I’m beginning to see just exactly how lucky I am to have my GP. I was trying to talk her out of it being anything of concern, but she wouldn’t have it, thankfully, and got me seen within 2 weeks. I must get her a thank you card this week.
I think it’s time there was some sort of public health campaign on this, it’s too aggressive to be missed so regularly.
I’m not at the Freeman, everything is still happening at the QE. I wish I knew how well they performed in these things but wouldn’t have a clue where to start. I’ve tried Google but all I’ve managed to find is that they see every urgent patient within the 2 weeks referral guidelines, but that’s positive at least!
Just popped in to say hi and hope you are all doing ok?
I had a really bad day yesterday, was just so very tired and kept falling asleep off an on all day - it reminded me of the days during treatment! Today has been so different, I’ve been like the weather, very spring like.
Me again - sorry, I think I’m obsessed and becoming a complete pain in the behind - just wondering how IBC presented itself on you ladies diagnosed with IBC? Di you have the red, inflammed skin? Did any of you have noticible lumps?
I think I’m clinging onto some vague idea that maybe they were wrong last wednesday and perhaps I don’t have IBC and that’s why they’re now considering mastectomy first. I’m so sorry about this, I’m getting on my own nerves now…
My GP said that if I was a nursing mother, he would have said I had mastitis…but I was not…
Slightly swollen, pink-ish (but not very) & warm. I had thought it pre-menstrual but it did not dissipate after my period. I did have a small lump investigated 12 months previously but it was ultrasonded & dismissed as a cyst & to be ignored…we will never know if it was more sinister or coincidental that said cyst was in the same place as one of the two tumours then found. The lump was not the reason for the visit to the GP.
Hello Haxted & Theresa,
Would either of you like to comment on something my daughter read on the net;IBC is the only BC thats caused by injury or infection, another thing Id like to ask you knowlegable girls,a locum GP told me my BC wouldnt be passed on to my daughters or grandaughters cos Id developed it after the menopause,whats your slant on that?
I certainly didnt fit in the criteria,non drinking,non smoking for a good few years,never had any family members with any cancers,no HRT, took the pill for just 3 months in my 20s,had my kids VERY young and breastfed. All comments gratefully received as they say.
Cheerio,hope this doesnt sound as though Im giving you a piece of homework!! Love to all Mags x
Wendy - please ask away… Believe me none of us think you are asking too many questions…
I was a bit of a weird one… we went on holiday to Majorca and on that fortnight everything seemed fine - because we were on holiday i had to change clothes, in and out of swimming costume etc loads of times a day and nothing seemed unusual i even remember on the last day of the holiday standing in front of the bathroom mirror and commenting to my husband that this year none of us had managed to sunburn ourselves at all… (normally at least one of us would get that “oops forgot to put suncream on that bit…”) so on that day my breasts definatly looked 100% normal…
We flew back to the UK and the next day my Mum died… The funeral was a fortnight later and to be honest during that fortnight i could have grown two heads and wouldn’t have noticed… i travelled down to the midlands for the funeral and during that journey my chest was hurting but i thought i had pulled myself carrying my bag or something… anyway once i got to the hotel i went for a shower (my mum was in a nursing home when she died so no “family house” to stay in…) anyway i got out the shower and caught sight of myself in the mirror and thought “What on earth is that!” my entire breast was pink… it was literally all the breast tissue… and was very hot to the touch… Straight away i knew it was bad… and then had the surreal experience of my mum’s funeral knowing i thought i had ibc… believe me travelling in a hearse behind your mum’s coffin thinking “oh my god i’ve got cancer” was an experience and a half… Nigel had stayed up here with our son so i was by myself…
Anyway i went to the doctor’s as soon as i got back (fitted in as an emergency) and told him i thought i had IBC… which he had never heard of… and he said he thought it was mastitous as well… so gave me anti-biotics… it was made a bit more tricky as i was due my annual mammogram a week later anyway so he talked me into seeing how that went…
Anyway went for the mammogram and mentioned it to the radiographer - to be honest you couldn’t miss it - it looked like a giant strawberry by now with the orange peel skin effect as well… She said that if anything showed up i would hear really qucikly… Heard nothing… went back to my gp’s as i had a followup appointment booked… this time saw a female gp who took one look and said we need to refer this to the hospital… i had literally been in the house 10 mins when the phone rang and it was the breast clinic saying to come to the one stop clinic the next day…
I told the nurse there i thought i had IBC and she took one look and said she needed to get the consultant and they also went to find my mammogram results… which it turned out were sitting in the pile that get sent the “thank you for coming - see you again next year pile…” even though on the notes they had written that there was thickening in the skin and other changes to the year before’s mammogram and i needed to be seen in clinic… But instead of that being actioned it had been put in the “come back next year” pile…
Anyway - went for an ultrasound - he took a core biopsy and fine needle one and could tell then and there from the fna that the cells were cancer and it was ibc…
It’s crazy looking back i should really have put in a complaint about the mammo results not being actioned… i’m sure that a lot of ladies would have thought well my mammo letter was fine… and thought it must be something like dermatitus and not chased it up…
so that’s how i got diagnosed…
Mags - i’ve not heard that about ibc… i know that in tunisia 40% of breast cancer is ibc… and i don’t think that is because they have a weird habit of injuring themselves…
I know there are an awful lot of ladies on here that like you “have done everything right…” sadly it just seems to happen to some people…
Because of my bad family history i went for genetic testing last summer and the person there said - some cases of cancer just happen out the blue… and some are due to a gene defect…
But the impression i got that most is random - i guess it is like identical twins where one gets a form of cancer - yet the other one doesn’t… so it might well be that daughters and grand daughters will be okay…
Haxted, that sounds very similar to my presentation, so I guess that straw I was clutching at has just snapped! My breast isn’t really pink, I can’t see any change in the colour but perhaps it’s difficult as I’m distracted by the massive big lump visible to the eye and the enlargement. It’s also quite a bit warmer than the other breast, hard and tender. I also seem to have two lumps, which I thought was unusual but obviously not.
Theresa, your story just astounds me. Thank goodness you were so insistent and had some knowledge to push it further, just an awful way to come by that knowledge. I’m sorry about your Mum xxx What a horrific time you went through.
Mags, I’m not sure if I’m typical or not? I’m 41, so pre menopause, I took the pill for around 10 years, had one child at 38, breastfed for a the first 3 or 4 months. Always a healthy weight before baby but a little overweight since. I was a smoker in my earlier life and also did my share of partying, but no breast cancer in the family anywhere, although my Dad died from an unknown cancer at 60 and his mother died of lung cancer in her early 60’s.
My Dad’s cancer came as a huge shock. He had a brain aneurysm and was CT scanned, MRI scanned, the whole lot and no sign of any cancer. One year later, almost to the day, he was dead from cancer but they couldn’t find the source. I wonder if that is something genetic?
Mine was a pretty typical presentation of IBC. I first noticed my nipple stinging in the shower one morning and thought “that aint right”. When I looked in the mirror I noticed the right breast was redder than the left and my nipple had started to retract. I got an appointment with my GP next day and she noticed that the right breast was also warmer than the left and diagnosed mastitis. (The symptoms of IBC are apparently commonly misdiagnosed as mastitis.)
I googled mastitis because I had never heard of it before and was shocked to discover IBC. I mentioned it to my friend who’s husband is a cancer research scientist and he said to go back to my GP and request an urgent breast clinic referral. In the 2 weeks it took to get the appointment mhy breast swelled by 75% and the orange peel skin appeared. By the time I saw the consultant my breast was huge very red, very hard and had white ridges as well as the orange peel. The cancer did not show up on a mammogram (which is also common) but I had an ultrasound the same day and it showed on that.
Good luck with your treatment plan. I’m sure they know what they’re doing and are trying to give you the most up to date treatment.
Thank you Theresa. I’m looking forward to getting to next week (if that doesn’t sound too weird?) to be moving on and getting on with some treatment and finding out just exactly what is going on.
In the absence of any hard facts, I’ve decided to think positive and assume everything will go swimmingly! It makes life more manageable in the meantime (thanks in the main to everyone on here and to the power of Bachs!)
Wendy, I first noticed a tiny piece of hardness on the underside of my right breast, it wasn’t red, it didn’t burn externally but internally it felt weird, if you’ve breast fed you’ll understand what I mean when you get that “let down” feeling and you need to feed. My breast continued to get firmer and eventually swelled until it was as hard and as big as a melon, I couldn’t wear a bra it was so swollen. Then 2 weeks after first noticing the hardness my nipple began to bleed, and this continued so that I had to wear a breast pad inside my bra.
After my diagnosis in June 08 I developed an abcess in the biopsy area as I had been cut rather than FNA’d, I then developed the pink inflamed breast that was hot and also lesions around the breast but not in the same area as the biopsy. This was when they took a skin biopsy to check for skin mets, and it was then that I became alerted to the fact that they knew it was IBC, although before this I had only suspected myself from what I learnt via the net.
I don’t think I presented as a typical IBC patient, maybe the reason why I wasn’t actually diagnosed with cancer at all until 9 weeks after finding the hard area which wasn’t really a lump, just a mass of hard skin.
Good morning everyone, how are you all feeling this morning?
Peacock the let down feeling when breastfeeding is a good description! Since you’ve mentioned it I can identify that it is exactly like that feeling at times. Other times it just hurts!
I’m getting myself ready for hospital. I’ve bought some button through pjs and a new toothbrush. It’s kind of hit home a bit and I’m feeling a bit sad. The last time I was getting ready to go to hospital it was to come home with my baby, this time I’ll be leaving my breast behind.
I’m not complaining, or feeling devastated, just a little bit sad.
I’ve also had my hair cropped short and choppy. It made sense to have it as manageable as possible for going in and, hopefully, will be slightly less shocking for my son once it starts to fall out.
All in all, I’m just in hurry to get things going and find out exactly what it is were dealing with and why they’re planning on doing the mastectomy first.
Wendy - i don’t know if it is too short notice but me and monica (daisyleaf) are going to meet up for lunch tomorrow in Newcastle… we will be meeting at 12.15 outside whsmith - opposite fenwicks… pm me if you are interested and i will pm you my mobile number… Monica is the person i was telling you about that is also being treated at the QE…
Thank you Theresa, that’s a lovely idea and a really kind thought. It would be lovely to meet you and Monica and I’m sure you would both be able to give me a load of great advice. Unfortunately, my little boy finishes nursery at 11.30. I could usually ask my Mum to come over and collect him but at the moment I’m saving up all of my baby sitting favours to cover the hospital appointments. I’d love to come another time though, it really would be wonderful to meet you after all the lovely support and guidance you’ve given me on here.
Hi Theresa, hope you enjoyed your lunch! I’ll defo be up for the next one.
I had my bone scan Monday and MRI this morning, to check out that adrenal gland. This afternoon I off for the pre surgery admission appointment and then get to see the consultant again tomorrow afternoon, so I should know then where I’m at and whether or not I’m in for the op next week.
It’s funny, I’ve been so calm and confident this last week or so, but the nearer it gets, the more it’s getting to me. I jumped out of bed this morning at 1am to google adrenal glands! Up until then, I’ve not really given it a second thought. But I did have a lovely dream last night, where basically the consultant told me I was going to be okay and back to normal in no time, it was lovely to wake up with that in my mind this morning.
Mind you, I’m sick of seeing a single magpie! Funny how I’ve suddenly become superstitious.
Good to know you will be finding out what is happening tomorrow… how is your breast doing have all the symptoms etc got any worse whilst all this happening…?
We went to Strada in the end yesterday - by the side of Eldon Square on the green - next to Waggamamma’s… Krissy one of the other ladies who might come next time is also fairly recently diagnosed she has had her op and is on chemo now… she is being treated at the same hospital i was…
Well, back from seeing the consultant and, so far, good news!
There’s no evidence of any spread beyond the lymph nodes. The adrenal thing is not linked, something entirely seperate and they’ll refer me on that a later date, once this lot is over.
The biopsy hasn’t shown any inflammatory cells, but ductal, he said grade2 or stage 2, I’ve forgotton which, but basically much better than I’d hoped for.
He said the inflammation might be an entirely seperate issue but they’ll have a better idea after the op, so I’m going in Sunday, op Monday.
Ooops, Theresa, totally forgot to respond to your question!
My breast hasn’t really changed since referral, although it has grown considerably larger, to the extent that it won’t fit in any bra I’ve got. But there’s still no redness, puckering skin, or nipple changes/discharge.
It definitely is warmer sometimes, but then other times it doesn’t seem any different.
Theresa, I want to say a huge thank you to you, for listening to me moan and worry and for taking the time to answer my questions. You really have been an enormous comfort to me over these last few weeks and you’ve managed to make it all bearable. Thank you xxx.
I hope all goes well on Monday and that you are soon home again… do keep posting and let us know how everything goes… are they doing a mastectomy and lymph node removal…?
Believe me none of us think you are asking too many questions…
The funeral was a fortnight later and to be honest during that fortnight i could have grown two heads and wouldn’t have noticed… i travelled down to the midlands for the funeral and during that journey my chest was hurting but i thought i had pulled myself carrying my bag or something… anyway once i got to the hotel i went for a shower (my mum was in a nursing home when she died so no “family house” to stay in…) anyway i got out the shower and caught sight of myself in the mirror and thought “What on earth is that!” my entire breast was pink… it was literally all the breast tissue… and was very hot to the touch… Straight away i knew it was bad…