Looking for people with DCIS
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25 posts since
22 Feb 2020
Hi all,
I have been seen in the symptomatic breast clinic since finding a lump in my right breast in February.
A 2 week referral was made. I attended the clinic and had exam, mammogram, ultrasound. Mammogram found 7 cysts in my right breast and 2-3 cysts in the left breast plus a hard area. A fine needle aspiration was taken. This came back as benign fibroadenoma but I was called back in for a stereotactic mammogram biopsy as they had spotted micro calcifications on the mammogram at their MDT.
I had the procedure in a couple of weeks and 10 tissue samples were taken. Lockdown then happened and I received the news over the phone that I needed a vacuum biopsy as the cells were of uncertain malignant potential, B3 lesion, FEA – flat epilethil atypia. I was told I wouldn’t be seen until July for this but not to worry.
the consultant rang me last week to ask if I understood what was happening as she was writing a letter to my gp which I would get a copy of. She said that FEA can indicate a more sinister process nearby and that they were looking for ductal carcinoma in situ and something about low, medium or high grades.
im very confused and just wondered if any of you can relate to my story. I have been on Dr Google and it seems that DCIS May be a type of cancer and it also seems that you require further treatments including surgery, radiation and medication?
the letter says they are sending me to a family history clinic as I have a cousin who had breast cancer age 28 and an aunt at age 44. I am 39, single mum to two girls.
i haven’t spoken to my family the whole time as didn’t want to worry them especially now with the exceptionally long wait for answers. So it’s nice to get off my chest!
thabk you
lou
150 posts since
24 Mar 2018
Hi there…….what a confusing time for you. I was diagnosed with DCIS two years ago. I was recalled following my mammogram and after further tests and biopsies was told I had high grade DCIS.
As I understand it there are three grades…..low, intermediate and high. Low grade is very slow growing and quite often a wait and see approach is taken. With my high grade I had a lumpectomy and then 15 sessions of radiotherapy.
What is important to remember with DCIS is that it’s totally contained in the milk duct, is non invasive, is not life threatening and is totally treatable. I never lost sight of these facts during my treatment and trusted my medical team absolutely. I’m now cured and am on a patient led follow up programme which means that they don’t send for me but they are only at the end of the phone if I have the slightest worry. I also have the reassurance of an annual mammogramm for five years. I’ve just had my second all clear result.
I hope this helps and wish you well for the future………Irene x
25 posts since
22 Feb 2020
Hello Irene,
thank you so much for your response.
im so pleased you are now cured.
can I ask you a couple of questions please? I was wondering how you got a diagnosis, did you also have microcalcifications and what was your testing process?
please don’t worry about answering if I am being intrusive.
How was the lumpectomy and radiotherapy. I work full time with no sick pay and I am a single mum with two children. My biggest fear is not being able to work and pay the bills, put food on the table etc xx
150 posts since
24 Mar 2018
Hi there….
When I was recalled after my mammogram (Nov 2017) I had the core biopsises done on the same day. My mammogram showed microcalcifications that needed checking out. They told me at the time that very often they are harmless and not all need any treatment. A week later I had an appointment for the results where they told me that they showed high grade DCIS and that I would need surgery and radiotherapy.
I had the lumpectomy at the beginning of January 2018. I was in and out of hospital in the day and had no ill effects. Just felt a bit sore and bruised but felt perfectly ok.
I had 15 daily sessions of radiotherapy (Monday to Friday) which started in the February through to March. I felt absolutely fine throughout the whole process. Although my husband came with me I drove the 40 mile round trip each day and had no ill effect at all from it. I’d prepared my skin well with a good moisturiser and had no skin irritation at all.The radiotherapy sessions are really quick and, if you need it, the staff are brilliant and flexible to give you appointments to fit in with your day.
I’m retired now but I feel I could have worked through it but I did office work so nothing too heavy.
I hope you find this helpful. You sound like are a really organised person and are right to be prepared for what might lie ahead.
Wishing you lots of luck for the future. Please let me know how you get on and if you’ve anything else you want to ask I’m right here for you ……….Irene xx
25 posts since
22 Feb 2020
Thank you so much Irene,
Sounds like I could still work through most of it which is fantastic news. That’s really helped massively!
The consultants letter says they are looking to book me in for Vacuum biopsy in July which seems an eternity away but I will update here when I have an appointment etc
you have really helped put my mind at ease thank you so mich
you take care of yourself xxx
150 posts since
24 Mar 2018
Just glad to be of help…. with 2 girls you will be kept busy and the time will soon pass. Happy to answer anything else you might think of if I can……Irene x
25 posts since
22 Feb 2020
Ah thank you Irene xxx
25 posts since
22 Feb 2020
Just wanted to add a follow on as I googled so much and found so many threads that just ended with no results
I had to attend an appointment to receive my results (something that concerns people)
I had the first appointment of the day (something that concerns people)
I had a Macmillan nurse (something that concerns people)
My results were good, no cancer.
5 years open access to the breast care centre and annual mammograms
I can get on with life now
For those whose results were not favourable i would like to wish you all the best for your treatment and thank everyone who has ever replied and helped
Lou
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