Hi, new here and wanted to just tell my story. Routine mammogram at the end of January, got a letter couple of weeks later to go back for further tests. Had scan and biopsies on left breast on 20th February. Called back in on 1st March, sorry found a small tumor, size of a pea. To say I was shocked was an understatement. Surgeon was lovely, says don’t worry we’ll get it and take the sentinel nodes, hadn’t a clue what they were. Had a holiday booked for a week later so told go enjoy, try and take your mind off it, the operation will be after Easter. Enjoyed the holiday and back home phone rings, your operation is on the 21st March! In and out the same day, surgery went well. Back in 8th April for the results, tumour gone, lymph nodes all clear, just a course of radiotherapy and some estrogen suspressent tablets. You’ll not need chemo.
Thinking that not too bad, go round to see the oncologist. She says the tumour has been sent to the US and I’m thinking what for?
Sure it’s out of me and the lymph nodes are clear. Then she mentioned chemo as a prevention and I refused it, I’ll have the radiotherapy and the tablets. Then she mentioned these Ibandronic tablets and I
refused them also. Anyway she phoned a week later to say that the tumour result is 33? Asked what the results should be, she says below 26, recommended chemo and I again refused it. My partner has backed me up on my decision to refuse the chemo.
Sorry for the long essay but I feel I have done what’s right for me.
I just wanted to tell my story.
Hi @andipandi,
Thanks for sharing. I’m currently waiting for my surgery results on Tuesday so hopefully I’ll get good results like you. Next step is also radiotherapy. Slightly different to you was that I had chemo before surgery so it was the first part of the process for me. I know you’ve made your decision but for info the chemo was manageable for me. I’m not going to pretend it was easy but I handled it.
There is no right or wrong decision here it’s whatever you feel most comfortable with. It was probably a shock to be told by one person you didn’t need chemo and then it to be changed. Unfortunately this happens a lot and plans change through this journey and for me I try and just take one step at a time and wait until each step is done before focussing too much on the next. Try and just control whatever you can.
As I said, this is your decision and everyone is different. Make sure you’re happy you’ve taken the time to come to your decision and are comfortable with it. Chemo is scary and you won’t know how you’ll react to it but it can be manageable with the drugs they give you for side effects.
If you want to know more or ask any questions about chemo there are lots of us who are happy to share our experiences. But if this is not what you want then we are here to support your decision 
xx
Thanks for your reply. Good luck with your results.
Hi, cancer is such a shock. When I was diagnosed I felt angry with the surgeon who told me I had cancer. I felt that cancer happens to other people and not to myself. Basically I was in denial.
The decision we make about our treatments are difficult, there is what we want and what the medical team advise. The oncologist wants to give you the treatment that the evidence suggests will reduce the chance of your cancer recurring. Even with all the treatment he advices there is still the chance of recurrence just as having declined chemo hopefully your cancer will not recur.
I respect your decision and I send you my best wishes.
Hello. And hope you sre doing well…i was told i would not need chemo, but sent my tumour off for a oncotype test and csme back as 40 something. Chose to go ahead with chemo, finished 6 months of it 3m4 weeks sgo, snd start 4 weeks of Radiotherapy on Monday 13th May.
Everyone’s choice on treatment is theirs. I know if it ever comes back. I would not do chemo again…
Just want to get Radiotherapy done and want to try and feel normal again…
Thank you for your reply. Good luck with the radiotherapy.
Thank you for your reply.
Hi
Such a difficult time. My oncologist sent my tumor for oncotype testing. Meanwhile I received a letter from the breast surgeon giving my final histology. All was as discussed at my follow up appointment post surgery except something called an NPI score of 4.5. I had no idea what that was, so googled it only to find my prognosis was only moderate. Have to say that was a sledgehammer blow. Anyway a week of worry and sleepless nights imagining all sorts and expecting to need chemo and radiotherapy and worrying it had spread. Then Wednesday my oncologist told me my oncotype score was 18 and my CT scan was clear.
To say I was relieved is an understatement. I couldn’t actually believe it. Now I am only facing radiotherapy.
That said I would have undertaken chemo too as I am paranoid about cancer returning and spreading to other parts of my body. However these decisions are totally individual and we all have different reasons for the decisions we make. I think we all have to to make informed decisions based on the advice we are given BUT also based on what we believe to be right in our hearts. We are the ones who have to live with the decisions and feel comfortable with them.
Wishing you all the best xxx
Thank you for your reply and good luck with your radiotherapy.
We must always go with what is right for each of us - and that can depend on lots of things, such as age, where we are in life, our own thoughts on the world of medicine.
Very much like you, I followed my own path with treatment 6 years ago. I wish you all the best.
Hi andipandi
It’s terrible news and a shock when you are told you got cancer mine was different to yours I was diagnosed January 2023 with advanced breast cancer which had spread into my lymph nodes and they found small particulars at the base of my spine. had a mastectomy and lymph nodes removal and of course was given chemotherapy and radiotherapy for a preventative not a cure to stop the cancer coming back . Good insurance policy I was told I went through treatment pretty well but did say when I finished treatment I hope l have not got to do that again. Three months after treatment I found out I have a new 2nd primary cancer which is oesophageal cancer nothing to do with my breast cancer at all, in-fact before any treatment plan was discussed I had all the usual scan to check how bad this cancer was and to also see if my breast cancer was clear results all breast cancer was clear and the treatment had worked. I did say after my last chemotherapy I would not do it again I have no options this time without treatment I have no chance and the pain is bad so I am glad to have the treatment to shrink this tumour and hopefully get rid of it. I now look at it differently I call it caring chemo because without it l might not have a chance.
I am 65 years of age I did smoke 40 years ago I never drink looked after myself always had a good healthy life I thought I was the last person to get cancer but sadly I was dealt the cancer card but I am still here , walking around and enjoying my life . I live on my own and I am still walking 4 miles aday with my spaniel dog, life goes on even after chemotherapy.
I do respect your decision , I had no option with my breast cancer it was advanced and obviously I have no option now.
You take care and always remember go with your gut feeling and if you think it’s right for you , you do it xxx
I’d like to start by wishing you well and admiring you for your commitment to your decision. I that you make sure you are fully aware of your condition the options and consquences of the treatment available and not via Dr Google.
I was given my Primary diagnosis in July 2006. Knowledge and treatments have come a long way since then. I was lucky enough to be on a clinical trial which meant instead of a mastecomy followed by one type of chemotherapy then radiotherapy I had 2 different types of Chemotherapy then a mastecomy and Radiotherapy. This along with hormone related tablets greatly improved my chances of no reoccurance. However the month after my 10 year all clear I had an enlarged lymph node which was Cancerous and removed. A year on and another enlarged lymph node but this time classed as Secondary. With increased knowledge I did opt for treatment both in tablet form and infusions. This has given me an extra 7 years that I wouldn’t otherwise have had. Also in that time I’ve welcomed a Grand-daughter into the world.
It is a juggling act and we must each make our own decisions but we must also make sure we have all the information available to make an informed decision. Chemo is tough but you come through it. I feel the benefits outweigh the downside of it.
I wish you well for the future. For me I know what the future holds but I don’t know when as that is the one piece of knowledge I don’t want to know. At the end of the day the only thing we can be certain of is that we will all die one day. We could get hit by a bus tomorrow we just dont know. We just have to live each day to the full.
Hi Andi! So nice to hear from you even if the circumstances stink. In saying that though I think it is important to hear the context about why chemo is recommended in situations such as your’s since doctors don’t often talk about the specific biology of breast cancer. There are quite a few types and even within those types they are all different in the amount of mutations they have and how likely they will recur. You had a hormone positive tumor since they did an oncotype test on it. It’s standard procedure to do it regardless of lymph node status because some breast cancers are more likely to spread through the body than others. And it’s because breast cancers don’t just spread through lymph nodes. They spread through the blood vessels, too, and research is showing that this can happen quite early in the game, before we have any symptoms alerting us to their presence. That’s actually the main concern because those cells can take up residence in distance sites in the body, going to sleep perse with endocrine therapy and years later for reasons we don’t know yet, wake up and start growing. And then you’re at stage 4 which can be treated at this point but not cured. No one wants to be there. The oncotype test can isolate those types of tumors, the ones more likely to spread in the beginning through blood vessels letting the doctors know whether chemo would be beneficial so that they can be killed before being possibly put to sleep by endocrine therapy. With your score you have one of those types of tumors. Now just because you have that score that doesn’t mean your tumor has leaked some cells nor does it mean that even if it did, those cells will be put to sleep by endocrine therapy only to rear their ugly head in the future. Hopefully if there are rogue cells out there endocrine therapy will instead cause them to die by depriving them of the hormones they need to grow. That’s what it is for afterall. But there’s no guarantee it will work like that for you. Anyway, like you, I had a tumor that by all appearances showed no spread. Certainly that was a good thing but my oncotype score came back intermediate and because of my age that meant the chemo would do me more good then harm so I went ahead with it. It wasn’t fun but I got through it and made a complete recovery and now have the added benefit of knowing that I’ve done everything recommended so I never have to hear the world breast cancer again in regards to myself. Now you can make a completely different decision of course but I do think it’s wise to know how sneaky breast cancer can be. Good luck!!
Hi 
thanks for sharing your story i am sure it makes you feel empowered. I do believe that it’s your body and you have the right what goes into your body. Well done 
Thank you