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Neo adjuvent, trials, oncotype, so much to take in!

10 REPLIES 10
Rainbow21
Member

Re: Neo adjuvent, trials, oncotype, so much to take in!

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.

 

 

Claudia3609
Member

Re: Neo adjuvent, trials, oncotype, so much to take in!

Hi

I was diagnosed in June 2020 with grade 3 stage 2 IDC as I had no lymph node involvement. They decided to undertake an oncotype test to decide whether I needed chemo or not, the test came back in under 2 weeks which confirmed I would need chemotherapy treatment which I started on the 13th July. I had 6 sessions of chemo and had a complete radiological response meaning a less invasive surgery was required than what I was scheduled to have.

The oncotype test worked for me and was the right decision xx

Emci
Member

Re: Neo adjuvent, trials, oncotype, so much to take in!

Thanks Bellel,

I still feel so confused. How long was it from your diagnosis to starting any treatment? I’m glad to hear you’re coping well now.xx

Bellel
Member

Re: Neo adjuvent, trials, oncotype, so much to take in!

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.

Tegards

Bellel

Bellel
Member

Re: Neo adjuvent, trials, oncotype, so much to take in!

 
Emci
Member

Re: Neo adjuvent, trials, oncotype, so much to take in!

Thank you for your replies. My mind is still trying to take everything in and process it. Xx

Hope213
Member

Re: Neo adjuvent, trials, oncotype, so much to take in!

Hello,

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.

xxx

Evie-S
Community Champion

Re: Neo adjuvent, trials, oncotype, so much to take in!

Emci - thanks for your reply. People tend to fall into 2 camps, some (like me) want to read and find out as much as possible and other prefer not to know, just to go with it. Both are good and it’s important that you do what makes you comfortable. I felt it was my body and I wanted to know what was going on, especially when presented with a choice.

Others may come along on this thread, but you might also want to do a search across the whole forum to see previous chats about these topics. In case you haven’t found it, the search is just under the nurse’s number, and click the option to search the whole forum.

My very best wishes to you as you go forward, and I’m happy to chat or answer more questions as and when you think of them. For example if you have specific questions about having chemo first.

Evie xx

Emci
Member

Re: Neo adjuvent, trials, oncotype, so much to take in!

Thanks Evie.

I think I’m going to have to write down some questions for my appointment. I just really want to start doing something but I’ve been given this choice to make and I don’t know what to do for the best. Thank you for the link about oncotype dx. I’d also like to read threads about peoples experiences with neo adjuvant therapy and maybe from people who didn’t have chemo because of their scores or recommendations as well as those who did so I have a balanced viewpoint. I feel like I’m spending so much time reading and researching! They have also mentioned a trial. I just want to make the right decision!

 

Evie-S
Community Champion

Re: Neo adjuvent, trials, oncotype, so much to take in!

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.

The oncotype test involves a sample being sent off to be tested to see if you would benefit from having chemo - here is the BCN link which tells you more https://breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/oncotyp...

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.

Very best wishes to you, Evie xx

Emci
Member

Neo adjuvent, trials, oncotype, so much to take in!

Hi everyone,

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. 

Thanks in advance.