30 years old with stage IV IBC and bone mets

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cro256
cro256 Member Posts: 5
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hello,
 
My name is Casey. In February 2010, after months of trying to get someone to listen to my breast concerns and actually self-diagnosing myself through Google, I was finally diagnosed with Inflammatory Breast Cancer. I found out I'm in Stage IV with bone mets. I was immediately started on Herceptin. But, since I found out right before I got married, the chemo began when I returned from my honeymoon. I was receiving Herceptin, Taxotere, and Carboplatin up until last month. After doing another PET/CT scan, it was revealed that although the intensity and size of the cancer in the breast was decreasing, the cancer was continuing to spread to other bones. So, since the treatment wasn't effective, I am beginning a new treatment.
 
Next week, I will begin Tykerb and Xoleda. I will also receive a monthly shot to shut down my ovaries and set me into early menopause (guess I won't be having kids afterall!). I will also continue receiving Zometa. I live in Philadelphia and have been very fortunate to see some great doctors at some great centers (Fox Chase Cancer Center, UPENN). But, I still have many questions and am seeking help from others in similar situations to share their knowledge and/or advice.
 
1. From everything I've read/heard, there is no cure for bone mets....is this true? Also, sometimes the bone mets are very, very, very painful....is this normal?
 
2. I have lots of people try to tell me what to eat and drink and what my diet should look like because diets contribute to cancer. Some make me feel like it's my fault and I brought the cancer upon myself with my eating habits.... Does anyone else have to deal with this and if so, how do you do it?
 
3. Before finding out that the cancer spread to bones, the plan was to do chemo to shrink the tumor, then possibly radiation, then mastectomy. After finding out the cancer spread to the bones, I was told by one doctor that it was pointless to do the mastectomy. Pretty much....since the horse is out of the carriage, there's no reason to do the mastectomy. Are mastectomies not typically done once the cancer moves out of the breast? 
 
I believe those are all the questions I have...for now. I have been remaining positive and upbeat and ready to fight. But sometimes I hear things or read things that are quite upsetting and I can start to lose my strength to fight..... I also read and hear many things that are uplifting and give me the strength and the power I need to overcome this battle.
 
Anyone who can offer anything, I greatly appreciate it. I am trying to find others who are in a similar situation who can become part of my cancer posse and offer me insight into their experiences.
 
Thank you,
Casey (cro256@aol.com) 
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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited August 2010

    Casey, I am so sorry you have joined the club no one wants to join. I suggest you post your questions on the Stage IV board, as those ladies can answer any and all of your questions. My thoughts and prayers are with you. I can say that I have found two books about diet very useful:

    The Anti-Cancer by David Servan-Schreiber and Foods to Fight Cancer by Richard Belevieu.

    Big gentle (((HUGS)))) to you. I am sure the Stage IV folks can help you with any questions you may have.

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited August 2010

    Casey, I am so sorry you have joined the club no one wants to join. I suggest you post your questions on the Stage IV board, as those ladies can answer any and all of your questions. My thoughts and prayers are with you. I can say that I have found two books about diet very useful:

    The Anti-Cancer by David Servan-Schreiber and Foods to Fight Cancer by Richard Belevieu.

    Big gentle (((HUGS)))) to you. I am sure the Stage IV folks can help you with any questions you may have.

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  • hrf
    hrf Member Posts: 3,225
    edited August 2010

    Casey, so sorry you are finding yourself in this situation. I agree that the ladies in the Stage IV board can answer your questions better than I can. I just want to say that  you did NOT cause this to happen to you. It is not your fault. The person who finds the reason why we get bc will win a Nobel Prize but in the meantime, people, who don't understand, make statements that can be painful. We all just do the best we can. Best wishes.

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  • JannyM
    JannyM Member Posts: 67
    edited August 2010

    Dearest Casey, I can only pray that you can feel my hugs, my love and my prayers.  I am brand new to this Disease ... diagnosed 7/08/10 with Triple Negative Stage III; and I have already experienced a great deal of warmth and received a great deal of knowledge from the girls on these Boards.  I congratulate you on your recent marriage and pray that you both are blessed with many happy, healthy years to together.  I agree w/all the  others about the "Stage IV" Forum ... I'm sure that you'll receive an abundance of information from them :)  God's Speed!!!!! Jan :)

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  • cwrightrn
    cwrightrn Member Posts: 242
    edited August 2010

    Hi Casey--I'm so sad to see that you are joining us!  NONE of us wants to see someone else on here BUT now that you're here, you will find great support and information.  I'm glad you posted in the stage IV forum too.....I usually pop back and forth between the IBC and stage IV forum.  A lot of us have little blurbs with our info at the bottom of our post--feel free to find fellow ibc'ers and click on our name--that will take you to our profile to see our biography....and how we are treated.  IBC is very aggressive and is treated quickly and aggressively.  To have surgery or not is a discussion you need to have with your hubby and doctor.  I personally felt like I needed to "get it out" eventhough after chemo my skin had cleared up and my tumor was gone  BUT at the time of surgery they found that it was in the lymph system.  You just never know.

    This is a new chapter in your life....cling to your support systems, do your research, take a deep breath and remember you are a FIGHTER and you can do this!  We are all here for you

    Blessings and hugs

    Carole 

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  • SeanE
    SeanE Member Posts: 107
    edited August 2010

    1.  Bone mets are not "curable" in the sense that you can ever be pronounced "cured" from cancer, but otherwise are just as "curable" as any other kind of mets, and usually more so.  While the damage they cause often remains, the tumors can be killed, and the bone can be strengthened again via surgery/pins and/or biphosphonates (Zometa, usually).

    My wife's met to her left humerus was sometimes painful, but that has gone away with treatment.  This varies from person to person.

    2.  Don't obsess too much over what to eat/what not to eat.  In general, a healthy diet for a normal person would be a good diet for a cancer person.  Many here subscribe to the Servan-Schreiber book, but there is little solid clinical evidence even for his approach.

    3.  As to whether to have the mastectomy or not, that depends on how extensive your bone mets are.  My wife is in a trial at MD Anderson for Stage IV patients with bone mets, to treat with "curative intent", meaning they went ahead and did the mastectomy, removed the small bone met in her skull, and radiated the other bone met in her humerus.  If your mets are more extensive than that, it's really up to you.  There was a recent study that did show survival benefit even for Stage IV when the primary tumor (breast with the cancer) was removed.

    By the way, Fox Chase is absolutely the best place to be, other than MD Anderson, for this kind of breast cancer.  Dr. Cristofanelli, considered the world's expert on IBC, just moved to that hospital from MDA, and is starting another IBC clinic there.  You are in good hands!

    Best Wishes,

    Sean E.

    Houston, TX

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  • ev1989
    ev1989 Member Posts: 22
    edited August 2010

    Hi Casey, I am a 3 1/2 year IBC survivor with bone mets and skin mets. I will answer your ? to the best of my ability. 1. Even though the bone mets are usually  not curable, you can live many years controlling it. I am on the bone strengthening drug Aredia which also helps keep the pain manageable. 2. This cancer is not your fault. I needed to hear that at the beginning of my journey for reasons like yours. I was reminded that cancer strikes the young and the old, the heavy and the thin, male and female. Don't let anyone tell you what causes cancer, if they knew there'd be a cure. 3. I had a double mastectomy. I asked if it was needed since I was 3B at the time. My onc and surgeon said that leaving it was not a good idea as it can ulcerate and decrease your time. Even though mine came back, I believe that it has given me more time here than I would've had without it. I would get a second opinion on this one and pray about it too. Love & Prayers,  Elizabeth 

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  • meena1
    meena1 Member Posts: 16
    edited August 2010

    Hi, first of all we are neighbors!  I live in Philly and i will also be going to Fox Chase Cancer Center.  I a 54 years old, i was diagnosed in July 2008 with IBC with bone and liver mets.  I was in remission for a year and was just diagnosed with a reoccurence on June 3, 2010.   My bone mets are in my spine, and i agree they are very painful and incurable.  I have been taking percocets, however, i will be seeing a pain management specialist at Fox Chase.  I am going for a pet scan thomorrow and MRI on Monday, back to Fox Chase on Sept 7.  I am also seeing Dr C.  i am just transferring to him from a different doctor.  I am not sure of my treatment plan yet.   take care

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  • myronniebug
    myronniebug Member Posts: 1
    edited January 2011

    Casey, Just wanted to let you know that you are not alone. My name is Ronnie and I was diagnosed with IBC stage 3 three weeks before my 29th birthday(Aug 6, 2009).  I did all the treatments my oncologist has recommended and just had my 4th PET scan which came back with bone mets. It is daunting to say the least but there is always hope. You will be in my thoughts and prayers. 

    - Ronnie

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited January 2011

    Hi Casey,

    Hope you are doing well, this is the first time I have seen your post.  I was Stage IIIb IBC ~ triple neg.  I am now a 3 years out from diagnosis with NED.  I can't speak to your mets but I can speak to the IBC.  I have learned a lot on this forum about IBC & triple neg.  (my numbers)

    1. I didn't know I was triple neg until a few months ago, my doc didn't explain that part to me, go figure. 

    2. IBC effects the lymph vessels to the skin which is what causes the rash.  I just recently learned how to do manual lymph drain since I have LE in my right arm. There I learned more about our lymph glands.  We have Tons of lymp nodes throughout our intire bodies. 

    3. I had a BMX which I would do again even if I did have bone mets.  As the others have said, it's not curable but treatable.  I would still want the cancer out and that gives less chance of reoccurance. 

    Last, I am not a doctor but expressed my little bit of knowledge & how I feel about my experience.  So again, I hope your treatment is working for you. 

    Sending love & prayers. NJ

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  • lindaa
    lindaa Member Posts: 119
    edited January 2011

    Hi Mrsnjband,

    I have followed some of your posts. You are an inspiration for sure.  I am only 6 months out and still in treatment.  No surgury yet - I hope to get there.  Did you do anything special or different over the 3 years or while in treatment?  Any special diet or exercise tips to share?  Any vitamins to take or any to avoid?  Us trip neg IBCers need any extra boost we can get.  Thanks. Linda

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