• Has anyone survived stage 4 Inflammatory Breast Cancer after it went into the bones?

    Asked by Topazcat on Tuesday, June 4, 2013

    Has anyone survived stage 4 Inflammatory Breast Cancer after it went into the bones?

    I was diagnosed with IBC stage IIIB November 2010. Received 16 weeks of chemo, double mastectomy, 22 lymph nodes removed from under left arm, and 30 radiation treatments. was cancer free for almost 2 years. Friday I found out cancer is back and is in my spine and pelvic bones. I am now stage 4 metastatic cancer. Will have more tests to see if it is any place else. I am scared and feel like this is a recurring nightmare. Has anyone survived once the cancer is in the spine?

    12 Answers from the Community

    12 answers
    • Lindy's Avatar

      First a firm long cyber hug, survive? Each day we answer that when we wake to another day of challenge and surprises. I know what you mean, I try to explain to non cancer folks that I really would rather die from something other than cancer...if I keep it up I just might :-) I am a high grade her2 gal, spend my current NED moments waiting for my recurrence, everyone has an opinion on how I could handle this better, none of them have cancer much less a particularly naughty one. I am sure you will get some good responses, also, Inspire is a site for advanced breast cancer, I find these folks nurturing, blunt, very forthcoming with their experiences. Keep communicating, your cyber support group is gathering.

      almost 4 years ago
    • princess123's Avatar

      I have inflammatory breast cancer which metastized to my liver and spine. I was diagnosed march of 2012. My treatments started right away with no surgery because it had spread so far. My doctor predicted 5 years or better. since I'm 59 that's not so bad. I also met a lady who had been fighting it for 14 years. that's a long time to fight but she's still here.

      almost 4 years ago
    • MillieS's Avatar
      MillieS (Best Answer!)

      I have stage IV and it is in my spine pelvis, ribs, and liver. I was diagnosed a year ago. I have had 6 rounds of ATC. No radiation since it had already metastized . I am feeling great . The only problem I am having is with the Arimidex . It has already become toxic and we are working on adjusting the dosage. Please do not be scared! Easy to say, yes. Hard to do. Do you feel good physically? If yes concentrate on that. Try to get up in the morning giving thanks for all the things you are greatful for. This will get your mind set in the right direction for the day. I had a friend tell me once, give thanks for at least 10 things everyday, even if you only give thanks for your 10 fingers or toes. It reminds you to be greatful for what you DO have. This has served me many years and through some dark times.
      Cancer is very scarey but DO NOT let it dominate you. Treat it like a chronic disease not a death sentence. Love and hugs. We are here for you. Keep in close touch with your cyber family. We are here and we love you!

      almost 4 years ago
    • Gabba's Avatar

      I am so sorry you have to deal with this...you are receiving wonderful advice here and I want to add my support and positive thoughts...you are not alone in your feelings but TRY to live in the moment, my favorite saying is " yesterday is history, tomorrow is a mystery, that's why they call today the present." Take it one day at a time and I pray you have many, many days ahead. God bless!

      almost 4 years ago
    • carter4's Avatar

      Hey - stage 4 too - spine, ribs hips all over - no surgery or chemo - hormone therapy with Afinitor - it cleared my skin mets - Afinitor has been approved for advanced breast cancer - it has kept the cancer "at bay". AT first they told me 5 years or so and now they say they can't tell because I am soing so well. i WANT THE SAME FOR YOU. STAY POSITIVE. I also change my diet a month ago and it has helped (no carbs). I swear I feel better. My friends breast cancer came back and her husband is a doctor and he told her no more carbs. Hang in there. you have friends here.

      almost 4 years ago
    • Risa's Avatar

      Hi Topazcat,

      So sorry to hear your news! I had a friend whose Her2 (not IBC) Breast cancer spread to her lungs and she survived 17 years. I have IBC stage IIIB and I am getting ready to go in for a pet scan as I am having a recurrence to what is left of the breast tissue on the opposite breast. For some reason I keep thinking that mine will go to the lungs... I had a friend who had breast cancer, not IBC spread to her spine and bones and she survived about 5 years but actually died from some heart issues more or less related to all of the treatment that she had received. She felt great and looked like she was going to survive indefinitely until the heart issues. I also have a brother who was given 1 year to live from IIIB lung cancer and he is fine 15 years later... So, I pray that somehow you will be able to live and dream like there is nothing looming ahead :) We are here for you!!!

      almost 4 years ago
    • Pdale's Avatar

      What age are you? Do you believe in miracles? Stage 4 metastatic is pretty bad but I for one do believe in miracles and if I were you ,I would head to San Antonio's CTRC or Houston's M.D. Anderson and get into a clinical trial as quickly as possible. I don't know where u live but there are other cancer research centers in our country that are probably just as good. Stay positive and fight the good fight.

      almost 4 years ago
    • KimG's Avatar

      I don't know of anyone with cancer in the spine. I'm sure someone on the site is right there with you. We all are right there with you - in our thoughts and prayers. This site is so supportive and you can make many friends. I have seen people come back from stage IV so there is hope. I was and still am a certified pharmacy tech and have seen quite a few miracles. I will pray for you Topazcat, and it is a recurring nightmare but with the treatments there are these days you can fight, fight, fight! Do it, I know you can, we survivors are the strongest of the strong. Please keep writing and let us all know what is going on and how you are doing. I'm sure there is someone on our site going through the same thing. God will take care of you. We will be thinking of you-kimg

      almost 4 years ago
    • Pepsi's Avatar

      Hey 1st a cyber hug to you, Now I was diagnosed with stage IIIB inflammatory breast cancer in 2012 2 weeks before my wedding! I too have had the cancer spread to my spine, and I also had the very same question. I now get bone infusions monthly so the bones do not become brittle I have found out that there is no cure for metastatic bone disease only treatments so what's a girl to do?

      about 3 years ago
    • Prentiss' Avatar

      I'm IBC Her2nu+++ stage IV w boney mets in my spine. I'm approaching my 8 yr dx with NED! Last year I stopped herceptin and the year before stopped zometa. My Onc and I agreed that too much immunotherapy could open the door to cancer of the immune system. I had 5FECU chemo, with great response, so I had a radical modified mastectomy. Then too much radiation (90 blasts in 30 days). My skin still hasn't healed in some areas. Then I did an autologous stem cell transplant in a two year clinical trial. The world of treatment has advanced so much since my dx. I do believe that less radiation and a more conservative stem cell transplant would have been a wiser option...but I'm really splitting hairs. I'm a walking miracle, and there are lots of us miracles out walking about. I'm not running or riding horses, but I am walking! I'm hoping that you are well. I'm searching for long term survivors too. I'm juicing and eating a plant based diet. My connective tissues in my joints are giving way, so vegetable gardens are now community gardens- but that is a good thing I think. And horse rides are now turning into me teaching the kids animal husbandry. Keep active, not reactive.

      over 1 year ago
    • Chachi's Avatar

      Hey - just letting you know I am a survivor of metastatic IBC -diagnosed at the time I started my first treatment. Mets to one vertebrae (ultimately treated with high dose radiation). My local Drs. took a chance on me and treated me like I had stage III cancer (or oligo-metastatic cancer). With chemo, surgery, and radiation and LOTS of prayer, my cancer is gone! I am bouncing back and in the process of getting my old life back! I take an AI and have petscans every - 3 to 6 months. I am about 6 weeks away from my 2 year anniversary of diagnosis. I hope and pray to stay cancer free - I feel like I am a walking miracle. I hope my story will give hope to anyone else diagnosed with stage IV IBC. I do know of one other person my sister works with that is still alive and kicking 15 years after being diagnosed with stage IV IBC. Her cancer has never come back. And I can't tell you how much hope that gave me knowing that!!

      9 months ago
    • Prentiss' Avatar

      I'm 8.5 yrs from dx stage 4 IBC HER2Nu+++. I am goung into do scans next month. I just completed 40 Hyperbaric Oxygen treatments for post radiation burns. This is an amazing thing to do!! Good reparative oxygen infusions. I finished abouy a month ago and some of my burn ateas are so much better. It stimulated growth of new blood vessels in the damaged areas. It also has made new nerve growth so i now have feeling in my radiated torso/ribs. My sports bra chafes my skin now, so...obviously there continues to be healing 30 days out of HBO. Im wondering if my lymphatic system is healing too. My liver/pancreatic function has improved as well...there should be more insurance/medical coding for HBO. But if you've had radiation, you can at least get 40 dives. Highly reccommend! I'm excited to compare my upcoming scans with my before scans. I will keep you guys in the loop. Off topic- but I just descovered a local artisan baker...so Ive been carbing out recently...guess I'd better get back to a better diet. My 8 year old daughter gave me a giod talking to about improving our diet at home...she was in utero when I went through chemo...I am constantly amazed by the wisdom of my four children...they have been through so much and are emerging into peaceful forward looking shamans...it is nice to finally look forward to life beyond treatment. I think I am ready to move to once a year scans with no fear. Too much time living in fear. Thank you all fir sharing. You all have helped me tremendously. It can be frightening to think that you might be the lone survivor...Im so glad to have company among a tribe of late stage IBC survivors. Thank you! Be well!!

      8 months ago

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