Hi m1 I had a score of 23, was told it gave me a 4-6 percent chance of non reoccurrence if I had chemo. I decided not to go down that road for a few reasons. Firstly in my mind people who decided to have chemo with my score , potentially 96 percent were over treated . Secondly chemo comes with its own risks which for me seemed to extreme for such a low percentage. Everybody is different and I have to live with my decision but for me I still think it was right for me. I was er and pr positive her2 negative. No node involvement . Had lumpectomy and 15 sessions of radiotherapy with 5 booster sessions, tamoxifen for 5-10 years as I am pre menapausal .i was told that anything between 25 and 30 chemo would be recommended but this seems to vary slightly in different areas. I wish you lots of luck with your journey and whatever you decide. Nicky

Hi Nicky 

I had an awful day walked out of the oncologist office with no clear data  and minimal questions answered. Myself and my daughter in tears 
they are pushing me to have chemo but just being over the threshold and in a grey area of 26-30 and overv50 they expect you to accept THEIR decision. I am off to see a private oncologist tomorrow who has more time to amswer my questions . Thank you for your reply and enjoy your future with lots of smiles and happiness .

Hi M1,

 I am so sorry to hear about your visit to the oncologist and how little information you came away with. It can be helpful to draw up a list of questions before you see the private oncologist tomorrow.I do hope that this visit goes better than your last one did.

Please keep us posted. We are always here for you.

Kind regards,

Jolamine xx

Hi m1

I hope you don't mind me jumping in like this but when i read your post i really related to your experience with the oncologist.

My circumstances differ slightly, I am 56,  I had 2 tumours removed in oct 19, both ER & Pr + HER2 neg, but 1 postive node, sentinel and axillary nodes were clear. my DX score was 15, so low and chemo was not indicated. I just had radiotherapy. Due to the nature of interactions with the oncologist I have had lots of moments of doubt since making the decision due to the  limited discussion. I am not facing the same again with the endocrine treatment but determined this time to be more informed and have a say in how things move forward. 

The onocologist  is proving very difficult to engage and often gives only one word responses to questions and leaves me feeling that i have no right to ask questions or take a view about my treatment. So much so that  today i also made steps to see some one privately to try and get an better  understanding of treatment options hopefully make the right decision.

I am sorry you are having a similar experience and that it has been necessary to take this step also .  I am very interested to hear and share experiences and will look out for you feedback as  I don't have an appointment date yet, but will do by tomorrow.

All the very best and i hope it goes well 

xc

Hi m1, my Oncotype score was high at 51 and the benefit of chemo for me was 15%. I too was scared of having chemo but my surgeon said that it was a 'no brainer' so I had 18 weeks of chemo. The nurses couldn't have been nicer, it affects everyone differently, the side effects I had was being really tired all the time but I also got shingles half way through and had to have a Hickman line put in as they couldn't find a vein after the first chemo.The nurses also supplied me with anti sickness tablets but I didn't need them. Hope that helps you a little.

Hi  Chrijoh

thank you so much for your reply, I went to see an oncologist yesterday who made me feel better but told me what I didn’t want to hear but that is the reality of this disease I suppose. 

So you didn’t have any other side effects apart from tiredness ? I am really sorry you contracted shingles as I know how painful this can be having experienced this myself .how are you feeling now I do hope your feeling better and got through it . 

Hi Croy19 

i am sorry you are having the same experience, it’s difficult but the money you pay to sit and talk to a private oncologist is worth every penny , no question was left , he was kind, caring and went through everything in detail with me . He gave me reassurance that I would be ok . If anything else it gives you peace of mind , as I said first consultation pricey but worth it and if you want to return it’s half the price for the second consultation. 

Hi Nicky 

thank you I have researched in depth and the Taylor x study gives you what you need to know . Chemo is not usually offered below a score of 25 however I know that some trusts differ. I feel better seeing a private oncologist who explained what everything meant in detail therefore helping me make an informed choice. 

Thank you for replying to me . 

Hi m1, chemo affects everyone different, I used to have a nap in the afternoon after I had been having chemo for a few weeks. A tip the nurses told me that if you had morning sickness when pregnant you are more likely to feel sick when having chemo. I also got a bad cold and cough but was given antibiotics. I have just had my first mammogram after surgery in July last year so one year gone, but am having pain in my arms through taking Letrozole, I think. Am going to speak to the nurses about it soon. Did the Oncologist say you had to have chemo? If so when do you start?

Hi

yes I have been informed def need chemo but I am transferring to another hospital after a bad experience in my local hospital. How many rounds of  chemo have you had?? sorry your feeling rubbish taking your meds there is always something isn't there .