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Introducing myself

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Alma View Drop Down
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    Posted: Apr 04 2008 at 4:26pm
I found this site via the lbbc.org announcement about the triple negative teleconference to be held on April 18.  Wonderful!  My story is complicated so if you don't have much concentration now, come back later.  I am a two-time loser on breast cancer.  First, back in 1995, with the "usual" type: infiltrating ductal carcinoma, Stage 1, Grade 3, node neg, highly aggressive tumor.  Did mastectomy/immediate TRAM reconstruction. Then 6 rounds of AC. Yeah, back then the regimen was different. Took 6 months (12 treatments).  Recently the research shows that the "A" (That Red Devil) was probably not useful. Grrrrrr.... but who knew back then?
 
So, it was 5 years of tamoxifen, after which I entered the MA-17 clinical trial of Femara (letrozole) vs. placebo), which was supposed to last 5 more years. BUT after 4 and 1/2 years I found a lump, like a very stale marshmallow, on the other breast, and exactly ten years from the day of my definitive surgery for that first cancer, I received the news that I had another cancer in the other breast. When I saw my doc after he had called me with the news, I had the Femara packed up in a brown bag and asked him if I should stay on it. He said, "Well, it didn't do you any good," so I handed the pills back and dropped out of the study. If you look at the MA-17 stats, I am among the few who show up with "second primary breast cancer" in the stats.
 
That was April 2005.  (Yup, I am going to celebrate my third anniversary on the 20th, but then I celebrate every anniversary.)  This new one was 1.8 cm, Stage 1 (then), sentinel node neg. (more on that to come), and triple negative.    Not only is this new cancer triple negative, it is a subtype.  It is "typical medullary carcinoma of the breast" which is somewhere between 1 and 10% of all breast cancers, with most of the literature saying it's 5%.
 
Back to the Stage/node status.  At first, my med oncky doc and I were both comfortable with no chemo because typical medullary usually does not leave the breast.  I had a lumpectomy but did not do rads. (There's a story there too  but I won't bore you with that.)  So...things went along from April to December when a "hot" node popped up in the breast. And I do mean popped.  Medullary carcinomas are inherently aggressive if you look at the biologic features, but "typical medullary carcinoma" is set aside in the studies because it does not behave like other cancers. The docs do not know why but it usually stays put.  However, if it metastacizes, 'survival is short.'  Nice, eh?  And it goes to brain mets more than those other breast cancers do. Sigh.
 
Back to December...That node which appeared almost overnight was hurting and it was big and bigger, so I had that out plus ten more. My incredible surgeon (We are old friends now.) had promised me with a wag of his index finger, "One. Just one." and he was right. So I am now Stage 2a.
 
The med oncky doc said, "Chemo is back on the table" and "We are going to completely restage this cancer."   I had had my pathology from the lumpectomy confirmed at Vanderbilt by a breast cancer pathology guru who had stated that the diagnosis was "as pure and certain as any we have seen" so that hot node was a stunner because the sentinel node had been clean. The cells in the hot node match those from the original tumor (could have been a new cancer, you know). A huge problem with "typical medullary carcinoma of the breast" is that the pathologists get the diagnosis wrong a good deal of the time, but mine was correct.  (If a pathologist says a tumor is typical medullary and he's wrong, what the patient has is a very ugly ductal carcinoma, requiring more aggressive treatment.)
 
  Anyway the tumor board's consensus for treatment after that hot node was found and pronounced as cancer matched the opinion of an outside consult at MSK that I forced my oncky doc to do, so I did what they all said. That was get the node(s) out, do a breast MRI to see what else might be hanging around (nothing), and do 4 rounds of "one of the taxanes."  I negotiated with the doc and we decided that 4 rounds of taxotere would serve the purpose, a regimen I completed in early 2006.
 
So, I get to observe an anniversary of the end of chemo, and the removal of that node, and so on. Just keep looking for "occasions" to celebrate.
 
Today a Br Ca friend who is an advocate told me that she met a triple negative woman at a conference last week, and that woman was diagnosed ten years ago. She is fine today. I love stories like that.
 
I just saw my med onc (bid him goodbye since he is moving "back to New England" after 17 years in the Midwest.).  He said that breast cancers are being sliced into increasing numbers of categories, which I knew from my reading.  I heard that breast cancer is at least 28 diseases. I believe it.
 
Oh, I looked at the photos of the founders of this forum/organization and the women at the fund-raiser last year. It pains me to see how young you are.  I hate breast cancer. It has taken too soon so very many of my friends over the past 13 years that I go out of my way to try to make the journey less stressful for others whenever I can. Knowledge is power.
 
I wish you well, and I do mean WELL.
 
Love and luck,
Hugs and hope,
Alma
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2008 at 5:45pm
Welcome dear Alma,
 
What a story! You are now among friends on this site. The support is unwavering and whatever we have to share in experiences and treatment is yours for the asking.
 
I was holding my breath reading your history...you are truly an inspiration.
 
Connie
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Alma Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2008 at 5:14pm
Thank you, Connie, for the welcome.  I know this group is supportive, just from the reading I have done so far.
 
May I ask whether anyone from this group has taken the Project LEADer training?
 
Another triple negative friend from 1997 has done that training and she saved my sanity while I/we were researching my second cancer.  She took my case on as her first "project" and found all sorts of information to help me put my pathology report into perspective.
 
Oh, she is doing fine.  She was ready to retire her medical oncologist, but when I developed this second primary cancer, she thought better of that. 
 
Even after 11 years one does well to keep a doc waiting in the wings.
 
Cheers,
Alma
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2008 at 9:16pm
Dear Alma,
 
I am sorry I am not familiar with the ProjectLEADer training. Perhaps someone else is able to answer.
 
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 06 2008 at 4:51am
Hello Alma welcome and thank you for sharing your story.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Alma Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2008 at 12:35pm
[Dear Alma,
 
I am sorry I am not familiar with the ProjectLEADer training. Perhaps someone else is able to answer.
 
Connie
 
....................................
 
Connie, here is an address for looking up Project LEAD.
 
 
It trains people to read the science of breast cancer and then to advocate for what we need. They are looking for people who already do some advocacy work.
 
If I were younger, I would look into this. It seems to be a great way to effectively advocate for attention to our kind of Br Ca.
 
 
 
Here is part of the application form:
 

Part IV: Essay Questions

Please provide your thorough response to the following questions. These responses are a critical part of the

selection process for acceptance as s Project LEAD participant. This competitive process enables us to

choose students who will most benefit from the course for the limited number of spaces available.

(Please include answers on separate sheets of paper. Four-page limit).

1. Describe your past and current involvement in breast cancer advocacy. (250 words)

2. Why is it important to you to learn about the science of breast cancer?

3. How would your training help to further NBCC/Fs mission (research advocacy influence)?

4. Why do you think you would be an effective breast cancer advocate in furthering the breast cancer

research agenda?

Part V: Letter of Recommendation

Please include 2 letters of recommendation from an organization or individual who is familiar with your breast

cancer advocacy. At least one letter from an NBCC/F Board member, Field Coordinator, LEAD graduate, or

Team Leader is highly suggested. This letter should describe your involvement

in breast cancer advocacy and

why attending this course could benefit your advocacy work.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Alma Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2008 at 12:40pm
Thanks, Pam.
 
I see that you too are a two-time survivor of breast cancer. That's not an "honor" we would ever aspire to, but hey, we keep on keeping on, eh?
 
My PCP said, "Once you have a cancer, you are at increased risk for other cancers."  At least with my second cancer's being a breast cancer too, I haven't had to go learn all about an entirely new type.
 
I guess there is something good in that.
 
 
Alma
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