10 year old w/ triple neg bc
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Topic: 10 year old w/ triple neg bc
Posted By: cjsocal
Subject: 10 year old w/ triple neg bc
Date Posted: Apr 16 2009 at 9:24am
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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!!! |
Replies:
Posted By: trip2
Date Posted: Apr 16 2009 at 10:10am
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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.  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: jody
Date Posted: Apr 16 2009 at 10:24am
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Hi cisocal,
Í 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 |
Posted By: kmartin
Date Posted: Apr 16 2009 at 4:37pm
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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 ------------- Round 1 - 2/8/08 IDC, Stage 2, Grade 3, TN (R) Lumpectomy, ax nd 3/11/08, 4/33 positive TAC x 4, AC x 1; RT x 33 genetic tests - |
Posted By: Nancy
Date Posted: Apr 17 2009 at 10:05am
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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 |
Posted By: Suzanne
Date Posted: Apr 17 2009 at 8:06pm
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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 |
Posted By: FIght Pink
Date Posted: Apr 17 2009 at 9:37pm
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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 http://www.fightpink.org - - |
Posted By: gramasuzi
Date Posted: Apr 18 2009 at 2:43am
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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 |
Posted By: SagePatientAdvocates
Date Posted: Apr 18 2009 at 1:47pm
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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? |
Posted By: Suzanne
Date Posted: Apr 18 2009 at 1:58pm
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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 |
Posted By: cg---
Date Posted: Apr 18 2009 at 2:35pm
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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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Posted By: trip2
Date Posted: Apr 18 2009 at 2:57pm
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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+ |
Posted By: SagePatientAdvocates
Date Posted: Apr 18 2009 at 5:06pm
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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 |
Posted By: Nancy
Date Posted: Apr 18 2009 at 5:48pm
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Steve,
Let me make those links hot so that the mother of this dear child can just click on them.
Nancy
http://www.cancer.ucla.edu/index.aspx?page=279&recordid=103 - http://www.cancer.ucla.edu/index.aspx?page=279&recordid=103
http://www.csmc.edu/5571.html - http://www.csmc.edu/5571.html http://www.csmc.edu/6047.html - http://www.csmc.edu/6047.html ------------- 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 |
Posted By: partner to one
Date Posted: Apr 18 2009 at 6:34pm
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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 |
Posted By: SagePatientAdvocates
Date Posted: Apr 19 2009 at 5:32am
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Thank you Nancy..
all the best, Steve |
Posted By: Bunnysmama
Date Posted: Apr 19 2009 at 2:37pm
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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+ |
Posted By: trip2
Date Posted: Apr 19 2009 at 4:56pm
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Here is her website
http://www.ourlittlesweetpea.com/ - http://www.ourlittlesweetpea.com/ ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Vicky
Date Posted: Apr 19 2009 at 7:25pm
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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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Posted By: HairSprayMom
Date Posted: Apr 21 2009 at 10:35am
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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! |
Posted By: Wendy2
Date Posted: Apr 21 2009 at 2:06pm
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She's beautiful and I am in complete shock. I have a 10 yr. old daughter too. This is a grea site and we will pray for Hannah. Whatever we can do, we will. I just can't believe this. I am so sorry for you and your daughter. Children can endure so much and I'm sure, as the rest of us on here, she will be strong and courageous. All my best.
Wendy ------------- dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches |
Posted By: asinglerose
Date Posted: Apr 21 2009 at 5:43pm
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Hi,
I am sorry about your daughter, I hope everything winds up ok.
I will pray for her!
If you need to talk, I am in Florida and you can pm me and I will give you my number.
I just got done with all my treatments on April 6th.
Good luck
Aleida ------------- Aleida dx 8/22/08, TNBC, IDC, Lumpectomy/10/6/08 right breast/ 8mm/ clear nodes/ clear margins/ Stage1/ TAXOTERE/CYTOXAN every 3 weeks X4/ 45 RADS! PRAYING FOR THE BEST!! |
Posted By: outnumbered
Date Posted: Apr 22 2009 at 9:18am
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Your family has been added to my prayer list. If there is anything you need, please do not hesitate to PM... ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: edavmo5
Date Posted: Apr 22 2009 at 11:48am
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First off, I am so sorry to hear about your daughter. Prior to this I had not heard of anyone under the age of 15.
I am a fellowship trained Surgical oncologist specializing in breast cancer. My mother has triple negative breast cancer. I carry the BRCA gene mutation...so I know the ins and outs of this disease quite well. 1. First make sure that the surgeon and pathologists agree that the pathology correlates with what was going on in your daughter's breast and that the pathology is correct. Strongly consider sending the pathology for a second opinion. If it is felt to correlate and she does have breast cancer, then... 2. She will likely be best served by a mastectomy. Take your daughter to a surgical oncologist specializing in breast cancer. They should also start with a sentinel node biopsy - this is a study to see if there is evidence of cancer cells in the lymph nodes. The surgeon and pathologists will determine whether or not an axillary dissection (removing the remainder of the lymph nodes in the armpit) is necessary based upon that test. 3. I would disagree with those recommending a pediatric oncologist. The reason is that they almost never see or deal with breast cancer. Seek out an academic / university cancer center with people specializing in breast cancer. These oncologists will have the most up to date data and infomation in caring for your daughter. 4. Given the very early age of diagnosis, she should be tested to see if she and ultimately anyone else in the family has the BRCA Gene (an abnormality in the chromosome that leads to a significant predispostion to development of breast,ovarian, and other cancers. Good luck. If you need additional help seeking out specialists in your area let me know where you live an I can help you find a good place. Dr E |
Posted By: Nancy
Date Posted: Apr 22 2009 at 2:02pm
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Dr E.
Thank you so much for making these suggestions/recommendations for this family. I was wrong suggesting a pediatric oncologist and you are precisely correct when recommending a surgical oncologist who specializes in breast cancer. Our grandson at age 3 needed a pediatric oncologist and Hannah does not.
I found this link for a girl in china who was dx with bc at the age of 4 with bc. We have a girl here in Altoona, PA dx with ovarian cancerat age 16, and I thought that was very young. This dx for Hannah is not one we thought we would ever read about.
We welcome any suggestions you may have as to TNBC, for anyone here on this site, and would also recommend that you tell your colleagues about the TNBC site. There is a wealth of knowledge/information on this site from women dx with this type of bc, and perhaps our site can become a learning tool for you and others. Many things that are not taught in a text book, or even discussed in a class room are written here.
Thank you for being such a caring individual and doctor.
Nancy
http://www.womenofchina.cn/Profiles/EverydayWomen/205236.jsp - http://www.womenofchina.cn/Profiles/EverydayWomen/205236.jsp ------------- 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 |
Posted By: trip2
Date Posted: Apr 23 2009 at 6:50am
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Dr. E thank you so much for your input into Hannah's diagnosis.
http://www.ourlittlesweetpea.com/?m=20090420 - http://www.ourlittlesweetpea.com/?m=20090420
As you can see in the above post by Hannah's father they have difficullt decisons to make and of course you understand what alot of this entails.
They reported that the pediatric facilities are not equipped for breast cancer but the facilities for adults with breast cancer are not equipped for children and yes they are recommending a mastectomy for this young woman.
I am so very sorry your mother has been diagnosed and I hope she is doing well? May I ask her treatment protocol?
Also sorry to hear about the brca1, myself and my daughters also carry this as do many in our forum.
Look forward to hearing from you again and my best wishes to your mother. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Sunris
Date Posted: May 08 2009 at 10:31am
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Your daughter needs nothing but your love, a great oncologist, faith in God, and TONS or encouragement to be normal & positive. I believe that even at her age, she can be positive and be one of the ones that people will look up to and say " I admire you" , or "you helped me see hope" ....ya know ?
Don't get me wrong here, I'm totally astonished at her DX @ age 10.... But I just truly feel that because she is a child we freak out worse ( naturally)...just as I too would do.... however, we have to strongly be positive for these children and encourage them to be their own advocates etc... I think it helps them from being scared / depressed, etc... Much luck & love to your family... |
Posted By: susied
Date Posted: May 08 2009 at 11:37am
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I am blown away by the awfull news for you and your daughter......I agree with the suggestions to run don't walk to a peds ocnologist....
Please know you are all in my prayers and in my heart ,
Blessings,
Carole
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Posted By: Shelley
Date Posted: May 08 2009 at 12:37pm
| I can't claim to be an expert on BC but I am pretty well versed on kids. I am a teacher and a school counselor. I also had BC this year. The kids were great and I was alway up front to what was happening with me. A couple things to tell you about letting your daughter know... She is definitely aware that something is going on. Kids are an expert at reading their parent's emotions and sensing that something is happening around them. When telling kids bad or overwhelming news, they say to be honest and upfront with info. You do not have to give tons of details, just the basics. Have you contacted St. Judes?? They are a wealth of information about Children's Cancers. |
Posted By: susied
Date Posted: May 08 2009 at 2:16pm
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Oh, St Jude's....what a good idea.....even a phone call might point you in the proper direction if they don't treat BC in kids........please try that
susied
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Posted By: trip2
Date Posted: May 08 2009 at 2:44pm
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I have been following Hannah's blog, the link I posted above everyday.
She had her mastectomy yesterday and was doing well. They moved it up a day so that she could be home for Mothers Day.
She has the above blog and she also has a group in FB if you guys would like to check in once in awhile.
She sounds like a real trooper.
PS She has been diagnosed with Invasive Secretory ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Bunnysmama
Date Posted: Jun 03 2009 at 9:02am
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I just came across this article on msnbc.com, and I'm assuming this must be the same story. Quite honestly, I'm shocked at how short the story is and, even more importantly, how it basically brushes off everything she's going through and says she's trying to find the bright side. Is that all they could find to say?!?
http://www.msnbc.msn.com/id/31085830/ - http://www.msnbc.msn.com/id/31085830/
Here's the text of the article in case the link doesn't work:
10-year-old girl battles rare breast cancerCalifornia girl coping with side effects of chemotherapy and mastectomyLA MIRADA, Calif. - A 10-year-old Southern California girl with an extremely rare, adult form of breast cancer says she's sad that her hair is gone but she's trying to remain brave. Hannah Powell-Auslam, of La Mirada was interviewed Wednesday on ABC's "Good Morning, America." She was shown getting her hair shaved off rather than waiting for chemotherapy to make it fall out. Her family also got buzz cuts. The fifth-grader complained of itching in April. Her mother discovered a lump, and that led to a diagnosis of breast cancer. Hannah has had a mastectomy. Hannah says she tries to find a bright side to things as she battles her illness and the side effects of chemotherapy. She says she's still a kid even though she's fighting an adult disease. ------------- Dx 11/06 @ age 37 IDC Stage I, Grade 3 BRCA2+ |
Posted By: trip2
Date Posted: Jun 03 2009 at 9:11am
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I agree.
Here is Hannah's blog if some of you would like to check up on her,
http://www.ourlittlesweetpea.com/ - http://www.ourlittlesweetpea.com/
She has been recovering from her mastectomy pretty well. Really quite the trooper and such a precious young lady. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Wendy2
Date Posted: Jun 03 2009 at 12:12pm
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saw her on good morning america today. wow - what a child. can't imagine with how i feel right now - God bless her and may she recover completely!
wendy ------------- dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches |