chemo or no with micro metastasis

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  • carlyleo
    carlyleo Member Posts: 1
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    Hi COnfetti I hope all went well - I was diagnosed last Dec and had a similar dilemma with stage II Early invasive breast cancer which was HER negative and PR and ER positive. I had a lumpectomy and one sentinel node removed which had about 7 micro metastasis which were all encapsulated . The tumour was a bit bigger than expected but margins were clear. After being told initially by the surgeon I would only need radiation and hormone blockers there was then some discussion at the multi disciplinary team meeting about chemo. It took 5 weeks to get an appointment with my onc ( this was good i was told as it possibly meant I wasn't considered a super high risk). FInally got there and he said on reflection he didn't think it would add much, about3% to  my overall 10 year survival chances. 
    I came away confused as I had done quite a lot of research from good medical and scientific websites and it seemed that when nodes were involved chemo was the go.
    I managed to see another onc - and he mentioned the Endo- predict test which is a genomic test and gives a clear score on high or low risk. It is also a lot cheaper than Oncotype but still expensive, about $3000 but I figured peace of mind was worth that,
    To everyone's surprise I came back as high risk - only just over the marker of 3.4 but i was 3.8 and therefore at higher risk than my onc thought. We agreed I would try chemo  as i really wanted to reduce my risk of recurrence and see how it went. I had three treatments and then had a pulmonary embolism ( not fun) and so we agreed to cease chemo, which can be the cause of embolisms. I then had radiation therapy and am now on letrozole hormone blocker. 
    I am still not sure the chemo was a great idea actually as even though I was " high risk" it was still pretty low on the graph and I now think that there is a lot they don't know about the long term effects of chemo on the body and mind in terms of cognition and possible accelerated ageing. So if you didn't have it I wouldn't fret as it may have been of minimal use for you. I do think that blocking the Estrogen is the key to preventing the recurrence of this type of cancer plus staying as healthy as possible. I am trying to lose weight as I am about 20 kg more than I should be and this will not only make me feel better and stay healthy it has been shown to be another factor in reducing a risk of cancer. I also encourage you to have a positive mindset and put your focus on living your life to the full. There have been studies that show that this can also help to keep us well.

  • Cindi
    Cindi Member Posts: 134
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    Hi @carlyleo,
      I was also diagnosed with Lobular b.c. back in September, I'm now on hormone blockers too, ( after bilateral mastectomy)  can you tell me please how your Letrozole affects you?

     I am on Exemestane (Aromasin) and finding the bone aches bad, the sweats also knock me around & trouble sleeping, but I can put up with it ( better than getting cancer back)  but just wanted to ask?

    Good on you for your trying to loose weight and healthy lifestyle, it will really help  :)<3
  • Confetti
    Confetti Member Posts: 7
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    Thankyou for the replies! 

    The benefit explained to me was about 2% add on with the chemo at the very end and my time of effectiveness was running out, I did 15 rounds of radiation and started Zoladex and Exemestane, currently spotting and evidence that the AIs aren’t working, currently switched to the zoladex and Tamoxifen and seeing an OBGYN in relation to ovary removal. Second Oncologist recently confirmed a similar recommendation to skip the chemo, so all in all okay with the decision to skip it. More nervous about the Zoladex not working!