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I'm new- the daughter of newly dx mom

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aprilgator View Drop Down
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    Posted: Aug 19 2009 at 5:22am
Hi everyone-
I'm so glad to have found this site. My 63-year-old mom, who has been my very, very best friend my whole life, was initially dx 07/13/09 with BC from mammography in Right breast.  Since then, U/S, MRI, & biopsy have confirmed - two tumors. One in situ & one invasive. Neither attached to chest wall. No evidence of anything in left breast. Just yesterday (08/18/09) we went to breast surgeon for more info.  Abdomen CT-Scan and chest X-ray, with blood work, shows no markers, no evidence of spread. But Dr. just told us yesterday that it's triple negative. So, I being the researcher, am on-line immediately and found all of you.  I'm her 42-y/o daughter and live three miles from her & I am trying as hard as I can to be on top of all of this right along with her every minute.  We won't know until after the unilateral mastectomy (schedule for 08/27/09) anything about Sentinel nodes, lymph nodes, or anything else.....The plan is then for her to transfer from her breast surgeon to an oncologist. We have not yet met with an oncologist. (is that normal?)
 
I'm absolutely terrified for my mom. No hx of BC in this whole family. The women have all lived into their 90s. My mom is extremely healthy and active and never had anything wrong with her in her entire life before now. She has had yearly mammograms and just this time, waited a year and a half instead. The previous one was totally clean. We are in shock and I am seeking support from you all. I have no idea where to begin, and my mom is ready to fight, but we don't know how to approach it. I would like to know how to find the very best oncologist we can possibly find who is on top of all this cutting edge TNBC research (we live in Central Florida but she's willing and able to travel). Is there a chance of the dx of TNBC being a false positive (or negative, so to speak...).  What about selecting clinical trials? Who should she talk to about them and how soon does she need to do it? Do we need to do BRCA testing?
 
The information out there about TNBC is so scary, but it seems there is so much research pouring into this area that we can maybe really benefit from as much information as possible.  So, I'm turing to all of you with your experience and knowledge for any help you can provide.  Any and all helpful information or suggestions is very, very welcome and wanted. I already printed out the "Questions for Surgeon, Med & Rad Oncologist." Thank you for providing that. Thank you for anything you can tell me, and any hope and inspirational stories you can provide. Thank you, thank you!
 
-April Pink%20Ribbon
April
Mother dx w/TNBC 07/13/09
Unilateral mastectomy scheduled for 08/27/09
Chemo scheduled for after
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thenewme Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2009 at 6:03am
Hi April,
So sorry you're in this situation, but welcome anyway!  Your mom is lucky to have you!!  It can be so, soooo overwhelming but the best advice is to just take it one step at a time.  I didn't see an oncologist either until after my surgery.  My tumor was 5 cm and very aggressive so the first priority was to get it out.  You'll find that BC treatment is more an art than a science, and different docs have different opinions.  I had no family history either, and no risk factors, and it came literally out of nowhere - just overnight, so I sure do understand your shock!  And I'm only 39.  You can check for trials on www.clinicaltrials.gov, and also ask your doctors - hopefully they keep up to date on what's out there. 

Best of luck and let us know how your mom is doing! 
DX: IDC/TNBC 11/08 5-cm Stage IIb Grade 3. Age 39. Double Mast 12/08 (prophy right) with tissue expanders . ACx4-Tx3. Suspicious IM node. 25 Rads. BRCA NEG.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2009 at 6:38am
Dear April,
 
Thenewme had some sound advice for you to relay to your mom, and you are proceeding just as I did when my daughter Lori was dx. I was the one seeking the information, but even 2 years ago, there was not much on TNBC.
 
Every oncologist will have their own protocol as to chemo regimens, and there is much discussion as to which is the right one for TNBC. It appears that they treat TNBC with the same chemo regimens as the women with BC+ recieve. I have this aticle which Pam posted a few days ago, and it contains statements from Dr. Eric Winer that not all bc diganosis require chemo. No where in the article does it speak of TNBC, but Dr. Winer is considered to be an expert on TNBC.
 
 
Just as thenewme, Lori's tumor was very large, (thought to be 5cm, but first surgery was screwed up, so they cannot be sure),and after an MRI, there was another tumor found behind the nipple, so she had a mastectomy before chemo. Many are having neoadjuvant chemo...chemo before surgery, to shrink the tumor, but Lori just wanted it out, and neoadjuvant chemo was not an option which she was offered.
 
Tell your mom to get second and third opinions before making any decisions. I will send you a private message with my email address so that I can send you information for retrieving all the resources we have here on the site.
 
Also, please check the TNBC News, Resources & tips forum, as Pam posts many articles there all the time, which I know will be of help. Just click right on those words and then scroll down the page to forum topics, and there are about 42 pages to look through.
 
Just keep posting with any and all questions, and these amazing women will help you help your mom, just as they helped me help Lori.
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 Beth Anne Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2009 at 6:54am
Hi April,

I too am sorry to hear about your mom, but I just have to chime in here and say get another opinion.... She may want to do chemo first to make sure her tumor will respond to the chemo they want to but her on. TNBC does not always respond to the same chemo. Once the cancer is gone there is no way to tell if the chemo they use will work on her.

I know that when you find out that you have cancer you just want to get it out of your body and it is counter intuitive to leave it in, but it was the only thing that would give me peace of mind that the hell I went through with the chemo was for a reason...

I would get an appointment before any type of surgery with an oncologist just to see what they have to say.

Sending hugs to you and your mom, she is lucky to have you with her!

Beth Anne


Dx 5/07 DCIS Stage3 gr9 A/C x 6, Abrax x 16 Bi-Mass 2/08
Navelbine x 12, finished radiation end of July 08. DX Brain Met's 2/09StageIV
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2009 at 8:58am
Dear April,

welcome to TNBCF…I think it is a wonderful resource. I am truly sorry you are going through all the stress with your mom. My mother was my best, best friend as well...

I doubt a Certified Genetic Counselor(CGC) would advise your mother to test for the BRCA mutation, absent a family history of breast/ovarian cancer BUT have you checked your maternal grandfather's side of the family? Often the BRCA mutation can be hidden on the dad's side. I have the mutation, no cancer to date (I hope) and nevertheless passed the mutation on to my daughter.
Even prostate cancer can be an indication your grandfather might have been a carrier but often men die of other illnesses and the information is not known. Did he have any female relatives that had breast/ovarian cancer?

Normally testing is recommended for women<50 with TNBC BUT I would check with a CGC and make sure..

I agree with Beth Anne and I would immediately try to get an opinion from a medical oncologist who is an expert in TNBC BEFORE your mother has surgery.

some docs across the country who I know are experts…

Dr. Eric Winer..Dana Farber Boston…I do not believe he is taking on any new clients but I am sure others in his dept. are. Dr. Winer is on TNBCF’s Scientific Advisory Board..Nancy mentioned him above..

Dr. Lisa Carey..Univ. North Carolina…I met her after her ASCO presentation on TNBC. She impresses me as being a very knowledgeable physician and also, a compassionate woman.
Don’t know if she sees patients but I would try. I believe Dr. Carey is on the board as well..

Here is some info on her-

Dr. Lisa Carey inducted into Johns Hopkins Society of Scholars
Dr. Lisa Carey, associate professor of medicine in the UNC School of Medicine and medical director of the UNC Breast Center, has been inducted into the Johns Hopkins University Society of Scholars.
Dr. Lisa Carey inducted into Johns Hopkins Society of Scholars

Tuesday, June 03, 2008

Dr. Lisa Carey, associate professor of medicine in the UNC School of Medicine and medical director of the UNC Breast Center, has been inducted into the Johns Hopkins University Society of Scholars.

Carey, one of 15 new inductees, was honored at a recent ceremony at the Johns Hopkins School of Medicine. She was recognized for her work with UNC colleagues to identify and tailor treatment for molecular subtypes of breast cancer.

The 521 member society is designed to honor individuals who did their training (in fellowships, postdoctoral training and early faculty positions) at Johns Hopkins and subsequently gained marked distinction elsewhere in their fields of physical, biological, medical, social or engineering sciences or in the humanities.

Carey, a member of the UNC Lineberger Comprehensive Cancer Center, is a medical oncologist dedicated to clinical and translational breast cancer research, which requires a multidisciplinary approach to cancer care to include scientists as well as clinicians.

Carey has authored or co-authored more than 70 manuscripts and book chapters. Currently, she is the principal investigator of a large-scale, multi-institution trial to test new treatments for a basal subtype of breast cancer, and is the principal investigator of a national cooperative group trial examining targeted therapy for another subtype of breast cancer.

Carey earned her medical degree from Johns Hopkins, was a resident in internal medicine and then a fellow in oncology from 1990 to 1997. She earned an advanced degree in clinical research at the Johns Hopkins School of Public Health in 1998, and joined the UNC faculty in 1998.

Also, I would try NCCN facilities…I think two that might be fairly close are UAB Birmingham and Moffitt in Tampa..

If you totally strike out I would be happy to try and get you an appointment with my oncologist, Dr. John Glaspy at UCLA.

please send me a PM if you would like me to help..

Ronald Reagan
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John Glaspy, MD
     
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.............

finally, if you do get another opinion please ask the oncologist about the possible advantages of bilateral mastectomies as your mom's first surgeries...there is another thread on this forum about a second mastectomy. I have seen that many times here..

I am not a medical professional and not giving you any surgical advice but I think the question is worth asking...as your mom gets older, if G-d forbid she has cancer again in her contralateral breast it may not be easy to treat.

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aprilgator Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2009 at 11:33am
Thank you to everyone for the greetings and fast replies and all the information. This is all a lot to digest, but I am now quickly at work here looking for local oncologists (we are in Orlando) so we can get a second opinion on chemo before the surgery which is scheduled in one week. I'm sharing all this and working on it with my mom. She is trying to get into "battle-mode," but she's shell-shocked and limited in how much she is absorbing each day. So I'm trying to pick up the research end of it. I don't want to overwhelm her. Thanks again and I will keep reading, and appreciate the info so far!
April  
April
Mother dx w/TNBC 07/13/09
Unilateral mastectomy scheduled for 08/27/09
Chemo scheduled for after
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2009 at 3:23pm
Dear Daughter,
 
Second opinion....and neoadjuvant chemotherapy (chemotherapy before surgery to see if the chemotherapy works) if it doesn't then change the chemotherapy and then have surgery.
 
Absolutely gather as much information you can to make an informed decision.
 
I believe that neoadjuvant chemotherapy and genetic testing should be part of standard protocol for breast cancer for all women diagnosed.
 
Every oncologist you see - ask what chemotherapy they would recommend and WHY... Ask them to show you where they got the information to base their opinion...
 
Let me tell you as one who was denied the option of chemotherapy before my mastectomy, the 'cross your finger and hope the chemotherapy works approach to treatment" is hard to live with post treatment.
 
Love,
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MaryinSarasota Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2009 at 6:21am
April,

You will find this a very useful place during your mother's treatment as well. We all need to read, vent our fears or just know there is someone there who "gets it" from time to time.

Welcome from Sarasota,
Mary
53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tedaii Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2009 at 4:49pm
Hi April,
I'm new too!  My situation is similar to yours.  It's my mom, we are close.  She's 66 (I'm 38) and found a lump while putting on her swim suit for water aerobics one day.  It was the size of her thumb when she found it, and her mammogram 6 months prior was CLEAN.  So I can totally relate to the whole thing coming out of the blue.  My mom's left breast was affected, right one was fine but with her other medical problems the medical onc recommended having both breasts removed, not just the one.  I was so glad we went and met an onc before her surgery! That one recommendation made it worth our while.  Right now she's recovering from surgery....

It is scary!  This board has been a wonderful resource to me. You and your mom are in my thoughts as you embark on this journey.
Teresa,
DM Patricia dx 6/09 IL TNBC, bilat mastecomy 8/09,nodes +, Stage IIIc. PET scan neg! Chemo AC dose dense for 4 cycles, on 3rd cycle
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aprilgator Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2009 at 5:53am
Thanks to everyone who has been replying.
My mom has joined the list now too - she is under the name "dflagler" and we're reading each other's and everyone else's posts- whatever we can to find out how to best approach this. She got all her records and is going to speak to her breat surgeon today to ask all about the questions that you all have raised. I still need to ask about BRCA testing.Then she may talk with the onc if she can manage it before next week. It's all very tiring. It's hard to stay mentally energized to keep researching and fighting and planning - it's emotionally exhausting and sometimes she (and I too) just wants to take a break and think about ANYTHING else but cancer. Teresa, I wish a smooth recovery and the best of success and luck for your mom - we're very close to all the same dates and we'll have to keep each other posted. It's terrifying but I'm glad you all are here.......
Thanks again,
-April
April
Mother dx w/TNBC 07/13/09
Unilateral mastectomy scheduled for 08/27/09
Chemo scheduled for after
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thenewme Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2009 at 6:12am
It is exhausting and frustrating, but your mom is so lucky to have you to accompany her on this journey!  Once you have a plan in place it actually gets a little easier I think.  When you know what you're dealing with and you can see the appointments on your calendar to SEE that you're moving forward, it helps a lot. 

I agree that second opinions can be a great idea, but the thought of any delay scares me. In my case, my tumor grew SOOO fast.  My ki-67 was 100%, which means it was extremely aggressive.  I got a terrible sinus infection between my diagnosis and surgery, and because of that it was 5 weeks until surgery, and I could literally feel my tumor growing bigger.  Because of that delay, my tumor was 5cm at surgery, and as you know the tumor size correlates inversely with the prognosis.  At diagnosis, my tumor was the size of a quarter, and 5 weeks later it was 5 cm, so any more delay for me would have probably pushed me into a higher stage of cancer.  I don't say this to scare you, but this triple negative thing is scary-aggressive and I'm so glad you're moving quickly!  Best of luck and please let us know how you and your mom are doing! 

PS - Have YOU had a mammogram lately??
DX: IDC/TNBC 11/08 5-cm Stage IIb Grade 3. Age 39. Double Mast 12/08 (prophy right) with tissue expanders . ACx4-Tx3. Suspicious IM node. 25 Rads. BRCA NEG.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aprilgator Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2009 at 7:54am
Wow - that sounds like a scary time for you! I hope it never ever comes back! There is so much to learn. I don't even know what a ki-67 is. I have had yearly mammograms (last one was 12/08) for the last 3 years, plus one baseline 7 years ago. I've been doing self-exams weekly since my mom found out, and I will have my next mammogram as soon as I can schedule it for insurance to cover (once yearly).  BTW, my insurance doesn't cover for BCRA testing - I already called and asked them if they would. What do people do?
Thanks Approve
April
Mother dx w/TNBC 07/13/09
Unilateral mastectomy scheduled for 08/27/09
Chemo scheduled for after
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KCinFL Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 2009 at 6:20am
Hi April, if you don't want to travel too far, Moffitt is in Tampa and they are ranked the 16th cancer center in the U.S and the top center in FL.  They have experience with triple neg and do a lot of work with FORCE as well.  Dr. Charles Cox (a breast surgeon) at USF in Tampa is a name that repeatedly came up while I was researching my options (BRCA mutation but no dx of breast cancer).  He established the breast program at Moffitt.  Also, my insurance also said no to the genetic testing, but Moffitt managed to get it appproved as medically necessary.  
Inherited BRCA1 mutation 5385INSC from my mom. Sister Linda dx with TNBC 5/23/08. Mom is a 22 year breast cancer survivor.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote xmdavis Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 2009 at 9:12am
Hi April,
 
So sorry to hear about your mom.  My mom is a very similar story to your moms'.
 
We have been through this for two years now and it has been an up and down.  I have extremely strong focused parents and my mom and I are very close.
 
If I had to do it again..I would have had several more opinions up front.  You are in a great place right now to get as informed as you can and really make some good choices right up front.  I'm not saying at this point that we made mistakes, it's just that we were not as informed about the type of cancer my mom has becuase there is very little info out there.  Mom has Metaplastic, Squamous cell carcinoma, triple negative with mets to the lung and her original tumor was 7cm.  It literrally popped out 8 months post mammogram.  We have been through a lot of treatment and my mom has tolerated chemo extremely well.  I do attribute this fact to her extremely healthy lifestyle and the fact that she has always been in excellent shape...she is 70.
 
Your mom will go through a lot but so will you.  I can understand the helplessness that you feel being a daughter.  You will have your opnions and sometimes you will feel like you are not being heard by other people in your family.  I am definitely having to learn to take things day by day and live in the moment more than I ever have. 
 
 
Marietta


Edited by xmdavis - Aug 22 2009 at 11:47am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote xmdavis Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 2009 at 7:09pm
You know...I have not seen this issue raised and maybe we should start another forum for daughters...
 
What should daughters do?  While we are going through this with our mom's we all know in the back of our minds that this could be us. 
 
Are there any specialists and testing we should be having now?  I have a 5 year old niece, is this going to change her life? 
 
I'm getting yearly mammograms but maybe it's time to start consulting specialists and thinking about genetic testing.  It's been tough becuase I'm taking care of my mom but I think it's weighing on me more than I think.
 
Advice on this would be great.
 
Marietta
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 22 2009 at 9:20pm
Dear April,

If you contact Myriad Genetics and ask for one of their insurance specialists I believe you may find that yourinsurance company will pay. You may need a letter from an oncologist etc. but often insurance companies will reverse themselves..

Obviously, it is in Myriad's economic interest to have you test and I understand, from previous stories I have read that they can be quite helpful so please don't give up..

I second the advice about Moffitt in FL. I would recommend that you try to see Dr. Rebecca Sutphen. She announced publicly at the last FORCE conference in Orlando that she, herself, was diagnosed with breast cancer and she is very much an advocate for the BRCA community. I believe she will try to help if she can..

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tedaii Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2009 at 6:17pm
Hey April,
I just thought of something that a person I work with told me (she's a bc survivor) she said it's possible to do the testing at time of biopsy to see what chemo drugs will be effective against it the cancer.  I have to read over my mom's path report to see what it says, she will see the onc on Sept 8th (same day the kids go back to school!) I'm sure the onc will explain it to us further.
Teresa

Teresa,
DM Patricia dx 6/09 IL TNBC, bilat mastecomy 8/09,nodes +, Stage IIIc. PET scan neg! Chemo AC dose dense for 4 cycles, on 3rd cycle
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aprilgator Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2009 at 3:45am
Thanks everyone! Teresa, I'll ask my mom's Dr. tomorrow about that - she's scheduled for her unilateral matectomy tomorrow. She's scared, but mostly of the surgery stuff and pain. Good luck to your mom on the 8th when you see the oncologist! And Steve - I will definitely look into Moffitt. I used to live down the street from them in Tampa, and had a friend who worked there as a student for a year, so I know it's a great place and very impressive. Thanks again to everyone and I wish the best to all of you too.
April Approve
April
Mother dx w/TNBC 07/13/09
Unilateral mastectomy scheduled for 08/27/09
Chemo scheduled for after
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