• Have crossed the bridge to Stage IV

    Asked by baridirects on Thursday, March 20, 2014

    Have crossed the bridge to Stage IV

    I was given the unfortunate news that I have bone mets today - the scans were ordered after having a CA 15-3 of 153. Tomorrow, they will do the MRI/CT studies to check for soft tissue mets. The radiation oncologist told me that most of the areas involved have only minimal uptake, and he feels we have caught this very early. I have no symptoms, and the remainder of my labs are normal, so I'm praying hard that the bone mets are all we have to deal with.

    Reaching out to the community for support, and to connect with others who are living with breast cancer as a chronic illness. I could use a bit of hope right now.

    Namaste,
    Christine

    57 Answers from the Community

    57 answers
    • lilymadeline's Avatar
      lilymadeline

      I am so sorry that you got this news! It is just awful to hear I know! I'm stage IV mets to bones and the good news is that if it likes your bones it probably is just hanging out there and not going anywhere else...and it might not ever go any further because you've got a lot of bones that it would probably go to first before moving on to other organs. Anyhow that is how it was explained to me and it is true so far. It was caught late in my bones, head to toe actually but it still likes my bones best and has stuck to them. The problem with bone mets is that they are very painful but if you aren't feeling any pain they did catch it very early! Because the pain does show up fast with bone lesions! I had tons of pain before I was diagnosed so it is unusual that it was caught so late, but I have very dense breast so it didn't show up on my mammograms and the bone cancers got missed by my orthopedic. I am still thinking of suing him, but I just don't want the stress of a lawsuit.
      I have Lupus as well and it was masking the cancer...all my pain was being blamed on the Lupus instead. So please take care of yourself, thankfully you are not in any physical pain. Although I know how painful this is emotionally, it is a devastating diagnosis! Take care of yourself and best wishes for your upcoming MRI/CT.

      over 7 years ago
    • cam32505's Avatar
      cam32505

      I met a woman in the infusion lab who told me she had stage IV breast cancer. She said she had cement in her hips and was there for some type of chemo. I didn't get to talk to her long because I was only there for a port flush. But, she said she was still working and living her life.

      over 7 years ago
    • TwinBirches' Avatar
      TwinBirches

      Christine, I am so sorry to hear this news; it's something a lot of us fear. Please know that you will be in my prayers and thoughts and I'm sure you won't mind me mentioning your prayer needs with my choir this Sunday at church. I figure more positive thinking and praying never hurts anyone.

      If you don't mind me asking, what was your first ever diagnoses of BC and how did your doctor discover the spreading of it? I ask because when I questioned my oncologist about it coming back elsewhere in my body (I have the metastasizing kind too) I got the pat answer of "clinical studies have shown that, blah, blah, blah, blah," which is when I stop listening because she doesn't really know. "Live your life MaryAnn, don't let this haunt you," was her advice. Every ache and pain freaks me out.

      Know that I and everyone else here is thinking of you today, wishing you the best with everything coming up, and sending you a really big virtual hug. (Yes, I hug people I don't know.)
      MA

      over 7 years ago
    • savingrace's Avatar
      savingrace

      Sorry to hear this. Keep praying and stay postive,
      I'm sending up prayers for you as well. XOXOXOX

      over 7 years ago
    • parank's Avatar
      parank

      Christine, I so wish you hadn't had to hear this news. You know that there are many WhatNexters, including lilymadeline, who are living, and the key word is living, with Stage IV. Many for a very long time. Of course you are devastated and terrified at the moment, but the only advice I can give you is one day at a time, one step at a time.

      You have given such wise and kind responses to so many of us here. Know that we are here for you as well. You are, and will stay, in my thoughts and prayers. We will help you plow through it.
      Please keep us posted. Love, Peg

      over 7 years ago
    • SusanK's Avatar
      SusanK

      Sorry to hear this news. I have a friend whose breast cancer was caught when she broke a bone in her foot. She was immediately stage IV, diagnosed at Mayo. For seven years she has done quite well, continued to teach school for six of those years before retiring. Her chemo regimen has been adjusted several times over the years. I see her monthly at our retiree get-togethers where she is always upbeat. My breast cancer has not metastasized and of course that is our fear. However, I look at my friend and she inspires hope for anyone who crosses that bridge.

      over 7 years ago
    • suz55's Avatar
      suz55

      I am so sorry to hear that you have received this news. You will be in my thoughts and prayers. And I know the other members on this site will continue to be there for you as you have been for all of us.

      over 7 years ago
    • dls1007's Avatar
      dls1007

      Hi baridirects..... I've been living with Stage IV breast cancer for the past 17 years. I am so sorry you are going to have to deal with this, but you can live a normal, happy life and sometimes more fulfilling with cancer. I have met so many wonderful people that I know I would have never met without this illness and life is good. Fight with all you will and stay educated on new treatments and you will beat this.

      over 7 years ago
    • dmholt1957's Avatar
      dmholt1957

      I m so sorry that you have received this news! You are in my thought and my prayers. I pray that the MRI shows very little to worry about and that the doctors can take care of it. There are a lot out there with stage IV and they live a long and happy life. That is my prayer for you and anyone else that has stage IV. They can do so much more now than they could years ago! Good luck with your MRI and God bless you and your family! Hang in there girl! God has you in the palm of His hands!!

      over 7 years ago
    • RRodriguez's Avatar
      RRodriguez

      There are so many new treatments and clinical trials available now. Keep your spirits up! I am praying for you.

      over 7 years ago
    • baridirects' Avatar
      baridirects

      Many, many thanks to all of you who have responded - your kind words, support, and prayers are worth more than gold to me.

      In so many ways, I am a poster child for self-exams. I had a normal mammogram in July of 2012, and like everyone else, I said "OK, I'm good to go!" and walked away. In late January of 2013, I was lying in bed one night and noticed that my left breast tissue wasn't draping away from my body as it had before. I started feeling around, and noticed a hardened area towards the outside - it almost felt like a shelf in my breast. I gave it a couple of weeks to see if it was just a hormone thing, but when it didn't change, I RAN to my OBGYN...and bought my ticket to this crazy roller coaster ride we call breast cancer. I was diagnosed in late February, had my double mastectomy in mid-April, finished chemo in late September, and finished radiation at Thanksgiving. I had a little scare in November with a mildly high CEA (my CA 15-3 was normal at that time), but it normalized, and I walked forward in gratitude, thinking I was moving into my new normal. After the holidays, I started looking for work, and was made an offer earlier this month - I was due to start this coming Monday. Like everyone, I was trying to cram in all my medical stuff before I started the new gig - one of those appointments was an interval check with my med onc, so I went to get a port flush and have my labs drawn. Last Monday, the med onc called with the news that, although all of the rest of the labs were normal, my CA 15-3 was at 153 (normal ends at 35 at my lab). God bless him, he got on the phone right away to get the insurance company to preauthorize the testing, and get everything scheduled so that I would have some answers prior to starting this job.

      I've now asked the employer for a couple of weeks of grace in my start date, so I can get past the raw emotion, get all the results in, meet with my care team, and put a treatment plan in place. I'm hoping that they will find that compassion in their hearts. If not, I'll just have to walk away from that and make other choices. I've heard that chemo for Stage IV is not necessarily the same experience as primary treatment, and I know I survived that, so I'm not fearful in that regard.

      God clearly has a plan for me. I can't say I understand it, but the important thing is that I continue to walk forward in faith and leave the hard parts to Him. What I do understand in my heart is that there's still work for me to do here - lives to touch, joy to experience, memories to make - so my plan is to fight with everything I've got.

      My love to all of you,

      Namaste,
      Christine

      over 7 years ago
    • Lindy's Avatar
      Lindy

      Bless you, I recommend the Inspire site, all stage IV, a great bunch of sharing gals.

      over 7 years ago
    • GregP_WN's Avatar
      GregP_WN

      I will join the others in saying I'm sorry that your condition has gone in the wrong direction than we usually want. However, I hope that some of the WhatNexters we have on the site that have been in your shoes will chime in that they went through this too and are doing well now. I know we have them, but my poor memory won't let me recall who they are. I am wishing you the very best, and let us know as you get further test results in.

      over 7 years ago
    • Griffin's Avatar
      Griffin

      Praying with you.

      over 7 years ago
    • limbomom's Avatar
      limbomom

      So sorry you received that news. If it helps any, I go to a support group of women with metastatic Stage IV cancers, mostly breast cancer. Many of them have been NED for years after initial treatment. I am a 12 year breast cancer survivor now with ovarian cancer so my only warning to you is to be cognizant of the breast/ovarian connection. Other than that, it sounds like you have a wonderful attitude! With God on your side to help you over any difficult bumps in the road, you can't lose. I agree with Lindy - check out the Inspire site to meet some wonderful, wise and compassionate women (and a couple of men caregivers). I have found women with Stage IV to be generous with their experience and support - always ready to hold out a helping hand. Good luck and God Bless.

      over 7 years ago
    • KLC's Avatar
      KLC

      Hi baridirects. I'm sorry to be reading this news today. While definitely a huge setback, keep in mind what dls above said. You may continue to live a long full life, just having a different method of keeping things "in check". I wish all the best for you and am sending you a BIG hug. Thoughts and prayers will be with you.

      over 7 years ago
    • Bug's Avatar
      Bug

      My heart hurts to hear this news. Many blessing to you, Christine. The responses from others who have been in your shoes or who know people who have been in your shoes and are doing well are good to read indeed - it can be done. You are in my prayers and I am sending a warm hug to you. Your WhatNext family is beside you all the way.

      over 7 years ago
    • penny364's Avatar
      penny364

      Christine, I haven't been in your shoes and hope I never go there. But your courage, your willingness to share, your compassion and advice on this site have been a comfort to so many of us! I wish you could be spared this suffering, mental and physical. You have such a great attitude and are an inspiriation to the rest of us. Bless you and best of luck. Keep us posted. Hugs!!!

      over 7 years ago
    • dianalynn's Avatar
      dianalynn

      I was first diagnosed as stage 2 jan 2010. Was in remission and then received the news Christmas 2011 that my cancer was stage 4. Currently have cancer to my bones and lymph nodes. I UNDERSTAND!!!! I'm here to help in any way.

      over 7 years ago
    • TwinBirches' Avatar
      TwinBirches

      Christine,
      We will fight the battle with you. YOU ARE NOT ALONE IN THIS!

      over 7 years ago
    • carter4's Avatar
      carter4

      Stage 4 with bone mets here - 2 years and still working and living life - get tired but whatever - if you are on facebook there are some good sites for Stage 4 - it's going to be okay!!

      over 7 years ago
    • HearMeRoar's Avatar
      HearMeRoar

      DLS1007 - you're amazing, lady! Christine - I'm really sorry to hear your news. UGH. Sending love and hugs.

      over 7 years ago
    • Coolgm's Avatar
      Coolgm

      My heart goes out to you and all the others that are battling this disease. When I went through my ordeal in 1996 a very close friend of mine whom also survived prostrate cancer said to me "deal with it and move on". So I did. I've survived for nearly 17 years but I didn't do it alone. Surround yourself with caring supportive family and friends. Don't let anything stop you from doing what you care to do. Laugh as much as possible. Cry when you want. And let God in to help you. Take care. I'm praying for you.

      over 7 years ago
    • peachpoppy's Avatar
      peachpoppy

      I'm so sad to be reading this :(
      We are here for you and will do whatever is needed to help you through this.

      over 7 years ago
    • Carool's Avatar
      Carool (Best Answer!)

      Baridirects, I, too, am sad about your change. I wish you fortitude, lots of hope and love and support from those close to you - and we in the Whatnext community are here as well to do what we can to help. I am so encouraged by what others have said to you in this thread. It is good to know that so many who have "crossed that bridge" - I think of it as "going to the room next door" rather than a "bridge" - anyway, so many Stage 4 women are living active and long lives. Big hug to you, Christine, and good luck with your upcoming tests. Carol

      over 7 years ago
    • Tami's Avatar
      Tami

      I truly understand where you are at right now. I know you must be scared and dealing with all kinds of thoughts going through your mind. I am so sorry you have to go through this! I too am stage IV with invasive lobular cancer that has spread to my bones. You have such a positive attitude and strong faith! I know it will help get you through. I have had cancer for 6 years, 3 of which have been stage IV. Although stage IV is not curable it is treatable and I have a friend in my support group that has had it for almost 20 years. Mine had spread extensively throughout my bones before it was discovered and today I take Femara (to stop any estrogen from feeding my cancer) and Zometa to strengthen my bones. My last scan showed no evidence of disease (NED) which means my cancer is not active right now. Your doctors will work hard to find the right medicine that will work for you and with your positive attitude and God there with you every step of the way, you will touch many lives, have lots of joy to experience in the years ahead and many memories to make too. There is always hope! My prayers are with you.

      over 7 years ago
    • jad's Avatar
      jad

      I echo the thoughts of the other respondents. Your words to others here have always been so kind and helpful. I wish you strength, courage in dealing with what lies ahead. No one ever knows what the future will bring. But we can always meet it with hope.

      over 7 years ago
    • HOBO's Avatar
      HOBO

      Christine,

      Sorry to see this news! Please know you have many supporters on this site. You are always so kind and positive to others. I hope we can be that for you. Sending warm hugs.

      Jane

      over 7 years ago
    • barbsrec's Avatar
      barbsrec

      I'm so sorry to hear that you got such devastating news. My friend has stage IV breast cancer and has been in remission for 6 years. She is living a full and happy life and I sometimes think she is doing better than me. You can live a full life, there is so much more they know about cancer now than years ago. I know a lady from Ireland that has been seeing my oncologist and she has been in remission for 16 years. You can live with this, I will keep you in my prayers and wish you love. When you start to think just a little too much and start to get down just remember there are people that are surviving with this. Lots of love and hugs sent your way.

      over 7 years ago
    • Joachima's Avatar
      Joachima

      So very sorry to hear of your news ... it is something that we all fear. This site is so wonderful because of people like you who have been supportive to so many. I find strength in reading so many survival stories here - You can do it!!!!! I'll be praying for you.

      over 7 years ago
    • tnblondee's Avatar
      tnblondee

      Christine,
      God bless you through this next journey, your faith is truly inspiring! As most of us here know once you've been diagnosed with the Big C you are always in fear of its reoccurrence. I had the misconception that once it spread to the bones or became Stage 4 that it was game over. It is so encouraging to see that even with that diagnosis there is still not only hope but living proof that we can still survive this battle! Again God Bless and keep on keepin on!

      over 7 years ago
    • lola08's Avatar
      lola08

      I know exactly how you feel to hear the news about being stage IV. It's devastating & so frightening!!! I was really very angry at first - having been through all of the treatments & doing EVERYTHING my doctors told me to do!!! And obviously it didn't work like I expected it to. The larger lesson that I'm learning on this leg of my journey is that there are no guarantees when dealing with this ugly beast!! If you really think about it, there are no guarantees about anything in life. So with that in mind, I move forward one day at a time & work on treating this disease. The way my dr described it to me is that while it is no longer curable it is very treatable. New & improved drugs. He immediately changed me from tamoxifen to Arimidex daily & monthly Faslodex injections. I've been on this regimen for 1 year & everything is stable - so thankful!!! Of course now I have labs drawn more often & scans every 3 months to stay on top of things but it gives me peace of mind to help me live my life. I continue to work part time & I stay very active with my adult kids & husband. So what I want you to know is that yes, there's life after a dx of stage IV - different of course but it's still life & it's still good!!! Hang in there - the toughest part of all is the diagnosis phase where you are right now. Soon you will have answers & a treatment plan & you will feel a sense of peace. Breathe.

      over 7 years ago
    • Gabba's Avatar
      Gabba

      Dear Christine, you are in my thoughts and prayers.

      over 7 years ago
    • jantenaj's Avatar
      jantenaj

      I am so sorry to hear of your news. I also was told I had metastatic breast cancer to the bone. My first diagnoses were 'caught very early' so I had lumpectomies both times. I must admit it was a shock at first, but then I realized I had to move on and fight this with every part of my being. It has been 7 years since I had the state iv diagnosis, and I enjoy every day. My oncologist is a wonderful, caring person who also said it is not curable, but treatable. They have just approved two newer drugs when the time comes. My father was given two to three months back in 1972 with his stage 4 cancer, and he said he wanted to be around for his new granddaughter's graduation, and he lived 19 more years and made it to her graduation. I try to remember his faith and determination and follow his lead. This was the 5th diagnosis of cancer in my life, and I have a new great niece born December 2013, and I plan on being there for her graduation.

      over 7 years ago
    • leslie48240's Avatar
      leslie48240

      Christine...just want to add that I also am stage IV and still here after 6 1/2 years. For me...chemo did the trick --altho it was 18 months ...and a whole year of it weekly. Still...that is just a distant memory now and I am sure enjoying life. So hang in there...we are with ya. Always appreciate your supportive posts...sad to see this one. Big hugs!!

      over 7 years ago
    • parank's Avatar
      parank

      The comments here are so inspiring. Such amazing people WhatNexters are! Christine, you are constantly in my prayers. I love lola8's advice. Breathe. Just breathe.

      over 7 years ago
    • baridirects' Avatar
      baridirects

      Good morning, everyone,

      First off, many, many thanks for all your wonderful posts, and your expressions of support. It's a huge comfort to know that I'm not alone on this path.

      I did meet with my oncologist yesterday, and got a bit of brighter news that the mets are indeed confined to the bone - my brain MRI and chest/abdomen/pelvis CT scans were all normal, thank God - and even at that, the lesions are not extensive, so we did catch it early. He's pulling me off of tamoxifen right away, and starting me on Femara, Xgeva, and Faslodex, and adding calcium and Vitamin D to my supplements. In addition, I'm going to schedule surgery to have my ovaries removed - I had a hysterectomy in 2011 for fibroids, but the surgeon talked me out of having everything else taken out, telling me that it would be better for me to go through menopause naturally. If I had only known then what I know now, I would have laid some pressure to bear, but that's all water under the bridge. They will check bloods monthly, and scans quarterly. In 3-4 months, we'll assess if the treatment is working, and if not, move on to another plan.

      I made the tough decision not to move forward with taking on the new job I was scheduled to start on Monday. At this point, I need to focus all my energy on the fight, and trying to perform at a high pressure/high stress position at the same time just doesn't seem like it's in my best interest. I have my disability payments coming in, so once I'm stabilized and past the surgery, I'll look for something low key and/or part time.

      I've shed some tears over this, as has my husband. I know that it will take me a bit to truly wrap my head around this. I do feel some better today, though...having a concrete plan forward and feeling as though I can play a huge part in my ongoing care is very uplifting. It will be a tough battle, but I'm up for it. As long as I'm still breathing, I'll be fighting.

      Namaste and love,
      Christine

      over 7 years ago
    • Carool's Avatar
      Carool

      Christine, I'm so glad your tests came back NEGATIVE, and that your bone mets are not extensive. Good thoughts and feelings going to you from here in the wilds of Brooklyn! Big hug! Carol

      over 7 years ago
    • lilymadeline's Avatar
      lilymadeline

      Hi Christine,
      That is great news and I am so happy that your tests came back negative and that the bone mets got caught early. Take care of yourself, we are always here for you! Hugs!!! xoxoxo Jane

      over 7 years ago
    • HOBO's Avatar
      HOBO

      Good morning christine,

      Things look a little brighter today. I know you will face this head on and sounds like you have a plan. Please be good to yourself and know we are all walking this path with you. You are not alone. Sending you warm hugs.

      Jane

      over 7 years ago
    • Bug's Avatar
      Bug

      Christine, I am so happy to hear this news. Good for you. You have a plan - I know that feels good. Please take care. Looking forward to hearing how you are doing. You remain in my prayers. Big hug.

      over 7 years ago
    • KLC's Avatar
      KLC

      A rainbow after the rain. Keep focused on the positive Christine. You've been inspirational to so many people. May your light continue to shine on for a long, long time. Hugs !

      over 7 years ago
    • lola08's Avatar
      lola08

      Thanks so much for sharing your great news!!! I will be praying your new treatment plan will be exactly what you need right now. Remember - it's treatable. Monthly labs & quarterly scans are now a part of our lives but we can certainly do it in order to stay on top of things!! Once you see that you are on the right treatment plan, you will be able to take a deep breath & move forward. Again. We CAN do this!!!

      over 7 years ago
    • katiefnp's Avatar
      katiefnp

      Dear Christine:
      I am very, very sorry for your diagnosis.
      The words we all fear coming out of our Dr's mouth.
      You are always so kind and helpful.
      I am new to What Next, but have received much from your generosity.
      I will light a candy for you on my Alter today.
      God Bless. Live Aloha. Katie Williams

      over 7 years ago
    • luv's Avatar
      luv

      Have you yet read phkillscancer.org??? It may work for you. Baking soda in Molasses!

      over 7 years ago
    • luv's Avatar
      luv

      Dr Lee's Hormone Balance made simple. He wrote a great book about " what your doc won't tell you about breast cancer" AND if we can figure out our hormone problem then I believe we can prevent our cure breast cancer.

      over 7 years ago
    • baridirects' Avatar
      baridirects

      Thanks for everyone's posts...I have had continuing good news...my tumor markers are now significantly below what they were when I was diagnosed in March...while still not normal, the downward trend is very encouraging. The side effects from the meds are definitely livable...I'm in the gym at least an hour every day, I'm in school, actively performing with both my quartet and my chorus, and doing a fair bit of advocacy for metastatic breast cancer, both locally and Nationally.

      Although I've made some changes in my dietary plan, I've chosen not to do anything radical - there's just not enough reproducible data from reputable scientific sources to prove that some of those things make a difference to Stage IV patients.

      I will have my next set of scans done in August, when we'll get a much clearer picture of what's happening. For now, though, I'm focusing on living, not on my disease.

      Hugs all around,
      Christine

      over 7 years ago
    • Bug's Avatar
      Bug

      Good for you, Christine. So happy to hear this. : )

      over 7 years ago
    • penny364's Avatar
      penny364

      Wow, you are such an inspiration and role model for us all! I am in awe of your strength and courage. My thoughts and prayers are with you. Fight the good fight and don't let cancer define you. Best wishes and hugs!

      over 7 years ago
    • Lindy's Avatar
      Lindy

      I am so sorry to hear your news, check with the Inspire web group, they are all stage IV, great sharing of different protocols and status. There are gals on there who have lived years with bone mets. I will put your needs in my prayer bowl. I wish for you success with whatever you and your oncology team choose.

      over 7 years ago
    • KLC's Avatar
      KLC

      That's fantastic news Christine ! The downward trend in tumor markers are very encouraging. Sounds like you've not let the Stage IV level slow you down. . .keep on living to the fullest ! : )

      over 7 years ago
    • leslie48240's Avatar
      leslie48240

      I think it was a very wise (tho difficult) decision to not take the new full time job. Not a time in your life to be adding stress! Hope things continue going in this most recent direction...test results and lower tumor markers!!

      over 7 years ago
    • parank's Avatar
      parank

      Keeping you in my prayers and close to my heart, Christine. So glad to hear the good news about the lowering of the tumor markers. You go, Girl! xo

      over 7 years ago
    • Valour's Avatar
      Valour

      After nine years cancer free from lobular breast cancer… surgery chemo radiation tamoxifen...Was diagnosed with bone Mets in March 16!!and placed on levetrole! and Ibrance… Does anyone have information about using these two drugs

      over 5 years ago
    • Griffin's Avatar
      Griffin

      I am praying for you and asking that you stay covered in the Blood of Jesus. You are strong and you are strong and a survivor.

      over 5 years ago
    • dianalynn's Avatar
      dianalynn

      Yes! I've been on Ibrance and Letrozole since last July. I do acupuncture for the hot flashes and joint pain from the Letrozole. I had to switch to the 100mg Ibrance because my white count went too low. I can't work out at the gym like I used too, I bottom out easily. But I'm still kicking and I guess that's what matters!

      over 5 years ago
    • mytoby's Avatar
      mytoby

      Praying for you, for God to keep you strong and for him to heal you. Try to stay positive and pray God will get you through this. God bless you.

      almost 3 years ago

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