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 body scan then c surgeon 2 discuss, onc said it mayb risky of surgery!! lump is size of an apple. im really down as was so lookin 4ward 2 it getin removed as its a permenant reminder everyday , has any1 else been told this or not had surgery?? please can any1 let me know as i was so positive now 
beckyxx and how is every1 dng?? oh and my chemo nurse said theres no cure huh im so annoyed she told me this so i told my onc and he said it can b cured, like im on a roller-coaster, xx so glad i found this site xx
Hi Albie, I would like to say good morning to you and welcome you to the site, I cannot offer any words as my diagnosis is different to yours, but keep looking on this site and someone will be along soon to offer you advice and good advice you will get from the lovely and knowledgable ladies on here. hugs to you junieliz
Hi albie - I have had 4 chemos and my lump is 10cm lobular , invasive. . My oncologist does not think it has shrunk , but i had a chat with my surgeon who thinks the chemo is doing hidden work as it is not as dense and much softer . He has marked me in for surgery on 11th oct . The only advice i can give you is that they act in your best interest , get on the phone to your bcc nurse and get it explained to you , ask her to read your notes and get the reasoning behind the decision , dont sit and stress as you will go nuts .
that nurse was out of order saying that to you !!! makes me so angry , we do not need that cr*p
Take care
Lorna x
Ditto - it’s difficult as we’re all different with different diagnoses.
I’m also having chemo first to shrink big lump, but then having a mastectomy. I also couldn’t imagine not having it removed so I would definitely chase up and find out why. Do you have some sort of medical condition that makes surgery risky for you?
Sorry we can’t help. I would call your breast care nurse or one of the breast care nurses on the BCC helpline to see their experiences of this.
Good luck.
x
mornin all thanx 4 advice. its because its inflammatory cancer thy say its a risk, suppose il hav 2 wait for mri+ct scans +wat surgeon says. oh wel back 2 the self-healing and talkin 2 the lump!! the madness has set in… hv a good w.end ladies xxxbecky boob xxx
Hi I had chemo first to reduce my lump I’m unsure why you were told that as from my own exp and what I understand they don’t do surgery if it as spread to other organs and that is then classed as stage 4 and not curable but maybe there must be other reasons for not doing surgery ie bad health to risky you nd to call bcn tell her what you were told it’s awful these nurses ain’t a clue what sum are saying tc let us know how u get on Laura
Albie, I have finished chemo now and am waiting for appointment to see surgeon, At first I was told the plan was chemo/mx/rads, then I was told I was stage 4,secondaries in the lungs and my BCN told me there would be no surgery as there was little point as the cancer had already spread, when I saw my Onc for the first time she said absolutley I would have surgery as long as the chemo did its job. It has been found that removing the primary increases the survival rate. I assume you are not stage 4 so I can see no reason why they won’t operate,unless your skin is very affected by the IBC in which case they may delay until such times it improves.I think I am right in thinking when dealing with IBC it is always a full mastectomy performed as the whole breast is affected.
I do hope you get some answers from your team and things move on for you.
Jean
Hi Albie,
You definitely need to speak to your Consultant and BCN to get answers from the people who are making decisions about your treatment. There may be good reasons why you are not being offered surgery but they should discuss them with you. The chemo nurses probably mean well but are not qualified to be commenting on your treatment. I learned very early on not to listen to unqualified people offering comment. The radiographer who did my mammogram told me in her opinion I had mastitis. Luck for me I ignored her.
Along with some of the other IBC girls I am living proof that it can be cured just the same as any other breast cancer and your medical team should be aiming towards this. The first thing my oncologist said to me was that they were aiming to eradicate the cancer and so far we have. I passed my 2 year anniversary in March with no evidence of disease since my mastectomy in Sept 09. I had a 12cm tumour which reduced to 1.5cm through chemo and herceptin but still a small tumour did remain until it was removed by surgery.
It is certainly unusual in the UK not to have a mastectomy with IBC, however, there is some debate in the USA about whether mastectomy is necessary or desirable. Some believe surgery increases the risk of spread. Based only on my own experience I would say throw everything you can at the b****rs now. You can always ask for a 2nd opinion if you are unsure your current team are doing the right thing.
Good luck with the rest of your treatment. I hope the scans are clear. Jan xxx
Hi Albie,
I would just like to echo everything that has already been said, take notice of what your onc says, he knows better than anyone why the treatment you have planned has been planned the way it has.
However ask questions, I always write a list because otherwise I forget what I wanted to ask.
Everyone is different so it is no good thinking we all get offered the same treatment plan.
Good Luck and hope you get the answers you need, love LIZ XXX
I have IBC which has spread and I was given a mastectomy nevertheless. I was given the choice whether to have it or not though because it’s radical surgery both physically and emotionally and the removal of my breast was not going to stop the spread. I understand that sometimes, if the skin is highly involved, the healing of the wound following surgery can be more of an issue than treating the tumour chemically (ulceration)and IBC often has high skin involvement (hence the inflamed look. Don’t be afraid to ask questions of your onc. It’s your body, your life and you need to be “on board” and own any decsions being made. Being uninformed will simple allow fear to run amok. Good luck!
morn ladies just wana say thanx 4 all advise,im stage 3 it hasnst spread so dnt knw y he said it, hav got chemo no6 in 2 weeks and seein onc +surgeon so il hav 2 c wat they both wana do! as knw onc wants me 2 hav 5 weeks of r/t after chemo… il let u all know xx 
Hi albie,
Am new to this forum and saw your message. I am 36 with two young children and was diagnosed with ibc at start of June with a 9x8cm tumour. Aft two FEC it has shrung to 1.5 cm but The recommendation is radical mastectomy. Am seeing my surgeon next week. Am also on for having herceptin from chemotherapy num 5. Number 4 tomorrow so up late from taking steroids! I would maybe consider getting a second opinion re your surgery. I do know one lady thru my mum who had ibc five hrs ago. She also had a lumpectomy and is doing fine but maybe the majority opinion has changed?? Good luck with everything and stay positive x x x x
Not sure if this helps or not - I was diagnosed in July with IBC and my consultant said he was not having a marker inserted as he intends to do the mx irrespective of whether the lump shrinks completely or not. Before I saw the consultant The BCN told me that I would have a marker and if the lump shrunk completely I may not need a mx = so discuss with your consultant and ignore what anyone else tells you. I have just had my second chemo and lump has definitely shrunk
Hi all, I am IBC too. I had the full works: 6 months chemo, mastectomy and node removal (with reconstruction) and then 5 weeks radiotherapy. I had a marker put in shortly after diagnosis and before chemo - just so that when they did the mastectomy they would be able to find the main area where the cancer was ( as sometimes it completely vanishes). At least that’s what I was told :-). I finished treatment in June and now recovering.
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