Hoping to pick some brains. The inflammation and swelling on breast with lump gets worse every two days. I’m fed up buying bigger bras. The orange peel texture is all over the inflamed breast now. Saw oncologist just before FEC 2 who said lump has stabilized but never commented on worsening skin or fact that there is significant pain in the second lump in my lymph node. She wouldn’t be drawn on it when I asked, just repeated 'stabilising" but it has got worse since then!
I know this is one of the more aggressive cancers and there will be no op till skin improves, but like so many people here, am wondering how long to wait? It looks like chemo not working but how do I know? Onc did suggest doing another scan after FEC 3 (am scheduled for FEC x 4 then Tax x 4). I know some of you have lovely bcn’s to ask, but I drew the short straw with one who knows nothing about inflammatory breast cancer, and hasn’t been able to answer a single question I asked, I just get the standard ‘you need to ask the onc about that’.
Sorry for rambling, I guess my question is simply, is the cancer still spreading or is the chemo working - how did the rest of you do with the inflammation when you started?
Thanks for any insights or shared stories! X
hi blackspotk, i dont have IBC i am TN but am due a different chemo for lumps recurrence and my onc said not to be too concerned if no improvement til 3 rd lot ( easy for them to say|)maybe thats the magic number i dont know so i hope it kicks in soon for you and if not am sure tax will xx
I am an IBC lady.I had 4 x AC and 4 x Tax. My Onc kept telling me that the lump was shrinking/improving when I really couldn’t see or feel any difference. This was nearly 3 years ago and I may be wrong but I don’t remember the angry red skin improving till after several chemos and the orange peel skin was definately there till well into Tax.
I had a second scan after my 3rd chemo and then another one near the end just before surgery.
If your BCN can’t help try the helpline here, they may have more information
Sorry to not be of any more use
Thanks ladies for your replies, Im rubbish at being patient.
Andie, that’s helpful to know you still had the inflamed skin into Tax treatment! And even better to know you are doing so well three years later!
Do you remember having any significant pain? This is really the first time Ive been so down about treatment, and have been googling IBC this afternoon, can’t believe how bad the prognosis is, even on reputable sites!
Still, I will buy another, bigger, bra tomorrow, and maybe call onc by end of the week.
Sorry to hear you’re not getting the support you need. I can only speak from my own experience. My right breast had swollen to twice it’s normal size. After my 2nd FEC the swelling had reduced considerably but I was well into my chemo regime (3xFEC & 3Tax with herceptin) before the skin texture improved. Even then the hard mass (12cm) never seemed to get any smaller. My Onc assured me it wasn’t unusual and what I was feeling was dead tissue rather than active cancer. After my op the pathology report confirmed that the bulk of the mass was dead tissue and only 15mm was still active cancer.
That said, if you are not confident with your medical team you are entitled to a second opinion so don’t be afraid to ask. I agree with Andie about the BCC advice line. They’re very helpful.
Come out of google immediately! You are just frightening yourself.
Not sure I would call what I felt was pain - more extreme discomfort. Mind you I was and still am very good at imaging things.
If you can speak to your onc that might be a good idea. If only to reassure you that they are happy with the way things are going.
Any more questions just ask
Ditto, leave Google well alone. All of that stuff is old hat. I know, it’s a bit like a scab you need to pick but it’s not good for you.
I did have stabbing pains and itching. I also had a pain in the centre of my chest which my surgeon said was the weight of the breast pulling on my muscle.
Thanks Jan and Andie, it is so helpful to speak to others who have been through it!
Hi Blackspot! Here’s another survivor to encourage you! I’m 2 and a bit years down the line but also with secondaries in the bones and lymph nodes yet still considered a good bet by the NHS for the total hip replacement I was fast-tracked for 7 weeks ago!
With the initial chemo (Fec and Tax) I do remember the size of my breast going down during each treatment and then going up again before the next one was due. Which was why I was glad of the mastectomy 'cos although I know some areas/countries don’t do mastectomies for IBC, I really didn’t fancy the idea of carrying it around with me! But that’s me and I wouldn’t want to question that as best practice or not!
Hang on in there! Prognosis for IBC are changing all the time - and some of us here are evidence of that!
A big hello from another IBCer! My treatment finished in December and I’m now on hormone therapy and injections for 5 years.
My chemotherapy hardly made any difference to the size of the lump but it did sort out my skin so that it was ready for surgery. I seem to remember that it took a few cycles of chemo before the skin started to change - the FEC didn’t have much impact but the Tax did.
Hang in there and it will all work out. And, try not to look on the internet too much. I love researching and playing around on the internet and couldn’t stop looking into IBC. It didn’t do me any good and I weaned myself off it. The research is out of date and everyone is different.
Lots of love
hello there blackspot, i got dia in april wit ibc , im due for chemo no4 on thur + the redness has nearly gone stil dimpled, but lump has a stabbin pain think it killin lump its still big but no way as hard as wat it was. my lump is the size of an orange .wen i went on other sites i was soo scared but now i stick to this site +macmillian . good luck oo and also my bcn was crap ddnt know anyth just gv me leaflets, i dnt bother wit her , becky xx
thanks for post. Are you on 8 doses FEC-T too? You made me smile about bcnurse; mine did tell me not to take paracetamol (in case it masks infection), but I know so many others do, I had some last night and got off to sleep better.
I have been agonising over what to do about this increased pain and swelling. Think I will try and see onc this week and try to arrange a scan. Her little callipers couldn’t fit round the main lump! Mine is like an orange too, and i have a ‘mandarin’ in my armpit. A side view of my body is a lumpy fruitbowl, what with the swollen melon too!
I like the idea of the pain being as the lump is dying, might try and visualise that a bit!
Good luck for your chemo on Thursday… Half way there, are you switching to Taxedere ?
Stay in touch, it would be nice to hear how you get on, especially being one month ahead. Have a great week!
helo blackspot or fruit bowl!! im seein my onc tom and am gna talk bout stabbin pain so il let u knw as its seems to hurt on 2nd week of chemo, he said last time its the chemo workin on shrinkin it ,mayb cos im so aware or bein lopsided lil huh! im startin on diff chemo thurs +herceptin on no5 session , i dnt take sickness drugs as thy make me constipated oh wat fun it is, but hey all i do is moan bald fat but hey im alive and do believe it can be treated so just gota get on wit it but its good to chat to others so we not alone il let u knw wat he says lv becky big boob xx
Good luck with the onc appointment and with Thursdays poisons…
I’ve decided to go with your idea of pain equals dead cancer cells! Must be good to be half way there. Will you be having a radical mastectomy too?
I’m not Herceptin pos, but am oestrogen, so will probably get Tamoxifen at radiation time.
Dead impressed you can manange without anti sickness tabs. Ive lost 14lbs sine i started, cause for the first eight days after each FEC I can hardly eat. Mind you, feeling better today and making a big pot of spaghetti. Ol for tonight, love pasta…
Take care. Xx
Meant to say what a very cute baby!!! Xx
i think iv gained 14lb , anyway bud c onc yest and redness has nearly all gone lump is soft n he thinks stabin is kilin it 2 as treatment is respondin, but boy o boy dd i moan+groan as mayneed more chemo depend wen can do full mast+all of lymph nodes gna go,and may hav chemo after op b4 r.t phew they think i lov hosp!!! but should b finished nxt august, dd u c news 2DAY bout cancer wat a downer, but i tryin my best 2b POSITIVE o thnx albie is cute 21 months and full of life, which we wil b!! take care xx becky xx and remember ur not alone xx
p.s had chemo 2day went on tax and got told i may hv worse side effects start herceptin nxt sessin , might have 8 or 9 sessions instead of 6 dependi on surgery, also i hv accupunture at a cancer charity place and its free so look into it , also check out charity as gettin a theatre trip+holiday for free so got someth 2 look 4ward 2, also ask onc for mouthwash as my mouth got few sores xx
Hi all I have just been diagnosed with IBC - have bone scan and appointment with Onc next week but feeling really scared as I have no idea what is going to happen. My consultant seems very good and knowledgable about the condition and advised me I would probably have 28 weeks of chemo one session every 3 weeks which seemed a long time between sessions, he then said I would have a mastectomy and rads and could then think about reconstruction. I think he was trying to give me encouragement that I would get through it, but on reading some of your posts it sounds dreadful. At moment my breast is very enlarged, large hard aread, hot and pink and the area around the nipple is a strange white/yellow appearance but from the posts it appears that this will get a lot worst. Any encouragment or advice would be greatly appreciated.
Marybrim, sorry you have joined us on this , but its a good place for support and advise, you are feeling scared and unsure at the moment but once your treatment begins and you see a response to the chemo you will feel more positive. The treatment for IBC is very good now,please don’t google it you will only scare yourself and most is out of date and inaccurate.I have been given the same treatment plan as you it is the standard way of dealing with IBC, I am coming to the end of my chemo and next is surgery then rads, So far my Onc is very happy with my response, my breast is pretty much back to normal now, stay strong , you will get through this.
Anyway here’s a hug , if I can help in any way just ask
Hi Maybrim, I just wanted to say I am also on chemo every 3 weeks for IBC with same treatment plan after. I have personally noticed that the chemo has had a good response to breast like jean and I have had 5 out of 8 regimes to date. My breast at start had swollen so bad, looked red and angry all the time. I get the stabbing pains where tumour is in breast and armpit and I like to think this is the drugs attacking. I also talk to my tumour everyday asking it to leave which kinda helps me! It is scary when 1st diagnosed but when the treatment starts it gets easier. Trust your body and your oncologist. Be kind to yourself and good luck for next week. Any questions please do ask! Big hugs sam