****Initial DX is Stage IV

Options
rslawdog
rslawdog Member Posts: 3

I am very new to all of this, but would love to hear from anyone who is in the same boat as myself. I am so completely worried and am so interested in hearing other perspectives.

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    Hi rslawdog, and welcome to Breastcancer.org! We hate that you're here but really glad you found us.

    You're sure to hear from many other members who experienced a similar situation at diagnosis. You're in the best place for support and inspiration to help you navigate this diagnosis!

    We hope to hear more from you soon!

    --The Mods

  • brandall
    brandall Member Posts: 687
    edited May 2016

    Rslawdog, I'm sorry you have to join this group, but I hope you find support here. I was essentially diagnosed with stage IV from the start. I had surgery first and recovered for about 3 weeks before seeing my oncologist for the first time and he did a PET scan at the time and found that I had tumors in my liver. Those were likely there at my original diagnosis. I clung to these boards like a life line at my original diagnosis because I just needed to talk to ladies who could understand. It was so helpful. It always helped me to see some ladies doing so well on here many years out from their original diagnosis. I will be 4 years out from my diagnosis in July and I'm still leading a great life. If you didn't know I had cancer, you would never suspect. I travel, run, try new things (like rock climbing - yikes), and take care of my little kids and husband. I felt horrible and could think of nothing but death for the first few months, and people on here told me it would get better, that eventually your brain just can't live in that dark place all the time. I was skeptical, but they were right. About 3 months into my diagnosis I started feeling much better mentally. It does get better. Hugs to you!

  • Joy73
    Joy73 Member Posts: 6
    edited May 2016

    Hi rslawdog, I was diagnosed last summer as Stage 4 from the get go. 10 months out from my diagnosis I'm living a full, crazy, busy life and have far less dark days than at the beginning. I don't post very often, but I've learned so much from the incredible women on these boards who do post often. I hope you also find encouragement in this wonderful community.

  • zarovka
    zarovka Member Posts: 3,607
    edited May 2016

    rslawdog

    I was diagnosed stage IV in January. Two thumbs up on the ERPR+ grade 1 diagnosis. It takes time to figure out what your situation is and your options. You have both options and time to consider them.

    Get a second or third opinion. Include an NCI designated center if you can.

    Read Bestbird's summary of current treatments. Twice.

    Stay positive.

    Life gets normal after a while. But it is a crazy jumble of emotions and technical babble for a while.

    Try to find some humor in the drug names if you can ...

    And ask a lot of questions on this forum.

    >Z<

  • EnglishMajor
    EnglishMajor Member Posts: 2,495
    edited May 2016
  • Bestbird
    Bestbird Member Posts: 2,818
    edited May 2016

    I am so glad you have found this forum although I'm terribly sorry for the circumstances that brought you here.

    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!

    If it's possible, have the met(s) biopsied to see what their estrogen (ER), Progesterone (PR) and HER2 status are, since they may differ from the original cancer (if you were previously diagnosed). If the cancer is ER+ and/or PR+, then the oncologist should be considering hormonal treatment, and if it's HER2+ then Herceptin and Perjeta may be considered along with a Taxane. Additionally, you may want to request testing to see whether the tumor has Androgen Receptors (AR), since there are some promising clinical trials that target Androgen Receptors in a similar manner as current hormonal therapy targets Estrogen Receptors (ER).

    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 should also seek a second and possibly a third opinion at any point about treatment, as zarovka advised.

    I've compiled a 120 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=2#idx_32

    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!

  • jensgotthis
    jensgotthis Member Posts: 937
    edited May 2016

    I was diagnosed stage 4 de novoin Dec with bone mets. I've found the bone mets thread to be a huge source of info, support and community. There's also a liver mets thread. Pleasd join us when you feel ready

  • jensgotthis
    jensgotthis Member Posts: 937
    edited May 2016

    I also started an anti anxiety med soon after diagnosis and it's helped me so much. I've never taken anything like this before by Effexor has really been a positive addition to my life. Living a joyful and full life is the goal and after the first weeks and months of diagnosis it gets much easier to do that. I really Had to research and talk to people so I could wrap my head around this. I also spent a lot of time finding stories of long-term survivors. And there are so many beautiful stories

  • artistatheart
    artistatheart Member Posts: 2,176
    edited May 2016

    I was diagnosed last July stage IV out of the box. Mets to liver. This site is a life saver. I am working full time and went skiing this winter. For the most part I am doing OK just living life, although every so often (usually as an appointment or scans are coming up) I have a mini meltdown. Then I shake it off and move on...

  • Groovywilma
    Groovywilma Member Posts: 450
    edited May 2016

    I was diagnosed stage IV from the start as well. More than five years later I'm still working, planning a river cruise for the summer, and spending time with family and friends. My recommendation at this point is to get as much information as you can and to be your own best advocate! The info on this site can help you do that! Good luck to you with your treatment!


  • rslawdog
    rslawdog Member Posts: 3
    edited May 2016

    I am sooooo bummed because I don't get any notification that you all have responded! How do I change my settings here to be notified?

    I had a routine mammo on 3/14/16 and by 3/17/16 I was given a Stage 1 Dx. THENNNN, the MRI, CT and Bone Scans revealed that I am now Stage 4. I got 3 opinions. The first wanted to throw me immediately into Xeloda and full on Chemo. But my second opinion gave me an array of options - and the third opinion agreed with the second.

    Obviously, I chose the less life changing route. I am having Lupron and Xgeva injections monthly and take Ibrance 125 and letrozole. I just cannot believe that I am on Day 7 of ibrance and letrozole and have no side effects yet......is it going to happen? Scans in 3months. I am overwhelmed by all of it...I look forward to all of your support. It is amazing that we all become family once we have been given this awful "journey" in life. <3


  • Peanut0110
    Peanut0110 Member Posts: 40
    edited May 2016

    This is my first post since I was diagnosed back in January 2015 de novo. I started with Letrozole and Ibrance and achieved remission for six months. I then had a lumpectomy and radiation but following pet scan showed progression. Then I was put on Falsodex and pet scan after four months revealed that I now have bone metastases in almost all my bones and now in my lung. I just started taking Zeloda on May 11. I have been following this site for some time and it is the only place I get any encouragement

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited May 2016

    Hi Peanut,

    It's good to hear from you and to learn that you've gotten encouragement here!

    It sounds like you're experiencing a set-back on the Faslodex (and Ibrance too?) and have moved on to Xeloda.

    You might want to check out the Xeloda topic, as well as the lung and bone mets topics...especially if you have specific questions for the members.

    The wealth of experience and support is overwhelming in a good way.

    Wishing you well as you find your next, best treatment, warmly, Stephanie

  • Peanut0110
    Peanut0110 Member Posts: 40
    edited May 2016

    thank U Stephanie for the well wishes. I have been checking the bone Mets and the Xeloda sites and was previously checking the Ibrance site. This is where I get most of my information and questions answered. I feel that nobody truly understands the stage four diagnosis except for the people that are on this site and are actually experiencing all the ups and downs and unknowns.

  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2016

    Rslawdog, you have to mark a topic as a favorite in order to be notified on the upper lefthand corner of the page if there are new posts on your favorite topics (the number of new posts shows up). Hope the treatment continues to be easy but effective. I was also diagnosed with mets at the get-go in 2007. This was before Ibrance, which my doctor raves about!

    Peanut, I am sorry to hear of your progression. Here's hoping Xeloda is your "magic bullet"!

  • illimae
    illimae Member Posts: 5,710
    edited February 2017

    Rslawdog, I was diagnosed at stage 4 from the get go in November 2016 at age 41. My immediate reaction was disbelief and the need to check on insurance, breaking down bill payments for my husband and advising my team at work. 3 months later, I'm finding some positives (feeling good, minimal side effects and being oligometastic). I still have some bad days but once I got my head straight, daily life got to what I consider my new normal. Hoping the best for all here :)

  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2017

    Hoping the new normal gets better and better, Illimae!

  • illimae
    illimae Member Posts: 5,710
    edited February 2017

    Thanks Heidihill. If there's an upside to this, it is that I can start my retirement 15 years early! My husband is mostly finished building our cabin on a mountain and I can medically retire next year. We're going to sell our house in the city and become mountain folk!!!

  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2017

    Nice! I can only recommend mountain living, at least for holidays. Have to wait for DH to retire if I want more than that. 

Categories