Diagnosed in November with dcis

Hi

So sorry to hear your conflicting results and what you are going through. I too was diagnosed with DCIS in November and had a lumpectomy on 17th Jan. still very sore and raw. I do worry that there are still cancer calcifications there and spreading as my follow up is not until 7th Feb. I totally understand the anxiety, the waiting for information and results is so long. I’m not getting any feedback inbetween

Not sure what process of tests you went through, I can only relate to mine. Bear in mind too that cancer cells can change between diagnosis and surgery, as mine did. You may not have been incorrectly diagnosed. 

I noticed a small dimple in mid-September so rang GP and immediately referred me to the Breast Centre (family history). Appointment arranged for end of following week. 

Physical examination by consultant, was not concerned as nothing felt unusual, but since I was there, sent in for Mammogram (bi-annual one was last April which was all clear).

Mammogram showed 'something' so immediately sent in for ultrasound. It's cancer but we don't know what kind. 

Sent back into sonographer's room for punch biopsies.  All of this happened on the same appointment, 2nd last week of September. 

Back to the Breast Centre a week later for result of biopsies. They took 9 samples. Stage 2 Invasive Ductal Carcinoma HER negative. Lymph nodes felt fine and ultrasound didn't show any involvement, but surgery would be for breast conserving lumpectomy,  and sentinel node removal as a precaution, in 4 week's time. Completely curable. Once healed enough from surgery, will have 5 sessions of radiotherapy and that's it. Prescribed Tamoxifen as tumour is hormone receptive. 

2nd November day surgery, all went well.  During surgery, consultant found there was a 2nd tumour, (turned out to be 12mm), which was also removed with good clearance around both. 

Back to the Breast Centre 2 weeks later for lab results. Original tumour had grown to 30mm (which determined I would now need chemo and radiotherapy) and 2nd tumour was also IDC. Of more concern was of the 4 lymph nodes removed, all had cancer cells. Referred for CT scan to see if cancer spread further, but meantime, 2nd surgery required for auxiliary node clearance. 2nd surgery on 30th November, overnight stay for drainage. CT Scan was 3 days later. Back to Breast Centre 2 weeks after surgery for results.

Of the remaining 10 nodes removed, only 1 had cancer, so a total of 5 out of 14. CT Scan shows organs and soft tissue all clear but some undetermined 'fuzzies' on spine. Referred for bone scan. 

Bone scan on 6th January. Phone appointment with Breast Centre following week for results. Metastases on spine, pelvis and rib, so no longer curable but can be managed with further hormone and targeted therapies.  About to start targeted therapy tomorrow (Palbociclib) but also changed from Tamoxifen to Letrozole last week. Will have Zoledronic acid infusion in April, then 6-monthly thereafter to strengthen and protect my bones. I take comfort that when discussing these treatments, they're talking long term, not weeks or months.

You should have been allocated a breast cancer care nurse. Ring them to talk through with them any and all that concerns you. I was hesitant at first as I didn't want to bother them, but they keep reassuring me that it's what they're there for, that your psychological and mental well-being is just as important as you heal from your surgery, as your physical health.  They have been angels, We have two at the Highland Breast Centre who work together to provide the support needed by their patients and patients' families.

Wishing you all the best as you heal, and get your answers from resources like NHS, the breast clinic at your hospital or Macmillan Community nurses. Avoid 'Dr Google' at all costs.