Stage IV with mets to bone ER/PR+

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Jen1234
Jen1234 Member Posts: 4
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I was just diagnosed with Stage 4 breast cancer er/pr+ with mets to the bone.  All of my organs look good and I have about 5 lesions on the bone.  My breast tumor was only 1.2 cm and all of my 16 lymph nodes were positive.  I am 37 years old and a mother of 3 beautiful children and am NOT ready to leave this world!!  I am looking for others who may be dealing with the same disease.  I am wondering what treatments you are doing, what's working and what's not, what questions I should be asking and might not be, and I am looking for HOPE!  If you can help me, please respond ASAP!  Thank you so much!

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  • Alpal
    Alpal Member Posts: 1,785
    edited June 2011

    Jen, welcome to the boards, even though I'm sorry you have to be here. I also was diagnosed with multiple bone mets. That was 3 years ago and I'm still here. Please ask your question on the Stage IV forum and you'll get many replies, helpful information, loving support and HOPE.

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  • steelrose
    steelrose Member Posts: 3,798
    edited June 2011

    Hi Jen...

    I know this is a very scary time, but there is definetely hope! I was diagnosed at Stage IV with mets to my spine and sternum, as well as my liver, and I am currently in remission! For my bone pain I had radiation, which helped a lot. And I'm on my second bone strengthener, Xgeva. I started with Zometa. There are many anti-hormonal drugs for ER+, as well as many chemos that can help you too. Don't lose hope... you will find much inspiration here!

    xoxo

    Rose.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited June 2011

    Hi Jen, sorry you need to be here but welcome.  I was fist Dx's in 2003 and then in 2009 with stage IV mets to the bone...the humorus to be exact.  After having a pin inserted into the bone to stabilise it I had 7 rounds of rads and put on Arimidex (I am post menapausal).  After fifteen  months I had a small spot show up on a rib and many SE's so my doc changed me to Femara.  That was last October and I am doing well.  Don't loose hope or give up, this time for you is scary  but soon you will come to terms with this whole thing, get stuck into treatment and begin to live a life changed but still full with possibly many years in your future.

    Love n hugs.  Chrissy

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  • alex56
    alex56 Member Posts: 136
    edited June 2011

    Hi Jen:  I know you're scared to death but try not to despair.  I was stage iv at my diagnosis too, with mets to spine, and 20 out of 25 nodes positive.  They did a mastectomy followed by 38 radiation treatments.  Then I had a hysterectomy to make me post-menopausal.  I take generic arimidex and have a monthly zometa treatment.  Both are working as my scans have been stable for a year and my tumor markers have been under 30 for many months.  My onc says chemo is not necessary as long as I'm responding well to the current treatment.  I feel terrific and look forward to breast reconstruction in September.  I also take effexor to ease anxiety and diminish the hot flashes - it works great for me.  If your mets are just in your bones you may be able to dodge the chemo bullet as many of us have.  It was a rough first year, no doubt about it, but my family and friends keep me going and I'm just living my life.  The stage IV forum is a lifeline so I hope you jump into the topics even if it's only to vent.  It's a fabulous stress buster.  Hang in there and let us know what's ahead for you.

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  • apple
    apple Member Posts: 7,799
    edited June 2011

    Hi Jen..

    do check out the stage 4 forum.. Many of us are doing quite well with all the different ways to treat cancer.  The first weeks of stage 4 are such a bummer... Know that you'll get past it.. at least to where you can live normally.  If the link doesn't work you can access Stage IV from the forum index.  You'll find a lot of friendship. hope and camaraderie there.

    http://community.breastcancer.org/forum/8

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  • 3katz
    3katz Member Posts: 1,264
    edited June 2011

    Hi Jen. I'm so sorry you are at this point. But as the others suggested, please join us in the Mets/Stage IV forum. You will recieve great information there in addition to support, venting and laughs. If it is hope you are looking for - you got it!!!

    There are so many treatment options for you. I have extensive bone mets and am on zometa (for the bone), faslodex (for ER/PR+), herceptin & tykerb (for her2neu+). I was diagnosed with the bone mets in Feb 2008 and have tried a few different hormonal treatments and had chemo only twice. If the bone mets cause pain, radiation is great for relieving that.

    Please stay with us. We are here for you.

    I have to add that I'm very sad that another young mom is joining us. Cancer sucks!!!

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  • beastybabe
    beastybabe Member Posts: 196
    edited June 2011

    Hi Jen

    I was diagnosed with stage 4 breast cancer that had gone to my spine (T8 - between shoulders), (L4 - lower back) and left rib.  I am currently taking Xelodex and Letrazole which seem to be working.  The other thing that my doc is doing is giving me Aredia - its used to help strengthen the bones and to stop you losing calcium.

    I have been stable with no other bones mets for just over a year..and Im doing well...

    It can all be quite daunting at first but you will get your head around it..one thing that helped me was learning about my cancer and talking to other woman on this site and finding out all the different ways it can be treated.

    I know that you are only 37, I was only 38 when I found out and Im coming up to my 42nd birthday in December...

    Just know that we are hear for you to talk to or if you want you can message us

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  • sandogger
    sandogger Member Posts: 68
    edited July 2011

    Hi Alex56,

    I just read your post and you made me feel better.  I was originally dx at Stage IIIC, but on June 24th, that was changed to Stage IV, with mets to my bones.  My doctor said he was thinking about putting me on Arimidex and possibly the Zometa, just as you described.  I thought I was handed a death sentence, but it seems like it is possible to get some treatment to help me make it through this.

    SmileHugs!

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  • cheers247
    cheers247 Member Posts: 270
    edited August 2011

    Hello Jen,

    Thank you for starting this thread.  I found out yesterday... after being declared NED for a year that I have mets to spine and pelvis.  All bone mets.  I see the onc again on Monday to come up with a treatment plan.  I take Tamox now, and I'm hoping I can start Zometa and Herceptin again and not need chemo??? Anyone know if that is how they treat bone mets, or will I need chemo?  I hope you are doing well Jen and others, I will be thinking of you.  xoxo

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  • MustangIA
    MustangIA Member Posts: 177
    edited August 2011

    Hey, Jessica.  Sorry you got this news!  I'm a recent newbie to the Stage IV club - sucks, but I think you will find there are lots of treatment options out there.  I do not have Mets to the bone, but several of the women do and it seems like hormonal treatment for er+ seems to be common in addition to your Herceptin - however, if you still have your ovaries and are not in menopause, they may start you with something else to shut those down.  Check out the stage IV forum - you will see lots of women living with bone mets.  As my mets were found in my ovaries - I started with oral chemo for four rounds (xeloda), but I am having excellent results with my markers, so I am transitioning to Femara. YOu can do this.  There is also quite a presence growing in the Young Women with Breast Cancer forum.  We all are here for you as you navigate these new waters. 

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  • cheers247
    cheers247 Member Posts: 270
    edited August 2011

    Thanks Mustang!!  I have been taking Tamox all along.  I did have a total hysterectomy and salpingo-ooph in 2009 when I had the BMX.  I tried Femara and had too much pain with it.  With Tamox, I only get hot flashes.  I'm just hoping I don't have to go back on chemo so I can keep working.  Thank you for your kind words!  Jessica

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  • Jen1234
    Jen1234 Member Posts: 4
    edited August 2011

    Jessica-

    Since my diagnosis this past spring, I had radiation to the lesions on my spine and my ovaries taken out.  I then started Femara and Zometa bone strengthener.  I also began a clincal trial in early July where I was randomized and actually got the additional drug of Avastin (added to the Femara treatment) every three weeks.  The trial is CALGB 40503 specifically if you want to ask your onc about it.  I was a little worried about the Avastin after seeing it hit the news so much in June but right now I am willing to try anything and I love and trust my oncologist!  He has used Avastin (Bevacizumab) for years with other patients dealing with other cancers and he said it was worth any of the potential but rare risks. 

    Since starting the Avastin treatments, I do have some stomach aches accasionally after eating but there is no rhyme or reason to their occurance so we are not sure if they are being caused by the Avastin.  I started taking a daily probiotic - which we should all probably be doing anyway - and it seems to be helping!  I will get bone and CT scans every 9 weeks on this trial and conitnue the trial as long as the mets are stable or regressing....scans coming up in 2 weeks! 

    So sorry you are back with bone mets.  It's all so "fresh" for me still too.  My whole outlook on life is changing daily and it's all about making memories with my husband and kids, not try to worry about the little things.  I am a strong women who is going back to full-time teaching in just another week as I have dodged the chemo bullet for now.  I am just trying to find my new "normal" with some back pain, hot flashes, and a little fatigue!  I wish you lots of strength and healing!

    Jen

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  • Aerial
    Aerial Member Posts: 194
    edited October 2011

    After a June 8th mastectomy (right breast) I was just diagnosed with bone mets.  I was in a car accident on Friday and they did a CT scan (on my abdomen) to rule out internal injuries.  The scan revealed spots on the bones of my lower spine and (I think, it was the left) hip.  I'll have a full body bone scan tomorrow.

    Of course, I am scared senseless.  Yet, it helps to know I am not alone, that there are treatments and hopefully, possibly many years left to enjoy life.  I have a married, thirty year old daughter and I know I don't want to leave her or, my sweet husband, any time soon.  I'm retiring at the end of this school year (after thirty years). 

    I am so sad to know that young moms are facing something like this.  It shouldn't happen to any of us but, my heart goes out to you younger girls.  My prayers go out to everyone.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2011

    Aerial,

    I fear that your post will be lost, tucked away at the bottom of a dormant thread. Sorry to welcome you to our corner of the world.

    As a ER+ woman, you may find that they choose to start with hormonals. Do come join us in the Stage IV forum. you will find tons of information and support.

    *susan* 

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  • Aerial
    Aerial Member Posts: 194
    edited November 2011

    Thanks, Susan!  I'll post over  at the other thread.  My oncologist plans to start with hormonals, by the way...

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  • Aliceann
    Aliceann Member Posts: 62
    edited December 2011

    3katz, I have been dealing with BC for ten years and now have METS to rib cage.  I am on Herceptin (7-1/2 yrs), plus Zometa and Faslodex.  I am having severe rib pain and nausea after my recent Faslodex treatment.  Have you had any problem like this? 

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  • laurelee
    laurelee Member Posts: 1
    edited September 2012

    Hi Jen,

    I saw your initial posting from June of 2011 and noticed that you live in the town I grew up in--Midland, MI!  I was just there in July visiting family,and your first posting and one I read from 2012 really touched me.  I hope you are still doing well.  

    I just wanted to share that I was initially diagnosed with much the same profile as you--ER/PR+,HER2-, bone only mets, not particularly high grade, 2 or so, which I think is a very significant distinction. My tumor was large, as it was growing under a plane of fiborous tissue that had been there for 30 years! Because of the size of the tumor, I was just given Tamoxifen to start, I think to see how the cancer would react.  Not a lot of hope, to say the least. Very luckily, it started to reverse immediately, which meant that it was an "indolent" cancer.  I did eventually have a mastectomy, but not for 18 months because things stayed in remission and I was working a lot.  I came across research that showed that patients with only small bone mets could benifit from removing the primary tumor.  (One doctor wanted to take both breasts prophylactically, one wanted to "watch the tumor as an indicator of the cancer progression" and one doctor didn't want to do surgery at all because it "wouldn't change your prognosis in the least")! I also asked to have my ovaries removed because I had read that it seemed to improve the odds.  I was still premenopausal when this all started.

    Anyway, I am still fine after a little over three years.  I still have PET/CT scans every 6 months, and I still get nervous about 2 weeks before I see my Angel of an Oncologist, but I feel great and am thankful that my oncologist always stood by my decision to "do" as little as possible and stay out of my immune system's way. No chemo, no radiation, only seven lymph nodes removed (and only three of those showed any cancer--but what does that mean? Not too clear on that whole concept!). I always imagined that I had a boatload of lymph nodes, and that's why I heal fast, and I begged my surgeon to leave as many as his conscience would let him!

    Your kids must be starting school this week--my nieces are attending Midland High (my alma mater) and, I think Central, also my old stomping grounds.  I am so glad deep in my heart that if you had to have breast cancer, that it was this particular variety.  Even though "Stage IV" statistics can look grim, as my oncologist first said to me, "There's stage IV and then there's Stage IV...."  Reading about your concerns for your children hit a nerve--telling my loved ones the shocking news was the hardest part of the whole experience.

    I don't know what the rules are in this forum, but if there is a way for me to meet you when I am in Midland, I would love to go out for a cup of coffee--I cannot even count the amazing women--and a few men!--that I have met since this whole experience started.  That would be June, 2009.  My very best to you and your family!

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  • Jen1234
    Jen1234 Member Posts: 4
    edited September 2012

    Hello Laurelee-

    Thanks so much for the contact!  To hear your story and that you are doing so well gives me lots of hope!  I am on my 3rd med now of Xeloda with Celebrex.  My first two treatment ventures were different hormone therapies and they did not work.  The Xeloda is bringing my tumor markers in my blood work down slwoly so our fingers are crossed!  My onc is sending me to Boston to meet with a Dr there as a proactive (instead of reactive!) visit to see if they agree with my current treatment and to get advice on "what next".  This Dr does additinal research on my tumors they removed looking for genetic mutations (although I took the BRECA test and it was not positive).  I am looking forward to the appointment and hope they can give me some good news!  I feel MUCh better on the current reatment and most people assume the cancer is gone becuase of how I look, feel, and act....but unfortunately it is not and is a daily obstacle/reminder.  I would love to meet you!  Coffee sometime when you are in town would be super! Even letting me know through your nieces would be great through Midland High!  Tell them I'm in Room 242 :-).  Go Chemics!! :-)  Hope to here from you soon!

    Jen

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