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NinaE View Drop Down
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    Posted: Dec 11 2009 at 7:42am
Hi all,

I was diagnosed earlier this week with tn IDC. I'm 38. My biopsy results show grade 3 (modified SBR 3 of 3), lymph vascular invasion and prominent lymphoplasmacytic infiltration, necrosis comedo type involving less than 5 % of the tumor, mitosis count at 52 per 10 HPFs. The mammo indicated a tumor of 6 cm, but my surgeon believes it's not quite that large, between 3 and 5 cm.

I'm having genetic testing done. My aunt and grandmother died of BC at  young age (late 30s), so I assume there's a strong chance I'm BRCA positive. I've been getting regular mammos (the last one before diagnosis 1.5 years ago) and had a physician's breast exam in March, so I'm shocked to find out that I have what looks to be a pretty large tumor.

I'm leaning toward a mastectomy rather than seeing whether I'd be a candidate for a lumpectomy. And will probably go ahead with a bilateral. I might do the bilateral even if I test negative for BRCA, for a number of reasons. Has anyone here considered a bilateral without waiting for the BRCA results, and what factors influenced your thinking?

Because of the lymph vascular invasion, the mitosis count and the size of the tumor, I'm pretty much prepared that I'll be node positive, but of course I'm hoping that no further mets will be found.

What else should I be considering right now, and what kinds of questions should I be asking my surgeon and oncologist?

Thanks in advance for your help and best wishes to everyone else reading here. I've been reading a bit the last day or two and this looks like a wonderful resource. I'll add my info to my signature when I have a bit more information about where I stand with this.

NinaE


Edited by NinaE - Dec 11 2009 at 7:45am
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2009 at 9:04am
Dear Nina,
Welcome to this site. We hate that any of has to be here but so happy we have this forum to ask questions, answer questions, vent, whatever we need.
I can't answer your questions but we do have members here who know EXACTLY what you need. I am sure they will be along soon.
I can tell you that we have a thread to help you deal spiritually with your dx. Just look under Support Groups and you find us in Spiritual Support.
I pray many blessings for you on your journey. Please don't hesitate to call on us.
Love and prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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unklez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2009 at 9:48am
Dear Nina,

Welcome to TNBC Foundation. I echo Carol's sentiments. Also want to add that bilateral mastectomy is a definite if you are BRCA +ve. If you are BRCA -ve, it is a hard decision but some women go ahead with it to reduce their risk of a new cancer in the other breast. It is also easier to obtain symmetric reconstruction after bilateral mastectomies. I know 2 women - 1 was pre-menopausal - who underwent bilateral mastectomies and got new breasts in the process. They both claim to be super happy with the outcome. However, my wife didn't even want to consider mastectomy or bilateral mastectomy once the surgeon offered lumpectomy to her. I guess what I'm saying is that this is a very personal and individual decision. Whatever you decide we will be with you as you go through this traumatic journey.


Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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gailw View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gailw Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2009 at 10:18am
Hi Nina - good luck with whatever you decide.  I have just had a single mastectomy with immediate reconstruction and have to say the results are very good.  I am waiting for BRCA test before I decide what to do on the other side.  It is a big operation but personally I was more reassured to know that it was all gone. 
 
I am quite new to this site - but have found that there is a lot of information and support here.  Chin up....
 
BC 1994 - Lumpectomy and Rads. Diagnosed Oct 2009 - Mastectomy, waiting for chemotherapy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2009 at 7:08pm
NineE,

Hello and glad you joined this site.  You'll find such a loving and caring community to help you through your journey.  There has been much discussion on this site regarding mastectomy vs lumpectomy.  You might want to do a search on this topic and read the posts.  I chose a bilateral and happy with my decision.  I've known other friends who chose a lumpectomy and radiation and are very happy with their choice.  If given the choice, it's a very personal decision that you'll have to consider all the options and how you feel about the 2 procedures.  Keep us posted on your decision and your treatment plan.

Donna


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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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: Dec 11 2009 at 7:11pm
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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NinaE View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NinaE Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 3:32am
Thanks for that list of questions to take to the doctors -- very helpful.

I realize now that I have a few questions, but I'm not sure the newbie thread is the place to ask. I hope it's OK that I ask here and repeat my question on the regular thread.

I looked at the treatment flow chart posted by MD Anderson and noticed that their intitial assessment after diagnosis includes a number of blood tests, a fine needle aspiration biopsy of the lymph nodes, and a scan -- so it sounds like these things are being done *before* surgery. Is that part of the standard of care these days? Should I be concerned that I'm not having that done? It does seem like it would be a good idea to know if I have node involvement and mets sooner rather than waiting till mid-January, which is what the timeline looks like right now.

Right now, I'm being told that I will get my BRCA results back in late December, and probably have surgery in the second week of January. And I won't see my oncologist until after the surgery. Is that normal?
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 7:08am
Nina,
Sometimes with a larger tumor they do Chemo first to shrink the tumor, then surgery and radiation. During my surgery for a mastectomy is when they checked the sentinal node and 5 following nodes. Mine were clear.
I have to add that I am different (wouldn't ya know it). I'm older with no history of bc in my family and therefore the brca test wasn't suggested.
I think either Steve or Unklez is knowledgeable on that subject. Denise and Pam as well as others, I'm sure. They will be along shortly to answer your questions.
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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rena View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rena Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2009 at 2:57pm
Hi Nina. I know what you mean about your tumor seeming to come out of nowhere so quickly. I had the same experience. That was 23 years ago, and because my tumor was labeled aggressive and because I had extensive lymph node involvement (22), I opted for a bilateral. I only found out 18 years later that I'm BRCA2 positive. Looking back, if I'd known about the BRCA when I was diagnosed, I'm sure I would have made the same choice, and with even greater purpose. I think it takes some soul-searching and figuring out what makes you the most comfortable as you approach your life after cancer. Wishing you the best, Rena
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 13 2009 at 6:39pm
Hi Nina and welcome to our forum.
 
I have had TNBC twice.  The first time I had a lumpectomy.
 
Four years later it came back on the other side.  No mention was made either time to have BRCA testing even though my Onc was aware of my heavy family history of cancer.
 
But when I was diagnosed the second time, my daughter had been diagnosed the month before.
 
I had been researching for awhile, knew about BRCA testing so bells started to ring in my head.
 
So I went with a bilateral mastectomy before I tested for a mutation.  Afterwards I was informed I am positive for a BRCA 1 mutation as is both of my daughters.
 
Getting your mastectomy has to be your decision.  Research and learn your options.
 
Usually we are scanned before treatment to look for mets.  All of these things take time.  I had a Cat Scan and bone scan to look for mets.
This was all under my surgeon's directions.
 
After that I saw the Oncologist so that is normal.  Some surgeons are not up to date on their bc info because their focus is surgery.  Mine gave me wrong information.
 
 
Keep us updated on how you are doing.
Stage 2 2003
Stage 1 2007
BRCA 1+
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