My 3 years with NED is over

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Tilda
Tilda Member Posts: 91
edited August 2016 in Stage IV/Metastatic Breast Cancer ONLY

Hi Friends.

I have not been on here much lately, tried to just move on with my life and family. However, had my routine scan and three days later I got the call at 8AM; the cancer is back!!! By 2 PM the same day my MO had me in the Pulmonologist's office for a consult. There is a 5cm mass, and 2 x 1.5cm lymph nodes in my left lung and 2 sub centimeter lesions in my liver. Tomorrow morning I'm having a lung biopsy to determine whether it is still breast cancer or possibly a new primary cancer (lung). As per my MO he's pretty sure it is BC since it appears to be in both lung and liver. I have been dancing with NED for 3 years but unfortunately the music has ended. This is making me worried of course but knowing we're all in his together I draw strength from reading all the posts from you guys. This is not the end of the road but any encouragement, prayer and/or well wishes or recommendations are welcome.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited August 2016

    Tilda, oh no! I have been NED for several years so I understand what a shock this must be. Glad you and your team are moving quickly to determine what's going on.

    Hang in and please keep us posted.

    Wishing you the best,

    Tina

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  • zarovka
    zarovka Member Posts: 3,607
    edited August 2016

    Tilda - hang in there. Once you and your onc get that biopsy back you will find have options, then you will have a plan and you can go back to moving on. HER2+ has seen advances in treatment ... you might tune into the HER2+ thread to find out where things stand. That is where you will get concrete information.

    >Z<

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  • mainegirl
    mainegirl Member Posts: 62
    edited August 2016

    Dear Tilda, I'm so sorry you are dealing with this again. It's such a shock to get this news and have to deal with the decisions again. I got the news in July and it has metastasized to lymph nodes. I chose to go to Mass General in Boston and enroll in a trial. I see we're the same ER/PR+, HER+. Standard treatment is Taxotere, Herceptin & Perjeta. I just started the trial and it is targeted therapy, so it only goes after cancer cells. I'd be glad to send you details if you wish. Just private message me. The team I'm working with is encouraging. Immunotherapy is on the horizon for breast cancer. Hugs to you.

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  • mainegirl
    mainegirl Member Posts: 62
    edited August 2016

    Dear Tilda, I'm so sorry you are dealing with this again. It's such a shock to get this news and have to deal with the decisions again. I got the news in July and it has metastasized to lymph nodes. I chose to go to Mass General in Boston and enroll in a trial. I see we're the same ER/PR+, HER+. Standard treatment is Taxotere, Herceptin & Perjeta. I just started the trial and it is targeted therapy, so it only goes after cancer cells. I'd be glad to send you details if you wish. Just private message me. The team I'm working with is encouraging. Immunotherapy is on the horizon for breast cancer. Hugs to you.

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  • Lita57
    Lita57 Member Posts: 2,437
    edited August 2016

    Tilda, I'm so sorry Mr. C has come back for another prolonged visit. Stage IV is a damn dirty bastard. As the other ladies said, there are new treatments out there and you WILL have a plan of attack.

    But it's still emotionally devastating to get this news after 3 years. It's mentally exhausting.

    I wish I had better words of encouragement. All I can do is pray for you and pray for us all.

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2016

    Sending positive thoughts, one in particular: you see NED again, which really does happen, even if that is hard to believe now.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited August 2016

    I am so sorry.

    I remember that call well after 5 years of NED. It was like being kicked in the stomach. One thing to know intellectually that it should return; a totally different thing when it actually happens. Hope that your medical team is able to find a protocol that works for you. Take the time you need to re-find your balance.

    *susan*

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  • sueopp
    sueopp Member Posts: 1,541
    edited August 2016

    I know it's awful Tilda (been there). But given a bit of time, it will be ok - you will be right back in there, fists up and ready to smack those boogers back. One step back, two steps forward - the Stage IV cha cha. Sending love and support. SUE

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  • Kandy
    Kandy Member Posts: 1,461
    edited August 2016

    Definitely a kick in the stomach. I hope your biopsy goes well. Hopefully new treatment will turn it back around. Thoughts and prayers with you.

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited August 2016

    Well dragt!

    New biopsy always smart.

    looks like you haven't been on prejeta, or Ibrance or tykerb (all which helped me a lot), great drugs to try.

    progression stinks, but after a little progression depression, and on new treatment onward and upward!

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited August 2016

    I'm so sorry for you news Tilda. The biopsy is a good idea and can tell you if you are still triple positive. If your next move is to add perjeta, I hope you have as easy of a time with it as I have. No SE's at all after 2 years. I can't speak from personal experience about the other HER2+ drugs, but there are lots of women here who are a wonderful resource. Please check back in when you know what your new treatments will be.

    In the meantime...sending hugs.

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  • pajim
    pajim Member Posts: 2,785
    edited August 2016

    First progression sucks. I have no idea whether every subsequent progression makes you feel just as awful, but the first one, man oh man.

    Let me say that I've met women who have never had a first progression and I'm thrilled for them, but that didn't happen for me either.

    The music may start again. Seriously. You just need a new drug to turn the switch on the turntable. And I really hope it happens for you.

    Have a hug. Have two -- they're as large as possible.

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited August 2016

    aww Tilda, Scans are so rough anyway, but then waiting and not hearing good news is so heartbreaking. However, once a new plan is made you will be off and running again and could very well achieve NED again very soon!

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  • kt1966
    kt1966 Member Posts: 1,326
    edited August 2016

    Oh, I'm sorry Tilda.

    I hope tomorrow's biopsy goes well and that you and your onc come up with a good plan to reunite with NED

    Thinking of you

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  • pwilmarth
    pwilmarth Member Posts: 235
    edited August 2016

    Very sorry to hear your Dance with NED has hit an impass. Good news is that TDM-1 is now the second line drug for HER2+ BC and it's had very good results. - let's hope that they move you quickly to the new drug.

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  • Tilda
    Tilda Member Posts: 91
    edited August 2016

    Thank you all for your support and great suggestions. You girls are the best. Yes, it sucks getting these news but I still have hope and I know there are more drugs for me to try. This morning I went to the hospital for a bronchoscopy/biopsy of my left lung. Unfortunately, it didn't work as well as the Dr. had hoped. I'm doing well but as it turned out, the one tumor has wrapped itself around the bronchial stem leading into the lung. While doing so, it has made the opening so narrow that the bronchoscopy tubing did not fit through the opening to enable a biopsy or to take any "inside" pictures of the left lung. I might need to have a stent put in to make my left lung inflate because as of now, not much air is entering that lung. No wonder I can't breathe well lately :{ However, the Dr did take several biopsies at the opening in front of the blockage and in the trachea that will hopefully contain enough cancer cells to use for the additional testing needed. I should know the answer within the next 48hrs. Should it by any chance not be sufficient, I will have to go in for an "ultrasound guided" biopsy next week which is a little bit more invasive and complicated (I have faith the Dr got enough). The procedure was fast and easy and went without any complications. Now the wait begins.......

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  • zarovka
    zarovka Member Posts: 3,607
    edited August 2016

    The diagnostics are the worst part. The procedure, the waiting, the figuring out what the results actually tell you ... oy. We have a special thread for people waiting for results that I find really helpful at these times.

    The folks on the lung met thread are very knowledgeable. You'll get a warm welcome and good information from people who have gone through it.

    The folks on the HER2+ thread are on top of current treatment options and what it is like to live on them. I believe they mostly hang out here.

    It does get better once you have a plan.

    >Z<

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  • AmyJM
    AmyJM Member Posts: 665
    edited August 2016

    Tilda,

    So sorry to hear your news. Sending lots of love and hugs and prayers that they got enough at the biopsy to not have to go in again and that they find a treatment that will knock things back again!

    Love and hugs, Amy

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