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Looking for Her2 Positive survivor stories

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  • Cath78
    Cath78 Member Posts: 9
    edited February 2017
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    Hello strong lovely ladies

    Im 38 1cm tumor in right breast which i found early.

    I had stage 2 her2+ estr+prog+ lumpectony, node was clear surrounding tissue clear.. I have good 80% chance of being all clear with no treatment. Going through all that would give a17% rise.

    I'd love to hear from anyone still ok after no treatment !!

  • specialk
    specialk Member Posts: 9,233
    edited February 2017
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    alice - cancermath (lifemath) does not take Her2 treatment into consideration, but the PREDICT calculator does. I think it is more accurate for those of us have treated Her2+ BC, you can see the delineation in the calculator about how many more are alive after treatment with surgery, chemo, targeted therapy (Herceptin), and hormonal therapy. Just be aware that this is a UK site so you need to enter your tumor size in millimeters rather than centimeters, just multiply by 10. Here is a link:

    http://www.predict.nhs.uk/predict_v2.0.html

  • Cath78
    Cath78 Member Posts: 9
    edited February 2017
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    wow thank you.

    So it says 90-95% ok after 5-10 yrs after surgery with no treatments.

    Multiply by 10?


  • Cath78
    Cath78 Member Posts: 9
    edited February 2017
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    Great thank you. I have been stewing over it but do not want to go down that road if it wasn't tottaly necessary. I know there is still chance something can arise..even a new one so , the treatment will not guarantee me clear for rest of life. I must move forward knowing the decision is made make peace with it and do my best to help the body cells multiply and die as they should. Blessings n love to you strong brave women. X

  • minustwo
    minustwo Member Posts: 13,154
    edited February 2017
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    mitch - thanks so much for posting. Good stories are important.

  • minustwo
    minustwo Member Posts: 13,154
    edited February 2017
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    Mitch - thanks for posting. Positive stories are always helpful. I don't consider myself far enough out yet, but hopefully I'll get there.

  • MsBrompton
    MsBrompton Member Posts: 324
    edited February 2017
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    Yeay Mitch, 12 years NED and a third generation - that's wonderful and inspiring! Thanks for dropping by.

  • bejuce
    bejuce Member Posts: 6
    edited February 2017
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    Just celebrated my 8-year cancerversary!!! To those of you fighting right now, there is always hope. I had 11 lymph nodes positive and a giant tumor. Here I am, living life to the fullest. You can and will do it too!!!

    Love to all of you,

    Bejuce

  • jcfree
    jcfree Member Posts: 30
    edited February 2017
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    That's fantastic bejuce! So happy for you. I just had scans and they are clear which makes it two years of NED now. I hope to get eight year under my belt like you!

  • denise-g
    denise-g Member Posts: 353
    edited February 2017
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    Mitch and Bejuce - thanks so much for posting! I recently reached 5 years and am so happy to see your posts further down the road!

    THANK YOU!!!

  • kimm992
    kimm992 Member Posts: 28
    edited February 2017
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    These posts mean so much...thank you all so much for coming back to give us hope!!

    I am 16 months out from diagnosis and hoping to still be coming back in 10+ years to share hope also!!

  • Irishis023
    Irishis023 Member Posts: 2
    edited March 2017
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    Hello I am new to this forum. I was diagnosed May 2016 with breast cancer and I was HER 2 positive. At first when my surgeon performed the biopsy I was all set for a lumpectomy followed by radiation. A week later she called to tell me I have to see a Oncologist because I have HER2 positive cancer. The whole month of last June was seeing every doctor possible. Oncologist, Radiologist, Cardiologist, Reconstructive surgeon all before my procedure the end of June. I had 6 cycles of chemotherapy Taxotere, Carboplatin, and Herceptin, plus 6 weeks of radiation. Herceptin is continuing until middle of July. My hair fell out 13 days after first treatment, I suffered from bone pain from the Neulasta until I took Claritin before and after treatment for 7 days. Tired, weak and just when I felt better I developed a rash on my arms and neck. Changed over to Taxol and had bone pain so bad I would rather deal with the rash than bone pain. November 8th was my last chemo treatment and 3 weeks later started radiation. I developed a bad burn on the bottom of my breast which my radiologist prescribed a cream and it went away within a week. Now after all is said and done I am on my way to recovery but I am having feelling very depressed. Does anyone feel the same as I do?

  • denise-g
    denise-g Member Posts: 353
    edited March 2017
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    Feeling depressed is normal after all you have been through.  It gets better but it takes a LONG time.

    There is such an adjustment period - for me it took 3 years to feel better...then at 5 years, I felt a lot better.

    We always hope we will be able to go back to how we were feeling before diagnosis.  Everything changes and

    life is different.  But I promise it does get better!!!


  • Cwhitney
    Cwhitney Member Posts: 42
    edited March 2017
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    Irishis023, you are so not alone feeling this way. I too was diagnosed May 2016. I was 42 years old, feeling healthy and great and then this bombshell from my yearly mammogram. I not only found out that I had breast cancer, was Her2 but also BRCA2 positive so I had to have a hysterectomy right after I finished chemo. Instant menopause! It has been such a rollercoaster ride and I too have those days where I am feeling really, really down and feel like I spend more time with doctors than family and friends. What I found that helps is being involved in a BC support group. They are the only ladies that know what I am going through and understand the hell we go through to be healthy and whole again. Many of them are long time survivors so that always helps us newbies!

  • Irishis023
    Irishis023 Member Posts: 2
    edited March 2017
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    Thank you so much, now I don't feel all alone. I guess I was just hoping when all the treatments were over I would be my same good self again. Maybe not the same person I was, but a stronger healthier person than before.

  • AliceS
    AliceS Member Posts: 74
    edited March 2017
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    THANK YOU, SpecialK for your input. Looked at UKpredict and see what you mean. Mine is -er -pr and so has nothing to do with hormones---no Tamoxifen, etc. Scary predictions, but my doctor says there are things in the pipeline-- more hope out there. He also said that a recurrence is more likely within 3 years and after that the stats are better, which these sites don't reflect and I don't understand that. Any insight on that?? Plan to ask next time I see him.

    Best wishes and hugs to all-- 

  • specialk
    specialk Member Posts: 9,233
    edited March 2017
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    alice - I think the PREDICT site does take recurrence stats into consideration because it does include the differences in survivability with Her2 specific treatment. I think it is built into the model, in the form of asking about tumor size, nodal status, combined with receptor and Her2 info and treatment choices. The survivability result is different with different treatment choices and tumor parameters so recurrence rates with/without treatment have to be factored already. For you, being hormone receptor negative also includes an earlier risk of recurrence factor, but when you get past the first five years your risk for both a Her2 or non-hormonally driven recurrence would decline more than someone who is hormone positive. Has your MO run something like Adjuvent online for you - where the specifics of your case can be entered? Might be worth a conversation with your doc if it would help illuminate, and ease any worry. The first several years post-treatment are scary, I was fortunate to enroll in a clinical trial - an anti-Her2 vaccine trial with a very good track record at preventing recurrence, as well as being able to use anti-hormonal meds. You probably feel as though you are flying without a net with your fingers crossed, but it gets easier the further out from diagnosis you get. Wishing you the best!

  • Heathet
    Heathet Member Posts: 117
    edited March 2017
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    special k - what was the vaccine called? Do you know if they still offer it in clinical trials?

  • AliceS
    AliceS Member Posts: 74
    edited March 2017
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    So good to get your input, SpecialK and MANY thanks for responding--you have a lot of good information. You seem to be very knowledgeable---I'm obsessed some days looking online for answers, have lots of questions. Yes, my doctor gave me a print-out from Adjuvant! online 2 years ago--then recently told me that Adjuvant! has been purchased by another company. Predict.nhs.uk  also says they've contributed to the annual San Antonio Breast Cancer Symposium--which is impressive. The Adjuvant! print-out I have is much LESS optimistic than PREDICT, which makes me feel a little better--but why would that be?? Version 1.2 is different than Version 2.0. It does say that the results for women under 40 is more accurate in 2.0.

    Would love to know more about the vaccine.

    Am grateful for this site--and best wishes to all.

    Thanks again, Special K, and any information you have--I'm hungry for it!

                                                                                                     Stephanie (taken, so I used my middle name: Alice)

  • specialk
    specialk Member Posts: 9,233
    edited March 2017
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    heathet - the vaccine trial is linked below. This was a joint trial with the GP2 vaccine and the AE37 vaccine - both anti-Her2+ vaccines for recurrence prevention. Patients were sorted into each arm of the trial based on their histological tissue type - totally independent criteria from breast cancer, this is like organ transplant histology. I was sorted to the GP2 arm since I am histologically A2+, and it turned out to be the vaccine with the better performance record. This was a Phase II trial, and is no longer recruiting, but due to the less optimal performance of the AE37 vaccine, and some legal issues with the GP2 arm and intellectual property rights for the pharma companies, I am not sure about the possibility of a Phase III trial. I have seen zero about the next phase even though some results have been reported out for Phase II already.

    https://clinicaltrials.gov/show/NCT00524277

    alice - I am not sure what criteria Adjuvent uses versus what PREDICT uses, but I am wondering whether there was any sort of timeline attached to your Adjuvent report? Did it show any info about decreasing risk as time passes?

  • AliceS
    AliceS Member Posts: 74
    edited March 2017
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    Hi SpecialK--Yes, the Adjuvant printout gave a 10 year statistic only, and looking again at Predict, it's about the same for 10.  5 years stats on Predict are much better, so guess I'll just have to wait ask my doctor to explain, because he said the curve for survivability actually starts to get better after 3 years. The only thing I can think of for those online stats to be worse are for death from other causes---?? I do know that for general Stage 3 BC, all types are lumped together and for her2+ -er the numbers are much scarier--as you said---like 15% less survivability. Where do you find the numbers you stated for after 5 years comparing them to er+ ?

    Thanks, SK, and best wishes to you--

  • specialk
    specialk Member Posts: 9,233
    edited March 2017
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    alice - take a look at the chart linked below. Compare the reducing risk over time per molecular subtype. Clearly, individual factors like tumor size and nodal status could affect these percentages, but the study encompassed patients at all grades, stages, etc.

    http://www.medscape.com/viewarticle/859934

    Also, here is an older BCO thread devited to hormone receptor negative, Her2+ recurrence rates - it might have some good info for you.

    https://community.breastcancer.org/forum/80/topics/744314

  • AliceS
    AliceS Member Posts: 74
    edited March 2017
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    Thank you, SpecialK, both links very interesting. Your research is better than mine (and seems I'm always out there looking for hope). Every time I read one your posts I feel better and more optimistic! Cyber hugs to you!!!!!

  • specialk
    specialk Member Posts: 9,233
    edited March 2017
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    alice - excellent! Also, of note, I was node positive, my tumor was almost triple the size of yours, my BCI test done at 5 years indicated I get very little benefit from anti-hormonals, but I am still here 6 years out from diagnosis. I hope that is encouraging to you too!

  • AliceS
    AliceS Member Posts: 74
    edited March 2017
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    SpecialK, you are such a sweetheart to encourage and make me feel better. Thank you. I, do, actually, and am mostly positive. Honestly, I thought all I had to do was eat right (mostly? :),exercise and I'd live to be 98 like my grandmother. Still shocked that I have (had??) this aggressive BC, (which I found between annual mammograms by the way) but am busy, happy and optimistic. The LE therapist who fitted me for a sleeve is a lovely, beautiful, professional 36 year old gal, afraid to have children because her mother died at 30 when she was 5 months old. I have to say that as much as I want to stay healthy, at least I was able to raise my 2 sons and thankfully they are doing well. CAN YOU IMAGINE having a 5 month precious baby in your arms and know you are dying? OMG..Tragic ....breaks my heart. She apparently had an unhappy childhood and longed for her real mother.

    On a happier note--my neighbor had 23 nodes infected and has not had a reoccurance in 25 years--she beat the odds. Her oncologist is mine, too. He's of course delighted and told me the other day--"If I had bet money 20 years ago---"... good things happen for sure.

    I hope you are doing well, happy and appreciating life every day. My very best to you.

    Stephanie

  • specialk
    specialk Member Posts: 9,233
    edited March 2017
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    alice - yes, think had - not have! Hope that you too have many cancer-free years, like your neighbor - what a great story! So sad that your LE therapist lost her mom at such a young age, and that it affected her so greatly. The additional tragedy is that she is afraid to have children of her own because of that experience, cancer is so unfair. I was afraid for my children when I was diagnosed as well - they were 21 and 22 at the time and I knew they still needed me. I lost my brother when he was 55 to a rare cancer two years before I was diagnosed with breast cancer, and his kids were all in their 20's - I saw how hard it was for them. That experience was motivating in terms of wanting to do pretty much anything to stay alive, and allowed me to undertake treatment with a willing heart. I view life through a different prism than I did before, and while I was already appreciative and happy, I sweat the small stuff way less now!

  • mistyeyes
    mistyeyes Member Posts: 573
    edited March 2017
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    Thank-you for sharing your stories - I have one more chemo treatment and Herceptin through December.  I have been positive right up until now.  I don't know why I am suddenly afraid and can not sleep. 

  • specialk
    specialk Member Posts: 9,233
    edited March 2017
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    misty eyes - during the course of treatment, particularly at the end of phases, people experience fear. It is natural as it can make one feel less proactive, less safe, and not doing enough to keep the cancer at bay. Almost everyone experiences this, and it takes a while to move beyond that feeling. Hang in there!

  • mistyeyes
    mistyeyes Member Posts: 573
    edited March 2017
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    Thank-you SpecialK.


  • AliceS
    AliceS Member Posts: 74
    edited March 2017
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    SpecialK, your are right----Have always tried to be grateful and appreciate today, and definitely don't sweat the small stuff anymore! Tragic that your brother died at 55---so sad, with so much life yet to live and to leave his children and family who still needed him. Life is just not fair sometimes.

    Mistyeyes---I have never suffered from depression, but was terribly depressed for a couple of months after my Dx  Oct. 2014. Just could NOT believe this was happening after thinking I was so healthy. My family was coming for Christmas--  had to get busy whether I wanted to or not--put up the tree, decorate, wrap presents, lights up outside, lots of baking, etc. etc. (my husband died several years ago of melanoma, but I do have a nice boyfriend I see several times a week that helps), and I was so busy/excited planning the holidays, inviting friends in when my family planned to come, etc. that it actually brought me out of my black cloud. Have been better ever since. However, every once in awhile I wake up during the night in a panic--and I do think of it every day. Feel so good, though, have a full life--(retired from teaching elem. school). Must admit, I had to get over that hump. I'm sort of obsessed with looking online for new treatments out there and positive stories. My Oncologist says there are things in the pipeline--- more hope out there. Have patience with yourself--it truly does get better and the future looks brighter than ever for cures/remissions for years.

    Love and hugs to you both and to our BC sisters out there-- this site has helped tremendously--keep coming back!