Time before metastasis in hormonesensitive breast cancer

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Anna-33
Anna-33 Member Posts: 192

Hello. I find no statistics on this, but are hardly interested in hearing with you ... How long did it take for you to spread to other parts of the body, after primary diagnosis?

1) Estrogene and progesterone positive?

2) Estrogenpositive, but progesterone low or negative?

I hope it is okey that I ask. I am jumping between stage 3 and 4, because of som liverlesions they can not tell for sure.....


The reason I ask is that my oncologist said I could count on being healthy if the lesions in the liver or elsewhere had not developed in 5 years from primary diagnosis with my cancer type; stage 3, estrogen-sensitive but very low progesterone-sensitivity, high ki67, and mets to lots of nodes. I don't understand it with "healthy after 5 years" ... There are many who get mets after that ... But does it have anything to do with the low progesterone sensitivity?


Thanks for all the responses!

Comments

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited January 2019

    Dx 2B: March 2006

    DX 4: April 2012

    About 6 years. Bone only for four years after that.

  • Dvdsp
    Dvdsp Member Posts: 43
    edited January 2019

    Hi, my mum was diagnosed in december 2008 as a stage I er- pr++ her2- ki67 15%

    Her mets were diagnosed in november 2014 er++ pr- her2++ (IHC) her2- (fish) ki67 25%

    Another biopsy in october 2018 er+++ pr- her2++ (IHC) her2- (fish) ki67 25%

  • Dvdsp
    Dvdsp Member Posts: 43
    edited January 2019

    Hi, my mum was diagnosed as a Stage I in december 2008 er- pr++ her2- ki67 15%

    Her mets were diagnosed in november 2014 as er++ pr- her2++ (IHC) her2- (Fish) ki67 25%

    Another biopsy in october 2018 er+++ pr- her2++ (IHC) her2- (Fish) Ki67 25%

  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited January 2019

    Diagnosed 2001 as stage 2a - er+, pr+

    MBC 2016 (almost 2017) - same

    But, just want to caution about making comparisons at that level. So much depends on the aggressiveness, patient age, stage and treatment in addition to hormone sensitivity. I’m sorry that you are facing this nd sincerely hope the liver lesions are non-malignant.

  • SchnauzerMom
    SchnauzerMom Member Posts: 374
    edited January 2019

    First diagnosis (stage I), November, 1987

    Regional recurrence, December, 1989

    Metastases liver and bones, July, 2012

  • JFL
    JFL Member Posts: 1,947
    edited January 2019

    8 years. I went from Stage 2 to Stage 4 with extensive bone mets and liver mets. ER+/PR+. Mine was likely triggered by IVF/pregnancy.

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited January 2019

    Dx: DCIS, 2006, ER+, PR+ (close margins, higrade)

    Dx: DCIS, 2007, ER+, PR+ (close margins, higrade)

    Dx: Stage IV, 2016, ER+, PR-, Her2-, widespread liver mets, ?T12 met

  • pajim
    pajim Member Posts: 2,785
    edited January 2019

    Four years for me.

    But my Mom had sixteen years, then a local recurrence (she had a mastectomy this time). It's been seven more years with no problems.

  • Anna-33
    Anna-33 Member Posts: 192
    edited January 2019

    The reason I ask is that my oncologist said I could count on being healthy if the lesions in the liver or elsewhere had not developed in 5 years from primary diagnosis with my cancer type; stage 3, estrogen-sensitive but very low progesterone-sensitivity, high ki67, and mets to lots of nodes. I don't understand it with "healthy after 5 years" ... There are many who get mets after that ... But does it have anything to do with the low progesterone sensitivity?

  • Novagirl
    Novagirl Member Posts: 123
    edited January 2019

    Anna33,

    I was originally diagnosed in May 2013 as stage IIB. I was diagnosed stage IV December 2018. I had 5.5 years in between. I was ER 90% and PR40% HER2 neg. This time I’m still highly ER positive but PR neg(still HER2 neg). I don’t know the % of ER this time. From my understanding it’s hard with bone biopsies so maybe eventually I’ll find out I’m still PR positive.

    I can’t answer your question about PR sensitivity. I’m not sure but would also like to know.

    JFL, do you think you would still be early stage if not for the IVF/pregnancy? Or do you think it was always going to come back? I ask because I took a break from Fareston (serm like tamoxifen) in 2017 to try IVF with our frozen embryos and I feel as if I caused my early cancer to become stage IV

  • Anna-33
    Anna-33 Member Posts: 192
    edited January 2019

    by the way.... I was 20 weeks pregnant when I found my tumores...

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited January 2019

    this thread is so helpful and interesting to read!

    I was dx’ed de novo in April 2017 and one of my biggest questions that will forever remain a mystery unless science catches up is I want to know how long was this cancer active and growing inside of me? Inside my breast? Inside my bones? Was it 3 years? 5 years? 10? 20? I wish science could answer this question.

    I feel like there’s things in my life that I can look back on and ponder if they were influenced somehow by cancer growing in my body.

    Thanks to everyone who has shared

  • JFL
    JFL Member Posts: 1,947
    edited January 2019

    Anna, I was always told the 5-year myth. As it turns out, the risk continues and is about the same each year after 5 throughout the rest of a woman's life. I wish I would have known that before Stage 4.

    Nova, I have always thought that using estrogen patches in IVF caused it. That was not what I researched, planned to do or discussed with my MO or IVF doctor. IVF doctor went over everything included in the IVF process, told me he had a lot of patients who had a history of cancer, disclosed this info to my MO and required my MO to send a clearance letter before I did IVF. After that disclosure process and due diligence, there was a bait and switch from the IVF doctor when I was backed into a corner, desperate for a child and had to make a split decision in the moment when I was in his office and he was prepared to proceed with the entire process. I didn't need to use estrogen patches but he wanted me to use them to increase my odds. Once the process began where he essentially takes over the body's cycle with estrogen, there is no turning back. Had he mentioned the estrogen upfront, I would have gone through IVF and then used a surrogate or simply done a natural cycle IVF and forewent the estrogen.

  • Novagirl
    Novagirl Member Posts: 123
    edited January 2019

    JFL- I’m sorry. I know the feeling of desperation for a child. I too was given medical clearance. The IVF clinic I went to is the largest practice in the country but they are a factory. I assumed that the largest equated to the best. I learned it doesn’t. I wanted to natural cycle IVF and was told it doesn’t work and not be scared of the estrogen injections because if I was cleared for pregnancy then the estradiol valerate shots were much lower than estrogen naturally occurring in pregnancy.

    I had 5 frozen embryos. 3 did not survive the thaw. The first transfer did not work. Then they recommended a uterine lining test. You go through an entire IVF cycle except on your transfer day you do the biopsy instead of the transfer. The IVF clinic lost my biopsy specimen. Then they had me go through an entire new IVF cycle so we could do the biopsy again. Finally after that we tried for our last remaining embryo. It took but I had a miscarriage. The clinic never took the time to follow up with me.

    At the end of last year in 2018 Iwas going to try again but using my eggs post chemo at a different clinic. They do low dose stim cycles and natural IVF. They ran several tests on me then told me chemo had cooked my eggs and donor eggs were the only option. I started looking into adoption then three weeks later I got the news I was stage IV.

    I try not to look back but I can’t help but feel like I should have never attempted IVF. I feel like I have greatly shortened my time with my son I adore. I should have protected what I had but the maternal pull is so strong.

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