Hello everyone, i would like to ask a question please.

FormerMember
FormerMember
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Hello, i would like to speak to anyone about IBC and their symptoms and how it was found.

I am a little bit concerned about my terrilbly itcy breast , most people keep telling me it is nothing to worry about, but i need to be 100% certain.

I had grade 3 breast cancer last year, it had spread out of the milk duct into the surround area,  triple negative, tumour taken out, lymph nodes clear, 3 months chemo and 20 sessions of radiotherapy, finished all treatment October 2011.

In Dec my breast started to really, really itch, it became hot, red, swollen but strangely enough i also got a couple of itchy patches elsewhere on my body. My g.p. diagnosed thrush of the breast which came back negative. Saw a second g.p, who said my breast must have an infection as it was so hot and angry, and i had a10 days course of antibiotics. Still i was itching.   This g.p. also said the reason i had a couple more itchy patches on my body was because my body was reacting to the infection in my breast?  But here i am ten weeks on and my breast still itches like mad, it is still swollen but not so red and angry, but often is pink. I am ripping at the skin on my breast, and mean ripping, i have actually got bruises over my boob now. But apart from the breast, my nipple is very very itchy. I am making myself so sore from all this itching and am in so much discomfort, i dont sleep at night because for some reason it itches nearly all night. I feel totally exhausted with all this. The dr has given me steroid cream, menthol cream and two other creams to help with the itching, but none work.  The g.p. also started me off with 1 antihistamine a day, and i am now on 8 a day, and still no relief at all, but if i take the 8 antihistamines a day, i can't stay awake and cant go to work, which means i dont get paid, and i have got behind on all my bills and am now facing the fact i could lose my home.  There is nothing to see on my breast,  no sores, crusting, no orange peel effect, but my God i cant leave myself alone with this itching. I have seen the radiotherapy oncologist who says this itching is not to do with the radiotherapy?

I made an appointment and went to see the consultant who diagnosed my breast cancer, and she sent me for a mammogram, which they said was all clear, and then they did  an ultra sound, and they said the breast showed swelling and fluid?? I dont go back to see the consultant until the 22nd Feb, but she did say they may do a skin biopsy.

I am worried im making mountains out of molehills, but, they all told me last year there was nothing wrong with my breast, even the  onco who examined my breast said there was no lumps etc etc and then they tell me i have this aggressive cancer? So i need answers.

I would be interested to know how you guys first found your symptoms, and what you did and how you got diagnosed. 

My nan died aged 50 with Breast cancer, ( I am 47) my mum and both her 2 sisters all died of lung and bone cancer, aged 52, 53, and 59 the whole of the 2 generations above me have all been wiped out with cancer.  

I did have a meeting with a geneologist  at the hospital, (not sure what you call him,)  and he did say that he felt my mum and her sisters may have had breast cancer to begin with, as all their cancers were secondary's but none of them lived long enough to find out where the 1st cancer had started, my poor mum was diagnosed and lived for just 12 weeks, bless her.  So you can all understand why i want my itchy breast looked into properly.  I have been told by a cancer advisor that i need to insist on a MRI, as often IBC can be missed on a mammogram but will show up on a MRI, and also this advisor had a 4 inch tumour that did not show up on a mammogram, but immediately showed up on an MRI. But trying to get the NHS to fund an MRI is like trying to get blood out of a stone.

The other parts on  my body that were itching have all died down, but my breast is still going strong so to speak, and it is honestly driving me insane, i cant begin to tell you how itchy it is.  I dont know if this is relevant, but  i also get a feeling of hot needles digging in the outer side of my breast, most uncomfortable.   One more thing i have noticed, and i don't know if this is just me panicking now, but there is an area of skin, that looks very very slightly different to the rest of my breast, it is only a small area i.e. 1inch by 2inch, i would not say it is the orange peel effect, but maybe a very fine pitted effect. I really don't know how to explain it. 

Im so sorry to go on, but i am so confused. I don't feel well in myself, and i have the inner feeling that something is wrong with me, but i just dont know what? I went out shopping Saturday, in the car, and i walked round a few shops and had to go back and sit in the car as i just did not feel well, felt like i so badly just needed to sit down as i was so weak?

Please reply.

Many thanks indeed for your time and patience.

Honey 

  • FormerMember
    FormerMember

    Hi Honey - I just wonder if the itching business is diverting attention away from the main issue.  If you stick with describing the 'hot and angry', 'swollen', breast, etc especially now you have a small pitted area then they won't spend all their time giving you medications to fix the itching.  What comes out strongest from what you are describing is 'stop the itching' whereas what you really want is a proper consideration of the possibility of IBC.

    There are places you can go to get thermal imaging (Harley Street or Bristol) which may give you indicators as to whether cancer is active in your breast  But the best thing must be to find a consultant who knows something about IBC asap. Urgently.

    Very fine pitted effect is how I would have described mine.  I had an unhelpful reaction to chemo and saw the full orange peel effect but mostly mine has been about swelling up and looking very pink, sometimes hot.  I have not had itching but itching can be a symptom. 

    Print off an article about IBC and take it to your GP.  GPs don't always like that but hey, tough!  This is your life, we're talking about.  Try  www.webmd.com and click to go to the UK site then you'll find information sponsored by Boots - can't get more mundane than that!  That might do it.  If he or she isn't impressed, emphasise that IF it's IBC, it's extremely aggressive, often mistaken for something else, and that your family died quickly from cancer and so the origins of their cancers were never properly ascertained.  You need to get a proper diagnosis from someone who has experience of IBC.  Try not to be anxious, be clear because the medical establishment respond better to that. 

    If that doesn't work, what about asking your local Macmillan team for support? Maybe they'll help you work out how to get what you need? Or search online (via private insurance sites) for a consultant who specialises in IBC.

    Believe in yourself, Honey.  Good luck!

     

  • FormerMember
    FormerMember in reply to FormerMember

    PS Might be best to see another GP at your surgery, not someone you've already seen.  Somebody new will often have a different perspective.

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you so much for your reply, its nice to know someone is out there. 

    I do wonder as i said that i may be going 'over the top'..... but thats because of the terrifying time i had last year when the consultants told me i was fine and had nothing wrong, they even put it in writing to me, then tell me 'well actually you have an aggressive cancer'' so ive lost my confidence so to speak.

    I had a look around on the internet last night at pictures of people with IBC and my breast is not really like theirs. They had such severely swollen breasts and they were shiny with the swelling and they were not just red, they were purple in colour. Well mine is not like that.   Ive had a good look in a magnified mirror at my breast and at the top part of my breast i have some slight discolouration, brown in colour, but its not where i had the radiotherapy.  This bit of skin does feel different to the rest of the breast, but i'm not sure if its a pitted look or not, going by the pictures i saw last night, they were deeply pitted and were so very obvious, well mine is not like that. 

    My breast is sore, and it is swollen on one side. It goes from pink in patches on the breast to pink in big areas on the breast, it seems to change but is no longer hot and angry any more. I get this horrible feeling of sudden sharp pain, like sudden needles pricking into the breast, ive not read that on anywhere else.. I just dont know what to think, ive felt the lymph node area, and can't feel anything but i dont know what a lymph node feels like.  I was at work today and my breast itched the whole day, and i had to sit in front of everyone and constantly scratched, it was humiliating as it was mostly my nipple, i kept going into the loo to take my bra off so i could get some relief and have a good scratch, but this is ten weeks on now, when will it stop.  I'm very confused and just dont know what to do, but until i see the registrar on the 22nd Feb i wont know what she wants to do, she did say if im still itching she would do biopsies and so far im still itching, but i hate the lies, i asked her biopsies for what, and she answers oh nothing to worry about, just to see if we can find what it is causing your itching, well she's not a dermatologist so that is not true, she must be doing it because she is looking for IBC.  I dont know how to say to her in a firm but pleasant manor, dont pussy foot around me, tell me straight whats going on, and i WANT an MRI as i know that mammograms do not always pick IBC up. But how do i say this.

    Thank you for listening.xx

  • FormerMember
    FormerMember in reply to FormerMember

    The pictures on the internet are extreme - mine didn't look like that either.  (Do you want to wait until it IS that pronounced?  NOooooo!)

    They won't answer you because it's 'unprofessional' to hazard a diagnosis without the tests first.  In principle anyway.

    I believe that IBC is picked up by biopsy. Biopsy is more certain than scans.

    'How do I say this?' - I think the answer is to ask. 

    ASK her 'Will you be testing for IBC' and then pause to listen while you make sure you get a clear 'yes, we will be doing that'.  ASK her if she has experience of IBC.  Listen to her response.  If you feel that she may not being clear with you it may be lack of knowledge - a registrar is not a consultant.  So ASK for a review by a consultant.  You probably should ask for that review NOW during your current visit. The consultant should (?) always be there so the registrars can consult with them (!)

    Write down what you are going to ask and keep your eye on your list.

    All this 'asking' is very tough. But so is the listening for a response.  I find both difficult!

    But it's not our job to know for sure the diagnosis before we can ask or get answers. It doesn't matter being sure that it IS, what matters is being concerned that it might be and getting it looked at.  If IBC were better known then we probably wouldn't have so much difficulty.  After all, if we find a lump, we know, everyone knows, that we go to the GP and the GP gets us a quick appointment. The GP knows, the system is in place, etc etc.  IBC is more ephemeral.  So far.  As soon as you say your breast is hot and swollen, you're not nursing, ointments and anthistamines and antibiotics have been tried without success, the thing has gone on far too long already.

    Do you have a Macmillan nurse?  I had my first appointment today and I get the impression that they are there to be a go-between when we can't get heard so that could be a backup if you still don't get sorted.  

    That Australian singer got fobbed off and told she had nothing wrong with her but she persisted and it all got sorted.  You can do it, too. :-) 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Rosie, still a bit confused as i am doubting myself.  I am going to be more assertive this time, but concerning this area of skin i have on my upper breast, i had a very close friend come round and look at my breast for me, she said she could see straight away the 'pitted' area i was talking about, and she has taken a photo of it, but the only camera i have is on hubby's phone so is not a good picture. Please have a look at this photo for me Rosie and tell me if it resembled your 'pitted' area.  

    My breast is still swollen and i still have the feeling of hot pin pricks in it all the time and the itching is just awful.  My appointment is on 22nd Feb so not too far away now. I look forward to seeing what you think. 

    Thanks, Honey x

  • FormerMember
    FormerMember in reply to FormerMember

    Well, it's not about us diagnosing ourselves but simply asking the right people for the right things to be taken into consideration.  But yes...that looks very familiar!!! 

  • FormerMember
    FormerMember in reply to FormerMember

    Hello Rosie, thank you for replying so quickly.

    The photo i posted above is much bigger so is a bit 'blown up' so to speak, so the pitted area you can see is a bit smaller in real life.  I'm still itching like hell, but i still have the other couple of patches on my body, but im not going to mention these again to any of the drs because like you said, i think they are concentrating more on the itchyness being some kind of allergy thank anything else. 

    I'm not in any pain, but am tender, and still have the feeling of hot needles pricking my skin on the boob.

    Rosie, can i ask how you are doing, what happened with yourself, and what stage are you at now, i hope you don't mind this.  

    I may ring one of my oncologists today, even though i have my appointment with this registrar on the 22nd, not at any one time is the proper consultant in the room, she is dealing with me totally on her own and using her own experience! I may see if the oncologist feels this is the right path to take.

    I really appreciate your honesty Rosie, as i stated before, i cannot stand people pussy footing about, or trying to smooth over the cracks so to speak. 

    I will update once ive seen one of the dr's.

    Many thanks for all you help

    Honeybea xx

  • FormerMember
    FormerMember in reply to FormerMember

    Hello,  I thought i would update .........

    I rang my Oncologists secretary at the Guildford hospital where i was treated for chemo and RT, and i explained absolutely everything to her. She said i was to ring my breast care (Macmillan) nurse at my local hospital ( the one where i was first diagnosed).

    Well i rang the breast nurse straight away, and again explained absolutely everything to her. She said i was to wait until my next appointment on the 22nd Feb as she did not feel it was urgent!! She said if it was IBC, in the 8 or9 weeks i have had this itching boob, i would have also noticed dramatic changes in my breast, she said these changes would have been hugely obvious???  I said to her well the itching started 8 or 9 weeks ago, i have swelling , and in the last few weeks i have this funny patch of skin (the one i have posted the picture of in the post above) but she said i would have dramatic changes so i was not to worry and just come to my normal appointment in 9 days time??? I can't say there have been any 'dramatic' changes, but there are obvious changes because the scan i had picked up swelling and fluid in my breast., but i would not say huge changes. 

    Well i am still confused lol, so  i will just have to wait until my next appointment.  She did say that even though the dermatologist has told me to stop my  heart meds for 3 weeks, she felt this was not long enough, and it should be for 6 weeks, so she's confused me a little bit more. 

    I feel im going round in circles.

     

    Honey xx

  • FormerMember
    FormerMember in reply to FormerMember

    Good for you for explaining so carefully - but you've spoken to a secretary who is trained to make appointments and knows nothing about diagnosis - who passed you on to a nurse who one might say has 'diagnosed' you without even looking at you although doubtless what she intended to do was to  reassure someone not to worry when they have an appointment coming up very soon anyway.

    I agree that there really is nothing you can do until your appointment with someone whose job it is to do the diagnosis and who can actually take a look. You just need to make sure they have some experience of IBC or that they provide you with an appointment with someone who does. 

    I'm not surprised about your confusion re the heart meds - since when do dermatologists (or non-specialist nurses) decide what is safe for someone with a heart condition to take or not?  The only person who could safely do that would be your GP who is the only one with an overview of your health and meds.  But I can see that you are starting to go round in circles.  I can only sympathise.

    My symptoms were not as this nurse described.  Mine has fluctuated, come and gone, ebbed and flowed, both before and during treatment.  It also seems very responsive to stress.

  • FormerMember
    FormerMember in reply to FormerMember

    Hello Rosie and anyone else reading this....

    I think i should change my name to confused.com   lol.

    Well i have been in hospital but only for a day, you were right Rosie about the dermo messing with my heart meds, i made it to 2 weeks almost but by Saturday i could not breathe. I become practially disabled. I tried to shower Saturday morning but could not breathe, my heart was at 160 bpm, so i rang for  advice and they told me to go to hospital, i could not even sit up without becoming breathless, i told the dermo that i tried for 5 days without these meds once before, but she just shoo shoo me away saying 'oh your be fine'.  I can honestly say that i have just about had enough of all these drs and consultants just telling me i will be fine, or not to worry, its not like i will lose a false nail or something, its my life we are talking about.  I could not walk as i could not breathe, and thats not a nice feeling.

    Any way the hospital put me straight back on the heart med and my breathing is a lot better, not completely but i can do things now. 

    Rosie, and anyone else who would be happy to reply... Can i ask, my boob has calmed down now, i'm still itching but a whole lot less than i was, but i had been itching for a solid ten or eleven weeks 24hrs a day. My boob is no longer inflammed or anything. Would this happen if it was IBC or would it always itch and be red all the time, i just dont know what to think. To be honest i dont want to put myself through biopsies on my boob unless really needed, i already have a nice collection of scars and of course the little tattoo's from my treatment lol.   The skin itself has not changed or lessened on the boob, and when in the car today, the sun was shining very very brightly, and it shone in the windscreen on my chest and i just happened to look down and i could clearly see the pitted effect thingy is now proper sort of little holes???? But you can only see how pitted this is if a bright light is shone on it, its not that obvious without a bright light, Once under a bright light i can honestly say the pitting has worsened since i posted that photo. I am going to try and borrow a camera and take a much better picture, mainly so i can show this registrar what it looks like, as she has a dark surgery room, with frosted windows, and the curtains are pulled all the way around the bed when she examines me, and i'm afraid, just like the dermo Dr, she was take a quick glimpse and say ' oh your fine'. I need to be sure i'm fine, there is no room for mistakes with IBC.

    I was wondering how you are doing Rosie, i hope you are good.

     

    With thanks for any advice.

    Honey xx