bone mets

Sara_Louise

bone mets

Sara_Louise

Diagnosed in July of 2008 with DCIS, had masectomy with reconstruction, with no lymph node involvement put on Tamoxifen for 5 yrs.  Diagnosed in July 2010 with bone metastisis, spots on spine, pelvis, ribs and breast bone.  Started Taxol and Herceptin and Zometa, just wondering if anyone else out there has heard of anything similar to this.  The cancer is ER- PR- HER2+  Dr. told me in 2008 that if a person was to have breast cancer, DCIS was the best case scenario and now this happens, just scared and frustrated. 

LuvRVing

Sara_Louise - I am so sorry to hear that you are having a recurrence.  I really wish doctors would stop saying that any form of BC is the "best case scenario" because there is no "best case scenario" especially if you're one of the unlucky ones with a recurrence.  I remember my PCP telling me that my IDC was the most common form of BC and "at least it's not DCIS".  When I die many years from now of something other than BC which never returned, then we will know that it was a best case scenario.

If you haven't already, you might want to check out the Stage IV discussion board.  Lots of wonderful people there who are traveling down similar paths and can offer wonderful support.

Hugs and best wishes to you.

Michelle

LuvRVing

Sara_Louise - I am so sorry to hear that you are having a recurrence.  I really wish doctors would stop saying that any form of BC is the "best case scenario" because there is no "best case scenario" especially if you're one of the unlucky ones with a recurrence.  I remember my PCP telling me that my IDC was the most common form of BC and "at least it's not DCIS".  When I die many years from now of something other than BC which never returned, then we will know that it was a best case scenario.

If you haven't already, you might want to check out the Stage IV discussion board.  Lots of wonderful people there who are traveling down similar paths and can offer wonderful support.

Hugs and best wishes to you.

Michelle

Alpal

What a shock your diagnosis must have been after such a positive prognosis. I was Stage IV (bone mets) at original diagnosis and can't give you any info on your situation, but I do want to let you know how sorry I am that you're joining our club. Please come on over to the Stage IV forum and you'll get lots of encouragement and wonderful advice and information.  P.S. Scared and frustrated is NORMAL!

LRM216

Just goes to sadly show that no matter what the heck you diagnose is at the onset, no matter whether nodes are clean or not, it still boils down to just being a roll of the dice.  I am so sorry you have to go through this especially after thinking you would never see this crap again.  It's all of our greatest fear.  I will NEVER EVER be able to be complacent or trusting about this sneaky disgusting disease.  I hate that any of us had to be diagnosed with this curse. 

Just ranting because it's just so unfair.  I want you to know that I wish you every good outcome with your new journey.  We are all here for you.

sunnyhou

How does DCIS turn into bone mets? Do you think they missed something on your mastectomy? Did you originally recieve chemo on your first diagnosis with DCIS?

I am so sorry this happened to you! I know you are shocked!

Sara_Louise

I went to a specialist in Indianapolis, IN and he told me that they couldn't have gotten it all with the masectomy, and in the two years following, I never had blood work, or any type of scan. No, I didn't have chemo or radiation then just went on Tamoxifen.

ibcmets

Sara,  So sorry this has metastasized to your bones.  I'm one that was diagnosed with bone mets, stage IV from the get go.  I know you're in shock because you never thought you would have a reoccurance.  There are different standards of care for breast cancer.  Stage IV is more closely monitored at least every 6 months because the cancer cells are already in our blood stream.  I will tell you Zometa worked wonders for me at healing my spinal bone mets in 10 months.  I have a zometa infusion every month.  You are Her2+ and will be able to take something to help control this.

You can find more info on the advanced cancer site here. 

Terri

mari55

I too had DCIS ( no nodes), mastectomy and reconstruction and was told "Congrats, that will be the end".  Well, 10 years later I was told that I have bone mets ( Jan 10) and I also had a new DCIS primary on the left found in December 09 ( had mastectomy with immediate reconstruction in April,2010).  I am on Femera and Zometa with regression after 6 months of treatment.  Unfortunately, we are part of the 1% club ( 1 in 100 with DCIS will develop mets).  I never wanted to join, but here I am, so I will fight hard and come here for encouragement and solace.  There is a lot of information on the Stage IV board so visit there too..  Good luck

Mari 

Honeybear

I'm so sorry you're going through this.  I had a 7mm IDC tumor stage I in July 2006 and had bilateral mastectomy with TRAM reconstruction.  My back started hurting about 2 months after surgery and in August 2007, I was diagnosed with stage IV IDC-mets to my bones.  I've been doing the bone mets thing for 3 years now and doing pretty well, but it still boggles my mind how I could have no positive lymph nodes with a tiny little tumor and still end up with mets.  It doesn't make any sense.  I could really drive myself crazy trying to make sense out of any of it, though.  I just put one foot in front of the other, one day at a time.  Hang in there and give yourself time to grieve.  Don't think too much about the logic of it, or lack of logic as the case is.  It doesn't make sense.  Just take it one step at a time.

Hugs and peace! 

Sara_Louise

Thank you for the support of all you wonderful women, it makes me determined to fight this disease and be here for my children in the future.  I am now on Taxol, Herceptin and Zometa and I am getting ready for my 6th treatment......all is going well so far, and I continue to pray that it will stay that way!  Thanks again ladies!

Lowrider54

So sorry you have to go through this...I was 10 years NED and now bone mets dx'd in Sept 09.  Started on Arimidex and Aredia...switched to Faslodex and Aredia after small progression despite resolution and stable in all other areas.  Wish you the best!  Keepin' it in the Bones!

camul

I am sorry too that you are going through this, I was just diagnosed last week with the same in my spine, collar bones, hips, ribs and femurs.  I was a stage 1 ER+/PR+, was told it was a low grade.  Masectomy.  Did 3 chemo's, didnt do more as I was alergic and such a low grade.  Had all the blood work done in April 2010, clean.  PET scan in 2009. 

I dont believe their is a rhyme or reason to this disease, I love all of the different medications and the fact that each of you are able to be here to tell of all the different meds that are working is quite an inspiration. 

sueUK

Hi Sara Louse, I found out today that I have bone mets - my lymph nodes were clear 2 yrs ago and I thought I was done with all this....its a shocker isnt it! I have a CT scan on Thursday to check liver and chest...I pray for no further shocks!

Best wishes and good luck to you, me and all of us with our treatments, and thank goodness for these boards!

Sue x

undecided8

I'm so sorry you're going throught this and cannot even imagine the shock you must feel. I was originally diagnosed with B/C in 2008 but was stage 3 from the get go because I had so many positive lymph nodes. I am also Her2+ and ER/PR negative. My recur was in Feb. of this year, so we started chemo and radiation again immediately. You will most likely be doing Herceptin which is a piece of cake comparted to alot of chemo regimens. Please keep us posted. Where exactly is your bone mets at?? Hang in there hun!!

Suzanne

undecided8

Sorry after re-reading your post I see where your mets are and your chemo regimen. Dang, chemo brain. lol Hang in there, how is the chemo going?

Suzanne

Leah_S

Sara Louise, I just saw this. So sorry you have to go through this after thinking you were going to be fine after DCIS. Mets after that is rare, but it happens, as it did with a very good friend of mine. She's also ER-PR- and HER2+ so I wonder if that is a factor.

Best of luck with your treatments. Sending love to you.

Leah

trubev

I would like to find someone who might remember me from the chat room.  I am one of the orginal

members.  I was dx with bone mets 4 yrs ago. I was not able to complete Herceptin due to heart issues.  My recent c-t scan was clear but Mon. I got a call from my onc. that my tumor markers were going up so he is adding navelbine to my regimen.  I've been on xeloda & tykerb. I only had 4 treatments of zometa initially becuz my onc. was cautious about necrosis.  I will have to get the port re-inserted & tx every 2 wkks but will find out  the 14th about course of tx.  I have been going to my onc. every 6  wks!!!!  My 1st dx was in '93 & 2nd primary in '03.  I have to be candid about the disease & hope to keep it at bay as long as possible.  We need all the encouragement   we can get. Do we have to download Java to get into the chat room?  I probably sound like I'm rambling on but the past few days have been very unsettling.  I look forward to any  & all replies.  Hugs to all - Bev

Anonymous

I'm truly sick of this disease and all it does to women (and men).  We are told if it's found early the better chance we have.  We are told to have our mammos....well, I believe the guildlines for that is changing.  We are told blah blah blah!  Mine wasn't caught early and I had mammos every year.  I found it myself in Dec. 2004.  Started tx in 2005 and progressed to stage IV in '09 to L1 vertabra.  So far I've only been on Aromasin.  I'll go back for scans soon and hope that it's still in only that one spot.  Will probably be doing Zometa after dental issues are cleared.  However, my onc was talking about doing it only twice a year.  Perhaps that's because I'm scared to death of it due to my dental issues.  The funny thing is....she wasn't looking for anything in my bones...I was complaining about my LE arm and she wanted to check it out since I had positive nodes.  Boy was she surprised with the bone mets dx....LOL

Good luck with your treatment, Sara_Louise.  I am angry FOR you that you are going through this when you had such a good prognosis with DCIS.  I just don't get it! 

nancyh

Dear Sara Louise,

Sorry you are joining us in Club Mets, but hope you'll find lots of support and information here.  As to your question about going from DCIS to bone mets, I think Mari55 hit it on the head, that a really small percentage of women with DCIS do go on to develop mets.  Those damn statistics don't feel very comforting when you are the rate "one".  I'm so sorry.  Best of luck.

Madon

I have a bone mets. Started to use Femara and  infusion of Zometa.But after first infusion feel very badly for 6 weeks. Stoped to use anything and got better. Continue taking just Femara  every 36 hours.But developed a pain in a hip. Scare to do another infusion of Zometa.

In Femara (Information note that accompany bottle of medication) I read " do not use with biphosphonate". Why i was recommended to take Femara with Zomets (that is biphosphonate)?