• 10 year recurrence possibility for Invasive Lobular Breast Cancer?

    Asked by Clementine_P on Tuesday, September 6, 2011

    10 year recurrence possibility for Invasive Lobular Breast Cancer?

    So, I have been operating for the past year and a half on the 5 year bench mark for being in "permanent remission". Recently, I learned from my oncologist that for my kind of breast cancer 40 percent of the recurrences occur within years 6-10. At first I was unhappily surprised by this but now I have decided that it is yet another reason to let go and try to live my life as if I am cured. Waiting 10 years is a long time to be feeling angst about a possible recurrence. Has anyone else heard this?

    12 Answers from the Community

    12 answers
    • lynn1950's Avatar

      Clementine, I had both lobular and ductal cancer. My oncologist told me that the chance of recurrence was greatest in the first three years; after that and until 5 years there is a sharp drop off. He said that for my diagnosis, my chance of recurrence never drops to ...for the life of me, I can't remember! I'm pretty sure he didn't say 0, but maybe he did.

      I believe these statistics were based on the size and type (grade, how aggressive) of tumors, and because the cancer had spread to more than two of my axillary lymph nodes.

      A little bit different take on lobular cancer.

      about 5 years ago
    • Clementine_P's Avatar

      Thanks so much Lynn. Part of me wants to ask my Oncologist again, and another (saner) part thinks that I should just let it go. I think I will probably just let it go. I am officially one year out of treatment now and I should just be happy with these small victories. Thank you again!


      about 5 years ago
    • mspinkladybug's Avatar

      here is the deal it can come back at ANYTIME 2 days or 90 years later we CAN NOT live in fear once we hit the 5 year mark we can breath a tad bit better but here is the good thing the dr knows we have a bomb in our body so they look for that bomb to make sure it has not gone off now look at all the people who do not know and whos dr do not look for it. so now we learn how to live our life after treatment we look forward not back and we must not do the what if game keep ur eye on theprize LIFE. and let the dr worry about the rest!

      about 5 years ago
    • sofarsogood's Avatar

      It doesn't matter what the statistics say, if it's one in a million and you're the "one", the rest is irrelevant. Your doctor can't tell you what will happen to you; no one can.

      almost 5 years ago
    • annemarie's Avatar

      Just wanted to post a link to something I found in Science Daily:

      This is an article about a new, more sensitive test for protein markers to detect circulating cancer cells many months before current tests can "see" the cells. The line that was most significant for me:

      "Daniel Raftery, Ph.D., who reported on the test, pointed out that breast cancer survivors -- 2.5 million in the U.S. alone -- face about a 1-in-5 chance that the cancer will come back, or recur, within 10 years of treatment."

      This flies in the face of what we are constantly told..... Five years is always the magic number. As with any quoted statistic, it could be that a large percentage of the recurrences are in the FIRST five years but still......

      And, as sofarsogood wisely points out, it doesn't matter WHAT the odds are.... if you fall on "the bad side" ..... the rest truly is irrelevant.

      As a lobular patient who just completed my five year chemo completion, I am as concerned as Clementine. I remember the original core biopsy of the cancerous area. I remember the "density" breaking apart (the words of the radiologist who was sure the density was nothing...... and I can't say ANYTHING negative about her... she is highly accomplished... that's just the nature of lobular)....... The thing is..... those words continue to haunt me. Is there a chemo resistant micro metastasis floating around my system waiting for the right moment to attach to something?

      These fears and concerns are not easy to live with and I think we need to understand they will likely always be somewhere in the backs of our minds....

      Wish you well...


      over 4 years ago
    • lauratemkin's Avatar

      I was diagnosed one year ago and had 18 positive ILC lymph nodes. I believe my oncologist said you never know until you die of something else. Go live your life. One thing cancer does is make me appreciate every day. Another thing it does is make me worry every day too.

      over 4 years ago
    • Judi228's Avatar

      Unfortunately yes. Had mastectomy and chemo in[phone number redacted]. Was diagnosed with bone metastases in 2011. And it wasn't found by any tests that the oncologist did.

      about 4 years ago
    • cathieb's Avatar

      From day one I've known that breast cancer is just one of those cancers that can come back anytime. My mom died 10 years later of a brain metastasis from a small invasive breast cancer for which she'd had a mastectomy. I was diagnosed in 2001 with ductile carcinoma in one breast, and then in 2009 with Lobular carcinoma in the other, plus the first cancer had recurred in my mastectomy scar. I decided 11 years ago I would not live in fear, but trust in the LORD with all my heart. I have two favorite sayings: "Either way I win!" and"I'm here on earth until my work is done and my Savior calls me home!" In 2009 I told my oncologist that I had already out-survived all their studies which only went out to 5 years. ;-)

      about 4 years ago
    • Mugwump's Avatar

      I had a recurrence of lobular carcinoma within 9.5 years of my double mastectomy. The tumor has been successfully removed, and I'm on a anti-estrogen drug again (Femara).

      about 4 years ago
    • judijudijudi's Avatar

      It is my impression from cases that I have heard about that most any cancer can recur in 10 years, or maybe a different cancer will occur possibly related to all the radiation a patient is exposed to for the treatment of the first cancer. I don't have to worry about recurrence since I was diagnosed in stage IV and will have cancer for the rest of my life, which will probably be shortened by the disease. I have reached a place of acceptance in my thinking. It is what it is. I had a 16 mos. remission after chemo that was much longer than the doctor predicted (6 to 8 mos.) and was a little shaken when I came out of it 10 months ago, but I am just trying to live life like a healthy person. In fact, when you 'live like you are dying' I think you appreciate life more. Skies look bluer and clouds look lovier than ever before. I'm just so grateful to have time to really enjoy life before I move on.

      about 4 years ago
    • karen1956's Avatar

      My onc never uses the term "cured"...but rather "NED" (no evidence of disease)...I quit AI's after 3 1/2 years due to QOL issues....life is better but not back to before BC....for me, the longer I go without a recurrence, the longer I am NED, but I know that I"m never totally free from some worry, but it doesn't consume me.....I try to live life in the present and do things that make me happy...I am 6 1/2 years since Dx.....

      about 4 years ago
    • karen1956's Avatar

      OH and another thing for me.....Its 100%...either I stay NED for ever, or it recurrs.....I don't listen to any of the other statistics....and as long as I'm NED, then its 100% that I'm cancer free at the moment...its helps me get by without the worry of what if!!!! So today, I'm NED!!!!

      about 4 years ago

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