Any 3c survivor stories out there?

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Godsgirl
Godsgirl Member Posts: 23
edited June 2014 in Triple-Negative Breast Cancer

I haven't heard of any diagnosed 3c survivors from the trip. neg. group yet. I've been told there are flukes who never metastasize from that point. I myself am a 3yr 7mth survivor. I have lots of hope but at times feel all alone. Let me hear from all of you other flukes.

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited May 2009

    Hi there.  I am so happy to here you are doing so well.  Can I ask what kind of treatment did you have?

    Teresa

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited May 2009

    Hi Godsgirl - I live in North Hollywood - do you ever go to We Spark in Sherman Oaks?

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  • Godsgirl
    Godsgirl Member Posts: 23
    edited June 2009

    Hi Teresa,

    First I had surgery with full mastectomy and all 3 regions of lymph nodes taken except for the ones they could not get to, which were under my collar bone. Then I had protocol chemo, which by the way research has evidence saying it works best for us trip negs than the other types of BC. Four treatments of Cy/Adriamycin which were administered every other week over the course of two months. Then another four treatments every other week for two months of Taxol. I was to have 40 rads but my body fried so it was only 38. Twenty seven hard ones at my collarbone. No more treatment after that.I hope this helps you.Smile

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  • Godsgirl
    Godsgirl Member Posts: 23
    edited June 2009

    Hi HollyHopes,

    No, I'm sorry to say I've never heard of it. If you have the time can you enlighten me please.Smile

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited June 2009

    You know, it seems everyone did radiation but me...I really am starting to get very concerned about it too.

    Teresa

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  • Godsgirl
    Godsgirl Member Posts: 23
    edited June 2009

    Teresa,what kind of treatment did you have? Any reason that your Drs or you yourself felt you didn't need radiation?

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  • VickiG
    VickiG Member Posts: 536
    edited June 2009

    Teresa I see you had 3 positive nodes ~ there is debate among radiation oncologists about how many nodes are required for rads... definitely for 4+, but they still debate the value of rads for 1-3 nodes.  Since you had fewer than 4 that is pbly why it was not recommended in your case?

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited June 2009

    Yes, Vicki thats why they didn't want to do it.  My onc felt that hitting it hard with chemo would be way more effective that radiation and the rad oncologist agreed.  I on the other hand would pretty much of done anything! 

    Godsgirl, I had 4 DD A/C with Avatin, then 12 weekly taxols with Avastin every third week, then went on to do 10 more avastins every 3 weeks alone.  It was a long year.

    Teresa

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  • tibet
    tibet Member Posts: 545
    edited June 2009

    I had 1mm micromets in first sentinal node and they did not recommend me to do rads but I insisted and they gave me. There is probably not much benefits to do rads in my case but I feel it is safer to hit it hard. I had DD EC and weekly toxol and carboplantin.

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited June 2009

    The one good thing about TriNeg diagnosis, is that if you get to 2 to 3 years post treatment, you are probably home free.

    TriNegs are more aggressive, but when the 3rd year comes around our recurrence/metastasis rate just drops like a stone, unlike other types of BC, which just gradually decline.

    You sound great to me, You should be just fine.

    I am going on 11 years and fine.  You will be too.

    Gentle hugs, Shirlann

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  • tibet
    tibet Member Posts: 545
    edited June 2009

    shirlann

    Thanks for your post. I read your is medullary so that usually have better prognosis than non medullary. I really like to also hear long survive stories of non medullary IDC TN IDC. Do you know many ?

    Alex

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  • Nickig
    Nickig Member Posts: 357
    edited June 2009

    Godsgirl- I would be so proud to b a IIIC survivor of 3+ yrs. What an inspiration not a fluke! Sounds like you got the right tx. But I do know and can totally understand the need to see others and hear their stories that you can relate to.  I'm not a 3c long term-but but I'm finally starting to feel pretty good about my prognosis. September will be 5yrs NED. I was dx w/ IDC 1.5cm, 1+/39nodes, stg 2, gr 3, TriNeg, BRCA1+, at the age of 36. I had a bilateral mastectomy, 4AC + 4Taxotere. No rads as it was not recommended for me either due to mastectomy and only 1micromet in my LN. I am finally starting to let go of the fear of recurrence or new primary (BRCA) and once September comes around I am hoping to fully exhale! Shirlann, you were on here when I was going thru' chemo in 04 and I can't wait to say I'm 11 yrs NED. Its starting to feel good saying 5. 

    Nicki

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  • Heidi_Ho
    Heidi_Ho Member Posts: 212
    edited June 2009

    I'm way at the beginning 3 months since dx.  Your success stories are very inspiring.  Thank you for sharing.  Vicki G you and I are both stage 4 and you are coming up on you 2yr.  That I find really comforting.  It is a scary ride.  Best,  Heidi

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  • Rainenz
    Rainenz Member Posts: 93
    edited June 2009

    Not sure What stage my 1st triple neg BC(left side) was but am 12+ years out from that dx and have just got to 3 years for my stage 3c triple neg dx (right side).  I have just found out that I am BRCA1+ so now looking into having ovaries etc removed plus proph left mast (I only had lumpectomy on that side) and bilat reconstruction.

    Am really happy to get to 3 years as this last dx was extemely high risk.

    You can see the rest of my stats in my signature below. Long may NED be my friend.

    Raine 

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  • Godsgirl
    Godsgirl Member Posts: 23
    edited December 2009

    Nicki,

    I just made my 4yr. last Oct and I cant wait to make five! Thank you for your inspiration!

    Raine Thank you for your story as well!  I am real happy that you passed your 3yr. and pray that you have a long great life ahead of you!

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  • StefS
    StefS Member Posts: 157
    edited December 2009

    I'm a Stage 3c TN. Diagnosed in August 2003! I'm not on these boards as often as when I was going through treatment. I'm still NED and looking forward to many, many more. So consider me one of the flukes.

    Godsgirl, congrats on hitting the 4 year mark! 

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  • Godsgirl
    Godsgirl Member Posts: 23
    edited October 2010

    My 5 yr is later this month. If anyone reads this please pray for me. Last PET ct revieled some inflamation around my heart...Hopefully everything looks real good this time. Thank you

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  • Cydz
    Cydz Member Posts: 157
    edited October 2010

    Godsgirl! You are an inspiration! I will keep you in my thoughts and prayers!!

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  • Godsgirl
    Godsgirl Member Posts: 23
    edited October 2010

    Thank you Cydz!

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  • BrandyB
    BrandyB Member Posts: 195
    edited October 2010

    I was told and saw the data myself that the 2-2.5 year mark is when the TNBC would recurr.  That's leads me to believe that if you've made it longer than 3 years, you're cured.  I'm no doctor, but after 2 years, I'm celebrating for good.

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  • Meggy
    Meggy Member Posts: 530
    edited October 2010

    This thread rocks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  So good to hear of so many node possitive sisters making it so far.   Wow.....this is fantastic!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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  • pas
    pas Member Posts: 55
    edited October 2010

    I am a 5 1/2 year TN survivor!  2.1 centimeter, node negative, grade 3, had 4 cycles of A/C then 4 of taxotere and xeloda.  Keep on keeping on!  

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  • alexanjb
    alexanjb Member Posts: 304
    edited October 2010

    I am only an 8 month survivor, but thank you for the post because it is very heartening.  I try not to feel like I have a giant ax over my head at all times, but it is hard not to.  

    What lifestyle tips do you survivors have?  Did you make diet changes?  I've heard to give up red meat & sugar, take D-3 supplement and low dose aspirin.  And exercise...Unfortuneately, I am an emotional eater and so tired....but I hope to make positive changes especially if my life depends on it.

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  • pas
    pas Member Posts: 55
    edited October 2010

    I don't go over-the-top with the diet thing.  Just try to think healthy like all of us are supposed to do anyway, with or without cancer.  I think the biggest things I've heard is to lean towards a low fat diet and limit alcohol.  But both of those things are preventative for other diseases as well.  My doctor does check my vitamin d level and right now it is low, so I take 2,000 units a day and once it is normal, I'll go back to 1,000 units per day.  

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  • Godsgirl
    Godsgirl Member Posts: 23
    edited October 2010

    Hi fellow Warriors!  Thank you for all the prayers & good thoughts!!

    I had my PET/CT scan done last week and it is without evidence of tumor recurrence in the breast or evidence of metastatic disease!!!!! Will be 5yrs this Halloween. Scarring was found in my lungs, right worse then left & in chest wall. Not a surprise since I've had a bronchial type cough since radiation had ended & chest pain since Sept. 09. I was told that any cancers from the chemo treatment should of showed up by now & heart probs start around 10-15 yrs after, if they come at all. They will never be able to tell me that my cancer won't come back because there's like a 5% chance in the next 5yrs or something like that, I don't care. Anyone can get cancer in a few yrs & without treatment I would definitely not be here...All I've got to say is that this fluke, freak, speck in a million is alive and doing well! Thank you God for letting me be a miracle, since I was told in the beginning that I would be dying. I had told the Dr's, at that time that only God knew when it was my time, & it looks like I knew the truth!!!!! 

    As for my diet I've tried to slow down on sugar, lessen my fat, eat more fruits & veggies, especially berries & greens. Lots of calcium, organic milk, free of everything eggs, I'm not a big meat eater, but have tried to eat some fish, drink more water, limit alcohol, take a multivitamin, exercise 2-3 times a week(nothing to strenuous), stay away from smoke, even fire pits or barbeque's...above all I pray & try to leave it in God's hands. <3  </p>

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  • Meggy
    Meggy Member Posts: 530
    edited January 2011

    Godsgirl, 5 years is so wonderful!!!!!

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited January 2011

    Congrats on 5 years!!!! I'm a 3b, ibc, triple neg.  Monday, I will be 3 years out!

    God Bless! NJ

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  • alexanjb
    alexanjb Member Posts: 304
    edited May 2011

    Hi, I am TNBC  3c and I am a little over a year out.  Treatment is behind me, reconstruction is coming up soon and I feel like I am putting it behind me (most of the time).  I haven't had lymphedema, my hair has grown back better than it EVER was.  I mostly feel like me again.

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  • Suze35
    Suze35 Member Posts: 1,045
    edited May 2011

    Alex - thank you for bumping this, and I am so happy to hear your story. I read this thread often, it gives me hope...that maybe one day I'll be posting here too! I wish you continued good health!

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  • alexanjb
    alexanjb Member Posts: 304
    edited May 2011

    Thanks for the good wishes Suze35.  Are you done with treatment?

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