Hi there, I’m 33 and was diagnosed with ER+ HER2- DCIS and ductal breast cancer last month.
I’ve had my surgery where they removed a 16mm tumour and one sentinel node which had macro cells on it.
I’ve had my results appointment with the breast cancer nurse and have the follow up with my oncologist next week. Trying to decide what to do with all the options!
I’m going to do radiotherapy, tamoxifen for 10 years and potentially ovarian suppression, but they are suggesting chemo too. On predict 2.2 it’s saying 2% benefit, and on predict 3 it’s saying 1.3% benefit…
Is there anyone else that’s had similar percentages and wanting to say no to chemo? I really don’t think it’s the right choice for me as my body isn’t robust and I have some other health worries, but I feel like the nurse is making me feel really guilty when I say I’m not wanting to do it and really scared the oncologist is going to say the same next week… I’m not wanting to be pushed into something but naturally want to live as long as possible!
Has anyone else said no to chemo?
Hi @hope67 
Hopefully someone comes along who has had a similar experience to you. There’s a lot to think about and I can understand why you would want to make an informed decision. Of course, the best person to ask would be the oncologist, so I hope you get the reassurance you need! You can also call the Breast Cancer Now nurses - more info here . They will be able to help you with any concerns you have, and sometimes I find it helpful just voicing things out loud and talking them through 
Wishing all the best 
Treatment is very individual and works on everyone differently. I wouldn’t go with some kind of automated answer.
I would ask your oncologist to explain exactly why they are recommending chemo. I’d get a second opinion and take it from there. For example, if they say you have a high chance of reoccurrence without chemo or we have evidence that chemo on top of your other treatment gives you a much higher chance of remission, I’d go for it.
I know chemo is the stuff of nightmares but they have ways of mitigating side effects and it’s not forever.
Hi hope 67
I am a male of 77 years of age with, or did have breast cancer.
I went through the same, Chemo or not in December 2024.
I was going to say no.
My breast cancer -
32mm lump in my chest that was fully removed - Stage 2 cancer.
What made me go for Chemo in the end was this -
Finally received my Prosigna Test result. it was 72 out of 100. With 2 lymph nodes having cancer means I am at a high risk of cancer returning. Therefore accepted full Docetaxel and Cyclophosphamide chemotherirapy treatment (TC)
Chemo went well, A few minor side effects after about 3 days that lasted a few days only.
Since then as preventative measure I have had Radiotherapy, Have been put on Hormone tablets for about 10 years and now making my mind up with regards to having Zoledronic Acid treatment to prevent or limit bone cancer in the future.
Nearly a year on, I have survived. A few setbacks but overall am fine.
I do hope you have support at home, it helps greatly.
Good luck in what ever route you choose, but don’t be afraid of Chemo.
Hi Hope! I’m 42 and currently going through chemo. It’s not nearly as bad as I thought it would be. I was absolutely terrified of it and if I’d been faced with your percentages I’m sure I would have said no. But now that I know what chemo is like, I would definitely do it for any added benefit I could get, even if small. I guess what I’m trying to say is that don’t reject chemo out of fear…it’s always the terrible stories you hear (people who don’t have issues don’t usually post about them!). I hope that helps x
Hello, similar to you I was diagnosed May 2024 at 32 with ER+ PR+ HER2- IDC and had a mastectomy and 6 lymph nodes removed with one positive. I was borderline for chemotherapy according the the Predict tool at 2.7% (2.0%-3.4%) so my oncologist left the decision to take chemo up to me which I really struggled with.
A year on, what i would say is:
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I spoke with my oncologist about the newest Predict tool as my benefit looked smaller too and she advised she is on a board of cancer professionals who do not recommend it’s use because there are concerns on the accuracy of the figures. I’ve seen other people mention their oncologist say the same on other forums.
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I sought a second opinion for whether chemo was necessary and it was strongly recommended, even though my Predict results looked favourable. People our age are hugely underrepresented in clinical trials and we have a different set of challenges to people who are diagnosed when they are slightly older.
We (hopefully) have longer to live and so longer for chance of reccurrence. We are usually pre-menopausal which comes with its own set of considerations around prognosis, treatment and fertility.
Something interesting I was also told was that taking chemo now may help reduce the associated risks of reducing hormone therapy if the side effects are too much, or taking a break if I want to try and have a child later on. -
Also while the percentages seem small, if you look at the available % it could feel more significant - e.g. for me I was something like 80% survival benefit after surgery, 9% benefit from endocrine therapy gives me 89% chance of survival over next 10 years. The available % in the model is up to 99% (as 1% chance of not surviving due to something other than breast cancer). So really I had 10% difference from my 89% and highest available 99% so chemo could only benefit me by up to this 10%. So while 3% sounds tiny, it’s 3% of an available 10, rather than 100. Hope that makes sense and isn’t too confusing. It helped give me some perspective.
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Chemo is scary - but if it’s recommended then it’s because it’s less scary than the alternative. I spent weeks going back and forth on whether to take it.
I chose to take it after my second opinion and honestly I’m so glad I did.
After I finished chemo and radio I had a scan for some rib pain and they found a lesion in a bone in my arm. My health care team thought it was bone metastasis and had prepared me for a stage 4 diagnosis and I got every scan under the sun and 2 bone biopsies. 11 painfully long weeks later they unexpectedly confirmed it was benign and I felt so incredibly lucky. Those 11 weeks were hard enough but I spent them being so glad that even if the worst was confirmed that I knew I’d flung everything at it when I had the chance by taking the chemo. -
For me, after diagnosis, it took so long to accept I was seriously unwell and so choosing to take chemotherapy seemed so scary and almost unnecessary in my head (?!). No one wants the chemo if they can avoid it but for me it was the right choice, even if it was a terrifying one to make. My decision took a lot of thinking, researching, a second opinion and speaking to some kind volunteers through Breast Cancer Now Someone Like Me - who I would highly recommend speaking to.
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Chemo wasn’t fun but I had plenty of good days and no major complications. They adapt the dose to your health and weight and you’re monitored closely.
If you’re hair conscious, like me, I cold capped and kept enough hair to only need to wear a hat for about 6 weeks of the 6 months in treatment. I finished in January this year and now have extensions in and no one would ever guess I’m a cancer patient in recovery from looking at me.
I’m so sorry you’re going through this and I know it wasn’t the advice you were looking for but just wanted to let you know my experience as your situation sounds so similar to mine and I spent ages looking for similar advice last year.
It may never come back or could come back regardless so you’ll never really know and it’s such a personal choice.
Whatever decision you make, just make sure you’re happy with your reasoning and talk it through with your healthcare team. Good luck and hope it goes well xx
Welcome to the forum, what a wonderfully informative post - thank you for sharing your experiences . @sm32
Hi @hope67
There’s a programme all about the risks/benefits of chemo that may help you with your decision. I’ll try send a screen shot of it now x
@hope67, I’m in a similar position though slightly older (36) and without lymph node involvement.
I also have health issues - hypermobile EDS and I’m so stressed about the impact of treatment on my overall health.
For me I will likely opt for chemo if I’m offered it as I have two small children and if the cancer returned in 10-15 years they’ll be teenagers at home still needing me to be as well as possible! But if I didn’t have children I might strongly consider just doing ovarian suppression/hormone treatment. I’d have a robust discussion with my oncologist about recent thinking around whether it’s the ovarian suppression that is the most beneficial part, and chemo might not add much extra.
I hope you are able to ask all the questions you need to and are comfortable with whatever decision you make
Hi I was diagnosed with triple negative breast cancer in May. I am older than you.
Oncologist said 6 months chemo then lumpectomy then radiotherapy.
I refused chemo, she then said they could do lumpectomy and radiotherapy.
I asked what the difference was and was told if I did chemo route and it worked then I had 87% chance of being her in 10 years,if I did lumpectomy and radiotherapy and it worked I would have 76% chance of being here in 10 years.
I’m 66, I always knew I would refuse chemo whatever, it’s a personal choice. I’ve finished radiotherapy now, I’ve been totally normal through whole process. Was driving 2 days after lumpectomy and all through radiotherapy. I’ve been a bit tired but continued life as normal.
I don’t regret my choice and never will. Everyone has to make a decision based on their personal views / circumstances. It’s hard but I just keep telling myself I’m fine, no point worrying and I’ve had great support with my choice from my family .
You have to do what’s best for you . Good luck 
Hey, I was in a similar situation to you in Jan 2024 - 20mm and 4mm tumours, ER+ and 2 positive lymph nodes. I was offered the OPTIMA trial where your tumour is tested (Prosigna test) for recurrence risk. Mine came out low and so was put on the no chemo arm of the trial. I’m not sure if the trial is still going on but might we worth asking?
Hi Hope 67
i declined chemo as I have hormone receptive same as you. I was told 2% benefit which isnt enough to lose my hair over (literally). I think the docs have to offer so they can’t be sued… but I reckon most of them would decline for 2% benefit. Good luck with your decision. Try to stick with Tamoxi… it has a heap of side effects no one tells you about. As your breast nurse to help you find ways to counter these, as the docs tune- out once the big stuff is done… I got a heap of UTIs from tamoxi… I was so sick of them as I hadnt had a UTI for over 20 years, then suddenly I was having them every month or 3 weeks… So my BN told me to take ural daily, and that stopped them… the docs said nothing… they didnt even respond when I asked them… they would have said “see your GP”… . there are many other "minor’ side effects, which all add up and are not ‘minor’ at all when you are suffering from them…
really push for support from BNs as I found they ignored my texts after the surgery part, when the rest of the Tx is just as traumatic to someone receiving Tx…
Hi @hope67,
Personally for me, I feel that at the end of the day, you know your body best! If you think a treatment is not right for you then maybe it’s better if you explore other options with your oncologist or doctors. I like to explore and learn more about a treatment method before agreeing to it, not just from the doctors themselves but from my own research online or even asking my friends and family for their advice. I think it helps when you are better informed as it can help guide you in your decision as well as any questions you may have for your doctor! These are a few of the sources I have come across which seem to be really insightful and easy to understand about chemo. I hope these will help you make your decision!
What is chemo: Chemotherapy: Types, How It Works, Procedure and Side Effects
Side effects of chemo: A Closer Look at The Side Effects of Chemotherapy for Breast Cancer
Preparation/What to expect for chemo: Chemo Infusions or Injections | American Cancer Society
Sending you lots of love and hoping that you will have a quick recovery!
Really thorough and thoughtful post @sm32.
To add to this my own bit I went through a solid 2 weeks of anger and denial and outright refuse to the chemo would be worth the confusing small percentages but hormone positive and premenopausal and young we should have a long time ahead of us.
Speak again with oncology Team to get an understanding of what chemo will do for You.
In the end future reoccurrence and secondary cancer scares me more than chemo.
I’m almost through it 5 of 6 over 18 weeks.
It is hard, you don’t know if you will get the side effects and how severe they will be but the Team are there to ensure you can manage.
The oncologist team don’t expect you to be confined to a bed wasting away like the film and TV drama portrayals, there are some many treatments and drugs for the side effects and the team monitoring you to adjust if needed.
I have been lucky and mild manageable effects. Still definitely absolutely not pleasant, still feel unwell but some days between treatments almost normal. There might be a lot more people like me managing chemo relatively ‘well’ we are not posting a lot we are doing gentle hobbies whilst still feeling rough! I used to think the word therapy was a nice pleasant term like Spa, now we know not all Therapy is like facials and massages!
Huge hugs and best of luck to you.