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LaurenInPHX
LaurenInPHX Member Posts: 165
edited October 2019 in Stage IV/Metastatic Breast Cancer ONLY

The doctor finally called with the PET scan results:

1) Multiple active nodes in the right neck. (these are the operable ones we knew about)

2) Paraphyrageal (sp?) node near esophogus - inoperable

3) Indeterminate areas in hilum (near lung) and T12 bone - little bit of uptake, but indeterminate. 

With the node in the esophogus, she is recommending no surgery and getting started on the Kisqali as soon as possible. If I can get a second opinion with someone who recommends the lymph node removal, then I can have the surgery but would have to switch doctors completely. 

I have decided to start the Kisqali, and see what happens at the 3-month PET scan. I'm not 100% convinced this is the right move, because two of the three reasons she is recommending against the surgery are indeterminate. If they are not cancerous, then I'm putting off taking out a whole mess of cancer for just one inoperable node. Is going without surgery the most aggressive way to go about this? I suppose I can look for a second opinion once I'm on a treatment and need a second line. 

What do you think of my decision, BCO'ers? The women on this board can be my second opinion. :)

Not the news I was hoping for, but all in all it could have been worse. 

Off to watch baseball and eat myself into oblivion. 

Lauren

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  • sbaaronson
    sbaaronson Member Posts: 230
    edited October 2019

    When I asked about having the mediastinal node removed I was told that surgery triggers the "wrong" immune response. Can you ask your doctor if you can expect to see results in 3-months? Some of these targeted drugs take longer to show response.

    Best

    Stacey

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  • LaurenInPHX
    LaurenInPHX Member Posts: 165
    edited October 2019

    Interesting, Stacey! That makes me feel better to think some good is being done or less harm anyway by leaving them in. From what I’ve been reading about Kisqali I think I should see improvement but I’ll ask her. Maybe no progression is my first goal.

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  • movingsoccermom
    movingsoccermom Member Posts: 225
    edited October 2019

    Hi Lauren. Many of my positive nodes are inoperable, and they even refused to remove the recurrence in my incision. I started on Ibrance/Faslodex in June and with the August PET scan had between 25% and 46% reduction in the metastatic areas (many nodes mid-chest, lung nodule, and recurrence). My caveat is that I had no anti-hormonals after my initial diagnosis, thus making the metastases more vulnerable to the new regimen, according to my consulting oncologist. My fingers are crossed for you!!

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  • LaurenInPHX
    LaurenInPHX Member Posts: 165
    edited October 2019

    Thanks soccermom - that's encouraging to hear and congrats on your results!

    I had been on anastrozole for 5 years, so I don't have that benefit. Also, the reason I was so hung up on getting them removed was because when I had chemo the first time, I was expecting a big reduction in size and when he did the CT midway through treatment, it showed the tumors were "somewhat reduced" and that freaked me out. I was like, "I need more chemo!" and he said the important thing is it's not growing and the best thing to do was to do surgery as soon as chemo was done.

    So, I guess I'm a victim of my expectations and experience in that I'm afraid I won't get good shrinkage.I feel like we're talking macintosh to granny smith, so I don't know if that's a big enough difference in medications to give me the results I want. 

    Sigh. Can you tell I"m an overthinker? ;)


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