biopsy says its mets to the bone , i am so scared .

Options
starstuff
starstuff Member Posts: 12
edited August 2017 in Just Diagnosed With a Recurrence or Metastasis

I had stage1 breast cancer 3 years ago its ER+ HER2+ , i wished to go longer without mets .


mastectomy then i received chemotherapy and then was on Herceptin for a whole year . my oncologist kept saying its so unlikely that i will have recurrence he'd roll his eyes when i feel suspicious about something . UNTIL Three months ago .

I had a pet scan for follow up just like that , i just did it , i had no symptoms , no pain , nothing , its like i felt it .
a lytic lesion in the 8th vertebrae appeared , my oncologist was surprised , he said maybe its not cancer but then it was confirmed by biopsy and MRI
Is there anyone here with bone mets ?
Did it start as bone mets only and continued this way or did you have mets in other places afterwards ?
How long has it been since your diagnosis with it ?

how long do i have ? google says its something between 3-5 years

my oncologist says i had patients who lasted more than 10 years but then he kept saying i wont have mets , too .

my uncle had lung ca with bone mets and they were very painful . its was horrible , he died only a year and a half later . and this year and half isnt considered "surviving " as he wished to die , just for the pain to stop

if i was stage 1 and got mets does it mean that my type of cancer is aggressive ?

And is it always painful ? Bone mets i mean ?
After how long symptoms start to appear ?

and doctors are saying i may have surgery in the spine to remove it ? is it wise to do so ?

i am PANICKING and I'm so lost .

please help .


· Share on FacebookShare on Twitter

Comments

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

    Starstuff,

    Welcome to Breastcancer.org. We're so sorry you have to be here, but really glad you found us. You're sure to find our amazing Community an incredible source of information and more importantly, support and inspiration.

    First, stay away from Google! Come to reputable sources, like right here at Breastcancer.org.

    Yes, there are many members here who are managing day to day life with bone mets -- in fact there is a very active and supportive thread in the Stage IV forum's Bone Mets Thread. Please join in there, say hi, and tell everyone your story. You're sure to meet many others who will be happy to share positive stories and suggestions.

    Try to stay calm -- once you have more information about your diagnosis and treatment plan, we're sure you'll start to feel a little more empowered and ready to take this on. There are many members here living with mets of all kinds for many years. There's no reason why you couldn't as well!

    Please come back often, ask questions, get support. We're all here for you!

    --The Mods

    · Share on FacebookShare on Twitter
  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2017

    Hi!

    First of all, ((HUGS)). No one wants to hear that they have mets. Nevertheless, there are many, many women with bone mets on this board who are living active and fulfilling lives. Please visit the Stage IV part of the board, and find the bone mets site. Here is a link:

    https://community.breastcancer.org/forum/8/topics/789492?page=270#idx_8071

    Yes, HER2+ cancer is aggressive; that's why you did chemo and Herceptin for a year. But, there are new treatments, like Perjeta, for HER2+ cancer.

    Again, visit the bone mets thread. Those BC patients can be of great assistance to you. Best wishes.

    · Share on FacebookShare on Twitter
  • pajim
    pajim Member Posts: 2,785
    edited June 2017

    Starstuff, welcome to the club no one wants to join. Yes a lot of women have bone mets only (me!). A lot of them are living with them for a very long time. Mine don't hurt at all. Others do have pain. I suspect it has to do with where the mets are and whether they are pressing on nerves somewhere.

    There are a lot of new drugs for HER+ women so stay away from Dr. Google. I have a friend with HER+ brain mets and she's still with us after three years.

    To answer a couple of other of your questions, there's no reason to have spinal surgery unless you are about to break something. Sometimes they'll do radiation, or if one of your vertebrae is unstable they can put in glue. And yes often people start with bone mets and they eventually move to organs. That can take a loooong time.

    Take a deep breath. Accept two hugs from me. Now another deep breath. And another two hugs.

    Join us on the Stage IV forum. There will be a thread for whatever treatment your doc puts you on. And if there are specific questions I can help with, feel free to PM me.

    · Share on FacebookShare on Twitter
  • starstuff
    starstuff Member Posts: 12
    edited June 2017

    thank you , elaine

    · Share on FacebookShare on Twitter
  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited June 2017

    I have bone mets. Some are painful. I have lots of mets, not just one. Some I can't feel at all. But I've lived 5-1/2 wonderful years.

    Some women are living DECADES with only one small bone mets. You may not see many of them here; they are busy living. :-) But several spend time on the Stage IV boards, sharing wisdom.

    Think of this -- your bone mets may hurt but they aren't going to kill you. Cancer kills when it interferes with your bodily functions. It's not in your organs, which is great!

    Please make sure you complete the info in your profile and signature so people can see what treatments you have had. (The text in italics under each post. It can be tricky to figure out how to make things public.)

    I am actually envious of you, because, as others have mentioned, so many new treatments are available for HER2+. There is no better time to have bone mets.

    I know you are scared. We have been there. For the first 6 months, you think you are going to die tomorrow. Once you figure out a treatment plan, your anxieties will be diminished.

    My advice to you is PLEASE don't rush into treatment and PLEASE see a palliative care doctor for pain, even if you aren't in pain now. I made a rush decision on radiation to my spine and suffered. I can't run anymore or swallow easily because spinal radiation caused nerve damage in my throat. Not one doctor told me this could be an outcome. As for pain, managing pain can be more difficult than managing cancer. I am an ambassador for the U.S. Pain Foundation. Please PM me if you need info about controlling pain

    · Share on FacebookShare on Twitter
  • Maire67
    Maire67 Member Posts: 768
    edited June 2017

    just back from brain MRI. Bone mets last month to spine, rib' pelvis , hip. 11 years out. Stage 3b her+ER+ Initially.

    Brain scares me the most. Initially prescribed falsodex but just received insurance notification that I am ok for Xgeva. Why does this info always arrive on a Friday. Lol. Blessed to have made it this far but I guess I'm greedy. I want more time.

    · Share on FacebookShare on Twitter
  • starstuff
    starstuff Member Posts: 12
    edited June 2017
    Tarheel

    my dear ,

    it wasnt painful previously but now its starting to be . its not continuous but i cant move very easily it hurts when moving or walking .

    I started Radio , Doctor said we should ! and to be honest I am just diagosied . its right , but I've been in this for 3 months now , i took several scans and changed my oncologist , I actually left my country and started treatment in another . because in Iraq I couldn't see a good enough medical care to take care of this . the new doctor suggested Radio and I was too tired to argue anymore .

    I filled the informations I wish they are public now .

    Thank you for your comment .


    · Share on FacebookShare on Twitter
  • starstuff
    starstuff Member Posts: 12
    edited June 2017

    Maire , I guess they have treatment for everything , Doctors , they never stop . though I dont have much info about this my self but if you could defeat the disease this far you can do it for the next years too , you are a fighter .

    and I know how you feel , I'm scared too . I think about my kids about my family . but then its God's will and its our duty to fight and even our right to be greedy and want to live " just a little longer "

    my best wishes

    · Share on FacebookShare on Twitter
  • starstuff
    starstuff Member Posts: 12
    edited June 2017

    Here4support , I feel you , same happened here and u seem like my daughter , I've been also diagnosed recently with bone only mets , all was okay until the diagnosis , my daughter is about to graduate from college and her wedding is soon this year , we were happy then our life has come to a standstill as well . but it's okay dear , it's God's will , I think there are things in life that we should deal with , I know your mom is a fighter just like all the ladies here . *Hugs*

    I didnt get a plan , too . I started Radiotherapy , but I dont think they are going to give me any chemo and they refused the surgery option .

    Ladies , anyone knows why I am not to have Chemo ?

    what are treatment options ? they said its going to be hormonal and targeted therapy but mentioned nothing about chemo !

    · Share on FacebookShare on Twitter
  • Thistoshallpass
    Thistoshallpass Member Posts: 22
    edited August 2017

    l

    Quick recap.... quick as I can possibly make it.

    7/2013 Dx routine mammo... always irregular and followed with Mammo and Sono during each test

    8/2013 Wire guided Biopsy left breast

    8/21/2013 BiL Mast

    10/2013 Cancer seen behind nipple / biopsy nothing seen.... Dr Don't worry about it less than 2% chance BUT   2nd opinion... are you stupid? (not really but that is what she was trying to get across) forget about biopsy path doesn't lie... recommend removing left nipple finally after a PET 6/2014 Throat showed up... did biopsy etc... nothing to be concerned with monitor every 3 months with scope and ENT .

    12/2014 Nipple removed and revision to implant ( Dr used product that was NOT FDA approved.... did not know this and "trusted" the Dr. now I will have to live with this HORRIBLE no breast freak show looking chest)

    2015 Suppose to be SURGERY free deal with nipple in 2016

    6/2015 start of CC but I decide it wasn't that bad I will wait until 2016 to still correct these things

    9/2015 left breast so infected it was leaking out of healed incision... emergency REMOVAL on 9/11/15 now we are waiting the 6 months to let it heal and start recon again. Meantime I had pain in sternum area but no one cared enough to check it out.... WHO CARES IT was ONLY DCIS no worries

    12/2015 right breast infected did MRI and Biopsy on stuff on left side... "scar tissue" right one has now "gotta go"... start 6 month clock AGAIN to get recon

    12/2015 following surgery sense of taste affected everything I ate was HORRIBLE including something like a HOT NOW Krispy Kreme donut ...10 wks of this hell and losing 15+ lbs that I couldn't afford to lose

    4/2016 been on a PS search for reasons not going into other than wanted someone I could "trust" the pain in sternum getting more painful everyday we are now at the unbearable stage.... new PS sent me for 2 CT scans.... chest to see they are ok... June is getting closer for reconstruction and a CT on neck/throat to figure out the pain.

    4/15/2016 CT report comes back nothing really

    4/26/16 ONC hummm read report nothing there he could have pulled up the report and read it himself but refers me to an Orthopedic DR

    4/27/16 I find my own Ortho & he looked at actual CT saw something that didn't "look right" called radiologist while I sat there... came back and said you need bone scan and to get a hold of ONC I will call him now with urgency in his tone. I knew then something was up. CT was re-read and revised  They messed up and missed it. Ortho was a Great guy

    4/29/16 Bone scan Moffitt.... hung around to pick up a copy of the Bone scan and took the Ct from 4/15 to a personal friend radiologist. CT alone knew it was bone cancer Bone scan just showed A LOT of places.... the next step they tell me is now you need a PET/CT scan

    5/2/16 ONC called wanted to see me that day. PET was ordered and I found a place to do it on 5/4 late afternoon. Again waiting on copy of CT I knew Thur it is even back in more place than the Bone scan revealed... several more places. yeah time line has a lot of test done within a couple of days with results reported back. Don't leave it to the Dr office to schedule your things.

    5/10/16 saw original Dr for him to see what the less than 2% person looks like,,,, and to hear if he had some thoughts.... other than shock.... cause it is ONLY DCIS... then onto the ONC and hear his thoughts on the Biopsy that is scheduled for Thurs.... Original DR thought about doing the surgery biopsy WED using some of the methods they use in the Bone scan with the dye.. but Now finally we get to the BIOPSY Thurs to see what it is and how to treat..... the ER+ HER2+       hope hormonal therapy will help.

    I am sorry if this next part is going to sound neg,,,, but I just can not believe that if it could go wrong it almost all has done so..... but I KNOW that there is someone out there going through so much worse.so it is not pity... just frustration. I hate this more for those I love than even my self.... I will be ok. but I am all my 84yr old MOM with dementia has and I have the most amazing man that I love beyond words...He supports me, encourages me and gives me the tough love needed and at the same time with the tender love, I hate that he is on this ride still but I am so happy he is here for me. We have the best most simple life and most pure love. I sometimes worry that he is in a situation where he needs to consider his future and happiness ...I don't want to see him suffer .... I don't want him or anyone to watch me suffer so if the quality piece comes into play I will opt out of treatments. But who knows in a couple of months I can be doing the "happily ever after" part to this story.

    God Bless you all.

    The following is from another of my post from 12/2015..... just added it again to this update because I felt I needed to.

    Not sure if my situation helps any one else in any way. I really am in shock that "simple" DCIS has continued on to this journey. I know I have dark days but I hide them the best I can behind the smile that I let others see. I don't want to be that person no one wants to be around when you are always depressed. I steer clear of those type of people so I don't want to be one. Yes it is a depressing but the saying is… you have a choice on your attitude…. Maybe not your situation but your attitude you can control. And I know that all of the things going on are in God's hands. So I have to trust He will take care of it.

    Does that mean I still don't cry? Absolutely NOT, I cry ALOT.

    Do I have days where I am losing my spirit, you Bet I do.

    But I still TRY and control what I can which is my attitude. Not easy, never going to say otherwise. But I have the most amazing friends and family so many people that I LOVE and that I really appreciate.

    To be continued…

    Following is my Continue

    June 1st 2016 1st round of chemo. I time each week= 3 weeks on, 1 of those with chemo added and 1 week off  until Dec 30 2016

    Then I went on Letrole? hormone replacement and the 1st & almost immediate side effect was blood in urine and Dr. ordered a UTI test nothing but small trace so just in case gave me an antibiotic, then side effects continued to the point I had a hard time catching my breathe, called the Dr. they suggest go to the ER. THEN I read the side effect piece about the medicine.  Checked off almost all of them.... did not go to the ER but I did stop taking that medicine. Dr should have caught this as side effect.... 

    I was swelling so bad at my desk all day that I could not wear shoes. Wore the "Sexy" hose was anything but sexy.

    We decided to move up the plan to move out of Fl. We found a beautiful piece of paradise and moved to the country in NC.

    Started treatment at Duke. Of course they are baffled DCIS turned METS. Add to dictionary was brutally painful as I adjusted to it. I now only go every 3 weeks for H&P and 6 weeks I get Zometa added for the bones,

    The hot flashes are tough and the pain meds also add to the hot flashes.

    6/24/17 We got married and took a trip to Europe. It was tough because of the "lucy" out nickname for diarrhea moments and here we are and I need to wear a diaper just in case.....The diarrhea has been so horrible and humiliating. I took lots of Imodium.

    Getting scans aka Staging on 8/30 to see how things are going. Joints are so painful. I wear a top when I shower because I don't want him to see this mess. It seriously is disgusting. A PS at Moffitt gave me an appointment just to tell me that no other PS would even give me an appt. because they will not do reconstruction.  METS in ribs, sternum etc. When I read his report in print when I looked at the patient portal it took on a new reality.... "patient was advised to not have recon because she is in a fight for her life"   Not only the locations of the mets but the opening up when getting an infection is to risky.

    Sorry this is such a long story I add to it as time goes to help as my journal. I look back at prior post I have made and think about the journey this has been..

    Best Wishes to all of you!

    · Share on FacebookShare on Twitter
  • motherofmany
    motherofmany Member Posts: 45
    edited September 2017

    Tar Heel-

    I just received my diagnosis of mets to r femur bone Friday...I have not met with Doctors yet...but thank you for your words...they inspired me to rethink my diagnosis and continue to move on...thanks again for your candor.

    · Share on FacebookShare on Twitter

Categories