recuurence #2-looking for advice

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MommyKim
MommyKim Member Posts: 3
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I was originally diagnosed with invasive ductal carcinoma(0 lymph node involvement, grade 3 on pathology report) in March 2008.  I had a lumpectomy, treated with chemo(Carboplatinin and Taxotere) and Herceptin.  I was then to start radiation.  A repeat mamo was done and I now had lymph node involvement.  This was classified as a recurrence.  I had an axillary dissection and 7 weeks of radiation.  My original tumor, the lymph nodes from the original surgery and the axillary dissection were retested for receptor status and it was decided that I was so minimally positive with the estrogen, progesterone, and Her2 that I was now to be treated as receptor negative.  I then went through more chemo(Adriamycin and Cytoxin) high doses.  I then had repeat mammo's every 6 months which were negative.  December of 2009 I had a scheduled mammo which was negative.  I am religious about doing my monthly self breast exams and on March 1, 2010 I found a lump.  I went to the doctor, had an ultrasound (2.4cm tumor), biopsy which was positive for malignancy, went to oncologist and surgeon.  It was decided that I needed to have the tumor removed that was in my previous axillary dissection scar and a modified radical mastectomy.  Do I need to be concerned about this recurring again?  I know that because the receptor status is negative, it is a more aggressive type of cancer.  I have to see my oncologist again in about 1 week.  It will be decided then, whether I need further treatment(chemo/radiation)  Should I seek another opinion?  I had scans done which were negative for mets anywhere.  Looking for some advice.  How common is this type of situation??

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  • lexislove
    lexislove Member Posts: 2,645
    edited March 2010

    Kim,

    It sounds like the last couple of years for you have been definatly some you would like to forget. Woman do get recurrences, but from reading your post it sounds like you have had 3? AND...in such a short time frame.

    Im glad your scans are negative, thats good. Have you been with the same onc with your original diagnosis and recurences? If yes, if this was me, I would be seeking a second opinion.

    As far as being mildly ER-, a lot of oncs would stay say yes to anti hormones. After all these recurences I would be asking for Tamox or an AI, it depends on your menopausal status of course.

    Have you been tested for any of the BRCA genes? Do you have a strong family history of BC?

    Sorry for all this...Im hoping some other woman can help you better. Hang in there.

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  • Fidelia
    Fidelia Member Posts: 397
    edited March 2010

    Hi Kim,

    rather than having 3 recurrences it could be that not all of the original disease was removed in the first surgery and what you found was the result of not getting it all in the first place - not that it helps - but it may help assess your next move which should include chemo/rads and or AI as Lexi mentioned - sometimes breast conserving techniques are OK - and sometimes not - it really depends on type and grade of tumour - I am assuming they have assessed the new tumour to confirm type - if still triple neg - herceptin is still an option - as this has been shown to induce ER response even in negs - your onc definitely needs to explore your treatment options in conjunction with surgery - surgery has only been partially successful to date - to get a lasting result - treatment is mandatory - also - not really sure how useful those mammos are - your own vigilance has been more reliable and no associated radiation :)

    Best of luck

    Fidelia 

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  • MommyKim
    MommyKim Member Posts: 3
    edited April 2010

    Lexislove and Fidelia,

    Yes I have been with the same oncologist.  All of my tumors have been tested at Mayo Clinic.  Yes, we will be asking for at least a second opinion, not that I do not trust the oncologist.  As for the surgeries, with the lumpectomy they did the sentinel node and 3 others which wear negative.  They then treated me as if I was receptor positive because of the minimally positive path report.  The path report did show a grade 3 also.  Then before I went to have rad, another mammo was done and that is when the lymphnode was found, I had an axillary disection at a University Hospital.  My case was presented several time reviewing the path reports from Mayo and it was decided that I was so minimally positive that I need to be considered negative on all the hormone receptors.  I then went through the 7 weeks of rad therapy(after an axillary dissection with 25 nodes removed 3/25 positive for malignancy and 1 ruptured node that was also positive) and then Adiamycin and Cytoxin at high doses.  April of 2009 was was last treatment.   I had the follow-up mamo's and all were negative up until and including December 2010.  March 1st I found the lump, had an ultrasound, biopsy showed malignant and then mastectomy.  The path report did come back showing the receptor negative cancer but the tumor was very localized.  I am seeing my ONC on Monday and will be asking for a 2nd and or 3rd opinion for my own peace of mind, not questioning his treatment plans.  The university that reviewed my case stated that they were in agreeance with my onc treatment plan.  I am just wondering how many other woman are going through this and what they have done???  Thanks for your support....Sorry for the re-explanation.  Just thought it might help.I was told that due to the receptor status, I would not benefit from al or tamoxifen.

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