New Primary after 19 years

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JoanQuilts
JoanQuilts Member Posts: 633
edited June 2014 in Second or Third Breast Cancer

I was diagnosed with a Stage 1 2cm node negative bc 19 years ago, when I was just 34.  After a lumpectomy, radiation and chemo I had been fine until my recent annual mammo and sonogram at which both a DCIS and 8 mm tumor were detected in the same breast, biopsied and found malignant.

I am now facing a bilaterial mx with immediate TE reconstruction. My surgery is January 6.  I am BRCA negative.

Most of all I feel lucky to have detected this so early, bu talso disappointed at having to go through this again and at no longer being able to say to other women that I have survived for 19 years!  I don't yet have the ER/PR/Her 2 Neu results from the biopsy but am hoping for no chemo.

 I'd appreciate hearing from other women who have been diagnosed after such a long respite.

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited December 2011

    Joan - of course you are disappointed! I am very glad you had 19 cancer-free years since the first time, but STILL!!!  

    One good thing is that BCO is going to be a huge help/support to you in whatever treatment you need. That will be a big difference than before - was there even the internet back then? If so, nothing like it is now.  So once you get more info, find your appropriate places in our wonderful community and get the support you need.  

    Sorry you have to be here but glad you found us.

    Amy 

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  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited December 2011

    You're right, Amy, there was no Internet of any significance back then.  So many differences.  I was so young, didn't know anyone who had had breast cancer, had an infant at home....and thought I was going to die.  It was an awful time for me and my family.  But here I am.

     In the intervening years, I have met hundreds of women like myself, walked and run in fundraisers and am actually interning as a social worker at a cancer center where, ironically, I counsel women with breast (and other) cancers.

     I think many women find it more difficult to be rediagnosed - but I am finding it easier.  This time, I know all the terminology, know (somewhat) what to expect, and have this tremendous support system around me.  

    I hope I can be as much of a support to the rest of you as you will be to me.  Thank you in advance.

    Joan

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  • kira1234
    kira1234 Member Posts: 3,091
    edited December 2011

    Joan you're right things have changed so much in 19 years. I'm so sorry you find the need to come here for support as well as offering support. This place has been a god send for me this past year. The help I have received from these lovely ladies can not be understated.

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  • 9911
    9911 Member Posts: 54
    edited December 2011

    Joan-

    You are right ... I too find it much easier to deal with BC the 2nd time. I know what I like and dislike about the Dr appointments, labworks, scans, drugs, treatments ...  make it easier to deal with since I already know the unknown from the 1st time. I'm a TN again ... 12 years later. It's still the same treatments for me. The only thing new is free flap surgery. So, I had BMX with free flap surgery. 

    Best wishes ... peace

    -LA

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  • bak94
    bak94 Member Posts: 1,846
    edited December 2011

    Joan-You are still a 19 year survivor! this is my second time but my first time was 9 years ago at the age of 36. I am one of those that has found it more difficult this time, maybe because it was missed and I was diagnosed at a later stage. I am going to try not to worry like I did the first time after I finished treatment, so I guess I did learn some important lessons the first time. I am also more pushy with questions, I think I drive my mo crazy. Actually he is pretty patient with me.

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  • marmsie
    marmsie Member Posts: 59
    edited December 2011

    My second primary was found 9 years after the first. Definitely two different cancers, same breast, the first was TN, the second more "run of the mill" ER/PR+. I found it difficult to grasp, still do to a small extent, that I had to deal with it AGAIN. There was not the panic and rush with the second round, I knew I had time to make decisions, to my "homework", get comfortable with my decision (though the only decisions I really had were one breast or two, and would I do reconstruction). I also found out during the second go that I was negative on BRCA.

    As others have said, you most definitely HAVE survived 19 years. That cancer is gone. You will now join the special group of us who will beat it multiple times. Still counting on the first cancer, starting your count on the second. Sending you good thoughts as you get ready to go through this again.

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited December 2011

    I was talking to two friends who had breast cancer just 8 and 9 years ago. After speaking with them,  I believe both the SNB and Oncotype Test are new since their initial Dx's.  There are so many new tools for deciding treatments and removing less nodes..maybe even more since 19 years ago. Also newer generation chemos.  That is a huge positive.

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  • VJSL8
    VJSL8 Member Posts: 652
    edited January 2012

    I got you beat Joan. I was 1 month shy of 23 years when I had a recurrence in 2010. I was 32 when I was first diagnosed  and in 2010 I had a BMX with immediate DIEP flap reconstruction. 

    This second time around for me is quite different.  Whilel I was completely shocked that it came back, I wasn't as fearful this time and I made more of my own decisions regarding treatment--deciding to not have chemo and I stopped the arimidex after 1 year because of side effects. Social support was more important this time and I joined Gilda's before my surgery. But I definately felt more in control because there wasn't the sharp learning curve like the first time. And like you, I give talks on BC for the American Cancer Society. 

    I asked if mine was a new primary or recurrence and I was told mine was recurrence. Were you told why they considered yours a new one? My second tumor was right in the middle of all the old scar tissue, which is probably why originalyl it was said be 1.5cm and after my surgery, it was changed to 2.8cm--the scar tissue was hiding it.

    Good luck on your surgery! They have better pain drugs now than they did in 1987.  

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  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited January 2012

    Hey there - two doctors told me they were new primaries because they were slightly away from the original, but mostly because of the length of time that had passed since the original tumor was diagnosed.  I like to believe that I was cured of the first cancer and that, despite my being BRCA negative, my body has a tendency to produce breast cancers. 

    It is very different this time, despite the fact that my upcoming surgery will be much more radical (BMX vs. lumpectomy).  But I am much better educated this time, I have learned a great deal about managing my stress and I am hopeful for a good outcome.  Thanks so much for writing!  Joan

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  • VJSL8
    VJSL8 Member Posts: 652
    edited January 2012

    I went back to my same oncologist, whom I hadn't seen in at ages, so long that they no longer had a file on me. But what was really cool was the same 4 employees he had in 1987, are still with him today, along with a lot of new people. But they remembered me. I was the last patient of the day and my BFF was with me and my onc. remembered her too. We sat around and gossiped. His son went to high school with my friends son.  It felt like family. 

    With your positive attitude Joan, I'm sure you'll have the best possible outcome! Knowledge is power! I unfortunately when back to old bad habits (ice cream and torilla chips) for comfort and gained 20 pounds. But I've dropped 10 of it and the rest will come off. 

    Do you have the ER/PR/HER2 results yet? VJ 

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  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited January 2012

    Yes - triple negative.  Just like last time.  :(  And my surgeon had suggested that I might be ER/PR+ because I'm now post-menopausal - another disappointment.

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