battle and hope one day to put on here the same post as yours. Thanks for brightening my day.
Juliamt
Member

Re: IBC Survival

To all you lovely ladies going through the trauma of IBC. I was diagnosed in 2005 with IBC aged 46 which had spread to lymph nodes with possible liver mets. Whilst I know everyone's story is their own, it is important to hear about the good news too. I am currently 8 years clear though continue to take tamoxifen. Please try not to panic it doesn't always mean death at diagnosis and PLEASE don't bother googling, that way lies madness.
Hope this doesn't sound smug just wanted to she'd some positive light.
Guest user
Not applicable

Re: IBC Survival

Hi Lynsey - don't be too daunted by what you read on line it's mainly out of date information. The prognosis has changed hugely over the past two years mainly because various forums and websites are now dedicated to getting the information out there. The main problem and reason for the high mortality rate in the past has been due to the lack of a clear diagnosis until the disease had spread. This thankfully is changing. You're not on your own. I was diagnosed in January 2013 and am about to have my second Chemo tomorrow. I feel good and positive and can already see the difference it's making to me. So chin up. And good luck with your treatment. Pat (Korkys Mum)
Guest user
Not applicable

Re: IBC Survival

Hi Peacock and Everyone, I'm in France too, and after a biopsy a week later I was in front of the Oncologist who told me it was IBC. He said it was in a very early stage and that it hadn't spread into my Lymph nodes, and after two Scans it isn't in my bones or in my liver or lungs, so something to hold on to. He told me not to Google it and that now it is treated exactly like any breast cancer. Gives me a lot of hope to read of survival rates of 10 years and going strong. I did what I suspect everyone does and Googled it and by the time I'd finished I was wondering if I'd get to finish the book I was reading, so googling no more. So glad I found this website. A tough journey we're all on, but fabulous to meet other IBC girls, going into my second FEC100 Chemo session next week. Hair cut very short and feeling like a brillo pad, but don't care. fingers crossed for all of us.
3network3
Member

Re: IBC Survival

Hi lynsey

I wasn't told that it was IBC till a few months after the initial DX. Everything I read about IBC on here sounded just like my breast was looking like at DX and I wondered if it was IBC although not being told, but when I saw my BS after my 5th chemo (one month before the MX) I asked him if it was IBC and he said yes. I have heard from other woman the same, that they were not told right from the start. Don't know why to be honest.

3N3 xx

Guest user
Not applicable

Re: IBC Survival

Hi ladies, I was dx with BC in November and was only informed last week that it was possibly IBC. I have tried not to google (unsuccessfully) lol but found this thread very helpful.

Thanks