I had IDC grade 1 stage 1 tubular 10 mm or less . I was low grade enough to be offered and put on the SMALL trial . I was randomised to have my cancer removed under local anaesthetic with radiological guidance ( VAE) with no lymph nodes biopsies . This was unsuccessful and I had the remaining 6 mm of tumour removed under general anaesthetic as WLE with negative SNB. My Surgeon prescribed Tamoxifen but said that as I was very low risk etc. it would be reasonable for me to stop if I didn’t get on with it. It turned out that my medical history made me unsuitable for Tamoxifen so the Oncologist put me on Anastrozole and went through my Predict score which refers to mortality rather than recurrence which was 0.8 % at 5 years to 1.3 at 15 years - taking Anastrozole only improved it by the tiniest margin and in Predict 3 it’s even less. I decided to give it a go anyway but abandoned it after just less than 5 months due to side effects. There are people who do take the drugs and don’t have side effects - I wasn’t one of them. I did some reading around tubular cancer and found that it’s less likely than most others to metastasize so this helped me to decide.along with the fact that my surgeon had said it would be reasonable to stop . Your Oncologists’ take it or leave it sounds similar - policy/ guidelines probably dictates that he has to offer it to you but he doesn’t sound exactly as though he’s urging you to have it which seems unusual for an Oncologist.
I work with someone who had lumpectomy and radiation but wasn’t offered hormone therapy for some reason.
You haven’t done nothing - you’ve had the surgery and you went on the trial which has given you more Information than many people get and that information has been made available to better inform yourself and your team about your case and should theoretically help with this decision - but sometimes the more Information you have the more confusing it becomes. As oncotype often isn’t done for DCIS I’m wondering how they can be so sure that’s it’s so rare to get a score of zero. Also you talk about your internet ramblings so be careful where you are getting your information from.
I’m thinking that you might benefit from talking it through with a Nurse on the helpline here - sometimes a professional not directly involved in your care can be more helpful . Otherwise if you have a good relationship with your BCN you could contact them - when I was having doubts about having stopped I got a clinic appointment with a BCN and used her as a sounding board . If you have a Research Nurse you could perhaps speak to them as well. As your result came through after you were prescribed Tamoxifen I think they probably should be scheduling an appointment with you in light of your result otherwise what was the point of having the Oncotype test in the first place so I think it’s important that you do speak to a relevant health care professional about it .
I would say check local support groups but at the 2 I go to side effects of hormone therapy is often the major topic and sometimes I feel like a fraud as I’m not on it anymore. One lady did say she wasn’t having any side effects at all on Tamoxifen though. The more bitter complaints all seemed to be related to Letrozole or Anastrozole.
When you are low grade can end up suffering with imposter syndrome and feeling as though you never really had cancer at all so don’t be tempted to take the Tamoxifen just to prove to yourself and others that you did. Xx