Hi all,
I was diagnosed with IDC (grade 1) mid November. I breathed a sigh of relief and told the docs I was surprised as my large tumour (10cm) had come out of nowhere. They told me I must have had it longer than I thought. I told them it hurt and they told me it was probably just from the biopsy as “cancer doesn’t hurt”. I told them I thought it was growing and they told me it was probably just tender from being prodded and poked so much. Then I had my sentinel node biopsy and when I woke up the surgeon told me she was worried as the breast was pink and she could see the tumour was growing. No mention of IBC but they rushed the results through and found macrometastases in the lymph node. They then rushed me into chemo which I started just before Xmas. I was meant to be having MX on Dec 28th. Still no mention of IBC - they told me they wanted to be on the safe side as my tumour wasn’t acting like a grade 1.
Anyway, I’ve been cc’d in a letter from the hospital to my GP updating them on the change to my treatment plan and there in black and white it says “suspected inflammatory breast cancer”. In addition to IDC and in-situ DC.
So now I’m really worried. It was nearly 2 months from when I went to the docs re my lump to when the chemo started. My CT scan on Dec 2nd only showed the breast and lymph node area affected but I’m worried as to what has happened since then and not sure what does/doesn’t show on the scan.
I’m having an MRI on Tuesday and round 2 of chemo next Thurs.
The pinkness of the skin has noticibly calmed since my first chemo and the boob is much less angry, for want of a better word.
Is IBC curable or is it just treatable? I’m so worried now. I have a 2 year old daughter, I’m 36 years old and besides myself.
Thanks for any help or advice you can offer xxx
Hi Wtp2016,
Thank you for sharing your story. I am sure some of our users will be along to share their experiences with IBC and show their support soon.
In the meantime you can always use our Ask the Nurse service or call our helpline on 0808 800 6000, who will be able to talk you through any questions you have and offer a friendly ear. The opening hours are below:
Monday-Friday, 9am-5pm
Late opening Wednesday, 9am-7pm
Saturday, 9am-1pm
Best wishes,
Bonita
Hi Wtp,
Sorry to hear you are going through this, I don’t have an IBC diagnosis, but as it’s one of the rarer ones, there is plenty of support here for you with others going through investigations & treatment at a similar stage to you, even if not your diagnosis.
Do visit the 'newly diagnosed, & ‘going through treatment’ threads, there is also a thread for ‘younger women & families’
hugs
ann x
Thanks Ann and Bonita - much appreciated! I’ve asked to see my oncologist tomorrow when I go for my second round of chemo. I’m getting worried again as the symptoms had calmed down but in the past few days seem to be flaring up again. Never though I’d be looking forward to chemo so much!!
Thanks again and I hope all is going well with you xxxx
Hi Kess,
Thanks so much for your reply! I spoke to my oncologist and he told me that he was not convinced I have IBC but wouldn’t truely commit either way. I was relieved then received another letter that I was cc’d on and under the subheadings outlining the details of my cancer and treatment so far it said “query inflammatory breast cancer?” So I’m still confused!
My lump felt like it was getting smaller in response to the chemo (3 rounds of EC so far) but then I had an ultra sound and the sonographer told me it was still very wide - not really a lump but stretching out with finger-like parts. Does that sound more like IBC? I’m really confused but will question them fully at my next chemo session as the onc should have the ultrasound report by then.
Thanks so much for the reassurance if I do end up with IBC diagnosis. Dr Google has not been my friend recently - I try to stay away but, well, you know what it’s like.
Really great to hear that you’re doing well!! Sometimes it feels like this journey is forever.
Thanks again for your help and advice, it really has helped xxxx
Hi wtp , was really interested by your post .i have all the symptoms of ibc right down to bruise discolouration , very large mass my boob started going pinky after my mammo and us .im convinced its ibc but surgeon and onc say path results have come back grade 3 tn idc .Worries me that it might be ibc and im not on right treatment .have you had any more infomation on yours x
Hi Maria,
I hope you are well - have you had any further news? I haven’t yet but I’m having my fourth round of EC tomorrow so will see my onc and ask him for more detail. He would have had my ultrasound report so might be able to shed some light although I’m finding it so hard to get concrete answers. I keep getting told I need to wait until after surgery an full biopsy of the whole mass.
Are you having chemo pre surgery too?
Sending love - I’ll let you know how tomorrow goes once I’m out of the chemo fog xx
Hi wtp , im also having ec chemo every 2 weeks pre op due to size of tumour and lymph involvement, was meant to have 2nd one yesturday , but infection has put it back a week.Its funny they tell you once its hopefully all treated and gone .My onc and surgeon have told me no different its just my feelings regarding the symptoms lol or maybe i google too much .have you noticed any difference after your chemos ? I have found colouring has eased and feel like my under arm is not so lumpy xx
Also wtp did they regrade you ? Having reread your first post im suprised by your grade 1 diagnose. Your lump is pretty much same size as mine with lymph involvement and im grade 3 but maybe thats cause its triple negative , its all confusing. Also was your boob pink before mammogram as even though i had bruise like colouration and dimples over lump prior to diagnose , the pinkness only come up after biopsy and mammo .onc asked if it had been there prior to that and when i said it hadn’t she didn’t seem overly concerned x
Hi kess , most tnbc is grade 3 down to cell activity , i dont know what my stage is but at a guess due to lymph involvement its likely to be 3b/c xx
Hi Kess and Maria,
Sorry for such a late reply. I’m now I’ve halfway through my chemo. 4x EC done and my first of 12 weekly tax. My onc was away for my last chemo so I’m hoping to see him tomorrow for some feedback and info. They seem reluctant to commit to anything before seeing what the lump dissection post surgery tells them.
I thought my chemo was doing great things as my lump has decreased substantially - I can’t find it very easily - I feel lumps and bumps in there but not much different to the other side. However, I had a recent ultrasound and was hoping to hear the sonographer being so positive but he told me the lump is still really wide, just slimmer! He told me there are “fingers” stretching out of it and would still be looking at a full mastectomy.
It sounds like it’s not formed in a typical lump shape but in the layers that sound more typical of IBC but this is just me speculating!
Re colouring, the skin was red and dimpled. It had that orange peel effect underneath and the nipple had inverted. It also felt hot. However, by EC round 3, the redness disappeared and now it pretty much looks like how it did before the cancer.
Maria - how’s your chemo going? Do you have many sessions left? The nurse told me that they think my lump might have been made up of different grade cells in the end. The biopsy only showed grade 1 but due to the size of the lump, she told me that the other side of edge could’ve had grade 3. She said that it wasn’t acting like a grade 1 tumour due to the skin involvement, that it was growing quickly and because it has already spread to the lymph nodes ?
I hope all is going well for you and the SEs aren’t too bad xxx
Hi wtp, mine sounds exactly the same as yours plus lymphs , no mention of ibc though.chemo not going well should of been on my 4th ec yesturday but only had two .infection on first one then abcess on second just had 2 teeth out .so hoping chemo will restart week after next .xx
Thank you kess , done nothing but worry these past few , every little ache and pain has me paniked .struggling to get my head round chemo starting again xx
Hi Maria and Kess,
Hope you are well! I saw my onc last week and he said my lump has responded really well - it was between 10-11cm and he said he was having trouble finding it. He said we’ll have to wait for MRI re what it means for surgery. The whole way along, they’ve all told me that a radical mastectomy would be the safest option. Apparently it would have been the only option if I was nhs (we’ve got private cover through OH work). Now they are saying a lumpectomy might be on the cards…
So, I was thinking this can’t be IBC as surely they wouldn’t suggest that. Then I saw my surgeon last night and he and the BCN referee to it as “an inflammatory breast cancer” about 5 times in the meeting… I’m so confused! I asked if that was different from IBC and they said no and something about IBC being a very subjective thing.
I’m going to bring it up with my onc again on Thurs. I guess the main thing is that it is resoonding and that all the pinkness in the skin has gone.
Just worried re the surgery options but I guess I’ll need to wait and see what the MRI at the end of chemo shows…
Good luck with your 4th EC Maria - is it your final one before T? I’m on weekly T and it is soooooo much easier than EC! 9 to go…
Xxx
Hi wtp , great news on the shrinkadge .i saw my onc last week was very disgruntled by my appointment , was originally told i would get half way scan, now told it wont be happening , she has gone on maternity leave and im being moved to a different onc though going by her tape measure lump has gone from 8x 12 to 8x 6 .only just had 3rd ec due to 4 week delay so one more ec then 2 wkly paci .dreading it if ec been anything to go by .my redness seems to come and go so think it may be more to do with whats occuring in boob .though all the different terms do confuse me .Best to ask your onc regarding ibc which is diff to invasive bc i get mixed up with all the abbreviations .hopefully if there is surgery options open to you they will discuss the best ones for you and let you make a choice .due to my lymph involvement think i personally will opt for mx and reconstruction. Strange as it seems it is something ive discussed with my 12 year old , bless him .his veiws on how he feels are so important to me xx good luck with next paci
Hi Maria, how’s it going?
Just back from chemo - 75% through now yay!!
I saw my onc and asked him again and he now says that the clinical diagnosis is inflammatory breast cancer… however, he also said that at this point we couldn’t have had a better response to the treatment so I kind of inferred that the terminology wasn’t as important as the outcome… of course, had there been no response I would be feeling a lot more anxious!!
He said that in the past it would’ve meant MXfor sure but these days they have seen recoveries with less surgery and that they don’t want to “over operate” unnecessarily. However, it’s all riding on my final MRI scan In about 4 weeks. He can no longer feel any lump which is mad considering it was 10-11cm to start with!
I’m happy but won’t relax until final scan. The surgeon also said that if he felt in any way thatMX was safer than lumpectomy, he would push me towards it. I’m lucky enough to have private insurance so not sure if that makes a difference. I’m pretty sure at one point they said NHS would only do MX no recon if IBC…but have had so much info by now it’s all a bit confused in my head!
I totally trust my onc - he leads a BC research facility in a London hospital and so far seems right about my treatment so I think I’ll just do whatever he recommends closer to the time. The surgeon also told me that it is the chemo which will save my life rather than the surgery. His words! All so confusing, isn’t it.
I think you’re totally right talking through it all with your son. How’s he coping? It’s really tough with kids. My daughter is only 3 so she doesn’t really understand but I still tell her all about my treatment the best I can.
BTW, I’m on weekly paciltaxel rather than 3 weekly docetaxel/taxetare and it is soooooo much better than EC!! Honestly, on the day I feel sleepy from the piriton but other than that, no sickness, no constipation, no fatigue. I’ve even started running again 4 times/wk and I am not a sporty person! I gained loads of weight on EC but now I’m more active on T and not nauseous my weight has stabilised - even lost a couple of kg! Your dose might be different to mine but compared with EC this is a walk in the park! 
I’m halfway through T now. Bloods are suffering a bit though so need to watch out for Ill people but at least the time of year is better now for it. Good luck!!
Sending lots of love xx
Hi wtp , loving how postive it all sounds .i start fortnightly paxi on Wednesday ×4 then surgey .so hoping i dont get nausea as had it all through ec .bit concerned regarding bone pain ss i already suffer with the filgristrim .cant even walk tonight and loaded with hotwater bottles .gping to find out if i can use my tens machine .maria
Thanks Kess - I will certainly ask them - hoping to see onc again next week so will make sure I write those questions down as I always forget when I see him as usually get into a bit of a flap… thanks again, really, really helpful!
Maria - just a quicky to say I have just had my 8th weekly paciltaxel and absolutely zero nausea to report!! Sooooo much better than EC! In fact, I feel a bit hungover a couple of days after it (foggy head) but all else fine - no neuropaty, no ulcers, no aches. Mine is weekly though so prob a lower dose but just wanted to reassure you. Hope your first one went well.
Happy weekend everyone xxx
Hi , just had 2nd paci , no nausea thank god , first 2 days good but very achy and stiff now .got a u/s next week first since dx in jan …nice to see your getting to see your onc often .saw new oncs registar on wed first one ive seen in 6 weeks though the one 6 weeks ago was bloody pointless , i was last appointment before she went on maternity leave , no notes nothing .peeved was an understatement. Was hoping new one was better but not got to see him yet …2 more paci left feels so never ending and had a few depressing what ifs with this chemo lately xx
Hi kess is there any way you can point me to the name of the unit which is leading research into IBC in London ? I’ve just been diagnosed and I’m keen to make sure I go to the right unit with this unusual condition thanks so much