I've been on this forum, lurking and then commenting on a few threads for two months. It has taken that long to get to the bottom of my diagnosis which I finally got yesterday and it feels such a relief to have a diagnosis. Grade 1 Tubular Carcinoma. ER+ with Grade 2 DCIS
To those people going through the waiting time, I think that is genuinely so much harder when it is the great unknown.
A summary of my case:
I got a recall letter on Christmas Eve after a screening mammogram. Went to an assessment clinic on 5 January and had a mammogram first where they decided the bit I was recalled on looked fine (upper inner quadrant) but they spotted a different area (lower inner quadrant) that they didn't like the look of. After my recall letter I had a good look at myself in the mirror and discovered an area of puckering and indentation on that lower part of my breast, so that already had me worried there was something going on. No lump could be felt but the ultrasound done at the clinic was highly suspicious and showed a spiculated mass, so they biopsied it and told me to prepare for it being cancer.
Fast forward to results appt on 15 Jan and I was told it 'was complicated' as biopsy showed some atypia and other signs of cancer but not conclusive. Surgeon is convinced it needs to come out anyway and thinks it is cancer so books me in for sugergy anyway on 16 Feb and tells me I need more tests.
21 Jan I have an MRI
28 Jan - I go back to have the area re-biopsied but am told when I arrive that the MRI has now shown the other area in the upper part of the breast looks a worry afterall and they'd like to biopsy that too. Three hours later, I have had two vaccumm assisted biopsies - one in the mammogram machine while lying down and one with ultrasound. A pretty intense day!
3 Feb - results appt. Both biopsies came back showing no cancer or DCIS. What?! MDT is not convinced and say the bottom bit definitely needs to come out on 16 Feb and top bit needs re-biopsing.
11 Feb - back I go again for another biopsy - bigger vaccum assisted needle again this time and in the mammogram machine lying down again.
Pathology is rushed as urgent as my surgery is scheduled for the 16th and if second area is not good then surgery will need to be rescheduled for a mastectomy instead.
Monday 15 Feb - get the good news that upper area is benign and definitely only a radial scar and sclerosing adenosis and will be left.
16 Feb - have a wire guided wide local excision biopsy in surgery.
Yesterday (26 Feb) - third results meeting where I finally got the results after a difficult two months of being told I have cancer but not being able to prove it. There was another radial scar in the bit removed in surgery and in amonst it all, there was a tiny 3mm Grade 1 Tubular Carcinoma, next to a 5mm Grade 2 DCIS. All removed with really clear margins and because Tubular Carcinoma has a very low risk of spreading and because mine was so small they don't even need to check my nodes which is good news as no more surgery.
Only got results yesterday (Friday) but already have an appt with the oncologist for Monday. Will be discussion radiotherapy which I am a bit anxious about as the location of the cancer in the left inner quadrant is right over my heart and I worry about the impact of that. They would also normally recommend Tamoxifen but because I have had a DVT in the past (after a long haul flight from NZ) it is probably too risky. Also had some bloods taken yesterday to check if I am pre or post meopausal. I had a hysterectomy when I was 39 so hard to know where I am on that.
Interested to know if anyone else has had Tubular Breast Cancer and if it came back at any point down the line? xx
