This is my first post having never been through anything like this before. I am terrified and driving myself crazy.
15 days ago I had an incredibly itchy and uncomfortable right breast. My bra was leaving marks but I was pre-menstrual so put it down to hormones (I’m on the verge of peri-menopause so my body does throw some interesting things my way). The following day I had a red/purple discolouration to most of my breast and peau d’orange. I gave it 72 hours but when there was no improvement I saw the GP. He was excellent, took a full history and put in an urgent referral to the local breast clinic.
My appointment was last Friday (12 days since the start of symptoms) but they cancelled and rescheduled for the Saturday. Everyone at the clinic was lovely: the surgical consultant, two specialist nurses, a radiographer and a consultant radiologist. I had a full history and examination, screening mammogram on the left and diagnostic mammogram on the right, followed by punch biopsies.
Whilst having the ultrasound I got very emotional but the nurse and consultant radiographer both said that there was nothing to see. When the surgical consultant showed me the mammogram he said the only thing to note was skin thickening of the whole of my right breast. Compared to me left, it was very obvious. He said he wasn’t concerned but the biopsies would rule out anything sinister. He asked me what I was concerned about and I told him, IBC.
I am a healthcare professional and I specialised in oncology and palliative care for almost 15 years. The change in my career direction came when my mum was diagnosed with cancer of unknown primary with aggressive metastatic disease. She passed away 7 months after her diagnosis.
I am a single mum to two boys. I am not ready to leave them but in the last two weeks I have planned my funeral, re-written my will, and started to clear out all my paperwork and rubbish. How am I going to tell my children?
My follow-up appointment is the 18th July but there has been no improvement in my symptoms. I am on a high dose of antibiotics just in case there is an infection but like I said, no change. The discolouration does lighten and darken at various points throughout the day, as does the prominence of the peau d’orange.
I am so sorry for the long post.
Hi LL79 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It's perfectly natural to be worried and to think the worst and I know how hard waiting for results can be.
I didn't have the same symptoms as you, in fact I didn't have any symptoms and my breast cancer was picked up from a routine mammogram, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
While you're waiting for replies, it would be great if you could put something about your symptoms and tests into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi LL79 I was diagnosed with IBC 2 years ago. I had a mammogram and it showed nothing and the doctor that did the ultrasound was puzzled as to why she was doing it as my mammogram didn’t show up any
hing like a lump. My whole breast doubled in size in the 3 weeks I had waited for the one stop breast clinic there was also skin thickening, an inverted nipple and peau d orange with oedema and someredness. I could take it back to less than three months as it started with heaviness and then the swelling and redness. There was no lump for me but there can be a lump and the lymph channels in you breast is affected. Luckily my surgeon agreed with me that I had IBC and they sent the biopsies away and treatment was started about 3 weeks later. There is an international protocol for IBC. You cn find that on their website and you will get a lot of support from the ladies in the group. Have you been offered an mri? If not as if they will give you one. I had invasive lobular breast cancer ith IBC and the cancer grows in sheets so it rarely gets picked up in a mammogram. I was stage 3 b grade 3 ,when IBC is found it is stage 3 .Advocate for yourself hun as there are a lot of doctors hat may never come across someone with IBC in their career. I’m about 20 months on from finished of active treatment and I am on letrozole for 10 years and Zoledronic acid infusions for 3 years but am doing well. When you have a plan and you know what treatment you are going to have it will be chemo, mastectomy then radiation and depending on the biopsy results then there may be further treatent. I’m wishing you all the best that it isn’t IBC hun. Please let me know how you get on. Jxxx️
Hi LL79 I'm glad that I could help. Itching was another symptom I had too. Please let me know how you get on Hun.Thinking of you. Jxxx
