Just diagnosed with Stage IV Metastic: HELP PLEASE!!

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sweetchild
sweetchild Member Posts: 4
edited October 2017 in Stage IV/Metastatic Breast Cancer ONLY

I just got off the phone with a nurse who informed me that my cancer has spread to my sternum, spine, collarbone, pelvic bone, and femur. Therefore I'm newly diagnosed with Stage IV Metastic Breast Cancer. Which means they had to cancel my chemo session Monday. But she said there was still other treatments to try. I'm terrified, especially with a 7 year old who I want nothing more than to watch grow up and be here to give her advise about being a teenager and a young adult.

My question for you guys is this: is there any positive stories, survivor stories, bright sides? Im looking for hope and it's getting harder and harder to find every time I get a call from a doctor. Also, to any of you who have had treatment for Metastatic cancer, what do they do? What makes it different?

Any words of wisdom would be appreciated. Unfortunately, no one ever reached out to my last post :(

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited February 2017

    Hi!

    I'm not Stage IV, but I'm sorry to read about your progression. There are a number of BC patients on this site who have managed to maintain a good quality and length of life while Stage IV. Since you have bone mets, I would suggest that you visit the bone mets board for some ideas about how to successfully manage your condition. ((Hugs))

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  • MSL
    MSL Member Posts: 101
    edited February 2017

    Dear sweetchild

    So sorry you find yourself here, and so young. The beginning is the worst part, some here describe it as the shock and awe phase. I'm very recently diagnosed as well (nov 16) and like you was diagnosed de novo (straight off the bat) so had no prior preparation for dealing with this. I've also got young kids so I know how terribly frightening it is to think of leaving your precious children.

    The first good thing is you've found your way here. It's a wonderful, knowledgable and fun group of people who help each other deal with this crap.

    The second good thing is that there are many treatments available that can keep you going for many, many years. Plenty of women here are living with mbc for a long time and living well. There is also lots of research going on and new treatments being developed all the time so there is a lot of hope.

    My advice is this. You have bone mets, so go to the bone mets thread and introduce yourself, you'll be welcomed with open arms. Also join the women in their 30s thread, there are a couple of young women who've also just been diagnosed with bone mets (Apg and Casun) and they are very active on these boards and in tackling their condition. Also, join the Stage V fitness thread and get motivated to stay moving. There's also threads about fighting the dark clouds and life not ending with this diagnosis. Then read through all these threads all the way back - this helps immensely in understanding the treatments, language and options available. Put your type of cancer (ie. ER/PR/HER status) and your treatment in your profile so people know what advice to give you.

    Have a look at posts from people such as Zarovka, Cure-ious, ShetlandPony and Fitztwins - they are extremely knowledgeable and very generous with sharing it. People such as DivineMrsM and Heidihill are very uplifting. Finally get a copy of Bestbird's Guide to MBC - just go to her profile and she tells you how to do it (it's just an email and it's free). This is an invaluable resource to help you navigate this journey.

    The next few weeks in particular will be very hard sweetchild but the third good thing is I can assure you isthat you will get through them and you will feel find joy and normality in life again. The new normal as some here say.

    And know that you are not about die, you've got a lot of life ahead of you, you'll be there for your kid for a good while yet and there's hope everywhere.

    We've all been through it and we're all here for you.

    With much love and understanding, MSL

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  • hansaim
    hansaim Member Posts: 278
    edited February 2017

    I am so sorry that you find yourself here. You will find many inspiring ladies and success stories here. I was dx'ed 3.5 years ago when my son was 8 yrs old, so I know what you mean. It is difficult to find anything positive in the beginning. Once you have a treatment plan in place, you still start to feel better. If you have bone pain, please get help as it made much difference for me when pain and mobility were improved. Take a day at a time. Sending hugs.

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  • LindaE54
    LindaE54 Member Posts: 2,054
    edited February 2017

    Hello Sweetchild,

    I'm sorry for what brings you here, but you certainly are at the right place. I also encourage you to visit the bone mets thread where you will find a wealth of information. There are many treatments for Stave IV depending on pathology, ER/HR/HER. I was diagnosed a bit more than 3 years ago stage IV de novo like you. These forums have been a lifeline for me and I learned more on these boards than from any doctor. The first few months can be a roller coaster but I assure you that once you have a treatment plan in place, you will feel more in control. If you have pain, ask your Onc for pain meds until you find relief. Life be will much easier. Keep copies of all your reports to stay on top of things as you go along and should you need a second opinion. We are here to support you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2017

    Sweetchild - Sorry that you have found yourself in this club, but you should find a lot of information here. There are a couple long time stage IV threads which should help you to see that people can live with it and travel, enjoy things, etc. The life not ending and tips for dark times threads are great as well. As others have said, there are a number of options based on the stats of your tumors. Take some time to digest all of the information from your doctor, the boards and this site. It seems overwhelming to start, and you need to give yourself time to adjust to your new normal whatever that may become with your new treatment.

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited February 2017

    Ditto what everyone has said   The initial stages are the most difficult   Once you have a plan in place - it feels a bit more manageable.    You will have good days and more challenging days and eventually more good days  I am 3 + years out with MBC and although I think about it every day - - it does not consume my day.    I try to take joy in even the difficult days (my daughter is 18 and can try my patience beyond reason) but I am still here and even some of our fights are memorable (ask the neighbors - LOL)   Grab the joy where you can and there will be plenty

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  • Sister-Sister
    Sister-Sister Member Posts: 28
    edited February 2017

    Hello sweet child, stay strong, my name Selena, my sister Tracey had Matastasize Breast Cancer to her Lungs and Brain, 1st never feel stuck with the Doctor you currently have. 2nd always seek a second opinion. 3rd your food (taste) is going to change, however never stop eating. 4th remember you're never alone. Start making Memories with your Daughter, not because you're not going to LIVE, but because some days you may be to WEAK to Play with Her or take her somewhere. There's Women on other sites that have had Cancer for 10-15 yrs and still battling. They gave my Sister courage, I just believe she didn't have Great Medical Care. I'm Mi

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  • sweetchild
    sweetchild Member Posts: 4
    edited February 2017

    thank you all. You've made me feel much better, well as much as one could in this situation :)

    I will definitely be asking for better pain meds as my sternum is giving me hell! The rest I can't feel yet. And I will also be checking out the bone met board. Thank you all for your kind words and support. You give me hope in such a hopeless time. That makes this community invaluable to all the different types of us here :)

    Thank you all again

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited February 2017

    SC, there is hope. The initial shock of diagnosis brings on a roller coaster of emotions and is often one of the hardest times in dealing with the disease. You will hear and read that bone metasteses is slightly more favorable than if the bc is in the organs, as it may be better managed. Try not to project yourself into some unknown future, worrying about it. Focus just on today. Take this one step at a time. When you have a treatment plan in place, it will help.

    This forum is a great place for information, insight and support. There is also a thread on the stage iv section for mothers with young children. That may be helpful to you. Lots of other topics here to assist as well.

    I was diagnosed with stage iv mets to bones six years ago. I had chemo, rads, a lumpectomy and then put on arimidex and have been stable with no progression.

    Many of us have learned to look at this as living with breast cancer, not dying from it. Best wishes to you as you navigate these new waters.


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  • Bestbird
    Bestbird Member Posts: 2,818
    edited February 2017

    I am so glad you have found this forum although I'm terribly sorry for the circumstances that brought you here. You've received wonderful input, and as you'll soon come to find, many people live quite a long time with a good quality of life despite having bone mets.

    The initial weeks and months after a mets diagnosis are the hardest. Dealing with the shock and fear can be very difficult. But as others have said, over time it gets a bit easier, and you'll find many people who are doing well with a good quality of life!

    This is very important: Please remember to keep copies of all tests results and scans in case there eventually is a need or desire to have a second opinion from a specialist outside your medical network.

    You may also want to seek a second opinion at any point about treatment.

    I've compiled a 126-page booklet about Metastatic Breast Cancer treatments, side effect mitigation, and cutting edge research regarding the disease.You are welcome to request a complimentary copy by visiting the top of this page: https://community.breastcancer.org/forum/8/topics/831507?page=3#idx_73

    Two published books which you may want to read are:

    "Anti Cancer: A New Way of Life" by Dr. David Servain-Schreiber.The author, an MD, was diagnosed with a malignant brain tumor which he survived for nearly 20 years by following the science-based principles described in his book.It contains excellent information about diet and supplements, as well as emotional well-being.

    "Life Over Cancer" by Dr. Keith Block, an expert in integrative oncology who combines cutting-edge conventional treatment with individualized and scientifically-based complementary therapies.This book is an excellent resource for those who are interested in combining conventional and complementary therapies.

    Please post if you have questions, and wishing you a great outcome!


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  • indenial
    indenial Member Posts: 504
    edited February 2017

    Hi! I was diagnosed with mets last year, I also had a then-7-year-old child. It is so scary to think that we may not be able to be there for them as they grow. It has changed my parenting and challenged other choices as well. But I have been stage 4 for a year now and am doing very well. I live a basically normal life, aside from the side effects like fatigue, pain, etc. I sometimes have to take it easy but for the most part I am out and about, social, and relatively active. I kind of thought stage 4 would mean my life would change completely and I wouldn't be able to do normal activities, but I'm lucky that that hasn't been the case. I hope the same for you. I'm on anti-hormonal treatment only - my doctor also suggested ibrance as well, but I prefer minimal medication and figured I could "save" that med for progression. Basically you'll start on whatever treatment offers the least risks/side effects (probably anti-hormonals, either tamoxifen or an AI, with or without another med like ibrance or ribociclib) and stay on that med for as long as possible. Once you have progression, they'll switch you to a different med, and cycle through all the options. There are lots of options and some stay stable on a single med for months or even years! There are women here who have lived with mets for 10+ years, even a few who've made it 20 years or more! Plus, new treatments are rapidly becoming available... we are getting closer and closer to this becoming a chronic disease vs. a terminal one. There is hope!

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  • pajim
    pajim Member Posts: 2,785
    edited February 2017

    Sweetchild, welcome! Hang in there.

    Things will get better once you start treatment. Don't scoff at the little pill they are going to prescribe. It packs a punch and will [hopefully] knock the cancer into next week.

    In the meantime, ask the doctors for any help you need. Anti-depressants, sleeping pills, anti-anxiety, whatever. Just to get you over the hump.

    Six months from now you won't be laughing at today's self, but you'll have sympathy. We've all been in this spot. You know how you tell your child that time helps? It will here too.

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  • Casun19
    Casun19 Member Posts: 111
    edited February 2017

    welcome sweetchild! I was diagnosed in November of last year. I am in my 30's and have a young child. when I received my diagnosis I panicked, thinking I would be dead in a year but since joining this forum I am learning there are lots of possibilities to live a very long time.

    You have received some great advice already! once you get your next treatment plan situated you will feel more at ease. Become your own advocate and Ask for help. Heck, I asked for the pain pills and the anxiety medication. It made a world of difference in these first few months.

    Hang in there and check out the bone mets thread.

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  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited February 2017

    Sweetchild

    I am so sorry for your diagnosis. I feel the fear in your words and it takes me back. I was diagnosed Stage IV in February 2008 with bone (ribs & Hip), liver and chest nodes mets nearly right from the start. I was 41 and a single mom with two daughters 12 and 8 years old. What I can tell you is that when you get a drug that works... it is amazing .. and can keep you well for long stretches of time. Get another opinion and make sure you are comfortable with your plan. One day at a time. Try to stay away from statistics and survival numbers. They are outdated and treat breast cancer like it is just one disease. With all the variations, you cannot lump it together.

    By the way, my then 8 year old is graduating from high school this year and I have been NED now since June 2008. Don't count yourself out!!!

    Jen

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  • Andrea1111
    Andrea1111 Member Posts: 14
    edited February 2017

    Hi. I was also just diagnosed with Stage IV metastatic breast cancer too. I have a 9 year old and I have been grieving and trying to pick up the pieces to get hope back and keep on going. I just started Ibrance and Leterzole two weeks ago. I will get a scan in 5 weeks to see if things are shrinking or staying the same. i have read some encouraging stories about people that have and are still living with this after 15-18 years. There are also trials now that should be wrapping up this year and bring us NEW medicine to help. I think the best way we need to do this is to think positive and happy thoughts and continue to dream of our future and dream of seeing our children get through College and help raise the grandchildren one day!!

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2017

    Ajones1111, wise words! We're thinking of you, and routing for all of you every step of the way!

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  • hodges
    hodges Member Posts: 17
    edited March 2017

    I am so sorry that you received this news, I know it must have have been so hard to take in. I was diagnosed at age 50, and with no children, but understand feeling overwhelmed. I know of several women who live with stage IV for many years. I plan on joining that number. Your child and you will remain in my prayers.

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  • Metster-Mom
    Metster-Mom Member Posts: 30
    edited August 2017

    Wow - we have a lot in common. I was diagnosed with mets in July - 2 spots: my left sacrum and coccyx. I'm 38 (for 2 more days) have a 9 year old son. I have been SO encouraged by everyone so far. I wake up with a huge pit in my stomach and have no appetite because of the nerves. I'm finding that cannabis oil helps with my appetite. I'll be starting Ibrance and Letrezole at the end of the month. Although I'm not looking forward to any SEs - I can't wait to be on it so I feel like I'm fighting. I just had my ovaries out and am still taking Tamoxifen. The best thing I can do for myself is to keep busy.

    Sweetchild - how are you doing now?

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  • MelZ
    MelZ Member Posts: 9
    edited October 2017

    Hi - today I received the dreaded diagnosis of liver mets. I'm so scared. I'm 41 and my girls are 4 and 6. My doctor is admitting me for further testing. Your stories do inspire me.

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  • Iwillwinthisbattle
    Iwillwinthisbattle Member Posts: 1,076
    edited October 2017

    I was diagnosed in 2011, Stage 4 and have been NED up until just a few months ago. This is completely doable and there are so many new treatments out there. Try to stay positive abs keep pushing forward! You can do this!

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