Real risks of recurring with stage 1A or any early stage HER2+

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danix5
danix5 Member Posts: 755
edited October 2017 in HER2+ (Positive) Breast Cancer

I have seen a few articles that seem to say early stage triple positive or any BC, depending on the article is 30%. My dr says 5% after I finish treatments chemo, radiation, Herceptin and Arimidex. But I just saw a lady post on FB that the early HER2 positives usually come back and stage 4!!! What the heck... already fought this twice and really don't want a third round! image

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  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited September 2017

    Hi danix5, if this woman had treatment back in 2003, things for her2 positive as far as treatment has changed. I just wanted to point that out. We don't know her treatment ( Herceptin wasn't given to early stage her2 back then for one) or who she was referring to in those statistics. The thing with statistics is those change as treatments improve and the numbers represent past groups.

    Secondly, cancer is complex and not always predictable. As long as you respond to therapy, at the end of the day, that is all that matters.

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  • danix5
    danix5 Member Posts: 755
    edited September 2017

    Really?

    Wow

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  • pupmom
    pupmom Member Posts: 5,068
    edited September 2017

    Early Stage is up to IIIA. I agree that treatment for Her+ has dramatically improved since 2003.

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  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2017

    Hi Ladies....when I was diagnosed at 2005..Herceptin was approved for early stage BC

    I was the first patient to receive Herceptin in my local hospital...

    I don't go by percentages I was NED for over 10 years.

    Second one was a new primary in the opposite breast and it was HER-

    I feel the same way as Shell does....

    Good luck to all of us.

    Sheila

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  • sheila888
    sheila888 Member Posts: 25,634
    edited September 2017

    Danix5..I see that you had a BMX the first time.. how did they diagnose you?

    Do you get MRI .....I no longer get any test except tumor markers blood work every 4 months and see my B S once a year...

    I didn't have recon......

    This beast has its own mind.....my tumor markers were completely normal when I was diagnosed second time through my yearly mammogram

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  • danix5
    danix5 Member Posts: 755
    edited September 2017

    thank you all for your responses! Nerve wracking this cancer business.

    Sheila888- I found the lump next to my sternum bone myself. It felt like I hit it and it was swollen and hard like a bruised elbow after you hit it. It hurt so I mentioned it to my daughter a fourth year Med student

    She told me go to drs Mom. So I started with ultra sound they knew right away and had biopsy two days later. They confirmed cancer and I had MRI and PETCT.

    It was only at the sternum thankfully

    But being 9 years out and having been told I had less than 2% chance I would get BC again I was shocked

    My drs did not follow up with me after 5 years at all!

    Dani

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  • KimCee
    KimCee Member Posts: 178
    edited October 2017

    Hi everyone, this is my first post. I have been reading for two months. I was 18 years out from my first bc diagnosis when my mammogram found this ugly one. I am one week post op from bmx. I will see my onc on 10/12/17. I had adriamycin and taxotere 18 years ago. I can't imagine what they can give me now. I am now 54, I was 36 when first diagnosed. This does stink for sure. Like Dani,I am looking for some good news out there. Sending you all hugs.

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  • sheila888
    sheila888 Member Posts: 25,634
    edited October 2017

    Hi Kim....I love the way you described it 'Ugly Thing'

    They gave me 4 rounds of chemo second time around because one of my SN had micro cells.

    This time chemo was very doable almost no side effects except I lost my hair again which wasn't that important.

    I had C T chemo every 2 weeks.

    First time it was AC and Taxol double dose 8 sessions.

    I'm sending you big hugs..

    How is your recovery from BMX is going ?

    Sheila ❤

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  • KimCee
    KimCee Member Posts: 178
    edited October 2017

    Hi Sheila,

    Thank you so much for stating chemo was doable the second time around. First time, I was married and did not have to support myself. This time, single and must work during treatment. I am a home health nurse, so more activity is needed on my end.

    Recovery from bmx is just really uncomfortable. Still have the two drains and draining not much less after 9 days.

    Last time, no port. This time I know I need it and it scares me

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited October 2017

    I will be SIX YEARS out from Triple Positive this week. Huge tumor, one node shy of Stage 3C...had to quit Herceptin after only

    3 months because of heart issues...have been on Arimidex for 5 years and 8 days on my way to 10 or 15 years.

    I am still here and feeling pretty darn good.

    The fears lessen, but are always with you. Truly, I never thought I would be here 6 years later, but I am and grateful every day!

    Besides having an amazing medical team, the thing that helped me the most was this. My breast surgeon told me:

    "We can cure you." after she delivered all the bad news to me. I didn't believe her, but I had those words painted onto

    my dining room wall. It has been a mantra and a prayer every day for 6 years.

    On the dark days of chemo, I would sit at my table and stare at those words.

    I still do...I believe them now!!

    Sending all my best wishes!

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  • sheila888
    sheila888 Member Posts: 25,634
    edited October 2017

    Kim..

    I was also triple positive got herceptin once a week for one year.

    With The new primary diagnosis I didn't get a port because I only got 4 chemo treatments every 2 weeks...The drains are annoying especially when you're trying to sleep.....I had mine 12 days..

    Thank God everything worked out fine.....Wishing you a speedy recovery from everything...

    You can do this.....first find out what type of chemo you're getting.

    I'm on Femara again like the first time because didn't effect me in any way..

    Sheila ❤

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  • sheila888
    sheila888 Member Posts: 25,634
    edited October 2017

    Denise....good wishes to you and all of us that ugly beast stays away...

    We all had our shares and we're still here.

    Sheila❤❤

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  • sheila888
    sheila888 Member Posts: 25,634
    edited October 2017

    Kim there is a very active group called

    TRIPLE POSITIVE GROUP....Your should look into it . ..

    One more thing port was the best thing ever happened to me.....

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  • pollicakes
    pollicakes Member Posts: 28
    edited October 2017

    XOXOXOXOXOX

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  • KimCee
    KimCee Member Posts: 178
    edited October 2017

    Thank you Sheila... I am posting and reading on the triple positive board.

    I just want to let everyone on these boards know that you will make life long friendships here. Back in 1999, my first go round, webmd was the place to be. I am still in touch with many that I became friends with. We have also traveled to different states to see each other. One couple even planned a trip to Williamsburg, VA, we just sent our money portion in, those who chose to go, and we spent 4 days together.

    If you have to have BC, at least we are all in good company. xo

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  • Nana2three
    Nana2three Member Posts: 31
    edited October 2017

    I have been cancer free for 5 yrs. I only took herceptin for 1 year and arimedex for the next 5 years. I have MS and made the choice to not to chemo but herceptin only. Onclogogist and MS Specialist agreed with this plan of treatment. Now I begin to be concerned. Has anyone taken herceptin only and remained cancer free and for how long.

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  • KimCee
    KimCee Member Posts: 178
    edited October 2017

    Hi Nana2three,

    I don't know much about her2+ cancer as I am new to it. However, back when I was diagnosed the first time, Herceptin was not given to early stage breast cancer. My breast buddies back then either did chemo or just AI. Since you are stage 1 and node negative, with a tumor less than 1 cm, back in 1999 most in your shoes did AI only. I do not know what benefit you gained with Herceptin. Just want to ease your mind a bit. Most are still cancer free today :)

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