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My sister had her first appointment with oncologist last week expecting to have a port put in and receive info on chemo. Instead she learned that she has bone mets and the only treatment offered is for her to start goserelin injections. She is going to Cleveland clinic in Weston FL. The dr said they only see 2-3 IBC cases per year. Should we be concerned that chemo isn't being considered at this stage? I'm going with her to her next appointment but would love to hear others' experiences. Thanks

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

    sisterofteresaibc, we're sorry for you and your sister's diagnosis, but glad you've found us!

    As with other types of breast cancer, treatment options for IBC depend on the characteristics of the cancer itself, as well as patient's preferences and needs. If your sister is not happy with the recommended treatment or the doctor's experience on this type of cancer, you can always seek for a second opinion. Here's more information on Getting a Second Opinion from the main Breastcancer.org site, including why, where and when to get them, and what to expect.

    We hope this helps. Please come back to let us know how next appointment goes.

    The Mods

  • meganin
    meganin Member Posts: 4
    edited February 2018

    Sorry for what you are going through. I just want to let you know that MD Anderson Cancer Center in Texas does a lot of research and treatment of IBC. If this is something that can be of interest to you, check it out. You can visit their website to see what they offer. They have a lot of helpful information about IBC that you may find useful. I hope all goes well for you. Meganin.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2018

    I'm sorry for your sister. IBC, generally staged at IIIb or IIIc depending on the number of lymph nodes which are tumorous, which is generally treated first with chemo to reduce the inflammation, then surgery, then radiation. However, Stage IV cancers make it urgent to arrest the spread to other parts of the body and likely that's the reason to start with the injections. Be sure that your sister is told her full treatment plan and that she understands the logic behind it. Certainly keep us posted.


  • LoriCA
    LoriCA Member Posts: 923
    edited March 2018

    I am so sorry for your sister. I strongly suggest that she gets a second opinion. As Traveltext said, make sure she understands the treatment plan and the logic behind it. If her doctor doesn't think that chemo to quickly stop the spread is appropriate, make sure she understands why that is their recommendation. The scary thing about IBC is that there often isn't much time to waste.

    IBC is very aggressive and can spread right before your eyes. I was Stage IV de novo with mets to liver and bones, it also spread to my other breast, broke through my skin. got into the brachial nerves and was about to break through my chest wall...all within days and while I was in the hospital. One day my bone scan was clear and two days later a PET scan showed more mets than they could count in my bones. My oncologist said my only hope was to stop it from spreading so quickly or I would be dead within weeks (I didn't even have a port put in until I was sure that I would make it past 60 days), and I started on chemo with Taxol immediately. Thankfully I had a wonderful response to Taxol that surprised everyone. Not only did it stop the spread, it has shrunk most of the tumor and apparently my bones are even showing signs of healing on my last PET scan. We've now added Herceptin and Perjeta because I'm HER2+. But that's me, everyone is different and every cancer is different.

    The important thing is to understand the treatment plan and what the goals are for each step, and to be comfortable with that plan. Especially at Stage IV when quality of life becomes a primary issue. It's wonderful that you are going with her to her next appointment. Please take a notebook and write notes for her. It's also a good idea to write down all of her questions before the appointment. A Stage IV diagnosis probably has her head swimming, it's hard to keep things straight until you get your head wrapped around it.

  • sisterofteresaibc
    sisterofteresaibc Member Posts: 2
    edited March 2018

    Thank you for the comments and shared personal experiences. During our appointment yesterday the dr shared two treatment options: hormone only vs chemo. Biopsies of breast tissue came back HER2 negative but axillary lymph node came back inconclusive so was sent back for retesting. If it comes back positive, dr says chemo is better option. Her breast biopsies were 100% sensitive to estrogen so she received her first zoladex injection yesterday. Pending results of bone biopsy, mri spine and mri brain, she will either begin full hormonal treatment (zoladex, letrozol, ibrance + demo something for bones), or flip to chemo depending on those results. I have many concerns around time sensitivity since the dr said it didn't matter if we started treatment now or one month from now. 2nd opinion is scheduled for 3/27

  • LoriCA
    LoriCA Member Posts: 923
    edited March 2018

    I hope she has a good response to the Zoladex sisterofteresa. I wouldn't be quite as concerned about time sensitivity now since they did start her on a treatment that they believe is appropriate and they can explain their plan. Treatment is different for every individual. If they say there is no reason to start chemo or additional treatment immediately I would hope that means that her cancer isn't spreading as quickly as mine did, which is a good thing (well, as good as a Stage IV diagnosis can be, but we learn to grab on to those small positives).

    It is a shame that she has to wait so long for a second opinion. You'd think that the words "Inflammatory Breast Cancer" would create a sense of urgency, but I found out that isn't always the case. Big hugs for both of you, I hope she responds well to her treatment.

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