I’ve recently been diagnosed with IDC, ER+, PR+, HER2 -, grade 2. The lump is 17mm and I’m under 40 years old. I had to have my biopsy results over the phone and I’m trying to take it all in but I also feel like I need to understand it all too. They’ve said about a trial that also uses oncotype dx testing to see if you’d need chemo or not. Has anyone had this? They’ve also said about having the treatment before they do the surgery, then they can see it working. Has anyone else had this? If I don’t do the trial I don’t think ill be able to have the oncotype testing. I guess I thought that they’d be removing the lump and then medication and treatment so I’d like to hear about peoples experiences please. If you didn’t have chemo, if you did, if you had treatment before surgery and for how long? Anyone do a trial? Sorry for so many questions! I’m trying to figure it all out and process everything as I have an appt coming up where I’ll need to decide what to do! I feel overwhelmed and so many emotions right now.
Hi Emci - first of all a big hug and welcome to this forum, though I’m sorry you find yourself here. Please don’t apologise for asking questions, that’s exactly what this forum is here for. You are spot on when you say there is a lot to take in, and lots of jargon and medical speak to try to get your hear round. You have done the best thing by coming onto a recognised and reputable site, and not googled.
I went through treatment about 4 years ago. I had similar diagnosis, and size lump, but I also had 3 nodes involved. As a result my treatment was - chemo first, followed by a mastectomy and reconstruction, then radiotherapy and now Tamoxifen. I’ll see if I can help with your questions.
I didn’t have this as I had nodes involved. I was given the option of having chemo or surgery first as they said the result would be the same whichever I went for. Lots of others also have chemo first, if you read other threads on here - though I do understand you wanting to just get rid of the lump. Yours are good questions and worth speaking to your team.
I’ll just start with this bit of info, and more than happy to chat further. I didn’t want to throw too much info at you in one go!
Don’t forget to look after yourself, especially your emotions and mental health. And don’t be afraid to talk about that on here if that helps - everyone will understand exactly how you are feeling.
I was diagnosed in October 2020. I had a mastectomy with reconstruction in November 2020. Following surgery I had the Oncotype DX test. It took a while for the results to come back, about 4 weeks, due to Covid delays. The oncologist took his time to really explain the results to me. I had 3 tumours and the score for each on the Oncotype was in the low teens. My cancer was also highly oestrogen positive (8/8). He said that the benefit chemo would give me would be less than 1% so chemo wouldn’t be recommended for me. Due to having 3 tumours he said at one time I would have had chemo but the aspect of chemo that would have been beneficial to me would be the effect it would have on my ovaries, that they would be likely to stop producing oestrogen. So instead I am having hormone therapy which involves switching off my ovaries and stopping any oestrogen attaching to my cells. I am 43 years old. The Oncotype findings stated with hormone therapy my cancer would have a 5% chance of recurrence within 10 years.
I hope this helps with your Oncotype query. You can always have the test and see what the results as it is your choice whether you act of the tests recommendations.
sending you many positive vibes as you go through this journey.
hello Emci I hope that you feel better.I just feel that I need to answer you because we have the same diagnoses more or less.I want to share with you my experience .I was diagnose IDC last sept.during mammograph.They found non aggressive type of cancer in my left breast.after all the delayed test and biopsy PET/CT did my 2 lumpectomy op.month after another due to unclear margin + 3 of my node were being remove 1 was affected.After all those stressful months of waiting I recovered and coping it well.I am now in my proceeding treatment waiting my mamaprint trial to determine if I need chemo or just endocrine therapy + radiotherapy.I wish you good luck and if you have question you can send me a private message anytime.I am sure you will also recieve alot of support here,or send private message to the nurses they are always there willing to help.
Hi, this is all new to me and never imagined I would be doing this.I was diagnosed with IDC stage 1 grade 3 in January.Had a wide local excision with lymph node removal on the 8th March.Was told I would need radiotherapy and tamoxifen.Had my results on 26th, thankfully hasn’t spread to lymph nodes but has been sent for the oncotype test.I had my head round the fact I wouldn’t need chemotherapy and now my head is all over the place.Am sick with worry.I know that if I need it it has to be done though.