Weighing up chemotherapy when the predicted benefit is only a few percent

Going through breast cancer treatment Chemotherapy monthly threads
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Hi everyone,

I’m hoping to hear from others who may have been in a similar situation to me, as I’m currently weighing up a really difficult decision and would value lived experience rather than medical advice.

I was diagnosed with ER+/PR+, HER2-negative invasive lobular breast cancer in October. I’ve had a double mastectomy (late December - right side risk reducing) with clear margins and my CT scan is clear. My tumour was 29 mm, grade 2, with 3 out of 4 sentinel lymph nodes positive (macrometastases maximum 6mm, no extranodal extension). Ki-67 is heterogeneous – the dominant tumour is low proliferation - 5%, with a smaller focus showing higher proliferation 10-15%.

I’m perimenopausal.

My surgeon told me ahead of my oncology appointment because of the node involvement, I would need chemo. However, when I use the PREDICT tool (very aware of its limitations), even using conservative inputs, the estimated absolute survival benefit from chemotherapy is coming out at around 2.5% (standard dose) 4.3% (high dose) over 10 years. I have an oncologist appointment on Weds.

I’m struggling with how to weigh that against the very real short- and long-term impacts of chemotherapy, alongside long-term hormone therapy, especially as I am self employed with no insurance and have 2 neurodivergent children (7 &13) and solo parent 50% of the time, but also do additional appointments school stuff so I’m essentially a their primary carer.

I’m not trying to avoid treatment, and I know everyone’s situation is different. I’m just trying to understand how others approached a decision when the predicted benefit felt relatively modest and the biology wasn’t black-and-white.

If you were in a similar position were you able to get Onoctype DX testing based on the Respondx trial that included up to 3 nodes?

– Did you decide to have chemotherapy, and how do you feel about that decision now?

– Or did you decide not to, and how did you come to peace with that choice?

– Were there particular factors (family, work, side effects, peace of mind, fear of regret) that tipped the balance for you?

I know there’s no right or wrong answer — I’m just looking to hear from people who’ve had to make a similar call. And although the diagnosis was tough, it’s actually been a really profoundly positive experience so far, I know it’s weird to say and I’ve cultivated a positive mindset over the years to help me focus on the good instead of the hardships. I just really don’t want to have to go through chemo unless I absolutely have to. The irony of losing my hair and again and being a trichologist whilst trying to juggle work and not resting because I can’t afford to not work feels like a huge burden and unavoidable stress.

Thank you for reading, I really appreciate you taking the time to read and respond xx

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In my book the chemo wins every time. It is a defining treatment that is proven and I think the percentage gains it gives are probably a little more than PREDICT. However, although I opted for chemo without the benefit of knowing much about long-term hormone medication, having now experienced both, the chemo is far more do-able. Okay, its not a nice experience and the side effects can be significant and unpleasant BUT once its done you are on the up and even at my mature age, I recovered pretty fast. For sure I have an increase in tiredness but otherwise, am back to leading a healthy life and cancer free. By contrast, I found the side effects of the hormone therapy completely debillitating and the thought of taking these drugs for 5 or 10 years was a no-go for me so I abandoned them after ten months. At least with chemo, once its over you are done and can claw your way back to health. However, if you are one of the unlucky ones who does not tolerate the hormone drugs, your life will be signifcantly diminished. I ached from head to foot, couldn’t sleep, was depressed as hell, and had zero energy. For me it was a no-brainer but you are clearly much younger. In your position I would certainly go for the chemo and then further down the line see how you get on with the drugs. If you then have to give them up, at least the chemo will have given you some protection. I wish you luck.

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I’m waiting to start chemo, and my % benefit was much higher than yours, but before I knew this I went with the mindset if throw everything at preventing a recurrence in future. I knew that if I didn’t go for chemo then if I was unfortunate to have a recurrence then I’d always be wondering if the chemo would have prevented it.

I think the guidance for drs is that node involvement usually prompts chemo, and 4 or more makes it a strong recommendation. The percentage between 3 & 5% is a grey one and a shared decision between you and you Dr.

I’ve previously been a single parent and even now with my partner around, I want to make sure I’ve done everything possible to delay it or prevent a recurrence.

I understand the financial worry too. I joined my company less than 12 months ago so only get 1 month full pay and 2 months half pay and half pay won’t cover my contribution to the house finances. There is financial support out there though. Have you done a benefit calculator? Turn2Us or Money Saving Expert or Macmillan do one. The Macmillan one is really good. You can also speak to a Macmillan money advisor to see what support you can get.

I understand your conflicting worries. For me, the possibility that cancer might take me away from my family was enough to decide to navigate the financial and physical challenges of treatment.

Good luck with your decision, it’s not easy at all.

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Great response @2kittens !

I have recently had a lumpectomy for stage 1, grade 3 triple negative breast cancer with clear nodes and margins and have been offered “just-in-case” chemotherapy due to the aggressive nature of this sub-type. As you can probably imagine, knowing that there is currently no evidence of it having spread threw me into quite the dilemma about whether or not to do the chemotherapy because, let’s face it, no one wants to do chemo, but I would feel better about doing it if it was to remove cancer we know is actually present.

However I then started thinking about how future me would feel if I didn’t do the treatment and the cancer was to recur. I’m pretty sure I would, like you’ve said, be wondering what if I’d have taken the chemo. And it’s not just the thought of death for me, it’s the potential for suffering and poor quality of life up until that point as well, all of which don’t only affect future me.

So I’ve decided to throw everything at it too as long as the oncologist is happy I can do it safely. I would rather not and I’m not particularly looking forward it, but I think it will give me peace of mind for the rest of my life that I did the right thing, which means a lot to me.

Thank you for your wise words and I wish you all the very best with your treatment x

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@elisac I’ve just reread your post and one question really stuck out to me

‘– Or did you decide not to, and how did you come to peace with that choice?’.

It made me wonder if you’re already feeling that you wouldn’t be at peace with deciding not to.

I’m not trying to sway your decision, I just felt that it stuck out to me so felt it right to mention.

I hope you come to a decision that feels right to you, whatever that is :smiling_face:

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I decided to go for it. My oncologist didn’t use the predict tool and just said “ir gives me the best chances” he wants be to have everything, chemo, radio, ovarian suppression, aromatase inhibitors. Bisphosphonate, CDk and maybe something else. Having EC-P 8 cycles in 2 weekly intervals

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