Oncotype

YE1967 24 days ago

4 replies
34 subscribers
78 views

Hi I am struggling with making decisions but of background, I am 59 and been diagnosed with breast cancer. I have had surgery and got clear margins with no lymph node involvement. Consultant thoug HR radio and hormone blockers but because it is private they sent it off to America for a Oncotype score. If nhs apparently wouldn’t have been sent. It’s grade 2, 2cm hr/pr positive and her2 negative. Score came back at 29 cut off 25. So chemo recommended. Here’s the dilemma, I suffer with severe anxiety depression and can’t sleep or eat with anxiety, after surgery I ended up in an and e with dehydration and exhaustion. Has anyone decided not to do chemo, the percentages are not massive and it could still come back but worried if I don’t try am I going to regret it but then effects on mental health need to be taken into consideration. Please help me make decision it’s all I can think about

latchbrook 24 days ago

Hi YE1967

I’m Anne, one of the Community Champions here on the Online Community, and I know how difficult it can feel making treatment decisions.

The online community is divided into different support groups so I'm going to recommend that you join the breast cancer group as you'll then connect directly with others who have the same type of cancer as you and will be able to share their experiences of making treatment decisions.

To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

It would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

awesome1 19 days ago

Hello, it doesnt look like anyone replied to your post! i wonder if you have now made a decision? clear margins and no lymph node involvement, then no i would not.Your are right in saying the percentages are not massive.For me, i have a bigger lump and having mascectomy soon.I do have several lymph node involvement so the NHS wont do oncotype testing, so i wont know what my score would be.It could be 0 or 50. Chemotherapy for me too would be the very worst thing ever. Is it the hospital visits and IV treatments that you fear or the side effects and potential risks?i guess i would look at the percentage difference if your score was 26, 27,28 and see what it increases by.There are as you mentioned other drugs and radiotherapy too.Only you know what you can do and i guess you have to have the conversation with yourself how would you feel if it came back.But also you know i am sure that even with the horrid chemo it can . x

YE1967 19 days ago in reply to awesome1

Hi thank you for replying. I have just been to see consultant again today who has clarified things more. So basically got 17% recurrance rate of it coming back at 10 years with taking just antrazapole and radio then if I take another drug ribiclclib brings it down to 10% chance of recurrence. Having 6 months of chemo potential benefit of 5%. She actually said for me I think for the little difference it makes she probably wouldn’t have it and at least I am bringing the percentage down with having the other drug. Got to make decision in next few days. Am thinking of radio and with her saying shall I take the decision off of you I feel a bit better about it. She said look at it they the side effects and risks in having chemo for the sake of 5 people

awesome1 19 days ago in reply to YE1967

17% chance is quite high, thank goodness you are hormone positive and have the option of the hormone blockers and CDK'S .Yes 5% benefit isnt worth it is it.A bit like half of a biscuit I am glad that things are clearer for you now.Also, science and research is developing all the time.Roll on the vaccine