Lobular Breast Carcinoma

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New Member

Date Joined Apr 2005
Total Posts : 1
   Posted 4/27/2005 9:19 AM (GMT -7)   

I recently received the diagnosis that I have Lobular Breast Carcinoma.  I want to share my story in the hopes I can help someone else that may also going through this.


Last June 04, I had my annual mammogram which came back with some questions relating to my right breast.  Kaiser did several additional mammograms, some with magnification.  The results came back again inconclusive.  Kaiser then requested my old mammograms and compared them with the new ones.  It was their co conclusion, that there had not been any change in the area in question.


In December 04, I went in for my GYN annual exam.  My doctor found a lump in my right breast.  He felt it seemed like nothing but just a cyst (which I had had several years ago in my left breast that were benign).  But he recommended I have an ultra sound.  In January I then went in for mammograms and ultra sound which also found the lump.  A biopsy was done and I was diagnosed with Cancer. 


I was scheduled for Surgery and had a modified radical mastectomy of my right breast and a simple mastectomy of my left breast (my decision to also remove my left breast) on 3/8/05.  The results of the tissue showed that I had Lobular Breast Carcinoma.  Fortunately, it had not spread to my lymph nodes. 


I then met with an Oncologist on 3/22/05 to discuss treatment.  There were several options discussed, radiation, hormonal treatment and chemo.  Thanks to a friend of mine, I found out that there is a test available to determine if chemo would be of benefit in fighting my particular cancer.  This test is called ONCOTYPE DX Assey from Genomic Health.  Kaiser sent samples of my tissue off to Genomic Health the next day.  In 10 to 14 days my doctor will receive the results as to my risk of having a distant recurrence (coming back in another location) and whether chemo will be beneficial in fighting this recurrence of my cancer.  This is the important information I want to share with anyone going through this or knowing of someone that could be helped with this info.  If my friend had not shared with me that her husband worked for a company working on breast cancer research I would not have known the ONCOTYPE DX Assey test existed.  Many women will be given chemo therapy without knowing if it is effective on their individual tumor.  Most decisions to use chemo therapy are made based on statistics of how the “average” woman with this type of tumor will respond to the chemo, not “my” tumor.  This test looks at 21 genes of the patient’s cancer tissue and provides the likelihood of distant recurrence and the potential for chemo benefit.  It is only for women who have my type of breast cancer which has no lymph nodes involved and will respond to taking hormonal treatment.


I received the results of my ONCOTYPE DX Assey Test with a score of 13.  A score above 30 is high risk, 18-30 is intermediate and less than 18 is low risk.  My score of 13 puts me in the low risk range which actually means that chemo therapy would have little to no beneficial effects for me and, considering the side effects, could potentially have a negative impact.  Thanks to the results of the ONCOTYPE DX Assay from Genomic Health I have decided not to undergo the chemo therapy and will instead receive radiation & hormonal therapy.  Thank God, my prognosis is very good.   


If you or anyone you know would like additional information about this test please feel free to contact me or go to their website online at GenomicHealth.com.


Penny Smith

209256-3989 or  psgoodlife@sbcglobal.net

Regular Member

Date Joined Mar 2005
Total Posts : 44
   Posted 4/27/2005 1:35 PM (GMT -7)   
I can't believe you have written this!!!!!!!!!!!  I had surgery on April 13th for ILC.  I know I will have to take a cancer drug for 5 years and radiation for 6 weeks, but I am meeting with my oncologist this coming Monday regarding chemo.  I am going to take your letter with me.  I did not know any of this.  I am going to insist on this test.
Thank you so very much,

Veteran Member

Date Joined Jul 2003
Total Posts : 2921
   Posted 4/27/2005 3:49 PM (GMT -7)   
This new test has been discussed here just recently. It sounds like it is a great test and I thank you and all those who have told about it. I hope you will stay in touch with us and keep us informed as to how well you are doing. I was diagnosed eight years ago and was told I did not need chemo because my cancer was early stage, etc. I was 58. My daughter was diagnosed two years later and was given four chemo treatments "due to her age" and her tumor was fairly large, altho everything else looked good pathologically. We are both doing fine today. Some of our women on this board have very aggressive cancer types and are fighting a great battle against mets. We need to keep in touch and keep informed and share all we can, so that we will be armed with information. Stay well, and be sure to keep up to date on exams and mammos. Hugs, Mary K (MK)

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