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Need Your Tips for Members Newly Diagnosed Stage IV

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124

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  • Utopria
    Utopria Member Posts: 182
    edited October 2018
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    hello SAP1070 - I was also diagnosed stage IV on Oct 5th..it is hard, the stats are scary..I have a single bone met on my spine and going for initial radiation consult next week.

    I have some good and bad days..I see some women doing good here with bone Mets and also see some sad stories..this is the reality and I have to learn to accept it. I have 20 and 17 yr old boys, the 20 yr old returning from college for fall break this weekend and have to break it to him. Not looking forward to that...

    I’m also trying to figure out my next steps..i work full time..I’m wondering if I should cut back a bit and travel more when I still can? I love to travel. I also need the insurance from my job. My doc asked me not to make any impulsive decisions for a few weeks after a stage 4 diagnosis, and for now I’m heeding his advice.

    Sorry that you are in a similar state as I am..but we can do this..maybe we are lucky and can hang on for the next miracle drug thus causing our lives to extend....

    Love and hugs to you..





  • 6464
    6464 Member Posts: 1
    edited October 2018
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    thank you so much your post has given me hope . I started treatment today for stage IV with liver mets

  • moderators
    moderators Posts: 7,989
    edited October 2018
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    Welcome, 6464. We're sorry for the circumstances that have brought you here, but we're glad you've found our community, and hope you find it to be a source of support as you continue with your treatment.

    The Mods

  • justgivethanks
    justgivethanks Member Posts: 7
    edited November 2018
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    I can only say I am eternally grateful for all the reasearch and information you have provided. This is my 3rd time.I have been HR+..HR-..Now TNBC...MBC..these are just letters and #..the best info has been yours...I contacted the NIH on my own and did all there testing and Immunotherapy will work for me..We need to be proactive..not passive..the doctors run tests..the radiologist reads the scan the way they want to and things are overlooked and candy coated....POSITIVE THINKING BRINGS ME THE ADVANTAGES THAT I DESIRE...6years and 9 months later..God Bless you and yours..

  • justgivethanks
    justgivethanks Member Posts: 7
    edited November 2018
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    I can only say I am eternally grateful for all the reasearch and information you have provided. This is my 3rd time.I have been HR+..HR-..Now TNBC...MBC..these are just letters and #..the best info has been yours...I contacted the NIH on my own and did all there testing and Immunotherapy will work for me..We need to be proactive..not passive..the doctors run tests..the radiologist reads the scan the way they want to and things are overlooked and candy coated....POSITIVE THINKING BRINGS ME THE ADVANTAGES THAT I DESIRE...6years and 9 months later..God Bless you and yours..this in response to Bestbird..thank you..

  • MishaA
    MishaA Member Posts: 2
    edited December 2018
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    Your suggestions are very well organized and useful, thank you!!!

  • ailurophile
    ailurophile Member Posts: 124
    edited January 2019
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    is there anyone here with Mets in liver who can share positive stories ? I am 42, first diagnosed in 2013 with stage 2A no lymph involved. currently have Mets in liver and infraclavicular area .while I am going to get 2nd and maybe 3rd opinion, I won't stop my treatments with my old medical team.plan is to do a hysterectomy then start fermara and Verzenio.(tumor is 95 percent hormone receptor) Anyone here similar to my situation? Btw beside fermara and verzenio I will be participating in a research with one more oral medication added to that regimen (don't know the name and have no idea yet that If it is a placebo base research or not) .would you please share your experience with verzenio? I heard about sever diarrhea and the bone pain and stiffness. I do not mind any of that if it gives me the chance to be by my 10 years old and see her graduating from high school😉

  • ladinred26
    ladinred26 Member Posts: 9
    edited January 2019
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    thanks you leapfrog. I’ve just been diagnosed and am waiting for my biopsy results to get pathology. Ur words comfort my soul during this whirlwind of tests and then waiting.

  • Greenteatwo
    Greenteatwo Member Posts: 11
    edited January 2019
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    Ailuraphile, I was diagnosed with mets to the liver 11/17. There is a thread on this site that specifically talks about liver mets. The plan that you described sounds like a good standard recommendation. A second and third opinion is a good plan too! Seeing your baby graduate is in your favor given the determined spirit you have and your actions to find the best course of treatment for your case.


    I'm thriving and living with a very good quality of life alongside the treatment plan. Of course I'd prefer not to have to travel this journey! I have a oncology team that I trust and respects my input into the treatment plan. Choose a team that meets both your expectations and your needs.


    Belynda

  • princessfluffybritches
    princessfluffybritches Member Posts: 51
    edited February 2019
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    SAP1970, I'm glad you posted about online statistics about length of life being poor.  Gosh if I believed them, I would have to run outside right now and dig the hole.  I think family members look at me sometime and wonder why I'm not suffering!  That's how a lot of people see me or us.  

    I am also upset by those statistics.  I try real hard to keep thinking of myself as an individual .  It's hard.

  • bestbird
    bestbird Member Posts: 232
    edited February 2019
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    When contending with an initial diagnosis, treatment change, or side effect, it can be very challenging to obtain current science-based information.When I was diagnosed with MBC in 2011, I began researching the disease and its treatments and shared my notes with other patients.In 2015 I organized everything into a .pdf entitled "The Insider's Guide to Metastatic Breast Cancer" in which the tips below (and more) are listed.

    The Guide is offered in paperback and eBook format on Amazon here or you can request a complimentary .pdf version by emailing me at bestbird@hotmail.com

    Helpful Tips:

    • Keep copies of all your medical records and test results for ease of reference.These include blood tests, pathology reports, clinic summaries, scans and radiology reports, etc.The reports may contain key information that your doctor might not have noticed or mentioned.Furthermore, retaining your own copies will make it easier if you eventually transfer to a different medical network.
    • Whenever possible, select a trusted friend and/or family member to serve as your advocate, and ask them to accompany you to doctors' visits and treatment sessions.Your advocate can take notes and help you later recall important points that were discussed.
    • Seek a second – or even a third – professional opinion before starting any new treatment.A second or third opinion may potentially provide a critical difference in direction and outcome.
    • Because it doesn't show up as a solid tumor and looks more like a spider web, Lobular metastatic breast cancer may difficult to diagnose and track.It also tends to migrate to the abdominal area, so if you are diagnosed with Lobular MBC, be especially proactive in reporting abdominal pain and/or swelling to your doctor.
    • If you receive injections of any kind (including but not limited to Faslodex or Xgeva) request that the vaccine be warmed first and then injected slowly.This will help minimize pain immediately following the injection.
    • MBC patients who live in the US should be aware that they may qualify for Social Security Disability Insurance (SSDI) if they have spent sufficient time in the workforce and paid sufficient Social Security taxes.For those who are accepted, there is normally a 5-month waiting period before the first check is issued.Two years after acceptance, patients will be able to go on Medicare. Additional information about SSDI may be found at: http://www.ssa.gov/disability/
    • Remember that many people with MBC can live with the disease for years…possibly longer than statistics might lead one to believe.By the time they are published, survival statistics may be outdated due to the introduction of newer and more effective drugs.How long a particular MBC patient lives seems to be mostly dependent on how well their cancer responds to various treatments.Some people also believe that lifestyle may also play a helpful role in survival.Many patients who were initially given only months to live by their doctors are still alive years later, and for reasons that are being investigated, a very small proportion of patients may proceed to live a normal life span.
  • Chemokaze
    Chemokaze Member Posts: 177
    edited February 2019
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    thank you BestBird! I just ordered the amazon option

  • Unknown
    Unknown
    edited March 2019
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    Hello- the diagnosis/pathology report for previous breast cancer survivor 88 yr old woman with strong family history is- Grade 2 pT3 pNx pM1- what stage does that make her?

  • pajim
    pajim Member Posts: 930
    edited March 2019
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    Hello giz, someone gave you the TNM classification for the tumor. You can read about it at

    https://www.cancer.net/cancer-types/breast-cancer/...

    Basically T3 means the tumor is bigger than 5 centimeters

    Nx means they didn't look at the nodes. N= nodes. If they'd given a number it would be how many nodes were positive for cancer

    M1 means there is evidence for metastasis. Which is why they didn't look at the nodes.

    So this would make her a Stage IV patient.

  • AMP47
    AMP47 Member Posts: 83
    edited March 2019
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    good Mornjng Lynn - I have an oncologist. Would that be what you referr to as NCI doctor

  • Gardentool
    Gardentool Member Posts: 6
    edited March 2019
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    WendyB51, I also chose quality of life. I don't want to be sick and miserable with what little time I have left.

  • Gardentool
    Gardentool Member Posts: 6
    edited March 2019
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    Here are my tips for those just diagnosed:


    1. Live your life to the best of your ability

    2. Refer to Number 1

    Rinse and repeat

  • Llimko
    Llimko Member Posts: 1
    edited March 2019
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    I was informed that Stage 4 breast cancer automatically makes you eligible for LTD and social security disability

  • pokyspider
    pokyspider Member Posts: 59
    edited May 2019
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    My chemo #3 has been delayed. Blood tests showed extremely high liver enzymes (up more than 100 over normal range) so chemo was canceled and I was sent straight up for a liver ultrasound. Spent 30 mins waiting/panicking but it turned out all clear and probably chemo causing the spike. CT scan from January looked good so my doc seemed very confident that I didn’t need to worry. We’ll try again next week. Phew!

  • vbishop
    vbishop Member Posts: 332
    edited October 2019
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    I am not sure I am the best one to offer advice, as I am new to the MBC game. Some I am learning as I go, some I have learned from my breast cancer friends that have been through various treatments ahead of me. I am also checking out topics here, as well as the mbcn.org site specific to Metastatic Breast Cancer.

    One piece of advice I can share, that I used during my initial diagnosis and am doing so again now; I created a blog. I like to talk things out. I am an open book and have no qualms sharing the good, the bad, and the ugly about what I'm going through, resources I've found, my rants, my inspirations, antidotes about my journey to date. It's therapeutic for me. Plus it keeps cancer from being my main topic of conversation every day; that gets old to friends, family, and co-workers. My family, friends, and co-workers can stay up to date on what's going on. I've found friends and co-workers are more comfortable interacting with me. I have also found family, friends and co-workers are more comfortable asking questions after reading the blog. I try to be real, informative, inspirational, and add some levity to a very serious disease.

    In case you're interested: https://vjbishop.blogspot.com

    My dog Sam, is also entered in a Halloween contest at his day care. He is my Breast Cancer Awareness dog. Shameful plug, but he is so cute and I thought it was fitting considering the month and my recent diagnosis. Here is his entry:

    image

    A 90 lb. chocolate lab in a tutu, my "Fighter" shirt, my bc socks and a not-so-comfortable beanie I bought for the occasion. You can vote for him in the link in my blog if you are so inclined.

    Fight on ladies! Stay strong, live everyday to the fullest, and think positive!

  • moderators
    moderators Posts: 7,989
    edited October 2019
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    What a terrific pup!! We voted for Sam!

  • vbishop
    vbishop Member Posts: 332
    edited October 2019
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    Thank you!

  • ani32
    ani32 Member Posts: 1
    edited November 2019
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    I learned so much since my diagnosis. Family and friends are so important! Find a few people that you can share with. MBC is not a death sentence I am going on 4 yrs.

  • Jclc83
    Jclc83 Member Posts: 167
    edited November 2019
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    I knew this day was coming. I am now stage IV with Mets to my lungs and supraclavicular nodes according to the CT scans I had done yesterday. Tomorrow I am having a core biopsy done on the node. I work in the medical field so it's just waiting on an official pathology report. I have so many things are running through my head such as should I tell my employer? When should I tell my kids? Should I keep the house ( I live alone). I've continued to work because I can't live on Social Security. But maybe it's time to retire? And for some unknown reason I applied to have Medicarestart in January.

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited November 2019
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    Jclc, Sorry about your new diagnosis. MBC is not what any of us wanted to hear but you will settle into a routine once you start your treatment. I suggest not making any big changes right away, especially with your house or job. See how you feel in a month, then start thinking about what feels right for you. For me I didn’t feel much different with my first treatment but I did seem to have a lot of appointments for the first few months. (I was retired so that was ok.). After that I had onc or nurse practitioner appts every other month, which made me almost forget I had cancer. Right now I’m getting ready for lumpectomy and node removal next week, followed by radiation. (My MO decided we should be more aggressive with treatment because my tumors had all shrunk a lot and a couple sites were ruled out as cancer.). So you won’t know how you feel right Away, that’s why I suggest holding off on big decisions. When you know your first treatment you can also look for that board here. Best wishes to you

  • Jclc83
    Jclc83 Member Posts: 167
    edited November 2019
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    thanks for your reply. Happy Thanksgiving.

  • Daylightdancer666
    Daylightdancer666 Member Posts: 30
    edited December 2019
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    I got diagnosed breast cancer mets diagnosed since june and one tip.ot advice I can give is take ome day at a time and dont push yourself too much I still push myself too much e.g. I carry things and that strains my back where have boney mets and dont worry if you dont adjust and come terms with condition straight away I'm still dealing with it it now xx

  • KerryD
    KerryD Member Posts: 4
    edited February 2020
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    Just newly diagnosed with stage 4. Already been stage 2. I love everyone’s posts and need all the advise and views. Thanks for everything.

  • KerryD
    KerryD Member Posts: 4
    edited February 2020
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    This is good advise. My back hurts.

  • Lily55
    Lily55 Member Posts: 1,748
    edited February 2020
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    I think I have been under treated and feel dumped now.......it's very difficult to believe in yourself when doctors have written me off......

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