My wife has stage IV breast cancer.

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BCHelpPlease
BCHelpPlease Member Posts: 2

My wife was operated from breast cancer 5 years ago. She is currently 36 years old. Until two months ago everything was normal. But then everything happened so very fast. She experienced neck pains. We immediately made a CT scan and it showed metastasis on the first vertebraes. We immediately did radio therapy because the pain was getting unbearable. Now they found metastasis on her liver, it is very enlarged and she also has edema on her neck.

She is currently on Manitol, Dexametasone, Transmetil pain killers and a few other medications. She is assigned chemo therapy but at the moment she is not stable enough to undergo it. She basically can not move because of the neck.

I have researched a lot about her condition, I also knew about it when she was first operated but it happened extremely quickly and where we live (Bulgaria) they don't have the practice to tell you anything about prognosis or where you can go to do a better treatment or anything at all it seems. I know it is very serious condition but please give me whatever information you have. Are we missing something? Is there a clinic or medication that can help her in her condition? Does she have at least a small chance of surviving?

Thank you!

Comments

  • illimae
    illimae Member Posts: 5,710
    edited May 2017

    It's difficult to comment on treatment options without knowing her type of BC and if it reacts to hormones, HER2 status, etc. but there are many women here who live several years with bone and liver mets. Don't lose hope.

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2017

    Dear BCHelpPlease,

    We are so sorry that you wife is dealing with metastatic breast cancer and in a good deal of pain. If you review your profile and make your wife's diagnosis and treatment options public they will appear under your signature line and offer the community a bit more information about her particular disease and what might be pertinent. You can also review the articles on our Main Site that focus on bone mets. Please Pm the mods if you need assistance with any of this. The Mods

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited May 2017

    Ask them about other interventions for her liver, besides chemotherapy. Make sure you are very clear as to why they are holding off on chemotherapy - what about her condition is not stable enough for chemo?

    To tell you more about treatments, it would be helpful to have more information about her pathology. Is she estrogen receptor positive? Is she HER2 positive? Has she had BRCA genetic testing?

    When I was first diagnosed with Stage 4, my CAT scan lit up like a Christmas tree. I had a whole bunch of cancer. I am entering my sixth year of treatment, and feeling pretty darn good, actually.

    Don't let go of hope, just go get some answers!

  • BCHelpPlease
    BCHelpPlease Member Posts: 2
    edited May 2017

    Her HER2 is 1+ negative

    ER 8-75% chance to reply

    PR - 0 negative

  • stagefree
    stagefree Member Posts: 2,780
    edited May 2017

    hi,

    I cannot comment on the specific details of your wife, but can say it's worth a visit to Istanbul to a clinic, to learn about your options.. Health tourism is extremely advanced here, as you probably know. Hope she gets a proper treatment soon.


  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited May 2017

    Ebru (stage free)has a good idea in that you could go elsewhere for a treatment protocol, and head back home for treatment implementation.

    It looks like your wife is HER+, and ER+. The ER rating is a pretty wide value - I'm not familiar with that sort of range.

    Without treatment, HER2+ cancer can be very aggressive. It would seem like addressing that is the priority. Unless she has cardiac failure, she should be eligible for Herceptin, as soon as possible. Please confirm HER2 status, as I'm not familiar with how you are reporting it.

    Is this a situation where a bit of extra cash would come in handy for private care, just to get things started?

    I am not a trained medical professional, and any advice you get here should be confirmed with your wife's medical team.

    Ebru - if he wants to go traveling, where would be good?

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited May 2017

    Blaine... HER 2 + 1 is considered HER 2 NEGATIV

  • stagefree
    stagefree Member Posts: 2,780
    edited May 2017

    hi Jen,

    Depending on their financial status, we have a variety of options..

    I see loads of people from Eastern Europe, Asia and elsewhere each time I visit a clinic. And yes it's a great idea to get opion and move on with treatment in Bulgaria, possibly.

    They would need a tourist / patient (?) visa to enter Turkiye and via an agency can be directed to the doc/clinic of their choosing.

    We are directly following FDA protocols, with some private exceptions of some European trials as well.. I really hope this info helps.

  • JFL
    JFL Member Posts: 1,947
    edited May 2017

    BCHelpPlease, I was in really bad shape when diagnosed at 38 - could barely walk due to extensive bone mets throughout entire body and had a liver full of mets. My bone mets were very late stage at that point and were causing me extreme, uncontrollable hypercalcemia which is a bad prognostic indicator. My mets are very aggressive and grow very quickly. Two and a half years later, I am running, working full time and living a completely "normal" life. I have had two progressions where my liver mets grew quickly since diagnosis, but so far, each new treatment has worked. My bone mets have been stable since initial diagnosis and haven't progressed. Bone mets take 6 months - a year to heal but they can improve, slowly but surely. One benefit of aggressive, fast growing cancer is it usually responds the best to treatment and responds quickly. I hope your wife finds some medications that put the cancer in check for now. This is all very hard and scary but it can be manageable for a very long time.

    Also, not sure if she is hormone (estrogen receptor and/or progesterone receptor) positive but if so, she may be able to start hormone therapy if not well enough to do chemo. Young women tend to have high estrogen levels so hormone therapy can be very effective.

  • stagefree
    stagefree Member Posts: 2,780
    edited May 2017

    JFL, you described my exact shape at dx. Nobody thought I'd see 6 months, and here I am after 5 years!

    Treatment works!

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