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Questions regarding Metastatic BC

Previously had stage 2 Invasive Ductal Carcinoma=lumpectomy, 7 weeks radiation, then tamoxifen (stopped taking after 1.5 yrs).BRACA testing at this time was negative. OncoDX number was 11. Fast forward 7 years, It is now Metastatic. I am ER +, PR+, HERS2-. PET Scan a couple days ago, received results ..alot of "no's/none" on the list. I am hopeful.

Due to the fact I have to be cleared for surgery because of my heart, the status of everything is on the waiting bench. This entire journey feels like a really bad transit system, either waiting forever on a bench, when riding the bus a lot of hard stop and go's and jumbled and missed conversations/information along the way. By the end of the route you are a pro. Back to my question.

If/when I have surgery I know that I will not be able to lift my arms for a bit. I am picturing having to live like a t rex for awhile, the limited movement in the arm reference . I was going to practice for a full day to see where my issues are going to be. any suggestions? I am thinking of using an old t-shirt with the arms not in the holes to resemble a limited motion.

I am also struggling with deciding on reconstruction or not. input would be appreciated .

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,269
    edited October 9

    latx,

    I am so sorry you find yourself with a recurrence. You mention that you are now metastatic but you don’t mention where your mets are. We have active threads for those with the most common bc mets as well as a few less common. The reason I ask about this is that it is uncommon, but not unheard of, for those who have metastasized to have mastectomies. A popular school of thought is that since it has now spread beyond the breast there is no reason to subject one to surgery when treatment of the metastatic sites should be the focus. The other side of the coin is that some doctors believe that mastectomy reduces overall tumor burden. However, each of us is unique and if this is what your mo recommends then this fits your circumstances.
    We have a very active forum on surgery and all issues related to surgery. I can’t paste URL’s on bco for some strange reason but search for Surgery, before , during, and after. Reconstruction is a very individual decision and what type of recon you may qualify for depends on individual factors as well. Recovery was a lot easier and less complex than I would have imagined but I had implants. The different recon options each have different restrictions during recovery so it would be pointless to practice and really, it’s a very short lived issue and not the daunting situation some imagine. We also have many recon threads that are active . Take care

    PS: Your BRCA testing is still negative as genetic mutations either are or aren’t present as a result of your genetic heritage. BRCA is inherited and not a spontaneous mutation.

  • latx831
    latx831 Member Posts: 2

    I am not sure what mets actually are, I do meet with the surgeon and oncologist again next week. My cardiologist appointment today is for surgery clearance. Thank you for bringing to my attention other questions that I need answers to and taking the time to respond. It is appreciated .

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,269
    edited October 9

    Mets is short for metastasis. This means your bc has moved beyond the breast to, typically, brain, bone, liver or lungs . Have you been diagnosed with a metastasis or a local, confined to the breast, recurrence? If you are now metastatic, it would be highly unusual, possibly irresponsible, for your doctor not to have given you details about your mets. I can’t even imagine telling someone they are metastatic but not telling them about it, since metastatic disease is incurable. Is it possible that you have a local recurrence?