I’m in a grey area and confused

jo_c
jo_c Member Posts: 3 ✭
in Newly diagnosed
Hi, recently diagnosed early breast cancer. Invasive ductal carcinoma. Lumpectomy and reconstruction (breast reduction).
ER and PR +, Her2 -, Tumor grade 2 10mm, KI67 very low, 1 out of 3 lymph nodes positive small 2.5mm.
Lymph node has put me in grey area with chemo now being my choice. Ocnoassist states extra 3% survival 89%, hormone blocker 86%. Will be doing radiotherapy.
My oncologist said sometimes chemo risks outweigh benefits in my case since low risk but I needed to be advised of my options. He did not push either way and support either decision. If it were 1 or 2% would not be even talking.
So how does one make this hard choice ? There are so many what ifs? Do I want to put myself through 5 months of chemo? It’s so hard. Any advice would be amazing 
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  • arpie
    arpie Member Posts: 8,197 ✭
    Sorry to see you join our exclusive little club @jo_c ... the one no-one ever thought they'd join xx

    It is such a personal choice and yes, it IS hard to make that decision.  I was lucky & didn't have to do chemo - so others who did will jump on soon with more personal advice from experience ...  but consider a room of 100 of your relatives and best friends .... knowing that 3 'won't make it' ..... which 3 would you think it should be?  I am thinking it would be None of them  :(   

    Sometimes you may just have to toss everything at it to know that you've done as much as you can to prevent a recurrence 

    Take care & all the best with your decision making xx
  • AllyJay
    AllyJay Member Posts: 957 ✭
    Yes...the old statistics question. If I walked past a shop advertising 3% off all handbags, I probably wouldn't even bother going in. However, that 3% in a different scenario, can suddenly seem quite large. Cancer statistics are derived from huge amounts of people...hundreds of thousands or even millions, and each point counts. According to the Australian Bureau of Statistics, in 2023 there were 307 687 children aged 4 and 310 777 children aged 5...total of 618 464 kiddies aged 4 and 5. If 3% of them drowned in one year, that would be 1 855.38...one thousand eight hundred and fifty five (point three eight) dead children. Suddenly, that 3% seems substantial. This is a decision each person has to make for themselves, but what made up my mind for me, was the question of if the cancer did return, after me declining the treatment, would I be wondering if I might have been one of those in the three percent? Unfortunately at that point, I wouldn't be able to press a "Stop" "Rewind" button. Good luck with your treatment.
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,144 ✭
    Hi @jo_c just adding to the discussion with the helpful feedback already provided above. You may like read the My Journey article https://myjourney.org.au/article/2181  (This may or may not apply to you - however worth sharing)
  • FLClover
    FLClover Member Posts: 1,580 ✭
    edited April 5
    Hello @jo_c
    Our stories sound very similar. I was also diagnosed with early stage, hormone positive, HER2 negative breast cancer. However, I had 2 lumps in my right breast and one in my left, therefore multifocal and simultaneously bilateral (which really scared me, but surgeon said was not a bad thing). I also had a micromet in one node (discovered after surgery which my oncos said posed no threat at all, and I was still considered stage 1). The lumps were grades 1 and 2, which was a positive. I was told if I had a DMX, that I wouldn’t need chemo or radiation, so I agreed. After surgery, my first surgeon told me I was a good candidate for chemo, simply because I was ‘young’ (39 at the time). I was gutted because he knew my age before the surgery and still told me what he told me. They couldn’t give me a better reason for having it. So, then I saw a medical onco who told me it was a grey area, and ultimately was my decision also. He said I didn’t really need it because the surgery did the job, but chemo would just be an extra help. I felt like crying because it was a huge decision to make on my own, and not enough time to make it. Too much unwanted pressure. I actually didn’t want chemo because I know the damage chemo can do, and my reasoning was that I also want to live a long time being so young, yet chemo can cause issues with vital organs which would’ve meant more medication, more side effects etc, and that also scared me. Plus, the benefit was only an extra 2%. Finally, I asked the oncologist’s registrar, who was also a young woman, what she would do in my situation. She said (in short) that she’s risk averse and wouldn’t opt for it. She had also said at a previous appointment that too many women choose to throw ‘everything’ at it, which isn’t always a good thing as lots of times, the risks seriously outweigh the benefits, so we need to make choices based on ourselves (her words), and that the hormone therapy would be more effective in my case. I liked her answer because I actually agree with it, and finally chose not to do chemo. 
    Then, I saw my radiation onco and it turned out that suspicious tissue had been left behind (despite having a double mastectomy, hence me changing surgeons) and I ended up needing bilateral radiation as well. So, do I regret not having chemo 4 years later? Nope, I’m very happy with my decision. I think the surgery and radiation, plus 3 years of hormone suppressing therapy was enough. You can’t ever wipe out all cancer cells, because they’re always present in everybody. It’s just how the body functions. We just need a healthy and strong immune system to wipe these rogue cells out before they multiply out of control. So, I figured I’d change my diet, start exercising, see a therapist etc instead, to try and boost my immune system so it’s healthy and robust again, instead of having more poisons injected. That’s how I'm getting that extra 2% (and more) benefit for my body instead of via chemo. I’m not denying that chemo can help, because it does help heaps of women, but it is toxic to the body and not necessary for everybody. There are other ways to improve our health. 
    This was my reasoning only, for myself. We all need to make choices for our individual selves. As long as you’re happy and confident with your choice, I think that’s all that matters. 
    Sorry my answer is so long, but this ride is never a smooth one as we know. So many things happen that need explaining for these types of questions. I hope you figure it out ♥️. 
  • arpie
    arpie Member Posts: 8,197 ✭
    edited April 5
    @jo_c And as @Mez_BCNA has pointed out - genome/oncotype testing (if suitable for your pathology) may help with your decision making - talk to your Onc about it.  Sadly, it is a bit expensive - but if it shows you don't HAVE to put yourself thru chemo .... it will help with your decision making. xx

    If you don't think you can afford it - do you have family or friends who, instead of giving your a birthday/Xmas present this year, may like to contribute some $$ towards it, to make it easier for you?
  • Katie46
    Katie46 Member Posts: 226 ✭
    Hi @jo_c, this must be a very difficult position to be in. The choice was pretty much taken away from me as I had stage 2 grade 3 IDC cancer (although only 2cm) with 1 lymph node involved. My oncologist strongly recommend I have chemo, so I did. I may have thought more about it if it hadn't already spread, but my reasoning was if it had already spread to 1 lymph node it was possible it was elsewhere. My benefit was 7%. I'm towards the end of my chemo, and so far it hasn't been as bad as I though it would be (I was lucky and haven't suffered any sickness and nausea) but side effects vary from person to person, and I'll be very happy when this phase is over.
  • MrsMorrisey
    MrsMorrisey Member Posts: 88 ✭
    Ah the old "grey area" comment. In other words, we don't know so we will leave the decision to you. Forgive me for my harsh attitude however these decisions are very hard to make as a lot of fear is put into us. I did not take the oncotype test because I knew I did not want chemo and as with everything else with my cancer, 50 yrs old, Grade 2 Stage 2 invasive and grade 2 dcis, my rad onc called me a fence sitter. (she was joking, and I laughed) I assumed my oncotest would come back right down the middle and Id be $5000 poorer still with a decision to make. So going by my predict test of 3 % benefit for chemo, I chose not too. My surgeon removed all the tumour which was contained in dcis after two operations. I figure that the dcis contained it from spreading. I had three lymph nodes removed all clear.
    I will be doing radiation and hormone blockers but am not prepared to totally kill everything in my body on such a small chance. 
    I wish you the best for your decision. Dont let people rush you. My med onc called me within 24 hours of my first appt with her and asked what I was going to do. I said I need time to make the decision. Its very different for the drs and hospital on a timeframe but that shouldnt pressure you into a decision that is very hard to make. There are a lot of factors in our lives, family, work, finance, faith etc and these all need to weighed up for you to be ready in your decision and move forward with confidence.

  • FLClover
    FLClover Member Posts: 1,580 ✭
    I agree with you there, @MrsMorrisey. It seems like sometimes they really don’t know the answer, so leave the decision to us, who are terrified and not educated on chemo matters. Then they rush us to make a decision. Very unfair. Then they offer the oncotype test, which costs $5K. Excuse me? I don’t have $5K lying around for a test which sometimes also comes back inconclusive. I got a bit annoyed at this when it was suggested. If it’s that important, the gov needs to cover the cost. I told my onc I won’t be doing that test, and to please help me with the info he already had. They did suggest the free online Predikt Tool test thingy, which I used and which showed about 2% benefit (not enough for me to have poisons that kill off everything in your body, as you said it, and I actually agree on that). My Ki67 was also low, and based on all that plus what the registrar said, I decided to not go ahead with it. I was never keen on it and I told them they need to give me a good reason to do it; they didn’t. I figured surgery, radiation AND hormone suppressers were already enough for my poor body (especially being stage 1). Each to their own, as long as people are confident with what they choose. 
  • Afraser
    Afraser Member Posts: 4,449 ✭
    Like @Katie46, my oncologist recommended chemo (post mastectomy) - I had one malignant lymph node and the cancer type had shifted from the original tumour to the node (not metastasised but changed). Before seeing my oncologist, my surgeon said to remember that chemo might only improve my chances by a few points, but the few points could be really important. I did six months chemo. Chemo is no guarantee - nothing is really. You’ve had cancer once, there’s no
    rule that says it can’t happen again. If I were to get cancer again, I may do chemo
    again. I’m a bit addicted to living. I’d also want to know what other options are now available that weren’t nearly 12 years ago. I have a slightly irritating (no pain, little day to day impact) long term side effect from chemo, my organs are all fine. But as everyone says, this is hugely personal. The only one who needs to feel right about this is you. Best wishes whatever you decide. 
  • jo_c
    jo_c Member Posts: 3 ✭
    Thanks everyone for your thoughts, advice and kindness. Everyone really has their own story. It is a very difficult decision to make and understand everyone’s points of view. I have lots of thinking to do. Good luck to everyone on this journey  <3

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