Hi Muffatt,
Do give the helpline a call and talk to one of the staff here who will support you through this. Lines open this morning at 9am until 5pm (Mon to Fri) 0808 800 6000, calls are free. You are not alone in this.
Kind regards,
Jo, Facilitator
Muffatt - i’m so sorry to hear about all the problems you are having…
Could you ring the helpline on here this morning and describe to them what is happening…? I only know how my breast looked before i was diagnosed - but they should know if it sounds like something else… Although i think if it is getting worse they will suggest that you have to go back and see the specialist…
Thanks for the replies.
Unfortunately I’ve left it too late to speak to anyone today and I wont have time to talk to anyone tomorrow either as I am working so it will have to wait until Thursday now :o(
My boob is really uncomfortable now and it feels like I’ve got the same burning on my back as well as a heavy pulling down sensation.
The worst thing about all of this is being at home alone with no one to confide in, except you lovely people on here of course.
I’m going to have a very large glass of wine and hope that takes my mind off things for the evening.
Muffatt x
Muffatt {{{hugs}}} hope that when you call they are able to see you again quickly - really tell them you need to be seen again urgently so they don’t try and give you an appointment in a couple of weeks…
I think i will join you in that glass of wine 
Hi Muffat
So sorry to hear that your breast is not improving, and to add to your worries all your personal problems.
Did they do any biopsies?
My IBC was not detected by mammo or ultrasound and I’d never heard of it before my dx. My breast was burning though, not red but it was very painful and swollen.
I don’t want to worry you, but I really think you need further tests, its easy to say its hormonal - they said that to me too.
Please get onto your hospital asap, I don’t know what else to say except that I hope you find someone close to talk to about your problems, its a lot to deal with by yourself.
Hi to Mabel and Rhapsody too
take care xx
Hi Peacock
No they didnt do any biopsies, all I had was the breast exam where he said straight away its not cancer and then the U/S and mammo which came back clear.
The thing is I’ve read other posts on this forum and its very alarming how many people telling their story say that nothing showed up on the U/S and mammo and it wasnt until they had a biopsy that C cells were discovered?
I’m taking HRT now as well as the Oil of Evening Primrose caps so surely the symptoms should be decreasing now not getting worse?
As I said in a previous post Mr Taylor is a highly respected breast specialist in Buckinghamshire, he’s pioneered this that and the other and I dont know if I can question his diagnosis?
I dont know if my insurance will allow me to go back early and ask for more tests I need to ask them as I cant afford for them to send me a bill as one xray is £665 so god knows how much all the other bits cost?
I’m working today (I’m self employed so work is precious and scarce at the moment!) so I wont find the time to ring the BCC helpline, insurance co etc.
I’m so glad I’ve found you ladies though, if I didnt have this forum to post on I’d be going out of my mind by now so thank you, all of you for keeping me going through this awful time.
Muffatt x
I’ve rung the BCC helpline and spoke with a really nice lady, I went through the history and she asked me lots of questions to try and eliminate things.
The lump under my arm has changed size, texture and is really tender now and the burning in my breast is unbearable and its spreading across my breast and nipple :o(
She said I need to go back and see my cons urgently so I rang the insurance company and the hospital and I’ve got a new appointment for next Wednesday morning. Unfortunately I’ve got work booked in and I cant afford to cancel jobs as work is so scarce at the moment plus my mum is going into hospital for knee suergery next Tuesday so I’m just going to have to be brave for the next few days and try and not worry.
I’m not going to tell my husband as I dont want to stress him out anymore than he already is plus he’s away on a managers course next week anyway.
Anyway thanks to everyone who’s offered advice so far I really do appreicate the support.
Muffatt x
Muffatt - so glad to hear that you have got another appointment… I hope that they manage to find out what is happening this time BC or otherwise… {{{hugs}}}
Theresa x
HI Muffatt,
I did respond to your earlier post but it seems to have disappeared! I have a habit of doing that on this site, so frustrating.
Anyhow things have moved on for you since then…
I’m pleased you have spoken to your BCN, it’s what I would have done myself.
Obviously there is a problem, not necessarily IBC, with your breast and you need to be seen asap.
When I was dx in 2005 my breast was swollen, but not massively. I had sharp stabbing pains and my breast was quite pink. Eventually the nipple began to invert. I had tried a weeks course of anti biotics which had no effect. The surgeons knew immeditely that it was cancer but I still had all the tests to confirm. I remember the radiologist who did my U/S saying he could find no cause, though he could see my breast was pink and swollen, so he explained he needed to do some core biopsies.
You have so much going on at the moment, I expect you are putting your own worries on the back burner. I understand that, there’s only so much we can deal with at any one time.
I hope all goes well on Wednesday, I shall be thinking of you and please keep us posted,
Love
Jackie xxx
Thanks again for the replies.
I’ve found something else this morning, the skin on my left breast looks smooth but I’ve noticed today that the skin on my righ breast looks a little different, the only way I can think to describe this is like tissue paper?
Anyone else experienced this?
I’ve really got to stop looking at my breasts, maybe I’m just imagining things now! I really am my own worst enemy! LOL
Muffatt x
Moffatt - i have always described my skin when i was first diagnosed as looking abit “crinkly…”
Muffat
Thanks for keeping us posted about your problems and I for one am pleased that you have got an appointment sooner.
Funnily enough my skin never looked any different with my IBC, I think in my case it was diagnosed purely by the speed with which it spread. After my biopsy the wound (which was cut rather than syringed) never healed again and constantly weeped, eventually leading to an abscess which had to be drained. It was then that I got the diagnosis of IBC. This was 3 months after initial diagnosis.
Anyway, back to you - its quite normal to be worrying and hopefully it will turn out to be just one of those things that us poor women have to suffer thanks to hormones!
You have every right to question a top specialist so don’t feel guilty about that.
Take care and thinking of you
P xx
Sorry can’t help with this one. Mine looked dimpled.
Love
Jackie x
Been back to see the cons this morning, all of 3 minutes!
Got examined again, now he’s saying he cant feel anything in my breast (last time he said he could feel thickening and nodulation).
He felt the lump under my arm, I explained it has got bigger and changed shape and it was quite swollen, needless to say its gone down again but is definitely bigger.
He still says its a cyst and has decided to remove it, unfortunately he cant do it for 3 weeks but I should be having it done on 15th April under a local anaseathic - not looking forward to that as I am a big girls blouse when it comes to needles and stitches and anything squeamish like that!
He’s still saying its nothing sinister and that its hormonal. I’ve been taking the oil of evening primrose and HRT for 3 weeks now, he says it takes that time to kick in but I wont see any improvement yet so by the time I go back in 3 weeks I will have been on it for 6 weeks and we’ll assess everything then.
So yet again I feel like I’m in bloody limbo, I’ve just got to try and ignore all the discomfort and get on with life.
Muffatt x
Muffatt - sorry to hear that you don’t really feel as though you are any further forward… I guess the one good thing is that he is going to be removing “the cyst” and that will show if it is a cyst or anything more sinister…
Love Theresa
Hi Theresa
I’m glad he’s removing the lump but its the burning itchy pain in my boob thats causing me the most problem.
Its jut the thought of another 3 weeks waiting and not knowing anything.
I’m lucky in that I am being seen privately as I do really sympathise with the ladies on here who are at the mercy of the NHS waiting times.
It’s just with my marital and work problems, not getting much sleep because its uncomfortable to sleep on that side (the side I always sleep on) and just feeling generally grotty at the moment its getting a bit stressful now.
But having read other posts on here I have to count my blessings, things could be a lot worse.
Muffatt x
Hi Muffat
The good thing is that they are going to remove the cyst - they may just drain it with a needle. I too am very sqeamish, but have had a cyst removed and it was quite painless.
They always send away breast tissue or fluid for assessment even if they dont think it is anything ‘sinister’, so you will eventually get peace of mind.
In the grand scheme of things, and i am sure this is not going to help you not to worry - a delay of a couple of weeks is not likely to make any difference to prognosis if it were cancer (my bc nurse told me this when I was diagnosed).
Just try to think positively and do your normal daily things… I know it is hard. Treat yourself to something nice or do something that makes you smile…
Lisa X
Muffat - i think you should be having your needle biopsy today… hope all has gone well…
Theresa x
Hi Theresa, ladies :o)
Haven’t been on for a few weeks - was trying not to think about things!
Had my lump removed yesterday, no problem at all, my cons is sooo lovely and sweet! It was all done in 15 minutes, 6 little stitches, didnt feel a thing although they had to cauterise (sp?) the wound as it was bleeding quite a lot and smell was disgusting! LOL Got a big dressing on it now and I’m a little bit sore but nothing major!
Lump was sent off for analysis and as I havent heard anything today I will assume it was ok?
Got to go back to see Mr T next Wednesday though as my breast has not improved one little bit! It’s been 6 weeks since I initially saw him and 4 weeks since I went back when the lump got bigger. Been on HRT and oil of evening primrose 6 weeks now and I’ve still got really intense burning itchy pain in my right breast, still getting this hot sensation like someone pouring a warm liquid across my breast so I am beginning to doubt that this is hormonal as he originally diagnosed.
He seemed quite surprised when i told him yesterday that there was no improvement so next week after they’ve removed the stitches he’ll examine me again and we’ll take it from there.
I am not worrying it is IBC because I dont have the redness, inverted nipple or any sort of discharge BUT I know something isnt right and I think more tests need doing now.
So its a case of another week of wait and see.
Muffatt x
Muffatt - hope they are finally able to let you know what is happening next week - and that the wound doesn’t hurt you too much…
Theresa x