Advice..20 year old with stage 4 breast cancer

[micheleu]

Hi all, my friends' niece was just dx with stage 4 breast cancer to the spine. I am going with the family next wed. to the onc. to help them ask questions. I'm not sure what type yet, or anything, but wow, does anyone have any ideas on clinical trials? She had back pain and they found spots from the xray, ultimitly finding a 6 cm tumor in her breast. She is 1/2 caucasion 1/2 african american. Now they think her biological fathers mother died early. I'm thinking of breast cancer now. I will post next week with more info so we can help this young gal. she is my son's age. Scary as hell as isn't it? thanks everyone

[Bill]

Wow, Michele, it is scary, and brings tears to my eyes. But all things happen for a reason, ultimately good, whether we understand or agree with it. Thank God that you are in the place that you are, here and now, to help this girl and her family, in whatever way that you can. Please let us know how we can help, too. You all will be in my prayers. In this situation, the family will be looking to you, as much as the doctors, for answers and strength. Give them answers, and strength, and whenever you, Michele, need to replenish your strength, please come here, and we will help however we can, with answers, hugs, prayers, a good cry now and then, we will be here for you and your friends. Love, Bill

[Soccermom]

BRCA testing may be in order Michelle...due to her age and her family history. IF she is BRCA + this would play a huge part in her treatment protocol, the options would be different.So sorry to hear this . Is she in Nebraska also? Let me know if you need some contacts in the genetics world. SOCCERMOM4FORCE at yahoo...just put her2 friend in the header
Also, www.facingourrisk.org (http://www.facingourrisk.org) is a great source on more information on the testing/counseling process and for finding specialists.
Marcia

[WomanofSteel]

I agree with Marcia, it definitely is worth looking into especially coz she is so young. Meanwhile I will keep her in my prayers.

[Soccermom]

http://medschool.creighton.edu/medicine/centers/hcc/hct/breast/index.php

This might be helpful Michelle,this is the contact info for genetic counselors within 300 miles of Omaha
M

"
Mary Jarvis Ahrens (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0008)
University of Minnesota Medica... (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0008) Edina, MN
(w)
(612) 625-2134
(f)
(612) 624-6645
(e)
MAhrens2@fairview.org Shari Baldinger (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0061)
Abbott-Northwestern Hospital-3... (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0061) Minneapolis, MN
(w)
(612) 863-3536
(f)
(612) 863-5697
(e)
shari.baldinger@allina.com Teresa M. Castellano (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0277)
Lincoln, NE
(w)
402-219-5265
(e)
tcastellano@stez.org Hope Chipman, MS (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=4440)
University of Nebraska Medical... (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=4440) Omaha, NE
(w)
402-559-2987
(f)
(402) 559-7662
(e)
hchipman@unmc.edu Debra L. Collins (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0334)
University of Kansas Medical C... (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0334) Kansas City, KS
(w)
(913) 588-6022
(f)
(913) 588-4060
(e)
dcollins@kumc.edu Molly Dixon (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=6145)
Saint Luke's Cancer Institute (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=6145) Kansas City, MO
(w)
(816) 932-2079
(f)
(816) 932-5394
(e)
mbdixon@saint-lukes.org Katherine Nelson Fuhrmann (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=1258)
Regions Hospital (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=1258) St Paul, MN
(w)
(651) 254-3472
(f)
(651)254-3470
(e)
katherine.a.fuhrmann@healthpartners.com Megan Hanson (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=5677)
Ridgeview Medical Center (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=5677) Waconia, MN
(w)
(952) 442-2191 x6307
(f)
(952) 442-6542
(e)
megan.hanson@ridgeviewmedical.org Cindy J.C. Johnson (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0847)
Perinatal Center of Iowa (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0847) Des Moines, IA
(w)
(515) 643-6888
(f)
(515) 643-6899
(e)
johncjc@hotmail.com Stephanie B. Kramer (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0946)
St Luke's Health System (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0946) Kansas City, MO
(w)
(816) 932-5967
(f)
(816) 932-8661
(e)
sbkramer@SAINT-LUKES.org Barbara Kunz (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0962)
Hubert Humphrey Cancer Center (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0962) Robbinsdale, MN
(w)
(763) 520-3813
(f)
(763) 520-5875
(e)
barb.kunz@northmemorial.com Joy Larsen Haidle (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0978)
Hubert H. Humphrey Cancer Cent... (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0978) Robbinsdale, MN
(w)
(763) 520-3815
(f)
(763) 520-1999
(e)
joy.larsen.haidle@northmemorial.com Lenna Mallin Levitch (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=1011)
Dnaxprt Consulting, Llc (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=1011) Overland Park, KS
(w)
(913)669-3331
(f)
(913)681-3134
(e)
dnaxprt@kc.rr.com Kara Mensink (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=3796)
Mayo Clinic (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=3796) Rochester, MN
(w)
(507) 284-2186
(f)
(507) 284-0670
(e)
mensink.kara@mayo.edu Stacey Miller (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=4725)
Saint Luke's Cancer Institute (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=4725) Kansas City, MO
(w)
816-932-2375
(f)
816-932-5394
(e)
smiller4@saint-lukes.org Susan E. Mundt (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=1232)
St Luke's Hospital (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=1232) Kansas City, MO
(w)
(816) 932-5967
(f)
(816) 932-8661
(e)
smundt@saint-lukes.org Kristin Baker Niendorf (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0058)
North Memorial Medical Center (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=0058) Minneapolis, MN
(w)
(763) 520-4339
(f)
(763) 520-1999
(e)
kniendorf@yahoo.com Shanda S. Reinke (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=2481)
Abbott Northwestern Hospital (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=2481) Minneapolis, MN
(w)
(612) 863-9467
(f)
612-863-0233
(e)
Shanda.Reinke@allina.com Gwen M. Reiser, MS, CGC (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=1431)
University of Nebraska Medical... (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=1431) Omaha, NE
(w)
(402) 559-4161
(f)
(402) 559-7662
(e)
greiser@unmc.edu Bronson D. Riley (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=4486)
Southeast Nebraska Cancer Cent... (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=4486) Lincoln, NE
(w)
402-327-7363
(f)
402-488-5012
(e)
bronsonr@senhoc.com Quinn Philip Stein, CGC (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=3090)
Sioux Valley Clinic (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=3090) Sioux Falls, SD
(w)
(605) 333-4298
(f)
(605) 328-8801
(e)
steinq@sanfordhealth.org Brittany Thomas, MS, CGC (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=3922)
Mayo Clinic Laboratory Medicin... (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=3922) Rochester, MN
(w)
(507) 538-9163
(f)
(507) 284-0670
(e)
thomas.brittany@mayo.edu Julie Thompson (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=6832)
Cedar Rapids,
(h)
(319) 366-5218
(w)
(319) 369-7816
(e)
thompsja@crstlukes.com Melissa R F Truelson, GC (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=5138)
University of Minnesota Medica... (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=5138) New Hope, MN
(w)
612-624-3618
(f)
612-624-6645
(e)
mtruels1@fairview.org Julianne C. Wojciak (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=2697)
UCLA (http://www.nsgc.org/source/members/cmemberdisplay.cfm?section=unknown&id=2697) New Ulm, CA
(w)
(310) 825-8711
(e)
juliannewojciak@hotmail.com http://www.nsgc.org/source/images/1X1.gif

[ElaineM]

Oh my goodness. I am sorry to hear about your friend's niece. I don't have any major advice except to say that some BRCA testing might be an option, but as well all know basic treatment decisions (plus her 2, ER and progesterone testing)should be made as soon as possible. Please give her a cyber hug from me.

[Rich66]

Came across this organization at the liver symposium:
http://www.imermanangels.org/
might be able to connect her to a peer survivor.

[suzan w]

no advice, just sending best wishes and prayers

[schoolteacher]

Michele,

Hope your friend's niece has found out something about what her treatment will be. I will say a pray for her. Let us know how she is doing.

Amelia

[jones7676]

That was so sad to read...the only advice I have is to get a second opinion and I was very impressed by the list that was given to you for potential medical care to pick.

While not as young, I have a friend who they found mets in the spine after a year and half of going to the doctor for back problems and she is many years out without any recurrence.

I hope they can provide her with exactly what she needs and I will be thinking of and praying for her.

[juanita]

no advice just sending alot of prayers!