stage 3 survivors

Rainy213
Rainy213 Member Posts: 2

Hey all! Looking for some inspiration from those with stage 3 triple negative. It seems to me that most people who do well with lymph node involvement only have 1-2 involved. I have at least 4..so feeling defeated. Thanks for sharing!

Comments

  • lululani
    lululani Member Posts: 5
    edited November 2016

    Dear Rainy123,

    I am overjoyed to give you hope! I had 8 nodes positive. 5 nodes were visible to the naked eye & 2 of them looked like a "circus peanut," according to my surgeon. I am a 6+ year survivor.

  • Rainy213
    Rainy213 Member Posts: 2
    edited November 2016

    So great to hear...I dont think i would like to hear my nodes referred to as circus peanuts! Lol. Congrats to you.

  • AnnaMO
    AnnaMO Member Posts: 12
    edited December 2016

    Hey Rainy! You know what helped me is a friend who had Stage 4 TN in many of her nodes. It's 16 years later and she's still here. You and I are lucky that there's so much new research on TN and better treatments. I had 6 nodes with residual cancer, along with residual in at the huge friggin' lump I had found in October 2015. After surgery I had 4 more chemo infusions (Carboplatin). Then, into the the easy bake over for rads. My family and I were dancing with NED. Now the onc is suggesting Xeloda. Waiting to the insurance company to approve. You may want to ask your doctor about the Japan Study regarding Xeloda (capecitabine). It's a promising study that has shown risk reduced by 1/3 - 1/2.


    It's empowering to be your own advocate. You'll get through this! And Lulani...thank you for sharing! Awesome!

  • LovesLoons
    LovesLoons Member Posts: 10
    edited December 2016

    Since I've only had this a month ... I'm not going to inspire much as far as survival, but I just posted about the research treatment trial I am in that seems very promising. Heart I think many here have smaller tumors than I have and fewer nodes (no specific count but they only biopsied 1 and many, including intramammary nodes, are BIG). TNBC is scary but I agree that there are a lot of new things coming through phase II/III trials. Hope abounds. Smile I'm stage III B I think... and diagnosed T3 or T4 depending on doctor, N2, M0. No specific stage until after surgery, but the size itself puts me in stage III I believe. :)

  • KSteve
    KSteve Member Posts: 190
    edited December 2016

    Rainy213 - I'm 6+ years out from a large TN tumor and lymph node involvement (see my specifics in my signature line below). I'm doing great! I understand where the fear is coming from. We all go through that. You didn't mention at what point you are within your treatment. Just remember, you are not a statistic. Keep putting one foot in front of the other and you will find yourself where I am before you know it!

    Hugs,

    Kathy

  • jojobird
    jojobird Member Posts: 99
    edited December 2016

    I am so grateful to hear these stories as well. Just started radiation, after surgery and adjuvant chemo. My tumor was 7 cm and I had 21 nodes. My last scan was NED. One step at a time, and praying for a long future ahead.

  • kayrem
    kayrem Member Posts: 25
    edited December 2016

    Hi- thought I would join. I am over 5 years out from diagnosis. The first 2 years were pretty tough as I found out I was BRCA 1 after a year and had a couple of prophy procedures. But it has definitely gotten better! I still get scared but then I get distracted and then I am good. Get through treatment and you will be fine. One big thing this cancer thing has done for me is drilled home that I need to have hope and faith that I will be okay. You will also be okay

  • eruyle
    eruyle Member Posts: 1
    edited January 2017

    I'm not really any inspiration either as I was diagnosed in October and am currently undergoing chemo...but just wanted to say I'm stage 3 also! Thank you all for sharing your stories of inspiration

  • Winters74
    Winters74 Member Posts: 8
    edited February 2017

    just curious for those who are Stage 3c, what treatments have you done? I completed treated last May; 4 rounds of tc. Doctor doesn't think we got it all or I had a recurrence quickly afterwards. Tumor is in chest wall was found accidentally which was 3 auxiliary nodes stuck together, 2 were only found to be positive. There was also a paratracheal lymph node light up but after biopsy this week they found no cancer. I have already started chemo but doctor felt if it was cancerous we wouldn't of found some traces of it. Today, I had my 3rd round of chemo and in 2 weeks, I go for my 4th and will learn what chemo I will do next. I am really trying to educate myself self on successful treatments since the first time around I had no clue.

  • ssinuk
    ssinuk Member Posts: 63
    edited February 2017

    winter socks am not tn but just bumping this for you - hope you get some responses. So orry for what you are going through. I also had nodes found shortly after treatment, know how that feels - but Drs emphasised recurrencecis different from 'persistence of disease' or a 'geographical miss'. There is hope.. x

  • minustwo
    minustwo Member Posts: 13,348
    edited February 2017

    Winters - if you go to My Profile and post your diagnosis & treatment to date it will be easier to understand your questions. For example, are you HER2+?

    I had 6 rounds of TCHP chemo, then surgery, they 4 rounds of AC chemo, the herceptin every 3 weeks for the rest of the 17 treatments. During the herceptin, I also had 5 weeks of rads every day.

  • minustwo
    minustwo Member Posts: 13,348
    edited February 2017

    Sorry, I didn't see the triple negative forum designation.

  • Edna10
    Edna10 Member Posts: 4
    edited April 2017

    Hi Ladies,

    My mother is a TN on RT brest with 3 lymph nodes involved that are obvious we will find out if there is any more once she gets surgery according to her onc/surg. She isdone with her taxol tretment and is about to start with her a/c treatment any advise? Ive read horror things about it. She is still working and I would'nt want her to feel more usless that what she already feels... thanks and best wishes to all...

  • KSteve
    KSteve Member Posts: 190
    edited April 2017

    Edna10 - Hi! I had the same chemo as your mom and was able to continue working throughout. I had chemo every other Thursday, so I would take that Thursday and Friday off. I thought it was very manageable. Although all of us would have wished to be anywhere else! If you haven't already, come to the Calling All TNs thread. Wonderful group of supportive women (and men) there. Fingers crossed that she will do just fine. One day at a time!

    Hugs,

    Kathy

  • WorryWartSuzie
    WorryWartSuzie Member Posts: 8
    edited August 2017

    Know that just reading your post inspired me, as well. I am in radiation therapy after bilateral mastectomy lymph node resection, 4 cycles of AC and 12 of Taxol. I'm not triple negative (ER positive only), but this post made me so happy I almost jumped out of my office chair!

  • Edna10
    Edna10 Member Posts: 4
    edited September 2017

    Hello ladies, just wondering if any of y'all stage 3 TN had xeloda aside from there chemo treatment. I have heard that this medication gives you better surviving rates? Any info? My mom doesn't have an appt with Onco dr till Oct. As of right now she is on her 23rd radiation treatment and doing okay. Hope y'all are doing wonderful

  • Cpacino
    Cpacino Member Posts: 7
    edited September 2017

    when I was newly diagnosed this thread gave me so much hope and I promised if I made it to my 5 year cancerversary. I would revisit and post my survival. I was DX after the birth of our 3rd baby and found the lump while nursing him... of course I assumed the lump was from a clogged milk duct... that assumption got me a TN stage 3 DX... after chemo. DMX. More chemo. Radiation. Genetic testing. Oophorectomy. Reconstruction. Countless scans. I am cancer free! A lot of worries in between...my youngest is now 6. My beautiful daughter is now 8 and my oldest son is turning 16! Life is always full of surprises but the biggest surprise is im here to love and enjoy my husband and children. Forward. Onward. Outward

  • Cpacino
    Cpacino Member Posts: 7
    edited September 2017

    when I was newly diagnosed this thread gave me so much hope and I promised if I made it to my 5 year cancerversary. I would revisit and post my survival. I was DX after the birth of our 3rd baby and found the lump while nursing him... of course I assumed the lump was from a clogged milk duct... that assumption got me a TN stage 3 DX... after chemo. DMX. More chemo. Radiation. Genetic testing. Oophorectomy. Reconstruction. Countless scans. I am cancer free! A lot of worries in between...my youngest is now 6. My beautiful daughter is now 8 and my oldest son is turning 16! Life is always full of surprises but the biggest surprise is im here to love and enjoy my husband and children. Forward. Onward. Outward

  • mkn86
    mkn86 Member Posts: 129
    edited December 2017

    not a lot of responses but i am grateful to have stumbled onto this thread. i am currently mid-way with neo adjuvant chemo. i have a log way to go and sometimes i can’t help but wonder.

    thank you for sharing your stories and i do hope to hear from more of you.

  • KSteve
    KSteve Member Posts: 190
    edited December 2017

    mkn86 - I am over 7 years out, so there are lots of us out there. Just busy living life and not on the boards every day. Life is amazing for me. I'm in the midst of planning my daughter's wedding in September 2018. I can honestly say that cancer is not on my mind nearly as much as it used to be. Instead of waiting for the other shoe to drop, I am living a wonderful life and enjoying every minute of it. You will get there too. Just keep putting one foot in front of the other.

    Happy holidays,

    Kathy

  • KristinWickman
    KristinWickman Member Posts: 1
    edited December 2017

    Hey --

    I need some encouragement. First, some history ....

    • 1998 Stage 1 DCIS found in left breast; Lumpectomy followed by Tamoxifen
    • 2005 Endometrial cancer . . . full hysterectomy
    • 1998 Stage 3C found in right breast (I don't remember the type); Involved 3 lymph nodes; Chemotherapy and radiation
    Well, I've now found a new lump to the left of where the right breast was. It wasn't there in August. It seems kind of hard but it is growing. It's smaller than a golf ball. I have an appointment with a nurse practitioner on Friday (12/29). My previous surgeons from 1998 and 2008 have moved on. My original oncologist is now retired.

    I'm kind of freaking out . . . No, I am freaking out. Are hard lumps common 10 years after a mastectomy?

    Please help me .........


  • Edna10
    Edna10 Member Posts: 4
    edited February 2020

    Hello KSteve, I am so glad that you responded when you did! So far my mom is doing good still here with us we are scheduled for that annual appt/ct scan on the 13 of Feb. I get so anxious every time we have a Dr appt. But I’m trying to stay positive and hope for the best! She has been doing good she still works full time never stopped working. She still has neuropathy going only on her feet and now she finds her self more tired easily since being diagnosed but we are blessed! I would like to here more from you!!! Thank you for your words and HOPE!!!!

  • KSteve
    KSteve Member Posts: 190
    edited February 2020

    Edna10 - Crazy timing - I just signed on and haven't been on for a little bit. Glad to know your mom is doing good. I am now 9-1/2 years out and still doing great. My daughter got married a year and a half ago, and my husband and I are less then 2 years away from retirement (at 56). I was 44 when diagnosed and remember wondering if I would make it to enjoy retirement. Now it's within my grasp. I understand the fear that pops up with every doctor appointment. That gets better eventually, but never really goes away completely in my experience. My best advice is to live every day with as much happiness as you can. Not every day is roses, but most days are completely amazing and I can't wait for tomorrow! Continued best wishes for your mom's health!

    Hugs,

    Kathy

  • Edna10
    Edna10 Member Posts: 4
    edited February 2020

    Well I appreciate the timing because sometimes you can feel like you are in this by yourself. Now, this is coming from a daughter of a survivor. I am glad that you are enjoying life with you loved ones! But I do have a Question for yo? Do you have or had any late side effects from chemo or radiation?

  • KSteve
    KSteve Member Posts: 190
    edited February 2020

    Hi Edna - Other than some neuropathy in my toes, not experiencing any major side effects. And that is something that I have learned to live with. Have gotten used to the "new normal" feelings/numbness that comes along with doing a bilateral mastectomy. So I really wouldn't say that it affect my life in any way. Your mom is only 3 years out and some of that comes with time. My oncologist told me that making it to 3 years out from triple negative bc is the time to pop the champagne! If it is going to come back, it typically does it within the first 3 years, vs 5 years for other bc.

    Hugs,

    Kathy

  • Eauburn1234
    Eauburn1234 Member Posts: 1
    edited February 2020

    celebrated 5 years from dx last July and 5 years from surgery last month.

  • moderators
    moderators Posts: 8,633
    edited February 2020

    Eauburn - Thank you for your post. We are sending you a big warm welcome to the BCO Community discussion boards and wishing you many, many more happy and healthy years!

    The Mods