Hi all. My background is:
Oestrogen positive breast cancer in October 2010 aged 38. I had WLE, chemo, radio, axillary clearance and herceptin. 5 years of tamoxifen. I was an active member on this forum, I was known as Truddles then later, Trudy2010.
Then in January 2022, I had DCIS in the other breast, aged 49, picked up on my FINAL annual mammogram. I had WLE and radio.
Early 2023 my sister in law had bilateral mastectomy for breast cancer, aged 50. Obviously not blood related to me but her mother died from breast cancer in 2020.
October 2023 my sister had breast cancer aged 49. She had nipple sparing mastectomy and implant reconstruction. No other treatment just tamoxifen.
Roll on to September 2025, after several tests for genetics, I have been identified as having ATM gene, and I am shortly to have an appointment to discuss this with a genetics hospital in Birmingham, west Midlands.
To put ‘ icing on the cake’ , in November 2025 my sister had a wedge biopsy of a new, unhealing wound on the nipple of her mastectomy side. 2 days ago we had the results it’s positive for Paget’s disease with underlying DCIS. Plans need to be finalised but she’s looking at surgery in January 2026.
I am in a whirlwind, there seems to be no end to this crazy journey.
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Hi @trudy2010,
I’m so sorry that you haven’t had any responses to your post yet, I hope someone will share their experience with you soon.
You and your family have been through so much, I’m so sorry to hear this. It must feel really overwhelming waiting on your own appointments and results, as well as coming to terms with your sister’s diagnosis and her upcoming surgery.
If you ever need support, want to ask any questions, or just need someone to talk things through with, you can reach our nurses on 0808 800 6000, and the forum is here for you any time you need it, day or night.
You might also find it helpful to look into our Someone Like Me | Breast Cancer Now service, where we’ll match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support or simply listen.
We are sending you, your sister, and your sister-in-law all all our very best,
Alice 
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Hi Trudy, I’m sorry your family are going through this.
I have a family history of BC and I’ve had it twice, 2009 & 2025. I had genetic testing after the first time, but came back clear. I’ve just had it again, as there are more genes that can be tested, and I had a call yesterday to say I have the ATM gene. I’ve been offered an appointment to discuss having my good boob removed, the thought of which is causing me anxiety.
I’ve got to let me daughters know, so they can be tested, if they wish to do so. The geneticist suggested I tell my mum, but she’s 85, and I think it would upset her too much to think she may have passed the gene to me.
I’ve said this so many times in the last couple of years - Cancer! The gift that keeps on giving 
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Hi
I hope you are doing ok and your sister has recovered from her surgery.
I’m sorry you haven’t had many replies. I wanted to signpost you to BrcaChat Navigating Gene Mutations together. Also BrcaKent which is local to Kent but has fabulous resources available to everyone.
I am also lucky enough to live not too far away from this great charity Penny Brohn who provide loads of support online and in person, they rely on donations to support their work. You can get help with nutrition, exercise, treatment support programme, mindful activities and lots more.
Take care
Hi @caroline_w_uk thanks for sharing your own genetics journey. I had genetics testing as I had two primary invasive carcinoma at the same time, so classed at two relatives for my children. For me the test was so clear but I was warned that if new genes appear in the future I could still have a genetic source.
I can only imagine it is challenging to even think about having your good boob removed. I have a bilateral lumpectomy and asked why not a mastectomy and was told the outcome is the same. Although had my genetics come back positive that would have been risk reducing surgery to reduce the risk of further cancer. I had to wait 10 months after my surgery for the genetics results. It takes a lot to get your head around.
I understand the stress this could cause your mum, I was told to tell my Dad’s sister who has two daughters and granddaughters to get tested she was mid 70s but she wasn’t interested even when I said it could help her daughters and granddaughter’s.
Cancer is really the gift that keeps on giving. I would highly recommend Penny Brohn charity that I have linked above for support.
Take care