Hi everyone, I’m hoping for some advise/views. I’m a 39 year old mum of 2 girls aged 4 and 1. I was diagnosed with stage 1/ 2 grade 2 invasive ductal breast cancer in September and had my lumpectomy with sentinel node removal (there was micro metastasis in the lymph node) in October. I received a oncotype DX score of 17 a few days ago which puts me in the category of ‘chemo may be beneficial but the benefits may not outweigh the side effects’. I think it will be essentially up to me to decide if I want to have it. I’ve been going back and forth on this decision and really don’t know what to do. I’m scared of the chemo side effects (particularly any long term damage) but I also don’t want to regret not doing it if the cancer returns. Does anyone have any experience of this type of situation and how did you make your decision? I have an appointment with my oncologist today to discuss. Thanks, Tanisha
Hi Tanisha
What a dilemma for you - and with two young children, an extra hard decision.
The problem with being borderline is that you are forced to weigh up the pros and cons. If you were just told you needed to have chemo, you’d accept that. But no, you are given the option! I presume you will be having a course of radiotherapy. I was told by one oncologist that she considered it the most effective of all the treatments.
The side effects of chemo can be harsh. The experience itself is something you have to get used to. However, the fact that there are side effects doesn’t mean you will get them. I for instance am on an oral chemotherapy and, apart from fatigue and the odd thing here and there, I have responded to it well. A friend in our support group recently started the same drug and was so ill, she had to be hospitalised! Now, if I’d known of her experience before I started that chemo, I probably would have said no. We are all different in how we respond.
I’m expressing an opinion because I’ve been one of the unlucky ones with Stage 4 bc. I had the full works for my primary tumours but… just bad luck, not inadequate treatment. You mention micro metastasis in your sentinel lymph node and I still consider the lymph system a minor physiological miracle - it traps the cells and prevents spread beyond. But it’s never foolproof.
I think you need to have a conversation with your oncologist and ask the pertinent questions. You may get answers in meaningless percentages but you will get a sense of whether they personally believe you would benefit from chemotherapy. They don’t want to put people through unnecessary treatments but nor do they want to deny someone a treatment they might gain from. Don’t just go by your oncotype score - statistics are just averages. It will be a hard decision to make - quality family time now or a long-term investment so quality family time continues as envisaged. Only you (and your partner?) can decide.
I’m sorry I can’t be more decisive. I do have an opinion but it’s not my place to tell you what I would do. The fact is, no matter how thorough your treatment, there will always be the possibility that breast cancer will recur or spread. It’s a question of will chemo reduce this risk for you?
More to think about, I’m afraid. Take care of yourself and don’t rush that decision. Make it a well-informed choice xx
It’s a hard decision. I think I would start with asking what chemo they would advise in your circumstances. What are the side effects both the present and possible future ones? How long would you have chemo? Then I would take a hard look at what you think you would feel like if your breast cancer would return. If you didn’t have chemo would you regret that decision? Would it make you wonder if things would have been different if you had thrown the book at it so to speak? Chemo is hard but doable. I went through it in the US but seven weeks out I feel pretty much back to how I felt before diagnosis which thankfully was great. So it is a temporary inconvenience although granted a pretty traumatic one. I don’t regret it but then my onco score was right smack in the intermediate range where chemo most certainly offers a benefit.
Hi Tanisha
my oncologist told that below score 25 she is even not recommending to have chemo unless no further treatments in future(no hormones and ect). Chemo is not easy and you never know how you body will react . The question i would ask oncologists what other future treatments they recommend? what % of benefits either chemo or the other treatment(if any possible ) it will be?Will you be having any radiotherapy on lymph nodes area ?
With the score 45, also grade 3 i did not have much of option to refuse chemo, but it was intense. Going through medically induced menopause, which usually happens if you are around 40 or older, was not fun too and that’s not reversable usually at that age.
whatever you decide, please ask a lot of Qs.if you go for chemo, also can you go for a lighter option and shorter course, so hopefully it will go easier for you.
please look after yourself.
x
Hi
I had oncoscore 18 and have been on tamoxifen following mammoplasty and radiotherapy . I really did have to think long and hard over chemotherapy as an option . I decided not to have it . For me the side effects percentages did not outweigh the risk . I had a micrometastic lymph node but this was removed so my surgeon was quite reassuring that it was low risk . I’m 3 months on from my decision back into work and although I still think about it a lot it does not feel as overwhelming as it did initially . I am focusing on the hormone treatment and making sure I take it . I’m older at 52 so does feel very different when looking at timelines and percentages . I hope you had some useful advice from the oncologist . I found talking to the breast care nurses really helpful and reading .
Hiya, I’ve just been though a similar decision but I’m 50 and with no children. I started chemo on Thursday and I have to say I don’t feel great, I’m having 15 sessions and I’m at the stage already where I’m dreading the next session in 3 weeks. I have a headache and nausea and dizzy feeling. The oncologist explained to me that i would have a 6.5% increase less chance of the cancer returning by having chemo and after all the discussion I said what would you do if it was your wife or yourself, and he is a youngish guy and said he would encourage his wife to do it. That basically helped me with my decision.
Like @Jaybro I have TNBC, which puts a slightly different perspective on things as it’s generally high grade and fast growing, often carries proteins that enable it to hide from the immune system, and you can’t take some sort of hormone blocker to help prevent recurrence. Chemo is therefore almost always recommended for TNBC.
You mention micro metastasis in one of your lymph nodes, but not whether there was any vascular invasion at the tumour site. That proved crucial for me, as cancer cells can travel through the blood cells as well as the lymph nodes. Despite only having an 18mm tumour and no affected lymph nodes, I have a secondary deposit on my liver. It has been found recently, but was probably in situ before I started treatment of any kind. They didn’t scan me at that point so we don’t know for certain.
To a large extent, I think whether or not to have chemo depends on your attitude to risk. I was adamant I wasn’t going to have chemo until I researched the nature of TNBC a bit more. I still don’t know whether having it was beneficial as I have secondary BC anyway. At the moment things are looking ok, but if it turns out I don’t have long left, I might regret having spent 6 months of ‘healthy’ time having chemo. However I would regret even more having got to where I am now and wondering if things might have been different if only I had had chemo.
It’s probably also worth saying you can bail out of chemo at any point - I know someone who only had 1 cycle and decided it wasn’t for them. It’s possibly too late to save your hair at that point, but most other things go away quite quickly. If you do have chemo, particularly a Taxane or a Platinum - keep a watch out for peripheral neuropathy - it’s a side effect that can be permanently disabling if you let it go too far. Bear in mind it gets a bit worse over the 3-4 weeks after you finish chemo, so you don’t want to get to the point where you can’t feel your fingers and toes during chemo.
Everyone’s experience of chemo is different, but it was nothing like my fears. Unpleasant at times but I lived fairly normally throughout.
Wishing you all the best whatever you decide.