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9 years metastatic

I came on the board because I was freaking out about a pain in my rib. (Is it back? Oh, my god, I'm toast. This is it. I'm dead. Gotta give my stuff away. Find a new wife for my husband. You know the drill.)

Anyway, when I read through other people's posts I felt this weird thing, hope. So many have been going along, doing what needs to be done, surviving, living with metastatic breast cancer.

Then I thought maybe by talking about how I'm still still here 9 years later (first felt symptoms June 2011), I can do the same for someone else.

It's been a long road, sometimes smooth, sometimes rough. I was very lucky that the mets responded to Taxol and Herceptin - my liver was covered. Had a flare up maybe 18 months after Taxol when was just on Herceptin, then got 5 years out of Kadcyla. I only stopped Kadcyla when I began to react to the infusions. Now I'm on Herceptin and Perjeta.

Reading what others posted reminded me there are other drugs to try and I can deal with side effects, although I work hard to minimize those. So I think I'll take the personal ad I wrote for my husband down and chill a bit more. I really appreciate everyone's wisdom here. Peace to you all. We sure deserve it.



  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638


    Good to see you and congratulations on your milestone! I’m almost at the nine year mark as well. We are called outliers or exceptional responder. I can’t wait for the day when we’re called typical or better yet, cured! Take good care

  • BevJen
    BevJen Member Posts: 2,341


    Thanks for posting your story. It is indeed a beacon of hope for everyone.

    I can also add to hope for others as well. I was originally diagnosed in 2003. I had my first metastasis (single site, to my cervix) in 2006. I'm still here! No issues from 2006-2018, and only on letrozole,when my tumor markers started going up. In May 2019, I was diagnosed with mets to my liver and now also bone mets, but all is stable. And I'm still here!

    I wish, as Exbrn Girl said, that we will all be cured.

  • gonegirl
    gonegirl Member Posts: 1,022

    BevJen. That's wonderful you've been doing so well

  • cowgal
    cowgal Member Posts: 625

    You ladies are inspiring. Thank you to you and others on here that lead the way for us newer stage IV ladies who hope to also have success with treatments and hopefully a cure will come soon.

  • aprilgirl1
    aprilgirl1 Member Posts: 743

    You ladies are inspiring, thank you for posting! My goal is to be an outlier with you, and I am hoping and praying that a cure for us will come soon!

  • gigil
    gigil Member Posts: 896

    Thanks for the encouragement everyone. I am not completely diagnosed yet. I have had rib pain, had a CT, broken rib. spots on vertebrae. I have had a visit with an Onco doc, have a mammo and ultrasound coming up Monday and also a PET scan on Wednesday. I had my initial diagnosis in 2011 and have done well since then. I am blindsided by this although the thought of recurrence never leaves us. I don't know which way to turn right now. My husband tries to help but he has a very demanding job and we need his income. I am cut off from sisters and family because of COVID. They know we are having some concerns here, but I don't even want to get them too alarmed right now. I went on my medical record and saw that my CA27-29 was 171. I am terrified right now. I am used to mammos and even ultrasounds, but how does a PET scan go? I appreciated this string of conversation since there are people here who have lived with Stage IV for a long time. I would appreciate any insights any of you have. Thanks, GiGi

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638


    Since this a thread celebrating gone girls 9 year anniversary, I’ll give you a quick description of how a PET goes.

    - You may have some dietary restrictions before the scan and you will fast for a number of hours prior.

    - You will receive an intravenous injection of the nuclear trace materials.

    - My facility has patients lie down in a dark room for an hour. Every facility has some version of “quiet time”.

    - Then s an itself takes about 20 minutes. The machine is quiet and the tube seems shorter than an MRI machine, so not too claustrophobic feeling.

    You can pm me with questions but let’s stick to celebrating on this thread

  • gigil
    gigil Member Posts: 896

    Thanks for the description, sorry for the intrusion

  • illimae
    illimae Member Posts: 5,514

    Congrats 🎉

  • arissasmom
    arissasmom Member Posts: 2

    What a wonderful and inspiring story!! Thank you for sharing!

  • divinemrsm
    divinemrsm Member Posts: 5,891

    gonegal, just came across your post from June, it’s always good to “see” you and love hearing of your longevity living with this disease. Hope is a beautiful thing to share!

  • gonegirl
    gonegirl Member Posts: 1,022

    Divine, it is so good to see you too. I'm glad we're both still here.Smile


  • tulumsoto
    tulumsoto Member Posts: 2

    Thank you for posting your story.

    I have been diagnosed with stage iv breast cancer sept 23rd.

    I have 4 small masses in my right breast, node in collar bone and several other nodes

    found throughout body including one in a lung. It has spread to bone in several places.

    No pain.

    I feel like my life is over.

    the dr said it is fast growing and nothing i could have done to discover it sooner.

    i feel guilty for not getting routine mammos due to the pain they cause.

    i feel like the diagnosis is my punishment for my lack of care to my self.

    I am so scared. I feel lost. I feel defeated.

    I get port in today and start chemo next week.

    I read a post about "Carmelle's Success Stories thread has been a life saver!" from a

    post I read and decided to post something because i am falling apart. i suffer with OCD

    so as you can imagine, i am all over the place.

    I am so scared.

  • chicagoan
    chicagoan Member Posts: 937


    I am glad you saw this thread and hope you feel encouraged by Gonegirl's 9 years of living so far with MBC. I can relate to your feelings. I was diagnosed 4 years ago with MBC and was at first angry with myself for not taking better care of myself. Well now all of that has changed. I feel much better now and have made taking care of myself a top priority in my life. If you like to read, I suggest this book. "Cancer as a Turning Point" by Lawrence LeShan. It has lots of encouraging stories and exercises to help you figure out how to change your life for the better after a cancer diagnosis.

    I hope your treatment goes well. As soon as I could tell my treatment was working, I started to have a lot more hope and also felt better. None of us knows how much time we have but the book has helped me live the days I am given with more joy and peace. Best wishes to you. May God bless you.

  • ninetwelve
    ninetwelve Member Posts: 328

    Congratulations on nine years! Well done, and may you thrive another nine, and beyond!

  • gonegirl
    gonegirl Member Posts: 1,022

    This is terrifying stuff. Frankly, it took me a few years to finally just get tired of being scared and be at least less scared. I also got emotional support. I worked with a counselor but also contacted Imerman Angels and Sharsheret. They were pivotal. But there's so much more help out there.

    I hope treatments are going well as they can go and you're finding some peace.


  • hoisholt
    hoisholt Member Posts: 9

    I’m new to this having been diagnosed with metastatic in April of 2020 one year after my mastectomy and a little less than five years from my lumpectomy (same breast). Ibrance and faslodex and the cancers have not grown although I may have a liver lesion but it’s too small to biopsy. I seem to be ahead of the game as far as side effects are concerned. But I am obsessed with this disease and trying hard not to be. My support is a wonderful daughter and I fear I will overwhelm her with my concerns so try not to involve her with every aspect. I see death at every turn so am grateful when I hear these stories of a life beyond a few months. I see my oncologist every two months when I get scans. Beyond that I have little support. It seems everyone including me would prefer not talking about it. Does it get easier as we live with this disease longer.

  • moth
    moth Member Posts: 3,293

    hoisholt, welcome to the forum. Are your mets only in your liver so far? We have a fairly active liver mets thread here

    there is also Mel's living room where we hang out

    & many other threads to discuss all sorts of issues. There is lots of support here!

  • amontro
    amontro Member Posts: 184

    Gonegirl and tulumsoto -

    I just came across these posts. I was diagnosed over 12 years ago, from, the start, with stage 4, mets to lung and spine. I started on herceptin and I'm still on it every three weeks. There have been no changes in my mets, so far. I had a major problem with Zometa (for bones), and you can read about it in other posts if you want.

    Many of us question ourselves when we're first diagnosed and have been told we don't have long to live. We can only live each day as best we know how. Sometimes there is a purpose in our being here, and it is an interesting journey to find out why.

    My best to you and my other fellow "outliers".

  • Nonni2015
    Nonni2015 Member Posts: 4

    Hello -

    I was diagnosed with Triple Negative BC in January, 2019; had surgery (mastectomy, no reconstruction); 18 lymph nodes removed, chemotherapy (started w/Adriamycin but couldn't tolerate so had to change it up, had Taxol as well as methotrexate and florucidicile (may have spelled wrong) and then 6 weeks of 5 days per week radiation. I had a PET scan end of October 2019, Deemed cancer-free, no sign of disease, no metastasis. Now, 18 months later, recurrence. Surgery not an option, oncologist recommending oral chemo or oral immunotherapy, possibly combining both, that is IF the cancer has stayed local. Today, I had a PET scan to determine that...I pray with everything I have that it has, in fact, stayed local. The results are posted on my medical record in the patient portal. I just can't bring myself to look at it. I have another appointment with the doctor next week where he will go over everything. I can wait for the results until then, if I look now and it has spread elsewhere, I feel I will go crazy. I live alone and this is very hard to deal with.

    For those that are experiencing metastatic bc and learning to live with it, how do you navigate life? I want so much to see my granddaughters grow up (one is 5, one is 9 months and the other is 6 months) Realistically, I know this is a stretch to think I might. I didn't tolerate the chemo well the first time, I really can't fathom having to deal with it again. If anyone would like to share their experience with living with metastatic breast cancer, I would greatly appreciate it. Thank you.

  • gonegirl
    gonegirl Member Posts: 1,022

    Oh, Nonni. I am so sorry you are going through this. Besides the disease, the biggest challenge for me has been how to stay sane in the middle of all of this, especially in the uncertain scan times. I've learned to schedule the doctor visit for just after the scans, maybe 2 days later. The other thing I do is call for support (friends, counselors, my Imerman Angel), do what I can to distract myself with activities, make every effort to just deal with the moment of that day (one minute at a time), and use Ativan as needed. As Pete Davidson said on SNL once, ain't no shame in the medicine game.

    I'm praying your news is better than expected and I'm just so sorry you are going through this.


  • moth
    moth Member Posts: 3,293

    nonni, I hope your PET scan news is good & that's it stayed local and not spread anywhere. I'm a mTNBC & the sad fact is, metastatic TNBC is one of the suckiest of all diagnoses. If that ends up your dx, I suggest popping into the Triple Neg Stage IV thread. The thing is, even though we're not statistics, our tumor profiles guide our treatments (and also do tend to predict our prognosis).

  • positive2strong
    positive2strong Member Posts: 209

    gone girl

    Thanks for the encouragement. I was just diagnosed Stage IV liver lungs bone

    Today they did a liver biopsy

    Still waiting on the biopsy results but I can't not put any weight on my right leg

    Now they say there is a tumor there and I will get radiation tomorrow.

    My primarily meeting with onc after ct scan she said they are so many new therapies in last 2 years,

    Said I would get a shot and be put on pills and of course radiation.

    I have told my son but no one else

    I have read stage IV at the beginning has beeper data at longer survival

    My pain leg started Jan and just got worse

    I started so many cleaning out projects then and then couldn't complete them y house is like a war zone

    I wonder too about picking out a gravesite, and inquiring about inheritance tax and throwing out so much paperwork just have been at the cancer center every day

    I so congratulate the anniversaries of the woman . It gives me hope


  • gonegirl
    gonegirl Member Posts: 1,022

    Positive2, it is overwhelming. I hope the radiation helps with the pain.

    For me I had a Will and advance directive before diagnosis - a lot of death in my family prompted me.

    I also did a lot of death cleaning but had to stop at a certain point because it was depressing me. Still... I know how you feel. Maybe call the folks at Imerman Angels to get a mentor. Or call LBBC or other organizations that provide support. This is rough and getting help is key.


  • a-friend
    a-friend Member Posts: 10

    Just started this new journey about a month ago. I have it in my eye, brain and lung. Came from breast cancer in 2014. Not real savvy with chat sites, but I’m excited to find people to talk to so I cannu

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638


    Welcome, though sorry that you're joining us. To help you get familiar with bco, here are a few tips:

    -Make your signature line public. This will allow anyone who reads your posts to know about your bc treatments so far which can help others respond to you as they will know your background.

    - Check out the entire stage IV forum. There are existing, active threads on almost every stage IV topic you can think of. We have very active threads for brain and lung mets.

    - Do check the date of the last post made to a thread before responding. Some threads have been inactive for years and if you are asking a question of a member, there is a chance they are no longer active on bco. You can also check the latest activity date to see if the member has been active lately.

    This thread was started by a member who has been living with mbc for 9 years. I hope you reach that mark and many more! Take care.

  • a-friend
    a-friend Member Posts: 10

    Thank you .