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Newbie Questions

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luvdbyhim
luvdbyhim Member Posts: 188

Hello All!

I am new here....some background. Family has history of BC. Can be traced back to my great grandmother. No genetic mutations found. Had BC first time 2006 (bilateral mastectomy with implants, salpingo oopherectomy, 3 rounds of taxol), recurrence 2013 (mastectomy redone, ACT(taxotere not taxol) DIEP Flap, Anastrazole and then 2022 (Faslodex/Ibrance).

I was in a car accident in October and the ambulance driver who arrived on the scene encouraged me to go to the hospital but I was just sore nothing else. I wasnt going to go but relented. The CT scans they did in the ER showed funky things and they told me to see my Oncologist. She confirmed those funky things were indeed cancer mets. I have one in my left lung and then several in my liver. I had a liver biopsy that confirmed it was BC and not a new primary. I am on Ibrance/faslodex. So many questions. I dont know are the mets considered large or small? How long do you have to be on Ibrance/Faslodex to see any changes? How long is life expectancy? I have read on Dr. Google...3 years, 5 years, 7 years, 10 years and more. I am getting the impression it is all nebulous from here?

Any thoughts would be appreciated.


Comments

  • aprilgirl1
    aprilgirl1 Member Posts: 778
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    luvdbyhim,

    First of all, I'm sorry you had another recurrence. It was such a gut punch to me when I was dx 11 years after stage 1 dx when I did all and more than was recommended.

    - try not to read stats on google . They are based on very outdated info . I know it is impossible to not read the stats as I did that too.

    - I am on Ibrance / faslodex . We have a nice group of Ibrance users on a specific Ibrance thread you should check out .

    - typically, Ibrance users are scanned every 3-6 months. They generally don't scan earlier because they want to give it enough time to work . I'm my case the first scan at three months showed all Mets shrunk or not visible any longer. Stable (same size Mets ) or smaller / no evidence is the result we are looking for in scans .

    - some people (there are a couple of men but mostly women ) on the Ibrance thread have had stable or NEAD scans for 5 plus years ! This gives me so much hope.

    - I don't know if it's nebulous from here but what I have learned is that breast cancer and probably all cancer is really complex . If you tested negative for germline mutations 5 years ago it's possible your cancer has acquired somatic mutations . When we have a recurrence it's important to check on any new mutations .

    - I have been on faslodex and Ibrance for just over 3 years and have been NEAD on scans for over 2 years which I am very thankful about . So many new treatments are here and coming up for us .
    - hang in there, you are not alone . It took me awhile to get used to this and I'm not sure I am used to it but I have found some inner peace that I am doing all that I can and I will continue to fight to live a good quality of life , despite this reality .

  • luvdbyhim
    luvdbyhim Member Posts: 188
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    Aprilgirl1.....Thank you so very much! I will look for thread. It would be good to talk to people that have been on it for 5+ years! YES gut punch it was for me too. I also felt fine, no aches, no pains no nothing but I am sure thankful for that ambulance driver talking me into going to the hospital!

  • seeq
    seeq Member Posts: 1,110
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    luvdbyhim - sorry you have to be here, but you've found a great place. There is so much knowledge and support here. There are two more threads you may be interested in regarding your liver mets: "How are people with liver mets doing?" and "Liver mets: resection, ablation, SBRT, Y-90, anything else?" The second one has lots of interested about local treatment options.


  • luvdbyhim
    luvdbyhim Member Posts: 188
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    Seeq - Thank you so much!