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Newly Diagnosed liver/bones LOOKING FOR LONG TERM SURVIVORS/HOPE!

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Hello there,

After 10 years of stage 2 breast cancer, 3 months ago I discovered it has returned stage4 to my bones/liver. I thought it was all behind me… I am finding it so hard to cope & terrified of my future, especially being a mother of a young child.

I am hormone positive, Her2-
I would love to hear from others with similar diagnosis doing well & living this long term!

Thanking you all in advance X

Comments

  • 1galfromdownunder
    1galfromdownunder Member Posts: 2
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    I hope this is in the correct section, as I’ve had no response?

  • mavericksmom
    mavericksmom Member Posts: 1,205
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    Yes you had the right section to post in. I am not stage IV, and technically I am not supposed to post here, but I will just to bump your post to the top. I have had breast cancer three times in the last 20 years and expect to have metastasis at some point, so my heart goes out to you!

    Sending you tons of cyber hugs! Know that someone who can offer you support WILL post soon.

  • AJ
    AJ Member Posts: 219
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    I was also shocked when diagnosed with mets in my liver lungs and brain after 9 years. I also thought it was behind me. When I started seeing the doctors and starting meds (including anti anxiety meds) I calmed down a bit. I realized that I’m not going to die tomorrow but am using the time to “get my affairs in order “ and to do things I want to do.

  • emac877
    emac877 Member Posts: 688
    edited July 2023
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    1galfromdownunder - I will post the link to the liver mets thread for you. There is also a bone mets thread that is fairly active. If I can save this draft without losing it I will try to attach that link also. It can be hard to find the active links just using the search bar. I think both of those communities would have a lot of hope and good suggestions for you. I have bone mets and was recently diagnosed with spread to my lungs. There are some who have lived with it for longer. Please don't give up hope. I got almost 4 years on my first line of treatment. Now I just have to find another one that works to get me stable again. I'm not going to say it's easy because there's a lot of up and down with it but reach out to those going through it. That has been a huge lifeline for me. I'll also link you to a general thread called My Husband My Life My Love My Cancer. I think it's one of the most active threads on here and it is a great group of people that has offered me a lot of support. Hugs to you. This is not an easy road but it is doable. Lean into the support when you need it. ((❤️))

  • illimae
    illimae Member Posts: 5,627
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    1gal, I’m not so similar but I was diagnosed stage IV from the beginning at age 41 and I easily remember the shock and thoughts that I wouldn’t live long. I have mets to bone and brain, the brain mets really freaked me out but after 7 years and a few chemos, I am currently feeling great and long term planning my 50th birthday in 2025. You have every reason to believe that you can have many years ahead, it won’t be a breeze but there are several effective treatment options and more on the way.

  • simone60
    simone60 Member Posts: 952
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    I rarely sign in but I saw your post this morning and wanted to respond. I struggle sometimes with what to say to newly diagnosed people. I'm sorry you find yourself here. It's been 4 1\2 years since I had a recurrence in my bones and several lymph nodes. I too had a long time period (17 1\2 years) between my initial dx and M BC diagnosis. There are some women that can live a long time but I don't want to sugar coat anything. It's hard mentally and physically to deal with this disease. People do different things to help and hopefully others will chime in. I found it is helpful to join a support group. I also take a antidepressant. I put myself first now, doing what makes me happy. I also found it helpful to educate myself on treatments both current and those in clinical trials. I keep a list of clinical trials that are promising and try to follow their progess.Be your own advocate, make sure your docs listen to your concerns. Don't be afraid to get second opinion s. It is very scary at first but it will get better once you have a treatment plan in place.

  • AJ
    AJ Member Posts: 219
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    @1galfromdownunder therapy and antidepressants are saving my sanity. Also, the zoom meetups here are wonderful. Three different one for metastatic cancer and one for under 45. Check it out!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,969
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    Like simone60, I am not always sure how to address those who are new to stage IV. There is definitely a fine line between reality and sugar coating. I just had my 12 year anniversary at stage IV, though I was de novo with a single bone met. The crazy thing about bc and mbc is that there aren’t any good predictive tools and treatments that work well on one person may do little for another even if their cancers look similar. This is a very weird way to live but it’s the current reality.

    I have never had chemo nor any of the newer drugs such as Ibrance or Verzenio (they had not been approved yet when I was dx’ed). I did have rads to the bone met and have taken one AI or another and that’s it. I don’t believe that any mo nowadays would prescribe a similar tx plan, yet for unknown reasons, it’s kept my bc from further progression. This is my long winded way of saying that mbc is still quite the mystery and although we have more tx options than ever, finding the magic bullet is elusive and unpredictable. This doesn’t make things hopeless but tx involves individual trials of drugs which may or may not work for any given person. I guess the goal for many of us is to keep surviving long enough until the magic bullet is found.
    This is not an immediate death sentence and many do far better than they expected but there’s currently no way to predict how an individual will do. Take good care.

  • moderators
    moderators Posts: 8,230
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    @1galfromdownunder, receiving this news is already difficult, but I understand that the stress of having young children adds to this tenfold. We are glad that you have found this forum, and are actively seeking support. @emac877's thread suggestions would be the best place to start, as those are the most active threads specific to your diagnosis, with My Husband, My Life, My Love, My Family, My Cancer being the most active thread for folks with MBC. As @AJ mentioned, we do hold free weekly virtual meet-ups over Zoom for folks with MBC. Many folks find the groups to be helpful because they are able to connect with others who are going through something similar, and understand what they're feeling better and share knowledge from their experiences. The link to see dates and times, as well as register are available here:

    I am assuming you live in Australia, so I believe the best one would be our Tuesday at 8pm EST group, which would be Wednesday at 10am for you.

  • seeq
    seeq Member Posts: 1,116
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    1galfromdownunder - I'm not sure if I'm what you're looking for as a "long term" survivor. I was dx'd de novo (Stage IV from the beginning) ER/PR+/HER2- with liver mets. My first oncologist told me to think in terms of years not months. I'm over 3 years into my first line of treatment. I know I have more treatment options available after this. Every case is so different and everyone responds to treatment differently. The best you can do is 'your part'; show up and keep going.

    BTW ‐ for your own sanity, don't put much stock in Google search h results older than 2015; so much has changed since then.

  • divinemrsm
    divinemrsm Member Posts: 6,163
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    galfromdownunder, I am sorry that you are newly diagnosed with metastatic breast cancer (mbc). It is often a roller coaster ride of emotions at the beginning. It sucks that this reared its ugly head ten years after your first diagnosis of stage ii bc, and, since you have small children it is terribly and incredibly unfair to say the least.

    Yes, there are women who’ve been at this awhile. I’ve learned to frame this as living with mbc, not dying from it. Surprisingly, I have still experienced some of the best times of my life since I was diagnosed.

    You want to know of long term survivors. They are out there. None of us can say how we will individually respond to treatment, so one thing that can be helpful is to learn to live more in the moment. Try not to project yourself into a future you cannot see. Try to live the fullness of one whole day. Then wake up the next day and do it again. Repeat and repeat. It’s easier said than done, but worth the effort. I learned to soak up the good moments, try to cut the crap and clutter from my life, simplify, keep obligations to a minimum and add more of what I want to do every chance I get(this involves everything from travel to bingewatching a streaming series, taking a walk, trying a new restaurant and all points inbetween). This is a process, it does not happen overnight.

    Also, I started a antianxiety medicine after being diagnosed and it helps take the edge off of the fear that was trying to overwhelm me. If you think something like that would help you, ask your docotr about it.

    I hope you find good support on this forum. I wish you all the very best.

  • shanagirl
    shanagirl Member Posts: 374
    edited July 2023
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    Hi @1galfromdownunder I sympathize with your situation. Suddenly being diagnosed with stage IV Mets after 10years of thinking you’ve beat this beast is very discouraging. I thought after 13 years of no evidence of Disease (NED) I was finally free and wasn’t even thinking about my stage IIIA diagnosis and treatment back in 2009…. I never stopped my Follow-Up s with my oncologist and suddenly after my last blood test with him in December he calls me into get in as soon as possible in January for scans, showing bone Mets throughout my thoracic spine, ribs, sacrum, sternum & clavicle. WOW 😯!!! I was shocked and only now coming to terms with it. Since January 2023 DX I’ve had biopsies, scans, and minor surgical procedures with a gyno oncologist to be sure nothing had spread to the uterus. All occurring win Jan & Feb 2023. What a way to start the new year. I’m just realizing now I was diagnosed with stage IV MBC on my 13 year cancerversary. This whole disease is very insidious and hides out in your body util suddenly it decides to show itself again either bones, liver, lung or brain. This is all of our experiences here with our own stories. The one thing I learned this week and I will share with you is that there are so many new and successful treatment options since 2017 that were not around before then. These new breast cancer drugs and monoclonal antibodies & hormonal therapies are giving women and men battling this disease opportunities to years of life to be with their loved ones. So the girls who’ve already posted have given you great advice. Be encouraged and hopeful. You will get thru this. 💗hugs to you and I’m sorry that you are dealing with stage IV.