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Need Your Tips for Members Newly Diagnosed Stage IV

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245

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  • rosetide
    rosetide Member Posts: 2
    edited February 2017
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    Hi,

    I have been in treatment for almost a year now, I was diagnosed in March 2016 but had it long before was misdiagnosed 6 months prior. Longgggg story short lol! I am still here ladies, and just completed today I think my 16th treatment?? I have stopped counting because it is now just a part of my routine. Although it has been tough to get to this point it is doable. I will tell you not to worry about the dying part because in life NO ONE and I mean NO ONE is guaranteed their next breath. So just take that thought out of your head. When He is ready for you that is when your time will be so up till that point do your part. Eat healthy, get rest, relax, slow down, take some good deep breaths during the day, look up to the sky, smile, laugh, play with your kids/pets, soak up life because this is just a lesson. A lesson hopefully will be a way to shape you as a person. I will say that this walk is not about being comfortable or being in control. So if your use to those things get rid of them because a. YOU ARE NOT IN CONTROL lol! and B. you are not going to be very comfortable....BUT you will reshape your soul, you are about to learn how powerful and strong YOU really are. YOU are about to find out how much Our Father in Heaven LOVES YOU and will answer your prayers in His time. I should be dead ladies, He has other plans for my life. I have found that I have control over my life AFTER this one...how is that ? Obedience. Live a life the best you can in standing with your church. When you find yourself feeling sorry for yourself lol! because it is going to happen...get up and help someone else because guess what? there is someone out there that has it way worse than you. All in all, get on your knees thank the Good Lord for all your blessings because just by being able to read this your already blessed beyond~ Pray, Hope, and Don't Worry! Peace B with U :)

  • cliff
    cliff Member Posts: 86
    edited February 2017
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    I have stage 4 breast cancer. I found out after the surgery, feeling sorry for myself, I went to the internet, and nearly did away with myself, the stuff on there is so bad. I found this web site, and the truth is here. I have been on tamoxifen for 10 months now, and because my plumbing is different than gals, my side effects are different. the last 3 bone scans have shown those lumps of cancer have reduced in each one, it will be quite some time before they are gone, but I will put up with side effects as long as they are going, because, I HATE CANCER. a stage 4 diagnosis is NOT a death sentence. modern medical science is pretty good these days.

  • Andrea1111
    Andrea1111 Member Posts: 11
    edited February 2017
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    Hey. How long have you been taking Ibrance and Leterozole?

  • Wiegp22
    Wiegp22 Member Posts: 167
    edited February 2017
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    Absolutely love this

    Paula

  • hodges
    hodges Member Posts: 8
    edited March 2017
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    Thank you, I received my guide today! You list very beneficial tips, hugs.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2017
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    Good morning. My initial diagnosis was December of 1990, and I have been fine for 26 years. The mets to the bone were discovered by accident during a CT scan for something entirely different. I have just started my first shots of Faslodex a week ago today and took my first Ibrance yesterday. My initial tumor was small (1 cm, as I recall) and I had one positive lymph node. Back then, I was only told that my tumor was estrogen positive and nothing beyond that. I took Tamoxifen for 15 years and then was switched to Evista. Can't help but wonder if staying on Tamoxifen might have protected me. Today is my 71st birthday.

    How are you tolerating the Faslodex and the Ibrance so far? I feel nothing so far, but I have just started. Thanks, and good luck to you!

  • jobur
    jobur Member Posts: 493
    edited March 2017
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    My heart goes out to those newly diagnosed, you are probably in the shock and awe stage after learning you have mbc. But please don't plan your funeral just yet! (As I did when 1st dx'd) There are many new tx's (and more in development) that will allow you to live a pretty normal life for many years to come. If you are in pain, please make use of whatever pain meds you need now and believe that you are very likely to feel better after starting treatment. If you have no symptoms, so much the better! Make sure you have an mo you feel comfortable with. Write down a list of all your questions and insist on answers you can understand.  I believe (some will disagree) a biopsy of your mets are important for best tx results as it is possible for mets characteristics (ER/PR/HER) to be different from the primary.  Arm yourself with knowledge and get help (rx or/and counseling) if you start to slide into depression. The same goes for sleep problems, do whatever it takes (rx or ?) to get good rest. It is essential to healing and dealing.

    Think carefully about who you want to know about your mbc. You can't "untell". Be patient with family and friend's reactions to your condition. Some people may come off as uncaring or inconsiderate because they just don't know what to say or do. Give them and yourself time to adjust to this new reality. Accept help when you need it. This is easier if you keep in mind how good it makes you feel when you can help others.

    This forum is a fantastic place for both information and support. So glad you found us!

  • Wildwoodbaby74
    Wildwoodbaby74 Member Posts: 1
    edited March 2017
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    hows your cancer now

  • moderators
    moderators Posts: 8,229
    edited March 2017
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    Wildwoodbaby74, welcome to the BCO Community. What is your situation with breast cancer? How can we help you specifically?

  • Tessio
    Tessio Member Posts: 14
    edited April 2017
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    hello warriors, I need recommendations for a second opinion. I completed breast cancer treatment in October stage 2, had bone pain this January, and scan on Friday that showed multiple bone lesions. I am very confused and after undergoing aggressive treatment (mastectomy, chemo, radiation, and tamoxifen). I am willing to travel. Does anyone have a good recommendation? Mayo clinic, MD Anderson, cancer treatment centers? I would love to hear about your experiences.

  • NMJanet
    NMJanet Member Posts: 16
    edited April 2017
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    Hello all. It's been almost 3 years since my diagnosis of MBC and I can tell you, it was so much harder the first year than it is now. Like many, my first thoughts were focused on dying, planning my funeral, getting my "affairs in order", etc. I spent most of the first year feeling very sad and crying a good part of the time. Every new ache and pain scared me silly. Nearing my 1 year anniversary, I totally fell apart so took myself to a doctor and got on an antidepressant. Seeing that doctor was one of the best things that could have happened! After listening to my story his words were: "Girl, go home and get your s*** together!!! Stop dying and start living!!" May sound harsh but it was exactly what I needed to hear. I've tried to live that way ever since and my life has been so much better. Yes, I still worry over every new ache and pain but take a pain pill and get on with my life. I go on vacations, shop, make all kinds of things, and live as normally as possible.

    As many have suggested:

    1. Give yourself time. It's a shock and you won't be thinking clearly at first.
    2. Don't be afraid to ask for, and demand, any meds you need for pain, sleep, depression.
    3. A few sessions with a cancer counselor can be beneficial.
    4. After the shock is over, look into your financial needs. I didn't realize I qualified for Disability until 6 months later. Once I applied, I received my acceptance letter 3 weeks to the day. I completed the form online and then called in and talked to a rep, who was wonderful and compassionate. Yes, there was a 6 month delay from first diagnosis but since it had been 6 months when I applied, I received my first payment immediately.
    5. Some friends will disappear. Some friends will make it all about them and losing you. Some friends will go overboard. It's okay; no one really knows what to do and each person is different. Don't be afraid to express your needs.
    6. Your family may also get depressed and need help. Once you take care of your needs and get back into a good mental state, they will usually follow. If not, insist they get the help they need.
    7. Take the online statistics with a grain of salt. People are living longer with mets now and there are always new treatments coming out. Just because someone else died at 6 months doesn't mean you won't live 10 years or longer!
    8. Stay active! Take the classes you always wanted to take; go on vacations; visit all the places around you that you never take the time for, like museums and galleries; plant a garden; start a new hobby. Get out and enjoy life.
    9. Find something to laugh about everyday! Watch a comedy or stand up comedian. Find some funny pictures and put them on your fridge or mirror where you can see them everyday. Learn a new joke daily. Play games.
    10. Eat what feels right for you. Seems like I've been trying to lose weight my entire adult life. I saw a cancer nutritionist and her wonderful comment was: "Haven't you earned the right to eat what you want now?" Yes!! Instead of making me go on an eating binge, it took all pressure about food off and I ate what tasted good to me and stopped when I was full. After 2 years, I decided I did want to lose weight so found a plan that works for me. What works for me or you, may not for someone else. Don't pressure yourself about your diet! You can find a list of pros and cons for every single diet out there.
    11. Realize some days you are just going to be tired and need to take the day off and rest.
    12. Love yourself. Appreciate each day. Give thanks and be the person you'd truly like to be.

    Best of luck to all of us!!!

  • proudtospin
    proudtospin Member Posts: 4,671
    edited April 2017
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    janet, thanks for your thoughts. It has only been a few months since the sleddge hammer hit me. Still in the shock and awe stage

  • NMJanet
    NMJanet Member Posts: 16
    edited April 2017
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    Iris, I do remember that stage as if it was yesterday. Really tears you apart but even though it doesn't seem that way right now, it will pass. Not that we ever forget but at least we learn to continue living in the meantime. You might even find yourself laughing out loud or making jokes about it at some point! : ) I wish you the very best outcome and a very long life!! Many blessings, Janet

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited April 2017
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    Thank you Janet,

    I am also fairly new to this and, while for the most part I am managing well, I do have my struggles. Others feel I am so strong but often I just feel sad. I am doing all the "get your house in order stuff" in the hopes that with a clear sense of where things stand I can move forward and embrace the time I have. But I seem to keep hitting road blocks. Most recently it was the knowledge that I may need to plan to cover drug costs which I thought would be covered in our Canadian system.

    And then there is the question of work which keeps me awake at night. I do like to work and be productive but it sucks time, time which I might like to spend on more leisurely pursuits. I am also not sure what to expect if, at 55, I go on disability. I am fortunate to have a good plan at dork but it will be an adjustment both financially and psychologically.

    I appreciate your sage advice. I know this period will pass but definitely this part of the journey is challenging.

  • proudtospin
    proudtospin Member Posts: 4,671
    edited April 2017
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    janet,thanks for your thoughts,

    Right now i am trying to distance myself from a pal who has made negative comments to me, basically telling me it is my fault since i worked in a printing company and they used nasty chemicals. If she really thinks that caused my cancer then she should shut the f up, course she also has critized me for using my one sweet and lo a day

  • divinemrsm
    divinemrsm Member Posts: 6,163
    edited April 2017
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    Proudtospin, it sounds like a good idea to distance yourself from this person. Ugh! She is kicking you while you are down and trying you shame you for no good reason. Cut her from your life and make room for more supportive people.


  • proudtospin
    proudtospin Member Posts: 4,671
    edited April 2017
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    well it sure is unanimous to stay away from this person, actually someone fro my gym asked me if i thought she could be senile, maybe so and sad if so

  • debbie2
    debbie2 Member Posts: 1
    edited April 2017
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    thank you for the hope

  • ottawa
    ottawa Member Posts: 2
    edited April 2017
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    I am wondering if someone could reach out a bit to me. I had 'low risk tubular breast cancer' about 46 months ago. Stage 1 grade 1 only 1cm. I completed a mastectomy and chest wall radiation. I am on tamoxifen. I am active, a good weight, I cruised through my treatment and returned to work in 10 weeks. I was just getting beyond the fear. Last Thursday I had images for my left shoulder as it was bugging me a bit the past month. The ultrasound showed the tendonitis and an inflamed bursa (no problem I can deal with that) but the x ray should a 4 cm destructive lesion in the proximal part of my humerus (suspect bone mets now). I am so shocked....how did this arrive with low risk BC? The doc says I need a bone scan (the lesion was not there 3.5 years ago), an MRI and CT of my pelvic area and a biopsy of the tumour site. Someone must know this kind of story?

    Denise

  • divinemrsm
    divinemrsm Member Posts: 6,163
    edited April 2017
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    Denise, i haven't had the same experience as you, but there are other women on this board who have progressed from a lower stage bc. I would wait to see what the scans and biopsy reveal. I know it is not a good feeling to wait to get the tests, then wait for results.

    No one can say who the women are that will progess from seemingly low risk bc. Even healthy women with healthy lifestyles are sometimes affected. I am sorry I cannot be more positive. Its just that it does happen. There is a lot of media hype that bc is curable, but is it really? I am assuming you live in Canada because of your avatar name, and I don't know how bc is represented in the media there, but in the U.S., lots of pink hoopla and admonitions to women to stay perky positive so you "beat this thing" are the norm. That kind of coverage masks the harsh realities some other of us deal wih. The media often declines to cover those type of messages,tho.

    I hope for the best for you. Please let us know how you are doing.


  • Lee1963
    Lee1963 Member Posts: 10
    edited April 2017
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    Hi Denise/Ottawa,
    I'm sorry that you too are going through this. I was diagnosed 3.5 years ago with IDC stage one, grade 2, er/pr+ and her2-. I had a lumpectomy and radiation, and believed I'd left it all behind me.
    In January I had a CT scan for diverticulitis. This lead to a bone scan, which lead to a detailed upper and lower CT scan as well as an MRI. Multiple areas of bone mets, spine, hip, and a few ribs. Now life is all about oncology appointments and treatment plans...all too surreal.
    I understand your shock, I never expected this to happen. I was one of the people that told others I was cured. I'll be treated at the Irving Greenberg Family Cancer Centre, I'm from Burnstown (west of Ottawa). Wishing you all the best, please keep in touch.
    Leeann
  • moderators
    moderators Posts: 8,229
    edited May 2017
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    Thanks everyone for adding your great tips and advice and please keep them coming!

    Also, here is a slideshow created by our wonderful writers at BCO : A Guide To Common Terms You May Hear After Being Diagnosed With Metastatic Breast Cancer


  • proudtospin
    proudtospin Member Posts: 4,671
    edited May 2017
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    Lee, sorry for diagnosis but it sounds like me

    Dcis in 08, did all the docs recomened which was lumpies, rads and then did a full 5 years of the meds. I was ned for over 8 years when tummy pain lead to finding it had returned in my liver

    Now and forever will be on the new nasty meds


  • Thicket
    Thicket Member Posts: 2
    edited May 2017
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    well hello there! I'm Stephanie and this is my first time posting. First of all, my love to all! Last summer I had a backache (really bad!), but I've been a server, bartender and cook for 20 years,( kept me able to be a stay at home ma🤡) so I just sucked it up and kept going, then really fast my left breast became swollen ( no lump) and shooting pains towards my nipple, so off to the emergency room I went. 2 days later 9/9/16 Stephanie, it's cancer- biopsy and pet scan.... Stephanie, it's stage lV her2 positive breast cancer. I remember clearly looking into Justin's (soon to be husband) eyes while feeling the oncologists breath on the left side of my neck while she was saying those damn words to me as the heat of my own body became overwhelming I just said to him, " I'm so sorry". We went home and I mourned my self for 2 weeks and thought hard about a way out of this but there wasn't/isn't. Soooo, I've chosen to obsess with diet, excersise and research! My best friend Loki 🐶🐾 is getting quite a bit of exercise too! I've always ate well and excersised so I thought but I'm healther than ever and have to admit I am happy. I know that sounds strange but I believe if you are willing to happiness will creep back in if you let it, I promise. Yes I worry about my son's Samuel and Elijah ( aka pride and joy) however, when I do go( got to one day, so does everyone else) I DO NOT want sad memories for them. I was my happiest the day I met them 1/14/96 and 1/6/98 I will leave happy because of them. So in short, I found obsession with nutrition my thing to occupy myself and it definitely won't hurt to say as fit as possible for this SOB called cancer.

  • moderators
    moderators Posts: 8,229
    edited May 2017
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    Dear Thicket,

    Welcome to the community. We are sorry about your diagnosis but so glad that you shared your story with our members. We hope that you will stay connected here and keep us posted on how you are doing. The Mods

  • artistatheart
    artistatheart Member Posts: 1,437
    edited May 2017
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    Great stories and advice here. Divine, right to the point you always are as Prouds friend is kicking her while she is down! My one main suggestions echoes jobber's. Be very selective and discretionary about who you tell. I was so naive and freaked out. I thought I was heading straight to harsh chemo, hair loss, and a vomiting mess. So I sent a blanket Email to all my co-workers. I regretted it to this day. It was only a matter of days before the whole town knew and my life has never been the same in a very weird surreal way.

  • moderators
    moderators Posts: 8,229
    edited May 2017
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    Thanks artistatheart for sharing your experience and suggestions!

    Anymore more tips from our members?

    Keep them coming!

  • Mimi2kleh
    Mimi2kleh Member Posts: 62
    edited June 2017
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    Thank you all for the wonderful tips and insights! I can't believe how much I didn't know about MBC, even after going through the initial BC diagnosis and treatments. I just finished my five year hormonal treatment after MX and chemo, and a week later found the new mets while having an unrelated CT. I'm still in that shock stage, and why me, and all that, but I'm already finding myself pulling out of that, because of you all here! Finding this site has been a godsend. And the people posting here are so great, and so supportive. It is so good to be able to ask questions, and get answers and advice, from people going thru the same thing. And being educated, forewarned, and prepared for side effects of specific chemos from others taking it too, is invaluable. And to hear from so many, that have been going for years, with severe mets, gives such hope! Thank you one and all!

  • proudtospin
    proudtospin Member Posts: 4,671
    edited June 2017
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    i just learned something, when your rad center or onco office offers extra help, take it! First time i was sure i could manage but not this time. Means i will be seeing a nuititionist and a psychologist as well. Oh yeah, social,worker if i want also. And the anxiety med, yeap taking it

  • AnnBR
    AnnBR Member Posts: 345
    edited June 2017
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    Thank you ladies for your sharing your hearts. You are an amazing and uplifting group of survivors. I was diagnosed with mets to the spine on May 5 so I'm still in a bit of a shock. I wake up thinking this is all a bad dream because I went from stage 1 to stage 4 in 4-1/2 years and had a very low oncotype score. I have to say that cancer taught me some timeless truths and for that I am thankful. I've got strong faith and an amazing support team, so I'll be just fine as I enter this new phase of my journey.