Newly diagnosed Metatastic Breast Cancer

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DyingtoBelieve
DyingtoBelieve Member Posts: 1
edited August 2018 in Stage IV/Metastatic Breast Cancer ONLY

I am really going through it ! All I can think about is dying ! I am anxiety attacking by the minute and Im scared to death . I havent had my MRI or Pet yet its been a month since my diagnosis. I keep thinking its too late . I found two lumps in my arm pit the beginning of June and my nightmares are now a reality. I am low income and I feel like the treatment im getting is second rate . I cant even breathe , I cant think straight how do I survive ?

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited August 2018

    dying to believe: first - for the anxiety: can you ask your docs for something for the anxiety? I took (without shame!) Valium to get me through the initial months of diagnosis. It helped - although I still cried and cried. My doc also gave me ambien for sleep (which I didn’t end up taking but was glad it was there just in case).

    I also listened avidly (and still do at times) to meditation podcasts. Specifically Jonathan Foust, to get my mind clearer.

    I cried and cried and found my safe people to share with for support. Do you have a good support network? Friends? Family? People you trust? I always had someone with me at all appointments and took Valium before all appointments because they were too scary to face. It helped me a lot.

    I am also low income and there is a Medicaid program for women with breast cancer that my MO’s financial office helped me get into. I don’t pay for prescriptions or my doctors visits with this plan. There are also a lot of BC organizations that can offer you financial assistance and grants to help pay for expenses. I was able to get $2000 to help pay for my therapy appointments.

    Ask your support people to help you figure out things and do research for you. You don’t have to do this alone.

    Where do you live? There are often cancer foundatations that help people navigate these exact things.

    Also - remember that you get to call the shots and are empowered. The docs will tell you what they recommend and ultimately you get to choose what feels right and best for your body.

    I’m sorry you are here with us but I promise you it gets easier. Sending you a giant hug.


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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2018

    Dyingtobelieve,

    We're so very sorry that you find yourself here, but we're really glad you've found us. As you can already see, our Community is a wonderful source of support, information, advice and inspiration. We know it's so very hard to see right now, but there are many amazing members here who have been diagnosed with metastatic disease and living happy, fulfilling lives. They're sure to stop by and offer their support, too!

    As LovefromPhilly points out, there are many organizations or pharmaceutical companies offering assist for medications -- take a look through the Paying for Your Care section on the main Breastcancer.org site, specifically the Tips to Lower Medicine Costs page, and hopefully that will give you a good place to start.

    Also, yes, gather your support system and ask for help to manage this diagnosis and your treatment -- you deserve it.

    We're all here for you, too. Come back often, ask lots of questions, engage fully and get the support you need.

    And, take a deep breath. You can do this.

    Big hugs,

    --The Mods

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  • jobur
    jobur Member Posts: 726
    edited August 2018

    Please take a deep breath. And now another. We have all been where you are right now. Your reaction is totally normal, hearing you have stage IV cancer is devastating and it will take time for you to adjust.  But here is the good news - you will make it through this period of mourning and fear and things WILL get better. I felt just like you 4 years ago, but here I am, still alive and kicking!

    There are some things you need to know.  What are the characteristics of your cancer? The main things are whether you are ER/PR (estrogen and progesterone ) positive or negative and HER2 status. These are important to know as they affect which treatments will be right for you. Have you had a biopsy yet? The pathologist report from your biopsy should include this information. You say you have not had MRI or PET scans yet. What imaging have you had to determine you are stage IV?  It is NOT too late and is important to know where the cancer is. 

    Have you started a treatment plan yet? If not, your oncologist should be discussing this soon. I can tell you from my own experience, this is a shitty time of year to be diagnosed. Doctors all seem to take their vacations at the same time and clinics tend to be understaffed in July and August. Don't be afraid to call the clinic if you have unanswered questions and concerns. I know it is difficult to think right now, so make a list of your questions and be a pain in the a$$ until you get answers you understand.

    Okay, time for another deep breath. Life may never be the same, but it can still be very good. And please keep posting and let us know how you are doing. This is a great place for information and support.

    Sending a hug and positive thoughts your way.

    Jo

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  • pajim
    pajim Member Posts: 2,785
    edited August 2018

    DyingtoBelieve, you are in the "shock and awe" period. What you are feeling is totally normal. It WILL get better. Ask for whatever you need to get over the hump. Sleeping meds, pain meds, anxiety meds. They're not forever and you won't become an addict.

    I'm with Jo. If they haven't done a PET or a CT, how have they determined you have Stage IV cancer? Because of where the lumps are? That could just be regional cancer and still curable.

    Now you could have mets, but you aren't going to die tomorrow, this month or this year. Really you aren't. Once you get into treatment and the treatment starts working you'll realize that death is not imminent. If you feel like what's happening medically isn't up to par, can you go somewhere else? Or get a second opinion?


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  • bmoran413
    bmoran413 Member Posts: 8
    edited August 2018

    I'm in the same boat feeling the same things.  I was just diagnosed 2 weeks ago.  This is my 3rd round of breast cancer. PET scan showed mets to spine, head (not brain), lungs and liver.  I had biopsy of liver but results haven't come back yet.  I feel so alone.  It's so difficult to tell people.  My coworkers and some friends just cried.  I hate making everyone sad.  My sister is mad at me because I haven't been calling her every day.  I never did before and tried to tell her how I'm not sitting home giving up on life.  I hate doing this to my family ( I know I'm not doing anything) but, again, I just feel like everyone is upset. 

    I know this will get easier once the shock has worn off and I start on a treatment plan.  Did anyone get a 2nd opinion?  It seems like the treatments are basically the same.  Also, Is it worse that my mets have spread to more than 1 region?  I have multiple spots (over 10) in many different areas.  I know that these are questions for my doctor but I don't see him for another 1 1/2 weeks.  

    I'm glad I found this forum to give me hope.  The statistics are not very promising.  

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  • candy-678
    candy-678 Member Posts: 3,950
    edited August 2018

    Bmoran413-

    Like others have said---breathe.  You can do this.

     This site is WONDERFUL and we are here to listen and help.  YES get a second opinion and a third if need be.  I got 3 opinions and am getting treatment at the first place I went to since it is close to home.  In my case, all the opinions matched, for now.  It made me feel better that all opinions agreed.  But when I progress and these meds quit working I plan on revisiting the other offices to review the situation.  Also I get TONS of information from this site and these women.  That also validates the care I am receiving.  And, if I learn something new, I will ask my doc about it.  KNOWLEDGE IS POWER !!! 

    No the statistics are not great, this bothers me too as I am that type of person.  But it is good to read other posts on how long others are surviving.  Look into the other threads---one on liver mets and survivors 5 + years out.  

    Also, update your profile when you can. This helps others that read your posts to give you the info you need for your case.  

    We are here for you !!!!!

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