Age 32, not eligible for Oncotype. Chemo or no chemo?

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**Update in comments**

I'm 32 and had mastectomy and immediate DIEP reconstruction in June 24 with pathology confirming 4 small tumours (Ductal Carnicoma, biggest 9mm, ER+, PR+, HER2-) and DCIS of 90mm.

They also found one positive lymph node of 6 removed. Because of this I'm borderline for chemo and will definitely get radio and endocrine therapy.

I haven't been offered the Oncotype DX test after asking, because the results aren't likely to be accurate for someone of my age with positive node. 

My Predict results show me at 2.7% benefit for chemo. My understanding is <3% = don't offer, 3-5% = discuss with patient, >5% chemo recommended. 

As I'm borderline of the borderline I've been offered it and now I'm totally torn on what to do.

I worry because the Predict tool only looks at 10yrs and while 2.7% isn't much over 10 yrs, I would really like to understand my benefit past 42! 

Also now it's been found in a lymph node metastasis terrifies me. The benefit of chemo seems small but actually my endocrine therapy is only 3.5% so less than 1% difference.

I need to make a decision on whether or not to do chemo (Docetaxel & EC) but I'm finding it so hard not having info about the longer term benefit on me due to my age. 

Infertility is also a concern as I don't have kids but would love the option. Embryo freezing is in progress which I know I'm lucky to get but doesn't guarantee anything and also the estrogen involved worries me.

Has anyone of a similar age/circumstance had any other type of cancer profiling test that I could check for?

Has anyone else opted for chemo at borderline?

My brain works with data for decision making and there just seems to be a lack of it for people <40 with positive node(s). 

First post, lots of info, thanks if you made it this far.

  • Not sure I can help you with this choice as I’m a lot older than you and have been offer oncotype- it’s  such a dilemma. Which I suppose you might even face even with the oncotype test because it could come back in the middle range I suppose. Maybe that’s their thinking? You could spend a fortune have the torturous wait ( I’m there!) and it comes back as inconclusive?

    have you asked the specialist what she would do if she was your age? I don’t know if that’s helpful or not?

    what I can tell you is many moons ago we were told we’d never have children And , several IVFs and frozen embryos later we have three beautiful children

    so do not despair on that front , it’s fantastic they are freezing embryos for you. I know the process is not fun though I really do

    so not sure this helps but just sending you love

  • Hi c22,

    Thank you for your kinds words and support.

    I've seen some people talk about exactly this same dilemma with borderline results from Oncotype test. I think my consultant won't refer because the test isn't recommended for my specific type as it won't necessarily be accurate. Which is totally fair. It just feels like everything I've asked has had a question mark over it as "there's not much data for people your age" which is a pain as I'm definitely data driven when it comes to making decisions! 

    I asked my consultant what she would do and she just said it's down to a personal preference on how much risk you're willing to accept. I struggle with that because it's a lot of trust being put in a tool that gives a prediction over 10 yrs, which is the amount of time I'll be on hormone therapy anyway.

    It's really reassuring to hear about your success with IVF, thanks so much for sharing. 

    Xx

  • If there was LVI, you have extra nodal extension or you are grade 3 then maybe consider it.  You are taking hormone blockers too,  which if it's strongly ER+ will be more important.  Did they tell you what the ER WAS (EG 8/8 or 5/8?) and if PR+? Not everyone can cope with them though,  and switch between different ones. Predict Breast goes to 15 years https://breast.v3.predict.cam/tool

    Xx

    “Remember to look up at the stars and not down at your feet.  Stephen Hawking,
  • Dear SOohie,  I read your post a few times and you certainly have a lot to think about and decide.  As I am  75 years old you can understand that I may not have too much personal information for you.  You are doing really well as you have made important decisions already and I know what you mean about following the data to make decisions.  Sometimes we can’t get that absolute criteria to decide and then it is time to see if even a small reduction in recurrence is worth it.  Oh those are the hard decisions.  Whatever you decide will be the right decision and since you are so young chemo may be an option .

    70% of Breast cancers are estrogen positive and they are not as aggressive as Her2 positive or TNBC.  One thing for sure is thank goodness for all the research that is ongoing.   
    I live in Florida and always watch the YouTube cancer conferences so I keep abreast of new treatments etc. 

    Sorry that you are going through all this but you sound so together that you amaze me.  
    Hugs to you.

    Barbara 

  •   thanks that's really helpful. I've got it on my list to ask more about the node because all I currently know is one was positive. 

    EG is 8 and it's PR+ too. 

    I think I was working on the 10yrs on Predict as this is what my consultant printed for me but have had a look at the 15 years and it increases to 3.9%. 

    Also I asked my consultant about the new predict tool you linked and she advised she's on some sort of Cancer Specialist Board who are actively not endorsing it because they don't believe the results are accurate. I saw someone else post about this recently too. Just to let you know in case you're using it for any decisions as well. 

    Thanks xx

  • Hi  , thanks so much for your response. 

    I do worry about the impact of chemo on my health and fertility but being younger seems to mean I may also be at a higher chance of recurrence.

    I will have a look at the cancer conferences you mentioned too. It's changing all the time and I feel lucky for the advancements that have come before my diagnosis and allowed for my treatment so far. I just wish I could predict the future!

    Thanks for taking the time to respond so kindly.

    Sophie xx

  • Hi Sophie, so sorry you’re going through this at such a young age. I‘m going through a similar thing but I’m older. My oncotype test came back as not recommending chemo but I’m now worried that I am missing an important treatment and wish I had been offered it. I too have cancer in one lymph node, which is my biggest worry. If you have the opportunity for the treatment, and I know it’s not at all pleasant, it is definitely worth considering. We have been using ChatGPT to coordinate all of the research - we ask it to only reference medical journals so that it filters out the rubbish but it’s great for getting quality information. You can use the talk button to ask questions and narrow the questions down. I would highly recommend it. There are so many new and amazing treatments being piloted so, as you are young, there is so much hope.  I too had IVF and now have two lovely children so there is always hope there too. Good luck with everything Fingers crossed tone2

  • Could you look at circulating tumour cell count or circulating tumour DNA. If negative maybe no chemo. You’d have to arrange yourself but they might help you decide. 
    I agree with you about predict. It’s frustrating because it’s survival not chance of recurrence that is being stated in the figures. I guess you could flip the chemo benefit to say there’s a 97 percent chance it won’t make a difference. You have to weight it all up against side effects. 
    and lifestyle changes like exercise, maintaining normal weight, healthy lifestyle, managing stress, relaxation and so on can all improve your outcome. I was so relieved when I realised there was a lot I could do to help myself. 

  • Hello S0phie,

    I am 40 and I have opted for chemo. This has been a tough choice but I feel that chia will give me an “extra boost” for the cancer not coming back. I did not regret it and I chemo for me was not too bad. 

    My advice to you will be really think at the next 20 years, you want to make sure that whatever you are going through does not happen again. 

    lots of love!

  • Hi Holly,

    Thanks for sharing. Really appreciate the perspective on this.

    Also the ChatGPT is a great idea and such a clever use of AI!

    Wishing you the best of luck with your journey.

    Xx