bone mets

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jleigh
jleigh Member Posts: 194
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

okay. here i am. first time posting. was diagnosed 3/2006, age 37, DCIS, stage IIB.  Did six rounds chemo, mastectomy, on tamoxifen for a year, and have been on armosin for the past 3 years.  started having headaches and back pain last september. took rounds of mediciaton for sinus infections . . . but no help.  i work out all the time so assumed the back pain was from gym. finally decided it wasn't normal pain and went to oncologist last week. we did MRI of chest and bone scan.  well guess what?  i have three hot spots. one on the right side of my skull - pretty big, one small one on my chest, and one small one on the lower back.  oncologist said that this probably isn't new cancer, its the same stupid cancer from the beginning that never went away.  but i am supposed to have a biopsy on the chest wall to verify what we now have and PET scan this week for organs.  he doesn't think its in the other organs due to no other symptons except the bone pain.  he said i could live for a long time but how do i convice myself of this?  i am a strong person and am the strongest person of my family, friends, and support group.  but dont want to live the rest of my life in pain.  i used to read these forums when i was going through the initial diagnosis but thought i could start living a normal life so haven't looked at them lately. haha - joke is on me.  any suggestions on what in the hell i am supposed to do now?

 (by the way, i tend to use humor to hide my feelings so if my words come off as insensitive, i apologize in advance)

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  • Beatis
    Beatis Member Posts: 80
    edited February 2010

    jleigh I'm so sorry to hear this, it's everyone's greatest fear. However, a lady I met in the hospital is now in her 8th year with mets and feeling quite good, maybe that will cheer you up a bit.

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  • Jan244
    Jan244 Member Posts: 96
    edited February 2010
    So sorry to read of your recurrance.  My original diagnosis was in November of 1985; mast and 6 months of chemo followed.  Did my regular mammograms/ check-ups.  Then this Spring 2009, 23-1/2 years after original BC diagnosis, I got my own surprise.  That same BC which had been in hiding all those years, reared its ugly head and I now had bone mets.   I am being treated with daily Arimidex and with a Zometa infusion once every four weeks.  I became very depressed and anxious and didn't wait too long before seeing my PCP who started me on the generic form of both Wellbutrin and Prozac.  I'm not saying I am facing each day the same as if these mets had never occurred, but the meds have made my day-to-day living much easier to deal with and I am no longer consumed with dire thoughts 24 hours a day.
    I know you'll get great advice from others on ths Forum.  Once you know exactly what's going on, you and your ONC will discuss your treatment options and once you start treatment, you do regain some control over your life again. 
    Read over some of the earlier posts especially on the Stage IV Forum and you'll find out many many folks are being treated for what is now often considered a chronic condition, and when I say living, I mean many many years.  Check out the thread "Seventeen years with Stage IV today".
    Joining this group of wonderful caring people, being able to ask questions, to vent your fears and frustrations, to cheer others on, to rejoice in reading of people being stable or having NED - all of these things will prove to be very helpful to you.  I know they are to me.
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  • mari55
    mari55 Member Posts: 693
    edited February 2010

    I was first diagnosed with DCIS in 1999 on the right.  I had a mastectomy with reconstruction, no radiation or chemo.  Last summer I started having leg pain that I thought was due to exercise.  In August I had horrible back spasms and rib pain.  I went to the doctor and they took a  chest xray where they missed  a compression fracture on the film.  An way in December I finally had an MRI that showed metastatic disease- a biopsy confirmed it as metastatic disease from the orignial breast cancer ( it was estrogen positive). A bone scan showed involvement in the right trocantar as well. am currently on Femara and Zometa.  I had to have a rod in my femur and pins to my trochanter ( hip).  It actually relived the pain and made me more mobile.  I have been at this only a month but I see progress every day.   I will need surgery to stabilize the T9 fracture but I am hoping I can wait a while and control discomfort with PT.  To top off my news I have new primary DCIS on the left and will have a mastectomy with bil reconstruction sometime in the next few months.  If you look through the boards you will find that bone only mets is more of a chronic condition. Even if you get other involvement the tumors can shrink and go away .  We all want to see NED on our chart ( no evidence of disease)  There is one women who has lived in Stage IV for 17 years.  I am new to this too but I listen to  my body and as I feel stronger everyday and my pain is managed with less medication I choose to enjoy each day.  At the beginning of January I was using a walker, my pain was severe ( but i was walking on a broken hip).  Now I walk without assistance, pain is controlled with minimal narcotics ( mostly t night) and I am planning to return yo work in the next few weeks. What I read is more positive than negative but it is a long ride for the rest of my life.

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  • dawn16
    dawn16 Member Posts: 281
    edited February 2010

    I know exactly what you are going through.  It seems like you read my thoughts.  I was just dx inDec 09 with a hotspot on my sternum and was switched to ARomasin and Aredia infusions 1 x month.  In the beginning I was devastated and couldn't get past the dx.  Now Im starting to live a somewhat normal life again with my new dx sitting in the back of my mind (all the time).  When I need a little help dealing with it,  I take it.  The women on this board have been a lifeline helping me keep my head above water when I didn't know where to turn.  In the process of all this, I have met people going through the same thing I am, and have made one friend in particular that has some much in common with me, I'm sure we'll be friends for a long time.  So there is someone or something here at all times to help you out.  Just hang on, go with the flow and when in doubt ask questions or just read. 

    All the best.

    dAwn

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  • 3katz
    3katz Member Posts: 1,264
    edited February 2010

    Ditto what the others wrote. Bone only mets is considered a chronic condition. Yeah . . . you may have some changes in your life if pain becomes an issue but you can still live a normal life. And some people do not suffer any pain with bone mets. If and when you start having pain, though - be sure to do something about it. There is nothing wrong with taking pain medication if it helps you feel better so you can still be productive. I've got lesions all over my skeleton - from my skull to my ankle - but I still work full time and do what I want. There are some physical limitations & I'm slowing down a lot but some of that is due to age and laziness Laughing - as you can see I use humor too. Sometimes I'm the only one that thinks it's funny, though.

    Good luck with the PET scan. I hope there is no other evidence of disease and that it's just in the bone. Sucks but completely doable. Stay with us on these boards - it is so very helpful. And please let us know of your results. We will all be thinking of you. Please remember there are so many options now.

    Dawn - funny thing - I'm sure I'll be friends for a long time with someone I met here too!! Wink

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  • cmhartley
    cmhartley Member Posts: 1,091
    edited February 2010

    Hey there Jleigh, so sorry you have to be posting here but I think you will find it a great place for a lot of support.  I was diagnosed with bone mets in October.  I had pain near my shoulder blade and happened to mention it to my onc.  I had a PET scan and they found extensive bone mets.  I did have a lot of pain at first but most likely not only from mets but tumor flare from the tamoxifen.  However, my pain is now more intermittent and mild and I can manage it with Advil and tramadol.  I too went through that initial fear that I would have to live the rest of my life in pain, nauseated, no appetite, etc. but all that resolved and I realized it was just reactions to the initial treatments and SE from the medications I was on.   I am currently on tamoxifen, Lupron injections and Zometa infusions and I seem to be doing well.  I've had several oncologists tell me that I can easily live another 10 or 15 years+.  I hate statistics so I choose to live day by day and try to make the most of it.  Best wishes to you....expect an emotional roller coaster for awhile but you will be fine and I think you will find that you can lead a somewhat "normal" life with treatment.

    Cat

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  • jleigh
    jleigh Member Posts: 194
    edited February 2010

    thank you thank you thank you for all your messages. that has totally made me feel so much better.  the group i am with here in my city is wonderful but im the first one to have a reoccurence like this.  we all started a group for young women about 4 years ago. it figures, i would be the first one!  i will definately stay with you ladies.  thanks!!

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  • KorynH
    KorynH Member Posts: 301
    edited February 2010

    jleigh-

    I notice that about half of these respondants with mets are Her2 +. Are you Her2+? Does anyone know how many of the women who get mets are her2+?

    I am her2+ and had a gr. 3 tumor 16 mos ago.  I had a mastectomy, chemo, and finished Herceptin in Dec. I am awaiting results for my bone scan tomorrow. (Scan was last Friday). My back sensation doesn't "hurt". It goes numb and tingles a lot of the time, sometimes feels like a basball is in there (been ongoing for 2 1/2 months now).  I can only assume my doctor ordered a bone scan because he thought this was, or could be,  possible a bone mets? Any thoughts? The wait is killing me!

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  • moonwolf
    moonwolf Member Posts: 130
    edited February 2010

    Jan224 - I don't wanna scare you, but I read somewhere recently that it is thought that Prozac and another anti-depressant beginning with A... causes cancer!

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  • gemo
    gemo Member Posts: 612
    edited February 2010

    Initially diagnoses in 1996.  May of 2007, found extensive bone mets and a spot in my lung.  I take Armidex daily with monthly injections of Zometa that after 2 years were reduced to every 3  months.  The zometa not only stregthens bone but has been found to treat the bone mets as it provides a less than "comfy" atmosphere for the cancer.  I have chronic pain treated with Darvocet daily as sell as Effexor.  Work a full time job and feel great!  Also used a lot of natural healthy foods to aid treatment. 

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  • konakat
    konakat Member Posts: 6,085
    edited February 2010

    Moonwolf -- I don't wanna scare you but you get the prize for useless and incorrect information. 

    A link between prozac and cancer has been shown to be wrong.  It has been linked to help with chemo resistence for some cancers and can help with hot flashes.  However it can interfere with Tamox uptake.

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  • Jan244
    Jan244 Member Posts: 96
    edited February 2010

    Hey Moonwolf:  One thing my Onc at Dana Farber does is check medications almost every visit and I'm confident he would let me know in no uncertain terms if I shouldn't be using any of the meds I'm currently taking.  But thanks for your concern.

    Hi Konakat:  Thanks for your input which clarifies things re any link between Prozac and cancer.  I'd hate to have to stop taking the medication that has made it so much easier to deal with all this crap!!

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  • cancersuks
    cancersuks Member Posts: 258
    edited February 2010

    Jleigh, I'm sorry your mets are back...the joke has been on quite a few of us.  I was cancer-free for 12 years until Dec. 09 when BC mets showed up on my spine.  I'm not a good one to ask, but I've had pain since my diagnosis, just got it under control with a fentanyl patch before a car crash last weekend destroyed all progress.  The key with bone mets is to contain it; I'm currently taking  femara daily and zometa infusions on a monthly basis. Bone mets for the most part have excellent prognosis for recovery; my advice would be to be careful lifting etc., I was pushing 300 lbs. at the gym with my legs (prior to Dec. diagnosis) not realizing my bones are much older than I am because of my prior chemo/radiation treatments.  I just wish I had taken it easy, I guess I wanted to prove how healthy I was.  Now I drive my trash to the curb and will hire out help as $ permits.

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  • Sara_Louise
    Sara_Louise Member Posts: 20
    edited November 2010

    I too have bone mets to numerous spots, have been doing chemo (taxol, herceptin, and zometa) for three months and I will be having a pet scan and echogram on Monday to see where we are!   Jleigh, so sorry to hear that you are posting with us, and I will definitely keep you in my thoughts and prayers.  This is such a great place to get information and lots of support!  Goodluck and God Bless!

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited November 2010

    Jleigh, I was diagnosed ibc with bone mets 6/09.  Along with chemo; I've been on Zometa infusions monthly.  The Zometa has healed my bone lesions and will help keep your bones strong.  I heard out of all the metastasis you can get; bone mets are the easiest to treat.  Since my mets show as healed lesions, I'll be doing a bilateral mastectomy early next year.

    Terri 

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