First post so please bear with me. I was diagnosed with breast cancer in July, I’ve had the tumor removed and was told that it was likely that the next treatment would be radiotherapy and then drugs.
I had an appointment on Thursday with the consultant and my onoctype score has come back at 46 and they are leaving the decision to have Chemo or not with me. They are happy that all the cancer was removed and nothing was found in the lymph nodes. My partner doesn’t want me to go through with the chemo, I’m leaning to that decision too. But I have this overwhelming feeling of guilt for not having it as what it there was a reoccurrence I’d hate it that I hadn’t done everything to prevent it.
I know this is a very personal decision, but I was wondering if anyone else had struggled with the decision?
I would take absolutely no chances with breast cancer. 46 is a high score. I’d be asking for full mastectomy and chemo. I say this as someone who had a grade 3 tumour with no node involvement but oncotype score of 43 (I think).
It spread to my bones within 2 years.
Percy pig 
sorry you find yourself here, others will pop on and share with you, also there is the someone like me option and also ask the nurse or ring the number on here too and speak to a nurse the decision will be yours what you decide to do, It’s difficult decision but be at peace with what ever decision you make 
Shi xx
Percy, they always leave it up to you but it reads like they haven’t encouraged you to go one way or the other. Which is wrong. A 46 is a very high oncotype score. If you were to avoid chemo you would be taking a huge risk and when cancer comes back with those kind of oncotype scores they don’t normally come back in the breast. They come back as a distant recurrence and you’re at stage 4. Without a doubt you need to go through chemo period. The issue with breast cancer is that it does spread through the nodes, however, it also can spread through the bloodstream, very early usually before detection, which means there are cancer cells free floating looking for an organ to invade. I know it’s scary to read that and I’m so sorry to have to put it bluntly but chemo is an excellent medication to prevent this from happening. And with your score you are apt to respond very well to it. My oncotype score was a 23 and because I was under 50, they recommended chemo with that. My partner, like your’s, didn’t want me to go through it. I did, however, because I understand the nature of breast cancer and knew I was doing chemo not for my present health but for my future. I went through four sessions, three weeks apart, and it wasn’t a good time but it was doable. I was able to keep up with everything although I did need some help sometimes. But I made a complete recovery afterwards and have the comfort of knowing I did everything possible to make sure that “you have breast cancer” was never going to be said to me again. Good luck making your decision and of course it is entirely up to you but the rewards in your case for chemo far outweigh the risks.
Welcome to the forum .I’m wondering whether you have typed your onco type score correctly as usually like the other ladies have said they would be recommending chemo with that score .It’s a very personal decision and we do not know your own personal circumstances so there may be other factors influencing your decision . Do you have a breast care nurse , if so maybe you could ask for an appointment with her or your Consultant to talk about the pros and cons a little bit more?
Hello there @percypig1
There’s some missing information here which makes it hard to give a balanced reply - but as you say this is your first post so maybe that’s why. On the other hand maybe you haven’t really absorbed the full picture.
I think you need to go back to your team to get some clarification - firstly as Jill says check that you have typed your oncotype score correctly. If you have then check with your team that you have heard it correctly , is it really 46 - because as pointed out by others that’s really high.
Did they just say it was up to you or did they say " it’s up to you but we would recommend… "
Second did they do a Predict score for you ? Sorry if this is scary or if you already know this but basically they work out what your chances of survival are after 5 years if you have every therapy that is offered - then they can rescore it for you without chemo .
Nobody can make you have any kind of treatment you don’t want so ultimately the choice is yours - in BC we get to make a lot of scary decisions for ourselves but you need to make sure that you have all the right information. By all means involve your partner in your decision but it’s your life at the end of the day not theirs.
Reading your post it sounds as though chemo wasn’t part of the initial plan so ask yourself why it has been brought up now.
You might find that talking to the Nurses on the helpline is easier than writing it in a post - they're open tomorrow morning . Give them every bit of information you have about your age , medical history and your BC as well as what you have written here .They can guide you and help you to work out what else you need to know / ask to make this decision.
Take care
Joanne x
Hi again @percypig1
For some reason the last part of my post didn’t go. I was going to suggest you ring the helpline in the morning as I think you might find it easier to talk this through rather than write . The Nurses will make sure to get all relevant information from you and guide you re anything else you need to know.
Take care
Joanne. X
Hi.
I was in a similar situation to you. Not necessarily the level grade of cancer, but the tumour removed and lymphodes clear.
My oncologist said i should have the chemo because of my age and a family of breast cancer.
I felt very pressured into having it, based on tĥese what I now know were assumptions from the Oncologist.
My advice would be to think very carefully about chemo, because to be blunt, it is a cocktail of poisons and from own personal experience, the effects don’t necessarily go away afterwards.
Make sure you are fully aware of what your options are if you do/don’t have it, even if that means you go away and take some serious time, getting all the information and support you need.
If your life isn’t in imminent danger, i would use this time to speak to others that have actually had it and other medical advice first.
In my case, it wasn’t a matter of not having the chemo full stop, it was a matter of i wasn’t prepared physically and mentally to have it straight away and not properly informed before of the consequences.
Make 100% sure you are.
Good luck. 
Hi
Hugs, this is such a common fear, and concern so please reach out on here, to your team and nurses as much as you need
Firstly take some time to absorb what has been said and if you weren’t given printed copies of your test outcome ask for it, next ask for a predictor score with and without chemotherapy
When you get this sort of outcome emotions run high so try and remain calm
It truly is a personal choice but the way I see it is if you want the potential to live the life you want throw everything at this shitty disease, the chemotherapy is hard, you will cope and you will get through it because your team will be awesome and so will your personal support network, take a day at a time
I would urge you to talk to your team and take your partner so they hear the messages and can ask questions
Being properly informed helps with choice, its your choice not theirs, thats hard but you must do what you want and you need to be here for many, many years
Good luck and hugs
Hi Percypig,
I’m so sorry you find youself with this predicament, and as others have suggested I would really recomend speaking to the professionals first so that you can make an informed decision about whether to have chemo or not.
I like you have been recently diagnosed with breast cancer (hormone receptive)and advised after surgery(which was 10 days ago) I would have radiotherapy then hormone therapy no chemo needed however I am still awaiting the results from my operation.If this treatment plan changes I do not know what I would do. I had chemo in 2020 for Triple negative breast cancer.
Unfortunately this decision is a massive one that only you can make but get as much information as possible to help you make the decision.
Wishing you all the best.
Nat xx
Thank you for the link. I’ve not been told my oncotype or a predict store. Just read the link and as I’m HER+ it states not usual test. Which test would they use instead?
Next clinic. Visit I will ask. I had bilateral wide local incision with clear lymph node biopsies but and Er+ in both breasts and HER+ in just one. So am on 12 weekly Paclitaxel, only get 2/3 days good in a week and one of those days is chemo day. Three weekly Herceptin for 18 cycles followed by radiotherapy on both sides and aromatase inhibitors for 5+ years.
I was advised that HER+ can be treated with Herceptin but was more aggressive and although lymph nodes not involved then could be cancer cells in the blood. The chemo is used to kill that and prevent secondaries. As others have said that your future health. It’s not easy loads of side effects some may never go, loads of tablets to take but all for a better outcome.
I hope you can talk it through a bit more with BC nurse or oncologist, I don’t think it’s for you to decide, they are the experts and have the knowledge of all the trials so should state their case to you. That is what happened to me, I could I have said No but why would I? They are the experts, they tailor your chemo to your situation based on trial outcomes.
Hugs 
@naughty_boob -this is a link to the types of predictive tools you may be able to use with your doctors to help decide how helpful certain treatments may be for you and risk of reoccurrence . For some this may be helpful others may prefer not to know about possible prognosis and as others have said you are an individual and this may still not be a totally accurate reflection of your future .
Hello
I too went through breast cancer 2x in fact. I had exactly the same thing as you. All of the tumor was removed and then I went through chemo. It didn’t come back for another 20 years. I then got cancer again. This time I was treated with radiation and now I am doing really well. My oncologist put me on letrozole. If I were you I would go through with the chemo. I know it’s a very difficult decision but it is really worth it.
I agree with you!
I was diagnosed with Metaplastic breast cancer grade 3. in August. I was told from the beginning thst id just need Radiotherapy. However because my type is rare, they sent my sample off for the oncotype test. It came back last week with a score of 40. They told me they recommend chemotherapy. This really shocked me as i was told i wouldn’t need it. But without a doubt i will have chemo. Will have my consult with a Oncologist on 23rd Oct… I had 2 operations to remove lump, so effectively there is no cancer. I am not leaving it to chance…please have the chemotherapy. It has been tough, but we need to do EVERYTHING we can to avoid it comnng back. Listen to the Drs. Im sure they said its uo to you. Because it is even if it was 100. But bet they said they recommend it.
Hi,
I had an oncotype score off 11 and was advised not to have chemo as very little benefit. No lymph node involvement and clear margins.
4 years later i have bone mets stage 4 and wish i’d had chemo, even if it might not have msde z difference.
I very much empathise with your situation. When the surgeon rang me with news of my oncotype DX score being 41 and then in the next sentence said “but you don’t have to have chemo” I was very unsure what to do. She said that an appointment would be made for me to talk it over with the oncologist in my team and for the few weeks that led to the appointment I went on an internet search frenzy that led nowhere. I ended up building a huge list of speculative questions for the oncologist and thankfully shared it with my dad who said simply “he won’t be able to answer these questions, nowadays it’s evidence based medicine”. And that calmed me down a lot. I was then able to ask more useful questions about how active I could be during the chemo etc. …because once I was presented with the stats I decide to have the chemo after all but it was pretty obvious it would be for the best.
Feeling a bit left out here as I was never given an oncotype DX score. Should it have happened automatically? Have had mastectomy/chemo/radiotherapy/letrozole.
As to the IP, your call must surely be made on the evidence of how advanced the cancer was/is. I am somewhat surprised to see posters saying that their partners didn’t want them to have chemo as surely they want to give you the best chance of a long life. Yes, it is horrid, yes you will feel pretty grim for a few months but it is very doable and you just get on with it. I had a large tumour that was quite advanced with a high possibility of return so for me it was an easy decision. At least if it does come back, I have the knowledge that I did everything I could to prevent it.
Dear Percy, I was in a similar situation to you being told prior to removal of the lump that I would need just radiotherapy and then medication. But when the results came back was told that the onoctype score was 46 and they advised having chemotherapy to prevent it coming back within the next ten years. My oncologist told me that a few years ago I would have been told that I was cured and they would have waved me goodbye. I took it that I was lucky to have the opportunity to have the Chemo and not to have to wonder that every little thing I might suffer with could be a reoccurrence. Every treatment that you have is up to you. Nobody could have forced you to have the surgery and the removal of the lump, hence why you have to sign a consent form before any procedure. No it isn’t pleasant experience to have to go through and you have to be prepared for things not going quite as you thought! But I can honestly say that during the six months of the treatment I have had this year I didn’t feel ill, just a bit below par. The support you get from the nursing and medical teams, plus your friends and family is amazing. I would advise you talk through your concerns to you breast team nurse, to make the right decision for you. Good luck with what ever you decide.