Well, I have not got a faulty gene, which is excellent news! I was dreading the telephone calls I was going to have to make. Anyway, I am not having radiotherapy - my oconologist did not recommend it and neither did the Research team who checked my tumour for slow-growingness. But, I am taking anastrozole, calcium and vitamin D tablets and will have annual mammograms.
I have just spotted this post. I too am not having radiotherapy as I am waiting for blood test results for a possible faulty gene. My oncologist was going to put me on a trial for over 60s with small tumours (9mm) which hadn't spread and was not in the lymph nodes - me! This trial would have entailed no radiotherapy, annual mammograms for 10 years and hormone therapy. However, when I went back to see her to discuss things she said she had ugently alerted the family history people as my father's mother, his sister and her daughter all had breast cancer, and there might be a link. At no time did I see a counsellor and in fact when I first completed a family history, assumed it was for their research! So, I am now awaiting blood test results,due in 2/3 weeks. In the meantime I am on hormone therapy and calcium and vitamin D supplements. The oncologist said not to worry about not having radiotherapy as it was such a 'tiny' tumour! I have a daughter, sister, three nieces and a grand-daughter, so hope all is well...
I too was diagnosed with high grade DCIS in May followed by WLE. I went for my follow up appointment with the surgeon on 30th May. He mentioned genetic testing but he said that it was up to me to decide whether I want it or not and even if I did, I would meet with a genetic counseller first. I am still thinking about it but in the meantime I have been booked to start radio on 20th June for 5 weeks. Since my margins were clear but tight (0.2m) I need to take Tamoxifen. The oncologist explained to me the side effects but it is not like I have a choice. Ask to speak to a counseller first before they actually do the testing so that you are fully aware of what the outcome could be and how it will impact you.
I wish well for all those who are on this journey with us.
sorry you haven't had any replies to your questions as yet, but hopefully someone will now see your post. In the meantime I have put for you below a couple of BCC's publications you might find helpful.
I am six weeks post op. Had a WLE for high grade DCIS with clear margins. I had my oncologist appointment yesterday and fully anticipated I would walk out with my radiotherapy start date. Instead the oncologist wants to hold off on rt and fast track refer me for genetic testing. My dad had breast cancer 15 years ago resulting in right mastectomy and the removal of 19 nodes. Back then it was even rarer than now. My nan, his mum also had BC but not until she was in her 70's. Both my dads brother and father had prostate cancer.
Has anyone else had genetic testing half way through own treatment for BC? Has anyone else got a father who's had BC?