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10 year old w/ triple neg bc

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cjsocal View Drop Down
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    Posted: Apr 16 2009 at 9:24am
My 10 (yes 10) year old daughter was just diagnosed with triple negative IDC grade II. Forgive my ignorance, we dont quite understand the medical lingo. This is the diagnosis from the patho report that we recieved yesterday:
 
Infiltrating ductal carcinoma with focal solid papillary growth pattern and secretory feautures, grade II (moderately differentiated). The tumor extends to the inked surgical margins over a broad front.
Approximately 2 cm in aggregate dimension portions of benign prepubertal mammary ductal parenchyma. No ductal carcinoma in situ component identified. Changes highly suspicious for large vessel invasion by tumor but no angiolymphatic space permeation by tumor identified.
AJCC stage grouping: T2, NX, MX; stage IIA
This was also listed in the microscopic description:
This material was submitted for breast prognostic studies with the following results:
Estrogen receptor negative, progesterone receptor negative, Her2/neu zero (not expressed) and Ki67 rate of 3% in most of the fields examined.
 
We have not gone to an oncologist yet (probably today or tomorrow). We have also not told our daughter. If someone has ever heard of such a young person being diagnosed with bc, please let us know.

4/18/09
Thank you all for your help and support! We have set up a blog for our daughter (some of you have already found it). It is www.ourlittlesweetpea.com. We will be posting updates regularly to keep everybody in the loop. Again, Thank you all so very much for everything!!!


Edited by cjsocal - Apr 18 2009 at 7:24pm
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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: Apr 16 2009 at 10:10am
Hello, my goodness I am so very sorry to hear about your daughter.  I've never of one so young being diagnosed with this disease, bless her heart!
 
A ki67 rate of 3% is not bad.  Many of us have much higher numbers so that is a good thing.  Get copies of all bloodwork, pathologies, surgical reports, any scans, office consultation if you life, it is important to begin your own file and to read over these papers closely when you receive them.
 
Please let us know how it goes with the Oncologist.  We have had a couple of members in their twenties and have heard of one 18.
 
What can we do?  Is there any way we can help?  I understand you must be very upset.
I know how it feels to have a daughter diagnosed although of course she was not this young.
 
So she has had a lumpectomy? 
 
Of course this information is confusing for you, we understand that, you just must be overwhelmed right now.  Please right us and let us know how you both are doing.
If they decide to do Chemotherapy, TNBC responds very well to chemo so remember that.
 
You and your daughter are in my prayers.Heart 


Edited by trip2 - Apr 16 2009 at 12:47pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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jody View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jody Quote  Post ReplyReply Direct Link To This Post Posted: Apr 16 2009 at 10:24am
Hi cisocal,
 
   dont even know where to begin to say how sorry I am to read your post. The truth is that I have never heard of anyone younger then their mid twenties with this diagnosis.  I am the mother of three and can only imagen how scared you must be. 
 
   You have however come to the right place as the women on this forum have all been through this awful disease either themselves or with one of their loved ones.  Although you will be reading alot of information about triple negative much of it negative, keep in mind that MANY women survive this disease.  I am not a doctor but i am certain that your daughter has youth on her side.  Today happens to be my one year anniversary from my diagnosis and while it has been a rather rough year, <i am extremely optomistic about the future.  Children are very resiliant and I am certain she will do very well! 
 
   You are about to hear from many experienced knowledgable people who care very much about you and your daughter. I am also from southern California and perhaps we can speak when I get home from the vacation I am on right now. (I am in Austria and do not understand how to use this keyboard so pardon my mistakes).  I will pm you when i get home. What city do you live in?? I live in La Verne.
 
I WISH YOU AND YOUR DAUGHTER THE BEST, since I AM LOCAL; PERHAPS WHEN THE TIME IS RIGHT i can come visit her and answer any questions she may have about her treatments.
 
Take Care, JODY
diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08       La Verne, California
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kmartin Quote  Post ReplyReply Direct Link To This Post Posted: Apr 16 2009 at 4:37pm
I am sorry to hear about your worries with your daughter...I would run to the nearest university-based hospital with a large pediatric oncology department. You need to see someone who has a special interest in your daughter...until you find that, do not rest.
 
Good luck,
 
Kathy
Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2009 at 10:05am
Dear cjsocal,
 
I cannot even begin to imagine how you are dealing with this diagnosis for your dear daughter. I know what my husband and I felt when our Lori was diagnosed at age 45.
 
I too would recommend going to a pediatric oncologist and getting more than one opinion. Our grandson was diagnosed with leukemia at age 3, but that has been a childhood cancer for at least 50 years. He is now 21.
 
Please know that we will be here for you to search for anything for which you need information. You will be in a complete daze/fog for a very long time, and al the women here know what your daughter will be facing.
 
My heart goes out to you and anytime you feel the need to talk, cry, vent...whatever, we are here. The women on this site are absolutely amazing.
 
I am going to send you a private message with my email so that I can send you directions to access all the many resources we have here on the site. I do this for all the members, and I know they will help your daughter.
 
Much love sent your way, and many many hugs,
Nancy 
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suzanne Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2009 at 8:06pm
We are so, so sorry you and your daughter are having to go through this.
 
I never have heard of anyone so young having any type of breast cancer.  You might try asking some of the breast cancer organizations if they can locate another young person who has gone through treatment who might be willing to talk to your daughter.  Sometimes it helps to talk to someone who has "been there". 
 
If there is anything we can do to help out, please don't hesitate to ask.  It's great that you found the TNBC site so quickly.  Word must be getting out.
 
Suzanne
 
1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07
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Post Options Post Options   Thanks (0) Thanks(0)   Quote FIght Pink Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2009 at 9:37pm
I know that there is so much going on, but you should go to this site....http://www.candlelighters.org.

One thing I must mention is that if she is to have a sentinel node biopsy..it is extremely painful, make sure they can either sedate her or give her a local. They usually don't do that, but it was a very painful exam..given before my mastectomy. Read about it here..http://www.cancernews.com/data/Article/202.asp

It is very important that you do read up on it. It is the shots of the radioactive dye that really hurts..I think the radioactive material is what is so painful, not the actual injection. Of all the things I had done, this was something I will never forget. This test is much better then a full Axillary Lymph Node Dissection. It is much less invasive, and is a relatively new procedure but well proven. What it does is detect the sentinel node or first node that the lymph system would drain to. Experience has shown us that the lymph ducts of the breast usually drain to one lymph node first, before draining through the rest of the lymph nodes underneath the arm. That first lymph node is called the sentinel lymph node. That is the lymph node that helps sound the warning that the cancer has spread.

We are still researching for you! Our blessings..

Fight Pink Alliance

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Post Options Post Options   Thanks (0) Thanks(0)   Quote gramasuzi Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2009 at 2:43am

I can't imagine your fear for your daughter.  The waiting in between appointments and tests is the worst part of disease.  Know that I am praying for your daughter and your worried family during this difficult time and I will be watching for updates. 

Suzi
dx Stage II-B 5/07 sent node+
mast. dose dense A/C, Taxol
recurrence 8/08, 2 nodes+
7 wks tomotheraphy &
6wks Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2009 at 1:47pm
Dear cjsocal,

I am simply stunned by this news...and no I have not heard of this before..

I agree with the posts above about the importance of getting a second opinion from a pediatric oncologist and I would also think a visit with a Certified Genetic Counselor might be helpful..

my heart and prayers are with you and your daughter..

in your corner,

Steve

p.s. I live in Los Angeles and my oncologist may have a recommendation for you. I am a newbie here so I am not sure that we can do that on the site...does anyone know the rules?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suzanne Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2009 at 1:58pm
Steve, we don't have many rules here.  The only thing I've seen that was frowned upon was someone using this site to try to advertise for their own personal money-making venture. 
 
You are welcome to make a recommendation.  I've seen others post suggestions on oncologists to see in various parts of the country.  If you don't want to post a recommendation, however, you could send a private message. 
 
Suzanne
1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2009 at 2:35pm

Steve,

It is the caring enough to share information and support each other that will help us beat this TNBC. This forum has been such a blessing for all of us.
 
Thank you for being here and contributing.
 
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 18 2009 at 2:57pm
Steve we would love for you to share information.  Maybe it would help several people.
 
Best Wishes
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2009 at 5:06pm
Dear cjsocal,

my oncologist is Dr. John Glaspy at UCLA. I think he is very knowledgeable about breast cancer.

http://www.cancer.ucla.edu/index.aspx?page=279&recordid=103

if you would like me to try and help please send me a private post...

he may know a good pediatric oncologist...the other person I would ask is
Dr. Beth Karlan at Cedars-Sinai in Los Angeles....she is a gyn/oncologist and she is very smart as well and may have a referral for you as well...

http://www.csmc.edu/5571.html

I am not a medical professional and will not give you a medical opinion but would genuinely like to help you if I can.

There is a Certified Genetic Counselor named Dr. Ora Karp Gordon. I am having lunch with her next Thursday and would be happy to ask her for a referral as well...

http://www.csmc.edu/6047.html

Please dig deep and find the inner strength you will need....I have just arrived here but after spending several hours reading I believe this is a very special resource and I am sure that many, many of us will try to do our best to be supportive..

all the best,

Steve
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2009 at 5:48pm
Steve,
 
Let me make those links hot so that the mother of this dear child can just click on them.
Nancy
 
 
 
 
 
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote partner to one Quote  Post ReplyReply Direct Link To This Post Posted: Apr 18 2009 at 6:34pm
I have only heard of one case where a ten year old girl has had breast cancer and I believe she was in China. I am sorry for you and wish the very best for your daughter.

Please keep us updated on what her oncologist says. You have a lot of people here wishing you the very best.

Dave
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2009 at 5:32am
Thank you Nancy..

all the best,

Steve
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Bunnysmama Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2009 at 2:37pm
This new is stunning, and I'm so sorry that you're facing this with your daughter.  I can't begin to imagine how difficult this must be.  I would definitely recommend genetic counseling and testing, if that's even possible for someone so young.  There are so many of us here to support you and help along the way...I hope you will find that this is a place you can come for answers, support and even a place to voice your feelings when you need someone to listen.  You are in my thoughts and prayers.
Dx 11/06 @ age 37
IDC
Stage I, Grade 3
BRCA2+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2009 at 4:56pm
Here is her website
 
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Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Vicky Quote  Post ReplyReply Direct Link To This Post Posted: Apr 19 2009 at 7:25pm
We are all praying for your family and your daughter. This site is a very good resource and support system. Good luck with your upcoming appointments. The best advice I've received so far with regard to appointments is to write everything down before you go in to see your oncologist and ask all the questions on your list (even if you think they are silly). Good luck this week and stay as positive as you can.   Warmest wishes, Vicky


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Post Options Post Options   Thanks (0) Thanks(0)   Quote HairSprayMom Quote  Post ReplyReply Direct Link To This Post Posted: Apr 21 2009 at 10:35am
Jeremy and Carrie,

Just sending LOVE and HOPE!!! Hope all went well at the Onc. let us all know what treatment plan is scheduled for Hannah. Your family has been in my thoughts and prayers for days, ever since I read your post! Keep your head up and like all the other women say...stay positive, it really helps!

Sending Love!!!!!!

Regina

P.S. Sent you a PM and an e-mail.
39 yr old. DX Metaplastic Carcenoma/Triple Negative IIIb 9-26-07, bilat mod rad MX 10-1-07, 2.7cm in Chest Wall. Dense dose Chemo 11/07-03/08 AC/Tax. NED 4-09 YEA! Deconstructed 12-13-10 & Happy!
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