Hi I was diagnosed Nov 2025 with her2 negative. Er/Pr both 8/8 positive. I had 2 cancerous lymph nodes they removed 3 when lumpectomy was done in December 25. I saw oncologist in Jan 2026 he wanted me to do 8 rounds of chemo over 16 weeks plus 19 radiation including 4 boosts. Predict said 2.6% to 4% benefit with chemo. I really did not want to do chemo. He was advising it but was up to me. He didn’t mention Oncotype test when I asked about it he said I didn’t qualify or meet the criteria for NHSfunding. My friend had told me about Oncotype test or I would never have known. I wasn’t brave enough to refuse chemo so I asked doctor to request it for me privately. He was happy to do that. All arrangements made by him. My score was only 6. So delighted and so was doc. No benefit to getting chemo and proceeded with radiation. The cost was substantial £3000.00 but I paid interest free £86 for 3 years. Well worth it. I would have had chemo if score had been high. I’m so lucky. On letrozole now no problems. Surgery was much easier than I thought. So onwards n upwards and fingers crossed for the future. Wishing you all the best with your decision xx
Thanks for reply, yes predict says my chemo benefit would be 3-5% .i am not in a financial position to fund the test so thats a no no for me.I am 4 weeks post masectomy , still sore awaiting Oncology appointment and no clue when radiotherapy will be.Good luck to you too
Oh I’m sorry I just thought I would let you know because I was unaware about the test completely. I am wishing you all the luck in the world whatever your decision. xxx
dont be silly, you dont need to apologise for anything.Your post was helpful.
Hi there,
I would think very carefully about turning down any recommended treatment, and definitely listen to the advice of your oncologist - they are the experts.
I am still under treatment since March last year and have opted for every treatment recommended to me because I would rather do everything I can to beat the cancer, than risk a recurrence or the treatment not working. I realise it is extremely tough - I’ve had many sessions of chemotherapy over many months. What you need to ask yourself is, if your cancer returns will you regret your decision?
Hope this helps.
B x
I think we are all adults and know our own minds.My post was asking who had declined any treatments and whether they were still happy with their decision.To answer your question , no, your reply didnt help.
Hi there,
I’m very sorry that wasn’t helpful. I put a lot of faith in my medical team and their expertise, but totally understand that people have different views and it’s very difficult to make decisions, especially when there are different treatment options and many have terrible side effects. Hopefully you will get other advice that is more helpful.
Im sorry to hear your cancer has returned. I can understand how u must be feeling. There are no guarantees..I was diagnosed in 2017 with stage 2 lobular bc. Had mastectomy, radiotherapy, letrozole and 7 years later 2024 it was back. In various bones, hips. Ribs, spine and skull. Stage 4. No cure but treatable. So im asking myself if it was all a waste of time 9 years ago? Do I wish I hadn’t taken it? But I don’t know the answers… Im feeling well. Ive got nerve damage in my spine so I’ve got a numb weak leg and now walking with a stick. Thats a recent adjustment. Ive changed my diet and supplementing that homeopathically. Trying to stay positive. We all just do what we think is best at the time. I wish u well. Sandra xx
Hi I was diagnosed with triple negative breast cancer June 25. The plan was chemo, lumpectomy then radiotherapy. I refused chemo and asked what else could be done. They said lumpectomy then radiotherapy. I asked why that wasn’t first option and was told the stats showed that if I went down the chemo route I had 86% chance of surviving 10 years if it worked. If I went for lumpectomy then radiotherapy and it worked i had 77% chance of surviving 10 years. I just wanted the lump out asap so I had lumpectomy July 25, luckily no lymph node involvement, radiotherapy September 25. Was it the right decision? I don’t know but it was right for me. I’m doing good apart from the horrible late effects of radiotherapy, boob like a block of wood, lymphoedema under my arm. Had ultrasound 2 months ago and all good apart from the scar tissue etc.
I am personally so glad that was my choice but everyone has to do what’s right for them. Good luck
Thanks for reply, i am glad youare well
I had the oncotype test done as I was private, they did say if it was nhs mine wouldn’t have been sent off. Wish it hadn’t tbh as it came back at 29 chemo recommended. I discussed it at length with my oncologist and decided against having chemo due to pre existing severe anxiety and decided for me that I would take anastrazole and ribociclib (targeted therapy drug) to bring the percentage of recurrence down. I had clear margins though and no lymph node involvement. Think mine made a difference of 5% . I have had my moments of have I made the right decision but wrote a list to remind me of all the information I have at the time and feel that was the best decision for me. Just hope I can tolerate the side effects from the tablets
Welcome to the forum @ye1967 . Hoping the Anastrozole and Ribociclib treat you kindly .
Thanks for reply , can i ask the reason they said you wouldnt have got the oncocyte test on nhs?. you will tolerate the side effects i am sure and if you dont there are others to try.I wish you well
They said due to size they have a cutoff so i would have been told to just have radio and anastrazole not sure about the ribociclib she didn’t say
i think its really bad that all women dont get the test!have you had your radiotherapy now?
Oncotype is only relevant if you are ER+ only. It is used to decide if you would benefit from chemo. If you are HER2+ you will always be offered chemo because it’s a more high risk form of BC so you will always benefit from it.
Yes had 5 days, finished last Tuesday
How inspiring you are! Hope you are enjoying Spain. May I ask how far along you are with your Phesgo injections and how is it going?
Went to Spain for 5 days , home now was rather tired .but was great break . I am having my 5thPhesgo injection tomorrow I am also taking Anastrozole daily.
I have an echo cardiogram every three months due to having Phesgo .Good luck to all , we need a bit of that too .
Sorry I didn’t answer your question .
Phesgo ok few side effects but manageable .