Just diagnosed with a recurrence in my pelvis

jnprsn
jnprsn Member Posts: 151
edited May 2016 in Just Diagnosed With a Recurrence or Metastasis

I was diagnosed with a breast cancer recurrence in my pelvis this morning. Going to.have a biopsy to see if I'm still ER positive.

Does anyone know the average life expectancy or range for bone mets?

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  • KBeee
    KBeee Member Posts: 5,109
    edited February 2016

    It varies significantly; it depends how it responds to meds. My mom's best friend had a couple isolated bone mets 14 years ago. And she's still here and still my mom's best friend. Assume you'll be like her until proven otherwise.


    I am sorry your are dealing with that though. Breast cancer sucks.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2016

    jnprsn, Karen gave you excellent advice. There are many women on the discussion boards here on BCO who have been living with mets to the bone and other places for many years. Stats you may find online are outdated, so try not to read them, and if you do, don't take them to heart. I know it's quite a shock, but don't be discouraged. The right med will make a huge difference, and it sounds like your docs are on top of things.

    When you get more info' and feel like it, come join us on the Bone Mets thread. Here's a link: https://community.breastcancer.org/forum/8/topics/...

    Deanna

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  • jnprsn
    jnprsn Member Posts: 151
    edited February 2016

    Thanks so much for your support. 14 years is encouraging.

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  • jnprsn
    jnprsn Member Posts: 151
    edited February 2016

    I will definitely join you on the other board. Thanks so much.

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  • 7of9
    7of9 Member Posts: 833
    edited February 2016

    I just read a few days ago about a local woman who is going on 10 + years with mets (after 8 years prior from orig diagnosis). She has been monkeying around with this crap for over 18 years and doing well although they had to adjust her meds as her heart was showing some signs of chemo damage - but not enough to stop latest chemo even though she is NED!

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  • jnprsn
    jnprsn Member Posts: 151
    edited February 2016

    Thank you. That is encouraging!

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited February 2016

    jn,

    Just wanted to tell you, sorry. I, also have lobular cancer. We were dx at the same time, similar tx.

    Good luck with your new tx.

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  • bluepearl
    bluepearl Member Posts: 961
    edited February 2016

    Bone mets can be treated like a chronic disease. I know in our group there are 20 year survivors, 15 year survivors. Depends on many things, but if you are going to have mets, this is where you want them (and we don't want them ever). ((((HUGS))))

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  • jnprsn
    jnprsn Member Posts: 151
    edited February 2016

    Thank you both. That is encouraging. I just want enough time to raise my children, 13, 14, and 15. That's all I ask God for. This is the part that makes me so depressed and panicked, alternating. You are so kind.

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  • Katarina
    Katarina Member Posts: 386
    edited March 2016

    So sorry to hear your news. I know lots of ladies living with many recurrences year after year, some on their 4rth dx and they are all going strong. Most of them don't participate on this board because they're just going forward like it's just a bump in the road. I hope you can try to do that too.

    Hugs

    Katarina

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    Hey jnprsn,

    I was just wondering about your treatment plan. I have been recently diagnosed with met to pelvis area too. Did you have your bone biopsy and is it painful?? I'm waiting to get a date for mine. Treatment plan not sorted yet. Radiotherapy was mentioned if we can determine if it's isolated. They are looking at hormone therapy and need to shut down my ovaries. Unfortunately ibrance is not available in UK yet but possibly will be at end of year. Have heard great things about it. How are you getting on?

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  • jnprsn
    jnprsn Member Posts: 151
    edited March 2016

    Lillymillie,

    I'm getting Lupron and Xgeva shots and taking Letrazole and Ibrance. No radiation since I'm not having difficulty with my hips flexing.

    Bone biopsy was a lot less painful than I thought it would be. Didn't require any pain killers.

    Lupron shots are causing a lot of hot flashes.

    Ibrance is making me tired but not terribly.

    Have you had your biopsy yet?

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    hey jnprsn,

    I'm booked in for bone scan on 6th April. It's the earliest we can get one....grrrrr feels like ages away and am sure it will take a while to get results etc. The waiting is driving me mad but suppose all the information is needed.

    You must make you feel a lot better that you have a treatment plan in place. A work colleague wants me to talk to her friend. She has mets to pelvis too and is doing very well 2 years out. She's in her 40s, very into clean healthy eating and feels in better health now. Sounds very positive which is what i need. I love healthy food and walking, my only vice is a couple of glasses of wine or a few beers at the weekend...I may have to find a healthier past time! If there was ever a time I needed a drink it's now!😩

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  • jnprsn
    jnprsn Member Posts: 151
    edited March 2016

    Lillymillie, I turned 48 today. Your coworker's friend sounds a lot like me. Since the recurrence I've been walking 10 thousand steps each day, been on a mostly ketogenic diet, started the process to take Rick Simpson Oil, take turkey tail mushrooms, and take fractionated pectin among other supplements. I see a nutritionist regularly. Oh yeah, quit drinking too. I missed it at first but now that I'm doing all positive things, I don't want to drink.

    The wait for scans and blood work can be maddening. My heart goes out to you. Keep me posted.

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    Hey jnprsn,

    A very happy birthday to you! Hope you are having a lovely day with your family and celebrating. It's easter Sunday over my side of the pond, lots of excitement as my niece and nephew and son are already gorging on easter eggs and getting excited about an easter egg hunt we are doing later. It's a good day and everyone is happy. I've read through the thread again and some of the ladies are talking about 10, 15, 20 year survivors so I think we just need to aim for that! I too just want to see my boy grow up. I'm going to look into some more at diet and supplements too.

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  • jnprsn
    jnprsn Member Posts: 151
    edited April 2016

    Lillymillie, Was curious how your scan went?

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited April 2016

    Hey jnprsn,

    Had my bone biopsy on the 6th. It wasnt too bad, more uncomfortable and surreal viewing as I saw it all on camera. I had mild sedation and morphine which felt rather good! They said results won't be in for 10 days and then I got a call on Thursday from my breast nurse to say it might take up to a month to get results back!!! I'm meeting my onc later this evening. Not sure if we'll get anything sorter considering no results are in!

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  • dixiebell
    dixiebell Member Posts: 280
    edited May 2016

    My doctor told me 30 months in January 2014. I had a mets to L4-L5 spine. That would be in a month. I went through starting to give stuff away and grieving but then I starting doing research, tried a few things and low and behold, I was NED from Jan 2015 until now. I just learned I have 3 new spots 7th rib, spine (not sure where yet and sacrum) When he called me the results I said well since I out lived my expiration date how long now, he said I am I am not going there again. The statistics on line scare the CRAP out of you. I am sure you googled them too. This site shows how many people are living longer. I met a gal last week on a plane. She told me she is 19 years stage 4 and has had ZERO treatment not even a mastectomy. That blew me away. To me there is only one person who knows that answer on when it is our time!


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