Not coping with waiting (for diagnosis).

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DreamDay
DreamDay Member Posts: 6
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hi all,

I will try and keep this brief.  First of all, I do not know if I have IBC or not yet, though some of my symptoms seem to fit.  However, I seem to have suddenly jumped into a high state of anxiety/depression/fear.  I live in England, and today I saw my General Practitioner.  He referred me to a breast doctor at hospital later this week.

It started 6 months ago when I had an "insect bite" diagnosis, which then changed to a "breast abscess" diagnosis.  This was a large wound which burst and which was treated by antibiotics.   They also checked me with a mammogram which was so painful (I have large breasts) I was reduced to tears and they had to stop, and had ultra sound I think its called (the cold gel). 

Over this weekend however some new breast symptoms have suddenly appeared.  Pain and some swelling, raised skin.  Some purple bruising colouring nearer the nipple.  I was very alarmed.  I expect the hospital will repeat the tests (ouch) but I will also ask for biopsy this time. 

I found it quite difficult to be believed by the GP and nurse I have spoken to today, and I was told of the dangers of reading up on illnesses on the internet.  Of course they are trying to stop me from feeling unduly alarmed, but some of their comments made me think they are not taking my concerns seriously.  To be honest I am so confused, I don't know what to think.

The thing is I am not coping very well.  I have been crying a lot, I hardly slept last night.  Most of today I felt very depressed, and as this is just the start there is going to be even more waiting for results, etc. 

Can anyone offer any ideas on coping ....?   Its all I am thinking about, and I have a few days to go before I even see the breast specialist.

(I should say I am a single parent, and there is only me and my 11 year old son, no other family or support, so that situation is making me worry even more, I am very concerned about my son.)

Sorry if this is a jumble.

Thank you.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited January 2014

    Dream Day, 

    Sorry you have to deal with this, especially since you are young & have a son that needs your attention. I cannot speak of IBC, not familiar with it, I have lobular cancer.

    Keep yourself as busy as possible, the waiting is torture. So, do whatever it takes to be productive, play games with your boy, go for walks. When we are going through these stressful situations, it's easy to think the Drs., nurses, techs are not taking us seriously. If you are to repeat the mammo or us, maybe you could take a anti-anxiety med. to get you through it...good luck...

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  • DreamDay
    DreamDay Member Posts: 6
    edited January 2014

    Thank you Holeinone for your suggestions.  I don't think I'm that young though (52) but yes I'm concerned for my son.  I expect all these feelings change day-to-day.  I have asked for sleeping meds.  May ask for something more, or just let feelings follow their course, will see, but my GP did seem alarmed at my high anxiety state (crying etc).  Its worrying of course when you suddenly feel "not coping" at all as well as having my son's feelings to think of. 

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  • AZ85048
    AZ85048 Member Posts: 2,613
    edited January 2014

    DreamDay - I can't add anything to what the ladies before me have advised, but just wanted you to know that you're not alone in this.  Praying that your fears are unfounded and that you can get the answers you need quickly. 

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  • DreamDay
    DreamDay Member Posts: 6
    edited January 2014

    Thank you for your kind and helpful words. 

    Sending love and hugs to anyone in a similar situation.

    Or anyone just feeling the need for support on here.

    xxx


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  • AZ85048
    AZ85048 Member Posts: 2,613
    edited January 2014

    DreamDay - As I recall, you have an appointment later this week.  I'm hoping that you're doing OK and your anxiety level has lessened somewhat.  Now go hug your son - but at 11, he probably won't like that very much.  ;-)  Please keep us posted on how you're doing...  we're all waiting with you!

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  • DreamDay
    DreamDay Member Posts: 6
    edited January 2014

    Thanks.  I don't which is worse.  My GP.  Or the friend I told who said "It might be a way of my body asking for changes" and I would be "fine" because she didn't think it was IBC.  She was trying to be helpful, what can I say, its just too hard to explain.

    However, I feel armed with the main medical knowledge I need, and am seeing the breast specialist this afternoon.  I am going to ask for an MRI and biopsy ASAP.  But emotional coping is still hard, may need more help there.

    I hope to take a break from my research, posting and reading now, and have a quiet time for a while. 

    Love to all
    x




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  • RNHER2
    RNHER2 Member Posts: 1
    edited January 2014

    My sole purpose in replying is to let you know that you are not alone...  I was diagnosed with IBC in 2005 and what I read about the disease really scared and overwhelmed me.  I learned to go through each day with an "I made it" attitude.  If you have IBC you will need extensive treatment.  I'm here as proof it can work.  If it worked for me it can work for you.

    My OBGYN said something I have always carried with me.  He said that "at all stages of cancer someone survives, and that someone can be you".

    Good Luck

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  • Christycain17
    Christycain17 Member Posts: 29
    edited January 2014

    DreamDay....I just wanted to say that I am sending my prayers for you. 

    XXXOOO!!

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  • alicki
    alicki Member Posts: 661
    edited January 2014

    Hello, 

    I was under investigation for 6 months before I found out I had fibrocystic mastosis + other stuff +  hyperplasia and hypercanthosa of the breast skin, (don't ask!). Under high surveillance now.

    If you aren't taken seriously, then go to London and to the London breast clinic:

    www.londonbreastcarecentre.co.uk

    You can ask for Prof, Mokbel. (his secretary's name is Nikki)

    He'll clear any doubts you have, he's a specialist oncologist in IBC and early breast detection. He's the 25 best in the world and one of the best in the UK. The consultation is about 200 pounds, but worth every penny. Their radiologists are really good too. And path results available in 48 hours.

    You can PM me for further info if you like.

    Best

    Alicki

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  • DreamDay
    DreamDay Member Posts: 6
    edited February 2014

    Sorry for long delay in replying, been busy with tests of various kinds and waiting for results.  Plus generally shattered with other problems too.

    I had the result of mammogram, examination, biopsy and ultra-sound and the results were all OK. 

    So, I feel better - though I don't think I will ever forget the deep-seated alarm and distress I felt at the time.  I am still puzzled as to why I have repeated (X2)  breast cycts, and will take this up with doctors once I am feeling stronger. 

    Once I got to the hospital, things were better (or perhaps I had nothing to lose and was more quietly demanding), but I have to say I didn't find my GPs helpful.  Here in UK its a "10 minute" consultation, and I've seen a few of them looking anxiously at the clock, and one of them was spectacularly rude to me as well.  Unless its something simple like thrush or a cold, I think you have to deal with the NHS here in the UK very persistently, quietly and diligently to get any results.

    If I had known Alicki, of the breast clinic you describe in London, I might have gone there in the first place.  Thank you for that information, it might prove useful to others visiting this page. I hope your surveillance continues positively.

    And thanks to others here too for their well wishes.  Its been very humbling to see the bravery here as well as the desire to help others (especially Bon). 

    With love and best wishes to all.

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  • alicki
    alicki Member Posts: 661
    edited February 2014

    hello,

    Thanks. Glad things got sorted. I'm going back to UK on 17th March for mammogram and discuss breast issue management. One thing I've learnt in this process, I want the best docs and if I have to travel to get them, I will. Mokbel is really great so don't hesitate if you need him.

    Best

    Alicki

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