It took months to finally be diagnosed with inflammatory breast cancerening

Pepper Member Posts: 1
edited October 2016 in General discussion
Although this happened nearly two years ago I wish to share my distressing experience so others will be more aware if in the same situation.  It was late 2014 when I felt a hardening behind my left nipple.  fearing cancer (I had early breast cancer in same breast in 2006) I went to my GP who sent me for an X-ray. Results was 'all clear'. Meanwhile the hardening got a bit bigger so GP sent me for a mammogram. result 'all clear'. Weeks went by, the hardening spread further, again another visit to GP and sent off for an ultrasound.  'All clear'.  No one seemed to be taking notice of this hardening, which by now feeling like a Breast implant.  I didn't know what to do so in desperation rang a Breast care nurse.  BLess her!  she made an appointment with a Breast specialist.  so in May 2015, my left Breast now larger than my right, the specialist said she was almost certain it was Cancer, took a biopsy and  booked relevant  scans etc and even chemo to start within the week subject to confirmation. PHone call next day confirmed 'positive' with a few appointments in the following days and started chemo at the end of the week.
Now after 4 1/2 months of weekly chemo then a double mastectomy in October I am once again Cancer free.


  • iserbrown
    iserbrown Member Posts: 5,563
    Hi Pepper - goodness what a long way round to a diagnosis!   I hope others read your story and take heed; we know our bodies and know that something is not quite right and needs looking at further.
    Are you still having treatment? 
    As we all come to realise the diagnosis is Breast Cancer but the resultant treatments are all so different and we all react differently. It's the hidden extras (side effects) that drives me nutty!
    Take care and wishing you well as you adjust to the new you, a model that is cancer free
    Please go on the post Calling All Network members and log your birthday so you can be part of the happy times as well as!
    Remember we are all in this together
    Christine xx
  • Mira
    Mira Member Posts: 678
    Thank you for sharing Pepper.  Thank goodness for the breast care nurse!  Lets hope you stay cancer free now for a long, long time :smile:
  • socoda
    socoda Member Posts: 1,767
    Hi Pepper, Thank goodness you knew your own body and your breast care nurse knew her stuff!!!  I think the breast care nurses are magnificent and sanity savers. I reckon she would definitely have a place on the Xmas card list ;) Congratulations on again being cancer free. How are you going to celebrate??? Xx Cath 
  • primek
    primek Member Posts: 5,392
    edited October 2016
    Biopsy biopsy....always the way to go I teckon. Well done bc nurse. Great to hear you are now cancer free.
  • Afraser
    Afraser Member Posts: 4,388
    On a slightly more positive note (what a cautionary tale!) when I went to my GP with slight soreness (no lump) and very slight swelling, my GP took one look at my breast and said" We need someone who knows more about breasts than I do", sat down, got on her computer and phone and got me an appointment with my terrific breast surgeon (in 36 hours) before I left the surgery. Although to be fair, I am sure your GP thought he/she was doing much the same. But well done, breast care nurse.
  • Hopes_and_Dreams
    Hopes_and_Dreams Member Posts: 760
    Thank goodness you didn't give up Pepper and finally found that wonderful Breast Care nurse!  It scares me when I hear stories of women who get an all clear from their mammogram, sometimes for years.  As primek said, a biopsy takes all the guessing away!  I hope your treatment is complete and you are enjoying good health.  best wishes, Jane :)
  • Melhay
    Melhay Member Posts: 157
    Hello Pepper, thanks for sharing your experience.
    Good for you for sticking to your gut instinct that something wasn't right. 
    I was lucky my Specialist was very pro biopsy. He even apologized for possibly being over cautious - thank goodness he was.
    All the best with your treatment 

    Mel xx

  • Ne
    Ne Member Posts: 336
    It took 13 months for me to be diagnosed with breast cancer
    after I found the lump.  My first ultrasound said 'benign cyst'. 
    Ultrasounds every 6 months was advised (only because I asked: 'should I be
    checking it over time? and the GP said "only if you want piece of
    mind" so at my 2nd ultrasound 6 months later the GP says it is still a
    benign cyst, nothing to worry about.  What I didn't know and a small fact
    the GP failed to mention was that in that 'benign cyst' report at the very
    bottom of the page the radiologist recommends that patient could go for FNA
    (Fine needle aspiration) for peace of mind. I wouldn't even know what FNA meant
    back then so when he said "naaaa all still just a cyst" I just
    accepted it.  He NEVER told me that the radiologist said I could have FNA
    if I wanted to make double sure!!! If I had known an FNA was advised and what
    that meant (a proper biopsy test with a needle) I would have said YES PLEASE
    TEST THE LUMP CAUSE IT BUGS ME SO MUCH!.  Alas, another 6 months later
    (now 13 months down the track) all hell breaks loose, very aggressive invasive
    ductal carcinoma, the cancer had spread to my nipple, skin, two smaller lumps
    next to it and the main lump almost double in size now 3cm!  The rest is

    I was 39 years old and had not known of any breast cancer history in my family
    so GP was just not being aggressive in my testing and not concerned.

    Turned out after investigation there were breast cancer on my dad's side of the
    family many years ago.  I did a genetic test and tested positive for BRCA2

    My advice to anyone is NEVER ASSUME because you don't know of a cancer history
    that you are ok and don’t need further tests or more investigation. 
    Listen to your body! If you are concerned asked for more tests! READ YOUR OWN
    reports! don’t rely on a GP to just give you a result or skimp through it. Ask
    questions.  It pains me that they always hammer on in the media about
    'early detection saves lives' when I detected my own cancer well in time for it
    to be removed.

  • Moosie
    Moosie Member Posts: 30
    I have a very similar story with ongoing mammograms ultrasounds lumpectomy and fine needle biopsy all saying negative for 12 months. Then in April a core biopsy identified three triple negative tumours and inflammatory breast cancer. All the care and follow up in the world cannot avoid this disease. 
  • au0rei
    au0rei Member Posts: 248
    Thanks @pepper for sharing! My sister in law's mum was recently diagnosed with IBC too and I have never heard of this breast cancer till now. It took a while to find out her diagnosis as well. Usual US and mammograms cannot diagnose this sort of cancer but it does have distinct symptoms. I am so sorry it was such an ordeal for you. All the best. xx
  • Brenda5
    Brenda5 Member Posts: 2,423
    Wow, my Dr sent me for a mammogram which sort of evolved into an ultrasound which turned in to a fine needle biopsy on the same day! They weren't letting me out of there until they had a diagnosis sorted. Within a week the Dr had the pathology and the tests results. What no one foresaw was I had node involvement as well. During a proper biopsy a few weeks later even that Dr assured me the sentinel node looked good in the ultrasound and they wouldn't need a biopsy of that. After surgery and a single mastectomy during which they only took a single node out, it came back positive. That mean't I had to have another surgery to remove all my nodes which were all negative. I can't help thinking if the surgeon had been a tiny bit more adventurous and taken a few nodes in the first place, the results would have been positive for one, negative for 3 or 4 others and I wouldn't have needed that second operation and I may not have developed lymphodema.
  • Afraser
    Afraser Member Posts: 4,388
    Ah what if. It can bedevil us all. I had one node biopsy, it was positive, 17 went, 16 were negative and I did get lymphoedema. But....I saw the ultrascan, at least 7 or 8 nodes looked as enlarged and suspicious as the one tested, I would have taken them out too. The "what if" that might have eventuated if they had left them in, even for a short time and the cancer spread isn't a good one. It is what it is. Surgeons aren't perfect, we all do the best we can at the time with what we know. We can all be really wise with hindsight. 
  • melclarity
    melclarity Member Posts: 3,521
    @pepper, wow that's shocking!!! I had early BC in 2011 and again in 2015, however I was found early again as I was on yearly appointments with my Breast Surgeon. Did you have a Breast Surgeon at the first diagnosis? sometimes people don't. Thank goodness you decided to see a Specialist...hugs Melinda xo