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Another one joins the team

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ljhoward View Drop Down
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    Posted: Dec 18 2007 at 8:01am

Hi, my name is Linda I am a 47 year old BRAC1 positive, triple negative breast cancer survivor.    I was diagnosed with Inflammatory Ductal Carcinoma on April 19, 2007.   I join the ranks of another triple negative breast cancer survivor.    Below is my story.

 

I started out the year 2007 with a New Years Resolution to focus on my health.    Unfortunately, the focus didn't turn out exactly like I had planned.   I entered a medically supervised diet program on January 12, 2007.    My goal was to loose 40 pounds.    Around the 25 pound mark I detected a lump on my "Well behaved" breast.   Since I was due for my annual mammogram,  I requested my doctor write the script for a regular mammogram with a wet sonogram if needed.    On April 19, 2007 I went in for my mammogram, and low and behold no tumor.   But since I felt a new mass, I insisted on the wet sonogram.    Oh, to their surprise, was a 2cm tumor poorly differentiated.    The radiologist was surprised and told me not to worry, but I should have a biopsy as soon as possible.   I had been through this routine 5 times prior, I new exactly what to do.   But for some reason, this time I new it was different and decided to have a needle biopsy instead of rushing into surgery to have another lump removed and waiting for pathology.   On April 22, 2007 I had a needle biopsy.   On April 26, 2007 I received the diagnosis of poorly differentiated inflammatory ductal carcinoma - triple negative.   This was Greek to my ears.   I thought I understood breast cancer, but WOW was I wrong.  

 

I elected for a double mastectomy based on my prior history, genetic testing, and the fact that my Mom had breast cancer at 27.    I was lucky because I live in Northern Virginia where there is excellent care.    My surgeon is a renowned Breast Specialist.   She works with a plastic surgeon, so I was able to do my mastectomy and reconstruction in one surgery.  Good news is my cancer did not breach the lymph system and my sentinel node surgery was clean.  

 

On June 26, 2007 I started my chemotherapy treatment.   I received 4 round of AC and 4 rounds of Taxol.    I finished up my Chemotherapy on September 26, 2007.    

 

The chemotherapy has taken me from pre-menopause to post menopause.    I am experiencing low blood sugar and bone pain still today.  

 

The biggest frustration is what now?    Being triple negative and told to just wait is very difficult.   I am a take control type person and feel like I am out of control. 

 

Any suggestions??

 

My next big step is a full hysterectomy within the next 6 month since I came up BRAC1 positive.    I am taking every step I know to prevent the recurrence, but feel like there isn't enough information out there.     

 
Wishing all of you Happy Holiday, a Healthy 2008 and prayers for good health.
 
Linda
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CarynRose View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2007 at 11:35am
Dear Linda,
 
I just want to commend you for your proactive approach to this situation.  Your story sounds so much like mine.  I say that without wanting to scare you because of how I ended up.
 
 I recall how scary it was when I completed my chemo and radiation and had nothing else to do because there was nothing for ER/PR- Her2nu - (they hadn't coined the 'triple negative' term in 2003-4).  Because I was BRCA1+, I learned all I could on the subject and made sure that I did the standard high risk surveillance, which at the time, was 2 mammograms, one breast MRI, and a transvaginal ultrasound each year. 
 
I had my ovaries and fallopian tubes removed and was planning on having my breasts removed and reconstructed in Oct. of 2007.  Of course, before that could be planned, my annual MRI found the tumor in the lymph nodes.
 
If I had to do it over again, I would have had MRI's twice a year.  I think that would have at least caught the recurrence before it metastacized.    Also, if I ever had any symptoms, I'd insist on a CT or PET scan of the area, just to make sure.
 
I think you can find doctors who will give you information about twice yearly MRI's so that insurance will cover it.
 
May 2008 bring you only good health and contentment.
 
Caryn
 
 
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2007 at 12:44pm
Hi Linda and welcome!
 
I agree with Caryn, your proactive approach is wonderful.
It sounds like you are in good hands.  About all we can do
after treatment is stay vigilant with our bodies, if something is
wrong that is bothering or worrying you they say the 2 week rule
applies, then call your Onc.
 
You sound like a gal that is on top of things, good luck to you and happy holiday to you!
Stage 2 2003
Stage 1 2007
BRCA 1+
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Dawnk View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dawnk Quote  Post ReplyReply Direct Link To This Post Posted: Dec 20 2007 at 5:23pm
I just finished AC and taxol 12-14-07. I was in a study for partial radiation and that was done before chemo, so I am done.
 
It's scary right here, finished active treatment and now just wait.  When I asked the doctor (numerous times as I wanted to be sure I heard her right) what next.  Exam every 3 months for 2 years, and mamo 1x a year.  No mri no cat no pet?  Nope..thats it.  So how do convince insurance to pay for it when your doctor doesnt think you need it?
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2007 at 3:38am
Hi Dawn,
 
The follow-up plan your Doc has set up is pretty common I'm afraid.
My first time I had the same follow-up except I had a mammo on the affected side at 6 months then a full mammo at 12 months.
 
Next month I'll be going in to see what the Onc will be doing for follow-up for this time and I would bet it will be the same although mammos are out since I've had a mastectomy.
 
How was your study done for partial radiation before chemo?
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote twill6 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 21 2007 at 4:15am
Hi, Linda, I am a 48 year old BRAC1 positive, triple negative breast cancer survivor too. I was diagnosed with Ductal Carcinoma in situ on April 28, 2005, I was 46 at the time and had just become a first time grandmother. Below is my story.

I found a lump in my right breast and went to my Dr, who sent me for a sonogram. After she received the results, she sent me to see a surgeon, who immediately sent me for a needle biopsy and a mammogram. On April 28, my surgeon called to tell me that my biopsy showed a malignant tumor and she wanted to see me in her office the next day. She referred me to a plastic surgeon that she worked with frequently and on May 16, 2005, I had a mastectomy and a latissimus dorsi flap reconstruction surgery. They found 1 lymph node affected. The surgery prevented me from getting to see my new grandson in May when I had planned. On May 26, I was back in surgery to have some skin removed so that I would have clear margins.

I began chemo therapy in July 2005 with 4 rounds A/C and 4 rounds of Taxotere with Xeloda. I completed chemo on 12/01/2005.

My sister had breast cancer 3 years before I was diagnosed and hers returned in her ovairy and bloodstream at the time my was discovered. I have been very concerned that mine would return. My sister now has cancer in the liver and colon and there is nothing else that they can do for her. We will probably loose her in the first part of 2008.

In July 2007 I spoke with oncologist about all of this and she sent me for the genetic testing, which came back as BRCA1 positive. On October 1, I had a mastectomy with reconstruction on the left breast as a preventive measure. I had a hysterectomy in 2003, or that would have been my next step.

I understand the frustration about what next? I know that making it past 2 years as a triple negative without a recurrence is a good sign, but I still want to be pro-active about what can I do next. I am also getting ready to be switched to seeing my oncologist every 6 mos instead of every 3 mos.
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blackn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote blackn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2012 at 9:07pm
Has anyone been seen by ANY Northern Virginia doctors?
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2012 at 10:14pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote PeggySull Quote  Post ReplyReply Direct Link To This Post Posted: Dec 24 2012 at 7:24pm
Yes, I'm not crazy about my oncologist but I love my surgeon near Fair Oaks Hospital.  His name is Hernan Vargas.

My onc is Nicholas Robert, well known but a cold fish.  There are too many cancer spec in his group so help from nurses is sparse.  I stay because it allows me to get chemo in Gainesville where I live and I know Robert is technically excellent.

Hope this helps!

Peggy
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