Calling all TNs

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  • ucfknights
    ucfknights Member Posts: 102
    edited June 2019

    hope all is well :) i am wondering how long you girls waited after chemo to have your surgery?

    I also wanted to add, who here had a MX and still got radiation? My mom’s BS said she won’t need it if she gets a MX

    Thanks!

  • HockeyChick_CA49
    HockeyChick_CA49 Member Posts: 31
    edited June 2019

    For me, it was 5 weeks between chemo and surgery. I had a mx and radiation. It was recommended since I had 1 positive lymph node.

  • kber
    kber Member Posts: 394
    edited June 2019

    Hi - I had chemo first as well. Surgery was 4 weeks after chemo. I had a BMX. I achieved pCR, but radiation is still recommended. I'll start in mid-July - about 6 weeks post surgery.

    FWIW, I had 4 different doctors recommend radiation therapy in my case. Although I achieved pCR and had a BMX, the consensus was that with TNBC and how aggressively it presented initially, that I would most likely benefit.

  • jrominger
    jrominger Member Posts: 349
    edited June 2019

    We were told we would wait 3 to 4 weeks after chemo to do BMX. My wife has no lymph node involvement as of now so they don't believe there will be a need for radiation. However we had to delay chemo (#3 AC for 11 days due to an infection) so not sure if that will change things. #3 AC is this Monday.

    J

  • MountainMia
    MountainMia Member Posts: 1,307
    edited June 2019

    I had lumpectomy prior to chemo. Chemo was scheduled to start 22 days later. In actuality, my first infusion was 36 days after surgery. With lumpectomy comes radiation, so that will be the last step.

  • notdefined
    notdefined Member Posts: 286
    edited June 2019

    I am doing chemo first, and my surgery is scheduled 6 weeks after. I was told if I have a lumpectomy, I will need Sentinel Node removal and radiation. If I have mastectomy, I will need sentinel node removal and will NOT need radiation. Part of me is thinking I may push for radiation even after mastectomy, because there is a study being done on radiation after mastectomy for TNBC that makes it appear to help. The question is whether insurance will pay for it.

  • kber
    kber Member Posts: 394
    edited June 2019

    Notdefined - according to my medical team at MD Anderson, radiation after a mastectomy for triple negative is often the "standard of care" and therefore covered. They have a multi factor algorithm that considers the hormone status of the cancer (TNBC in our case), size of the tumor, lymph node involvement, whether pCR was achieved after neoadjuvant chemo or not, and the tumor grade. There may be other factors as well. Anyway, if you check three boxes, you are a candidate for radiation. In my case, I was TN, had a tumor of 5+ cm, and lymph node involvement, so I was offered radiation. I only checked three boxes, so I was considered borderline, but I'm going to go through with radiation once I heal from surgery.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited June 2019

    kber so happy for your chemo outcome!!!

  • jrominger
    jrominger Member Posts: 349
    edited June 2019

    Kber, CPR is such an amazing thing. Very happy for you. Your info is very much appreciated as you and my wife's diagnosis is close. Thank you for all your info. We can't wait to be done with chemo, CPR'd and on to the next procedures!

  • ucfknights
    ucfknights Member Posts: 102
    edited June 2019

    what is pcr? And how is that found out?

  • MountainMia
    MountainMia Member Posts: 1,307
    edited June 2019

    ucfknights, pCR is pathological complete response. Here is the definition from cancer.gov

    https://www.cancer.gov/publications/dictionaries/cancer-terms/def/pathologic-complete-response

    And a little different definition: "A pathologic complete response is usually definedas the absence of residual invasive disease in the breast and in the axillary lymph nodes at the completion of the neoadjuvant treatment. ... Thus, patients who achieve a pathologic complete response are at much lower risk for subsequent distant disease recurrence."


    Also here is the list of abbreviations you can find on this site. Look at the bottom on the left margin for the link

    https://community.breastcancer.org/forum/131/topics/773727?page=1#idx_1

  • notdefined
    notdefined Member Posts: 286
    edited June 2019

    Thank you Kber. That is great information. As with everything else, I guess this is more "wait and see".

  • Volleyballmom2008
    Volleyballmom2008 Member Posts: 54
    edited June 2019

    Good morning all. I hop in and out of these pages. I also did chemo first, had lumpectomy with 5 nodes removed. My surgery was 2 weeks after chemo. I did achieve pcr, then did 30 rounds of radiation which I finished on April 15th.

    It will be a year in June 26th that is was diagnosed. I have to say the month of June has gonna to e not my favorite. I find myself going back to last year. I keep getting these fears everytime I have a pain or ache that it's back.

    My first mamo will be July 10th and I am so scared. Trying to live with this everyday and worrYing about reaccurance scares the cap out of me. Anyone else feel like this.

  • ucfknights
    ucfknights Member Posts: 102
    edited June 2019

    i am trying to find TNBC recent survivor stories. If someone can please chime in who’s 5+ years out this TNBC

  • Kayak2
    Kayak2 Member Posts: 8,561
    edited June 2019

    ucfknights - there are MANY of us...we just don't post often....and some check in here maybe only once a year. I have seen many posting after 10, 15, + more years during my years of following this thread.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited June 2019

    The fact is, we do have more to fear in the short run, but after 3-5 years, the recurrence risk drops to nearly zero. (Of course you can always get a new primary.) So, once we make it through that early window, we actually do get 'out of the woods' in a way those with hormonal or Her-2 cancers do not. My MO said he has personally never had a patient recur more than three years out.

    So far, I am not stressing about recurrence. I am maintaining my routines re exercise, diet, and supplements which saw me through chemo, and I will continue at least through my 3 year window.... I am doing what I can do. Statistically I have a 10% risk of recurrence, so it isn't zero, but it isn't horribly scary either.

    Has anyone besides me thought about doing some of the off-label stuff people are doing like FenBen, High dose C, or other protocols? These seem like proactive things one cold do towards reducing risk of surviving cancer stem cells....

  • HappyAnyway
    HappyAnyway Member Posts: 446
    edited June 2019

    Hey santabarbarian. Yes, I plan having vitamin c infusions once I am done with chemo.

  • moth
    moth Member Posts: 4,800
    edited June 2019

    my off label thing is this:

    A Role for Resistance Exercise in Cancer: Destruction of Circulating Tumor Cells in Contracting Muscle


    https://www.fasebj.org/doi/abs/10.1096/fasebj.2018.32.1_supplement.644.10

    My take away from this one is to do resistance training which raises the heart rate to 120 for 7 minutes minimum. That's the time required for almost all the blood volume to circulate through the exercising muscle. The exercising muscle (including the heart) undergoes physical changes which makes it likely that any circulating tumor cells would be burst by the pressures in the muscle.

  • KSteve
    KSteve Member Posts: 486
    edited June 2019

    ucfknights - I am approaching 9 years out and doing great. While I do think about breast cancer occasionally, it is not on my mind every hour of every day like it used to be. I am loving life, traveling and making memories along the way. I was 44 when diagnosed and now I'm 2-1/2 years from retirement! I remember a time when I wouldn't make plans even 3-6 months in advance and now my husband and I are making our retirement plans. Life does get better with much less anxiety about the big C returning. Now I'm just enjoying every day. We have a cruise at the end of September and going to Cabo with my whole family for a wedding in November. Life is good :)

    Hugs,

    Kathy

  • jrominger
    jrominger Member Posts: 349
    edited June 2019

    Thank you Ksteve! Such an encouraging post!!!! Exactly where my wife and I want to be and will be by years end!! Thank you. Round # 3 of AC this coming Monday.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited June 2019

    moth I hike up a mountain a couple of times a week, so 7 minutes of going up hill w/ breathlessness theoretically pumps all my blood through working muscles?

  • JJ62
    JJ62 Member Posts: 65
    edited June 2019

    Ditto to KSteve's comments. Almost 10 years out and doing great! 47 at diagnosis. I feel so fortunate! My goal had been to out live my mother (diagnosed with ovarian at 46, passed away at 48), and I so hoped to see grand children. I now have 2, 3 and 1 yr old! Best wishes to all!

    Jody

  • moth
    moth Member Posts: 4,800
    edited June 2019

    santabarbarian - that was my reading of the research and I think it's a plausible explanation for some of the benefit of exercise on lowering risk of recurrence, and the studies I saw which specifically linked intensity to better results (ie runners did better than walkers). What I'm not clear about is how frequently this has to be done. It will presumably only work on a single cell. Once the travelling cells clump and lodge in tissue & begin dividing, this wouldn't work. So I'm not sure if this means it has to be every day or what? TN cells (& esp Grade 3) grow so rapidly that I fear if it's not done frequently enough, some will get through.

    I do cardio regularly several times/week but I haven't managed to do it daily and I'm sort of wondering if it has to be daily to actually have a chance of working. This is one of those things that the more I think about it, I should really prioritize...

  • jrominger
    jrominger Member Posts: 349
    edited June 2019

    JJ62, such an encouraging post. We will plan on being in the same place once we get through the chemo, BMX, Ovaries etc.. A ways to go yet but we will get there. Nat is IIA, BRC1, 2.1cm, zero nodes, 56 yrs old. We did have a set back due to a diverticulitis flare which she never had in her life. We will resume #3 of 4 AC chemo this Monday. Hoping her WBC's wont zero out again. Neulasta works just takes about 9 days to kick in. Thank you again Ksteve and JJ62. This is what I need to focus on!

  • rrshannon
    rrshannon Member Posts: 117
    edited June 2019

    16 years this week I had my TMBC tumor removed. Hard to believe my youngest was just 1 at the time and now has just graduated high school. All the years since I have focused on exercise as much as I could when i wasn't dealing with other health issues. I also changed my diet a lot since that first diagnosis. Though my diet has changed a lot still over the 16 years I find I have eaten a healthy diet about 80% of the time over the years. Over the past 5 or so years I have lowered my red meat dramatically and increased my organic foods. I have started Vitamin C IV infusions after my first surgery this year to help with healing and improve my immune system and plan to keep them up to reduce my risk of reoccurrence.

    I have found a love for travel sine my first diagnosis and though early on it was hard to plan trips that weren't in the short future over time I was able to make more long term plans. Good luck to everyone on this journey it has its highs and lows and I personally try and make the most of it.



  • ScotBird
    ScotBird Member Posts: 650
    edited June 2019

    Moth any exercise is good, and the more the better. I tell myself that just doing something physical as often as possible is my top priority in life. I don’t always manage to follow through with actual activity though... I’ve just gone past 3 years since surgery, and just had a clear annual mammogram, so feeling very happy. X

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited June 2019

    This looks good .... common tapeworm medication effective against stem cells / TNBC

    https://m.medicalxpress.com/news/2019-03-tapeworm-drug-common-vulnerability-tumor.html

  • VLH
    VLH Member Posts: 1,258
    edited June 2019

    Sixteen years...how wonderful, rrshannon!


  • VLH
    VLH Member Posts: 1,258
    edited June 2019

    I can't recall where I found this link about a study in The Netherlands examining adjuvant chemotherapy for Stage I TNBC. I apologize if it was previously shared land I missed it. Note that this refers to chemo after surgery (adjuvant), not before (neoadjuvant).

    "Benefit is most evident in grade 3 tumors and tumors greater than 1 cm and not evident in tumors less than or equal to 1 cm and grades 1 to 2."

    https://www.healio.com/hematology-oncology/breast-...

    Lyn

  • MountainMia
    MountainMia Member Posts: 1,307
    edited June 2019

    VLH/Lyn, thanks for the link. Very interesting. They were talking about me -- grade 3, T1c sized tumor, node-negative. My MO was pretty wishy-washy about recommending chemo, but I'm glad I went ahead. I have one more AC treatment to go, then follow-up with radiation. Hoping that helps my DFS and OS.

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