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Inflammatory breast cancer

Mothergoose58
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Hi,

Today I was told my punch biopsy came back positive,  meaning the breast cancer has gone into my skin. Consultant didnt use the word "inflammatory" but did say this makes me more urgent...I was diagnosed 27th May but still waiting for treatment plan...they did say chemo first though. Be good to chat with anyone who has gone through/ is going through similar as I'm feeling very wobbly today x

  • Offline in reply to leelaloo

    Hi Lee,

    Thanks for your reply and hopefully you're right re waiting a bit longer not making much difference. Feeling a little more upbeat and positive today. Just been for my CT scan to double check the adenoma so keeping everything crossed for that one. Hope all is good with you.

    Julie x

  • Offline in reply to Jolamine

    Thanks for your reassuring words Jolamine. Feeling more positive today and yes not even thinking about the surgery part of things just yet as that's a long way off. Your words are very reassuring though, much appreciated. 

    Julie x

  • Offline

    Hello there. I was thinking about how you are doing. I am so surprised, how long everything is taking for you.  Considering we were both diagnosed o the same day.

    Have you started any oral medication yet. I started Letrozole as soon as I saw the breast surgeon in an effort to reduce the size of the tumour whilst I wait for surgery. I had had my MRI  with contrast 2 weeks ago  and a provisional date of the 5th August for surgery, (lumpectomyand sentinel node biopsy). I have had numerous support calls from the breast nurses. An offer of counselling if I  need it. 

    I just feel for you that your journey is delayed or slow in many ways. I think that frustration must be making it so hard for you to make plans on your everyday life.  Please keep pushing your team as much as you can to try and expedite things. 

    Best wishes 

  • Offline in reply to Mintymo

    Hello, glad things are moving for you. To be fair, mine has moved quite quickly this last week. I've had ct scan, echocardiogram, pre chemo assessment, bloods etc and I start chemo Tues ...bit scary but I feel well informed. Not looking forward to the side effects though but if it does the job and shrinks the tumour enough then it will be worth it. Look after yourself and keep in touch.

    Big hugs xx

  • Offline in reply to Mothergoose58

    Good luck for Tuesday Mothergoose.  Best advice I was given is to try and stick to your normal routine.  I did this throughout chemo, went for a walk, meals etc.  Obviously you can't keep to exactly the same routine but as much as you can.  It gave me a sense of control.  I didn't work when having chemo though.

    Lee x

  • Offline in reply to Mothergoose58

    Hi Mothergoose,

    I am glad to hear that you now have a date for chemo to start and have done all of the pre-chemo checks. Not everyone gets problems with chemo - it depends upon what type of chemo you have. Here's hoping that you find it all manafeable.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Offline in reply to leelaloo

    Thanks for the tips Lee and yes want to try and keep things as near normal as poss. I'll keep you posted xx

  • Offline in reply to Jolamine

    Many thanks Jolamine, and yes let's hope it's manageable. I'm going to be on carboplatin plus docaxetel and also phesgo. Some say it's brutal but we are all different so fingers crossed it doesn't cause too much grief. I'll keep you posted xx 

  • Offline in reply to Mothergoose58

    Hi Mothergoose,

    All you can do is to be prepared for any side effects. If you get any, make sure to mention them to your care team, as they can often help to fight any side effects. I'm keeping my fingers crossed that all goes well for you.

    Jolamine xx                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              

  • Offline in reply to Jolamine

    I read your posts and wishing you all the luck in the world. 
    I'd like to say that frankly, after finding tumours twice four years apart and having EC chemo and radiotherapy, 23 operations etc I totally get your frustration. 
    I've mentored working women with breast cancer for years and we all feel the same way
    "the admin is more likely to kill you than the cancer"  

    That sounds glib, but after the unexpected shock of the diagnosis, all I wanted was for this tumour to be out of my body. To laser focus on meeting the medical team and getting on with it, 

    Waiting weeks feels like cruel torture and I imagined this thing growing and becoming stronger, as you did. My kids were 2 and 4. I owed it to them to get the evil gone. 

    No doctor could or would tell me, despite oncotype testing, how quickly it would be growing. What the dangers were of waiting a week more...

    Over the years and after many medical shenanigans I have noticed that I am no longer just an obedient patient but want to be engaged with by the medical teams.
    I want an alliance that generates trust. I don't want to accept feeling like I'm taking up their time or am a number on a list to tick off that day, which was my first oncology experience. 

    Asking questions and getting the answers I want has humanised the oncologist: patient dynamic. 

    once chemo started my husband or a friend came to all consultations to discuss side effects. 

    I read also told tat every journey was different and that chemo is so well modulated that people just sit on their laptops working away!

    In my experience neither of those things is true. 
    mentors g breast cancer patients around the world during amd after treatment, so much of the experience is universal. 
    the reason that I do this work is because every single woman has said: I thought that I was the only one who felt like this, or had this reaction, The chemo ward will not feel like we work!!

    A former Businesswoman of the year is a good friend and couldn't have worked during chemo. Nor could a major finance honcho or a sex toy mogul: I've asked them!

    personally sone days I could write a strategy plan but most days I really couldn't. I really enjoyed my pastoral care work! 

    whether you are working or not, chatting with someone else about their problems can be a massive relief!

    (Idon't agree that anyone has a symptom/ side-effect free cancer chemo/radiotherapy/letrozole treatment. I believe that not acknowledging that fact does women a huge disservice. It isn't reassuring women who are emotionally vulnerable - it's damaging. So many women then feel weak and too needy. That's got to stop,)

    Letrozole for me was hard for the first mo th but got used to it. 
    I wish that I'd taken your route of trying it before chemo. 

    I don't know if you will need or are considering ice cap treatment. If you are, I really recommend giving Daniel Field a call. He's a biochemist hairdresser for women with cancer or autoimmune diseases. 
    His products are very affordable- he does it for the love-and literally kept my hair on!!

    I'll be thinking of you , fingers crossed for swift and successful healing.

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