Stage IV breast cancer - in bones

melanie215
melanie215 Member Posts: 1
edited March 2014 in Breast Cancer #1
I have just been diagnosed with lobular breast cancer that has spread to my bones. I currently am on Arimidex with no plans for either surgery or radiation. My oncologist says this is the best treatment for now. I live in Baltimore and am trying to get a second opinion from Johns Hopkins hospital soon. I am 55 years old, scared to death, and the list of unknowns is endless. I am also despressed and can't seem to shake the feelings of dread. Is there anyone else out there that has been diagnosed with this type of breast cancer (lobular breast cancer that did not even show up on a 12/27/06 mammogram). My only symptom was back pain. I'd love to hear from someone who can give me insight on how to get from day to day and live my life again. My husband has been great - it's me that can't seem to find the energy to even get out of the house.

Comments

  • jeanette7
    jeanette7 Member Posts: 18
    #2
    I HAVE LOTS OF LOVE ,FOR YOU, FOR THE LAST TWO YEARS TESTING, ME FO BREAST CANCER TRYING TO FIND A SMALLDOT THEY SEEN ON MY MOMNAGRAMTWO YEARS AGO. ONE YEAR DOTS THIER NEXT YEAR NO.
    ALSO MY BACK PAINS COME AND GO MY GRILFRIEND SAID ITS BECAUSE I PRAY DAILY CHECK OUT MY WEB SITE WWW.PRAYERANDHELP.ORG
  • Susan956
    Susan956 Member Posts: 510
    #3
    Melanie,
    I was only Stage 2b, so I have no experience with bone mets. But I do know that many people have managed to deal with them. I hope that you will find someone here that has that type of experience. I know a lady (only vaguely) from my Onc office that has been Stage IV for over 10 years. She goes to M.D. Anderson in Texas for some of her checkup and uses them for protocols. I live in S.C. so it is closer and it is associated with the Medical Center that we have here. Johns Hopkins should be a great place to go. Getting a second opinion will at least give you more peace of mind.

    We all understand the fear. The beast has a way of getting deep in our heads... but with time... you can decide to kick it out of your head.... it is not easy... But give yourself a break you have just been given an extremely scary diagnosis and it takes a while to get your head around the trip.

    I just wanted you to know that you will be in my prayers. Take care... God Bless...

    Susan
  • cabbott
    cabbott Member Posts: 1,039 Member
    #4
    http://www.hopkinsbreastcenter.org/
    For an Appointment Call: 443-287-BRST (443-287-2778)

    Dear Melanie,

    My heart goes out to you. I am a breast cancer survivor since 2002. I well remember the panic I had when I first found out I had cancer and knew I needed to get to the best doctors I could find. But I had no idea where to turn to get an appointment. Then I found a website written by a nurse(Lillie Shockney)and a number to call at Johns Hopkins. The Breast Center is right at the Outpatient Center and they really know their stuff. I met Lillie and she's even nicer and more knowledgeable in person than she is on the net. You couldn't be in better hands. The oncologists in the Weinberg Center are great too. The folks at the Breast Center can give you their number if you don't already have it.It doesn't matter how much I read, the doctors at Hopkins are always up to date on the latest research and that's what you need when you are battling cancer.I have LCIS as well as ductal carcinoma and a few other messed up cells. I have read that lobular cancer often doesn't show on a mammogram and may feel more like a rope than a lump when it is detectable by feel. It is closer to the chest wall so it is harder to detect manually and on film. I think MRI's are sometimes used to determine what is going on. I would ask the doctors when you consult them if you would be a candidate for Fosamax or some other bone-builder to strengthen your bones. That might help keep the cancer at bay too by giving the cancer less room to get a foot in and less space to grow. Many many many of us cancer survivors get depressed. Why wouldn't we be depressed when you think of it! Talking to other survivors, getting daily exercise, eating a healthy diet, making a plan to deal with the cancer and taking things one day at a time help wonders. But antidepressants can help too if the above isn't doing enough. Again, talk the doctors and nurses till your questions are answered. Good luck!
  • LesleyH
    LesleyH Member Posts: 370
    #5
    Melanie,

    I am so very sorry that you have joined us. These ladies have given you excellent advice. Please do contact the nearest large breast center (like JH). I actually do know someone who is 20 years past a diagnosis of Stage IV BC. She is in total remission. I agree Lobular does not show on a mammogram.

    I was diagnosed with Stage III and live in dread. I really find that exercise helps relieve the anxiety a lot. I walk 5 miles every day - even in Denver. You may need medication to get you through this time. I would not hesitate to ask.

    Hugs.

    Lesley
  • jmears
    jmears Member Posts: 266
    #6
    Hi Melanie - I live in Frederick MD and know Hopkins very well ... my daughter works for Hopkins. They do have a great reputation. I do not have lobular BC but I do have mets to the bones. I was DX stage 2 in 2000. Thought it was gone ... 2005 found spots on my spine and hip. I was taking Tamoxifen and then my Onc switched me to Atimidex. Since I am HER2/Nue positive (meaning an agressive gene) it didn't take to that. I switched to a couple other things and then put on Herceptin. Herceptin alone slowed everything down but still didn't stop it so I started Xeloda (an oral chemotherapy for advanced BC) and my bone scans are clear. I should mention I also had radiation on the spine and hip. I actually didn't think I had back pain but when I completed my radiation my back felt really good so ... I guess the cancer was effecting my back. Maybe radiation will ease your pain. AND I have been on Zometa since the very beginning. Zometa is a bone strenghtener. Patients with Osteoperosis take Zometa. I think the key is to get all the pathology factors .. like is it estrogen positive, her2/nue positive. Then they can find the best treatment. I am very sorry that you have to go through with this ... I'm glad to hear you have a good supportive husband. Mine is too. I have had to stay on anti drepessants in order to maintain a normal life ... and I believe they really work. After all ... who wouldn't be depressed! So if it is any consolation ... I've been at this for 6 years ...I'm 49 and expect this is my new way of life ... I am treating it as a chronic illness ... because I am not disabled, never missed more than 2 weeks of work (for original surgery) and expect to be around to retire ...just like everyone else. So ... get as much care as you can ... JH is great ...my Onc uses the same protocals. If you want to email me directly ...please do ... my home email address is jamie112357@adelphia.net.

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