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TNBC Survivorship plan

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I was diagnosed with TNBC in July 2022. I had a lumpectomy in August, then chemo Oct-Dec. Because of the genetics results, I elected to have a bilateral mastectomy with breast reconstruction using my own abdominal fat in January 2023. I have recovered quite well. By April 2023, my med onc discharged me to family practice, and surg onc discharged me in May 2023. Given the TNBC's aggressive profile of returning cancer to the brain and bones, I want to know what my survivorship plan should include and what aggressive monitoring approaches are available to reduce my recurrence to bone/ brain other organs. Any suggestion from someone with a similar profile, or clinical expertise would be very much appreciated.

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  • moderators
    moderators Posts: 8,055
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    Welcome, @niche! We're so sorry you find yourself here, but we're glad you've joined our community and hope you find support here. Congratulations on completing treatment, we know how difficult it certainly was!

    We have two threads that you might might helpful and interesting, given your question. We have a robust TNBC community here, and many who have been around for many years and who are open to sharing their own stories of survivorship. Our Calling All TNs thread is probably our most active, and you'll find many wonderful members there to connect with who can offer advice and guidance. We also have a thread called Long Term Survivor Examples that we would encourage you to read through.

    The Mods

  • cookie54
    cookie54 Member Posts: 694
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    @niche Glad you are doing well after treatment. In my experience once treatment is completed for the first year I had labs and saw MO every 3 months. It then trailed off in year 2 to six months, then once a year. I have a friend who is post TNBC 7 years now but still checks in with MO every year. I never made it that far so I can't speak from personal experience pat year 4.

    Honestly I do find it a bit unusual not to be followed by MO until at least the 5 year mark As the years go by the chance of recurrence does drop off for TNBC especially after the 5 year mark. Most recurrences typically will be in year 2-3. But look at me I was at the 4.5 year mark so you never know. That being said if I was going to be followed by my family dr instead of MO I would be certain that he/she is ordering the same labs that my MO would order. I would have all results released to my MO so they can monitor also.

    Hope that helps. Sending good vibes for continued health!

  • luzio19130
    luzio19130 Member Posts: 4
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    I was diagnosed with TNBC in May 2023 in left breast and left lymph nodes. Had 3 months carboplatin, 3 months AC, all with Keytruda.

    Petscan after chemotherapy completed showed no response to chemotherapy. In December 2023 had bilateral mastectomy and 14 node removed. Pathology showed all 14 nodes had cancer so went back for full left node dissection.

    recent Petscan shows cancer met to right side lymph nodes. Onc says this is stage 4 because it crossed over.

    started Troveldy yesterday.

    i can't stop thinking about my life expectancy now that the cancer recurred so quickly and ugh.

    my name is Michele. I live in Philly

  • moderators
    moderators Posts: 8,055
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    Hi @luzio19130,

    We are so sorry to hear about the updated staging to Stage IV, and it's understandable that you're experiencing a lot of anxiety around life expectancy. We've often heard individuals share how surreal it all feels. What has your emotional support been like since receiving the news?

  • luzio19130
    luzio19130 Member Posts: 4
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    Thank you for reaching out. I have been seeing a psychiatrist for help coping with the news. She specializes in cancer patients and has been very helpful. I don't feel sick and knowing the cancer is growing in me is hard to believe. I have family support and very grateful. I'm the type of person who wants to know the hard facts from my oncologist unfortunately he can't say how long I have.

    I would love to hear from anyone with stage IV TNBC who has been on Trodelvy.

  • moderators
    moderators Posts: 8,055
    edited March 13
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    We're glad to hear that you're seeing a psychiatrist and have found it helpful, @luzio19130. We do have free weekly meet-ups over Zoom where we have other members who have TNBC and have been on Trodelvy. One of our groups is about to start in 10 mins, though the folks with TNBC on Trodelvy don't usually come to this group. They usually come to the Monday group at 2pm ET or Wednesday group at 4pm ET. If you're interested in checking it out for extra support, it is a nice addition to the BreastCancer.org forums. You can register here:

    Please keep us posted on how things are going for you! ❤️

  • cookie54
    cookie54 Member Posts: 694
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    Hi Michele sorry to hear your in this position dealing with MTNBC. I understand it is a tough pill to swallow ,it took me a year to finally digest it all. I am not on Trodelvy but have heard great things about cancer having a good response to it. There are a couple threads on the site regarding Trodelvy. I also like to know the facts but everyone's cancer is different so it's not unusual that the MO can't give you a time frame. There are many drugs now being used for MTNBC so try to be optimistic that there is no timeline right now on your life.I hope your able to ride the Trodely wave for a long time!

    Noticed your an Eagles fan, Philly girl..GO BIRDS! I grew up in South Philly and moved to S Jersey when I got married. However always a Philly girl at heart!

    Wishing you all the best with Trodelvy!

  • luzio19130
    luzio19130 Member Posts: 4
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    I'm scared. I registered for the Stage IV community chat for monday. The lack of control and not knowing if this drug will work, is feeding my fears. returning to the infusion lab for a new round of chemo, after 4 months free, is depressing. Love my onc but he seems less positive than at past appointments.

    I watched Sister Una Lived a Good Death on Prime. Very tasteful documentary.

    thank you to anyone who reads this. Michele

  • moderators
    moderators Posts: 8,055
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    Hi Again, @luzio19130 we're glad we'll also see you for the meetup on Monday. You are not alone!! And, Go Birds!