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HER2 positive survival and recurrence statistics

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CuriousCarm
CuriousCarm Member Posts: 18
Help,

I was recently diagnosed in early January and my operation is next week. I have been reading about HER2 ever since I was told I had this. Lots of great successful stories but some websites talk about how bad it is to have this. I would like to know if there is some statistical tables that show the HER2 positive survival rates for each cancer stage as well as recurrence possibility. Does this exist?
Just looking for solid numbers to back up all these amazing stories cause I'm still scared.

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  • Mommato3
    Mommato3 Member Posts: 468
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    http://www.lbbc.org/About-LBBC/LBBC-Newsletter-and...

    Here is a link someone provided on another thread about the advances that have been made in Her2+ BC. I haven't seen any websites that give stats based on the different stages. There are other links that have said that Her2 BC has gone from one of the worst to one of the best due to the invention of several drugs. I remember the early days very well. I was terrified when I was first diagnosed. The wonderful and knowledgeable ladies on the triple positive thread helped me see that most of what I was reading on Dr Google was outdated. There is a lot of good info on this website

  • denise-g
    denise-g Member Posts: 353
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    Hi - so sorry you are dealing with a new breast cancer diagnosis. I write a busy breast cancer blog and have heard from thousands of breast cancer patients.  It is my passion to help others.  My best word of advice is  stay away from statistics involving Her2 positive.  It will eat you alive and scare the heck out of you.  Most of them are old statistics and who knows who even created them!  You will do much better with treatment if you don't pay attention to statistics.  That's all they are.

     I was diagnosed in Oct. 2011 with Stage 3, Er+PR+ Her2+, 9 positive nodes...had chemo - had a heart attack because of chemo and major heart valve damage because of Herceptin and had to stop Herceptin after 3 months.  I was terrified.  My Oncologist sat me down, looked me in the eye, and said, "I don't want you to spend one minute worrying that you didn't have enough Herceptin.  God didn't say you need a year.  I believe you had enough."

    I'm 3 years out and doing well.  I cling to those positive words.  Like the words my breast surgeon said to me after leveling all the bad news, "We can cure you."   I had those words painted on my dining room wall in large letters that can be seen from my entire house!  Those words helped heal me. 

    Oh I get it being so tempted to read those statistics after diagnosis.  We want to know so desperately if we will survive.  But there will always be negative statistics. 

    Sending my best!!

  • lkc
    lkc Member Posts: 182
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    Hi there I am an old timer, with a Stage IIIC,her 2 pos BC diagnosis , almost 10 YEARS ago!! I was one of the first to go on herceptin for non mestastatic BC, and I am absolutely fine despite a stinky path report. Googleing scared the bejesus out of me.

    I would echo what Denise said.... Do not google.There is alot of outdated statistics out there that are not relative currently.

  • CuriousCarm
    CuriousCarm Member Posts: 18
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    Thanks for the replies everyone. I feel slightly better. I am still trying to accept my diagnosis. I had accepted i had cancer, but then i found out i was HER+ and i am trying to fully accept that. Linda - congratulations on 10 years. I am so happy to see your reply. Made my day today. I will come to accept my situation eventually. Just want to know that there is hope and not just stop living and just drown in sorrow. I will make it.

    Linda - are you considered cured? I read somewhere on these boards that erpr- her+ is considered cured at 8 years, very low risk after 4 years, and only recurs within first few years after treatment.
  • suemed8749
    suemed8749 Member Posts: 210
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    Hi CuriousCarm: So sorry you've had to join us here, but this is a great place to be while trying to understand and undergo treatment. You can see I was diagnosed ER-/PR-/Her2+ 7 years ago and still am doing well. I, too, was terrified of the Her2+ diagnosis, and certainly agree that Google is full of outdated, misleading information. Love Mommato's link! So many new drugs and treatment protocols are making the prognosis for Her2+ even brighter. Hang in there.

    Sue

  • chrissie29
    chrissie29 Member Posts: 81
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    CuriousCarm-My BS, MO, and RO told me that the HER medications level the playing field to the statistics that are quoted for HER2-. 

     

    Chrissie

  • CuriousCarm
    CuriousCarm Member Posts: 18
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    Thanks Sue and Chrissie!
    Your posts help so much. I am feeling a bit better everyday as my surgery approaches. I just have to stop thinking back a few weeks ago to when everything was normal. Need to accept this.

    Question for Sue and Linda - you are both several years out from initial treatment. Are those medication free years? Just basically doing your checkups and living life?
  • lkc
    lkc Member Posts: 182
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    Hi Curious. I have to tell you that I actually prayed that I would test positive for Her2. My BC was extremely advanced, ducts, lobes, nipple, 12 nodes pos, lymph and vascular involvement, and abit of a dirty surgical margin that could not be resected.It was a really nasty tumor and very invasive. My Onc was disturbed at me being Her2 positive , but remember that was 20 yrs ago, and there were no stats out there for non Stage IV herceptin results. Since I was er/pr neg and taking antihormonals wasn't an option I felt that having Herceptin would give me a chance. At my last Onc Check up. my Onc told me he felt I was in the clear.! (I do receive Zometa every yr to keep my bones healthy as well as daily glucophage prophylactively.

  • lkc
    lkc Member Posts: 182
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    mistake .. I meant that was 10 years ago

    , not twenty!

  • suemed8749
    suemed8749 Member Posts: 210
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    Hi CuriousCarm: After I finished Herceptin in April of 2008, I had no more bc-related medication. I did do a clinical trial for a year of a drug called Neratinib, but I think I was getting the placebo since the drug seemed to cause intense gastrointestinal side effects that I never got. I had a mammogram last Friday (I had a unilateral mastectomy) which was all clear, and I'm on a once-a-year schedule to see the oncologist.

    Yep - just living life! Since dx, I've seen both my daughters' weddings, my son's h.s. graduation, had two grandchildren, retired from 36 years of teaching - many, many blessings.

  • metoodf
    metoodf Member Posts: 1
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    Hi CuriousCarm:

    I was diagnosed HER2+ 8 years ago at the age of 36. So far, so good :) I remember my onc telling me "I have good news and bad news....the bad news is you are Her2+ and the good news is, you are Her2+." Meaning, Her2 was known to be an aggressive BC...HOWEVER, Herceptin seems to be the miracle drug that changes the playing field completely! I felt so lucky it was available. I know I am a hypocrite for saying this (because I did the same thing), but don't make yourself crazy surfing the internet. I hope you'll find comfort in all the ladies that posted their messages of long-term HER2 survival!


  • CuriousCarm
    CuriousCarm Member Posts: 18
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    Thank you everyone for replying. I really needed the positive stories today. Met with my oncologist and discussed my upcoming treatment and was scared all over again. I am worried of the chemo and the herceptin and their side effects. Can I handle it??? Feels like I am in a dream and this is not real.
    Thanks Linda, Sue, and metoodf - I appreciate all of you taking the time to tell me your success stories. It helps me so much to know that you went through the same thing I am going through now. It will help me when I'm scared. Thanks so much.
  • flaviarose
    flaviarose Member Posts: 249
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    Hello Curious, you probably will be able to handle chemo - most of use have. It isn't pleasant, but it is survivable. Herceptin alone isn't bad at all. The best advice people give for getting through chemo is to stay well hydrated. It can help to flush it though your system faster. Best of luck to you.

  • lalabritt
    lalabritt Member Posts: 1
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    Believe or not this is my first time posting but have been reading since 6/2013 when I received the news of Her2+ER-Pr-.  I was surrounded by my son's, their wives, and my niece with her four girls were visiting at the time.  I would sneak off and try to read about this weird thing and they would all stop me.  Good thing as it all sounded way too scary.

    No chemo was not easy but yet doable, radiation was the hard one on me and I was the 1% that did not get their hair back until done with Herceptin.

    One thing that helped me was I have a friend that told me to watch the movie Living Proof.  Then told me all about Barbara Bradfield as she is a friend of hers and helped her through a different form of BC.  Then I e mailed her and finally talked to her on the phone when my Herceptin was through in 8/1/2014.  She is still alive, you can Google her for encouragement.  One of the few threads I kept up with on here was Topic ER-,PR,Her2+ Roll Call.  It is a positive thread like most here, written by others who have survived Her2+.

    I have some other health issues that have kept me busy, so lately I have finally been able to stop fighting and now I am falling apart.  I had my check up with oncologist the other day and told her it was so hard not to want to read statistics and again was it was the worst thing I could do to myself.

    Once you make your informed decisions do not second guess yourself, stay positive and take care of yourself physically.  As a naturopath oncologist told me well over 10 years this might have been a death sentence but now people are living due to Herceptin.  We are fortunate as we have a treatment that has and is working.

  • Jerseygirl927
    Jerseygirl927 Member Posts: 260
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    hello group, just found you, I had double mastectomy 1-13-15 and diagnosed with lobular carcinoma, stage 1 er+ pr+ her +. My breast surgeon gave me the news ; good news and bad news. I am scared to death, thought I had the death thing all secure until I got this diagnosis, now I am trying to figure the chemo issue, hercepton by infusion is a given, and arimadex after, but chemo has me scared. I have a brand new left shoulder replacement from sept, and know this could be affected by the chemo drugs. Possible infection, with shoulder being infected n removed, Since my lymph nodes and margins were all clear, I thought I was home clear, but this her2+ has me rethinking chemo. Very Nasty drugs, very harmful to liver, heart, kidneys, brain, but at age 64 still young enough to fight this with supposedly minimal side effects? I was going to opt out of chemo, but DR giving a 15% improvement with chemo, saying that is pretty significant. Since I get scared with statistic, probably won't go looking for survival rates, Doesn't sound promising. Any advise? Bear with me having port put in tomorrow, and guess I will have to make a decision soon

  • dutch163
    dutch163 Member Posts: 2
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    I echo your feelings: I was diagnosed recently HER2 +.....March 23

    I will have chemo ,radiation and herceptin...like you: it does not seem real...

    .I wonder too can I handle it?

  • dutch163
    dutch163 Member Posts: 2
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    CuriousCarm

    I echo your feelings: I was diagnosed recently HER2 +.....March 23

    I will have chemo ,radiation and herceptin...like you: it does not seem real...

    .I wonder too can I handle it

  • Jerseygirl927
    Jerseygirl927 Member Posts: 260
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    curious, we will handle this, now that a few months have passed and I have learned as much as I can,(I am a very curious practical, person) ask till you get it clear in your mind, Ask nurses, Drs, other survivors, find a Gilda's if you can. Read these threads, And if I can tell you 2 things, pray for strength and hydrate, hydrate, hydrate. You. Cannot drink too much fluids. I am into vitamin waters, probiotic fluids and coconut milk to soothe my esophagus cause of the caustic effects it has on me..". Cancer drugs are tough, not any clue it would be this tuff, but I feel stronger today, not real strong, but less fatigued with the fluids, and try to eat to keep your strength up. Hugs to all.

  • glowcat
    glowcat Member Posts: 6
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    Hi Jerseygirl,

    I too am a Jerseygirl. Had lumpectomy Sept. 9, 2013, went through chemo (taxol), radiation and Herceptin. Lost all my hair, grew back thicker and curly not used to this because I always had long straight hair.

    Started Femara 6 months ago, not pleasant but was better than the 3 listed above. I was needle shy but quickly got over that as the nurses would get annoyed when I cringed.

    Had my first mamo Sept. 2014 and it was clear - whoopee! I hope they stay that way through the coming years.

    Femara is a pain in the butt but I tried the other 2 and they were worse. The only complaint I have about Femara is that I am again losing my hair again but all three meds do that so stick with the one that gives you the least problems, I guess.

    Pray, drink and stay positive. Good luck to you girl!

  • Jerseygirl927
    Jerseygirl927 Member Posts: 260
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    what is the femera in place of? And it's side effects? What part of jersey? I am southern, near Atlantic city area..

  • Hope555
    Hope555 Member Posts: 2
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    I am so grateful to have found this thread. I too was diagnosed with her 2 positive IDC on February 18th. I had a dbl mx last month and will be starting chemo in a few weeks. I'm very scaredof the her 2 positive status. Reading your stories has been so inspiring for me, thank you! Much love to you all.

  • Keesmom
    Keesmom Member Posts: 23
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    Hi! New to the boards but happy to be here. I was dx IDC stage 3, ER/PR-,HER2+ in 2010. I have had about 6 recurrences, mostly in my clavicle and neck, but earlier this year in my brain. I wish I could have gotten the positive results from the HER2 targeted therapies that so many of you have had. I have been on all of them and have always had the cancer return. So, now I am out of options and have been off THP for a year and finished stereotactic rads to the two spots on my brain in April. I know my cancer has returned because I can feel the same old lymph nodes near my collarbone enlarged once again.

    I am considering doing nothing because I do not want to go back on chemo for a third time only to find it didn't work but left me with damage from side effects. I am dealing with severe pain in my shoulder blade area and in my implant due to the implant rupturing. I go for an MRI on Tuesday, then meet with the plastic surgeon on 12/7. I am praying he can schedule the removal asap because the pain is intolerable! Pain meds aren't working anymore and I now have a burning sensation on the outer area of my armpit. What this is I have no idea. I can't sleep or get in a comfortable position anywhere.

    I was in the hospital last week for shortness of breath and the back pain and kept overnight. The good news is that my heart and blood work were perfect. My chest X-ray and the ct scan of my neck, chest, and abdomen only showed the active node in my collarbone as well as the ruptured implant. At least I am a bit relieved the cancer hasn't spread to my lungs or bones which is what I thought.

    I am so happy so many of you have had long term NED from Herceptin or Perjeta. I wish you all a healthy future!

    Barb

  • lkc
    lkc Member Posts: 182
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    hi Kees mom,

    I am so sorry that you have had such a sucky course. You will most likely feel much better when the ruptured implant is removed (this also happened) to me. I know it's discouraging to think of more treatment especially when you're in pain, Perhaps, when you're feeling better you might consider entering into a clinical trial. There are many Her2 trials going on, and with the meds you have taken you may be a good candidate. I hope your surgery is scheduled soon and you are pain free.

  • MiracleMileM
    MiracleMileM Member Posts: 15
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    Curious Carm, be encouraged by the availability of the herceptin option! 

    I am stage IV diagnosed 8 years ago in 2007: TCH  6 sessions, lumpectomy, IMRT radiation.  PR 20%, ER 85%, grade 3.  No underarm lymph involvement - though lymph node involvement under breastbone.  Mets to breastbone, ribs, cartilage near shoulder.   I have been NED since the fall of 2008.  I am still on arimidex generic,  Herceptin but infuse the every-three-week dosage every 4 weeks( instead of every 3 weeks) when I get my xgeva shot.  My biggest fear has been brain mets since stage IV folks are at a 30-40% risk of that and Herceptin does not pass blood brain barrier.  In the hope of mitigating that risk I take 3.5 to 4 grams a day of curcumin (Dr's best both C-3 and phytosome) with food & black pepper, and before breakfast 1500 mg. of green tea extract plus quercetin.  Both curcumin and green tea pass the blood brain barrier and have some reports of being anti tumor.  For the green tea extract, empty stomach and quercetin reportedly help absorption.   Per my oncologist, I will be on Herceptin as long as it keeps working, and if it stops working, there are now other alternatives.  I feel lucky to be so responsive to Herceptin.  For chemo side effects, look at the reports about Longo's experiments at USC on fasting and semi fasting.  They came out just as I finished my six chemo/Herceptin sessions. 

  • Keesmom
    Keesmom Member Posts: 23
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    Hi Linda,

    Thanks for your encouragement! I get the implant out on the 21st of this month so I am looking forward to being pain free for Christmas. I meet with my new oncology group on 12/15, and I am hoping there is a clinical trial available. I will let you know how things go.

    Barb

  • wellspring
    wellspring Member Posts: 5
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    Hi MiracleMile,

    I'm new at this when compared to you and still have many unanswered questions. How do you know when Herceptin stops working? Any marker in the blood that will indicate this? I'm half through my Herceptin treatment

  • Gbyever
    Gbyever Member Posts: 2
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    Hi lkc, Glad u are doing great. How Long are you on Herceptin and what hormone therapy are you taking. Is it tamoxifen? My MO insisted that I need to starts with tamoxifen as I can only changed to letrozole after menopause over 2 years. I heard some on Herceptin for life. I've completed 6 rounds of TCH and to carry on Herceptin for another 12 rounds, every 3 weekly till early next 2017.

  • HelenWNZ
    HelenWNZ Member Posts: 404
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    Thanks for the great reading ladies - I am TP+++ and am new to this journey with only having had one round of chemo and Herceptin so far. When my surgeon told me I was her2+ he let me know that he considered this a good cancer, for treatment wise as there are so many things that can be thrown at it so to speak. I was totally gutted with the quickness of this cancer and the amount of spread that had occurred in such a short time. But I have the big guns out and top shelf all the way. I had a CT scan that showed no spread, two weeks before surgery and a further 5 weeks before chemo started so I am mopping up but still have in the back of my mind that something must have settled in that time......

    Take care


  • Femcheetah
    Femcheetah Member Posts: 2
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    I'm posting on behalf of my best friend who was recently diagnosed with breast cancer ER/PR-, her2 +3, stage...unclear as of now could be anywhere between a 1 and a 3. She is only 35, very athletic, and is terrified of all the side-effects she has heard about with the her2+ targeted therapy: Taxotere, Herceptin, Perjeta, and Carbopatin. She is considering skipping chemo before her mastectomy (that iswhat was reccomended) and only doing it after surgery. Because of her age and being her2 +, we know her cancer is way more aggressive.

    It would be amazing to hear from survivors who didn't have long term heart problems or "chemo brain" because it will be uplifting for her. Please share some of your stories.

  • moderators
    moderators Posts: 8,286
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    Hi Femcheetah-

    We're so sorry to hear of your friend's diagnosis. We have a section in our community for success stories and stories of survivorship that she might find helpful and uplifting: https://community.breastcancer.org/forum/23/topics....

    We know how scary it can be, but she is not alone.

    The Mods