an important story...I hope |
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SagePatientAdvocates 
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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 Topic: an important story...I hopePosted: May 27 2009 at 7:55pm |
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http://ww5.komen.org/breastcancer/SteveK.html
It is my fervent hope that my story will help get the word out that men can carry the BRCA mutation that can predispose their daughters to breast and ovarian cancer and also that their sons can carry it, with consequences, and that the fathers, themselves, can be at increased risk for various cancers.. Incredibly, this fact is still not known even among many doctors who feel breast cancer "goes from mother to daughter." and of course, at times it does but sometimes it doesn't...The male side of the family and the cancers on his side often are not asked about. I truly believe lives can be saved with this information...I hope that will be the case.. all the best, Steve Edited by steve - May 27 2009 at 7:56pm |
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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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Raine
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Joined: Jun 14 2007 Location: New Zealand Status: Offline Points: 34 |
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Posted: May 28 2009 at 1:54am |
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Hi Steve
I am a 2 times triple neg BC trivor and have just recently had the BRCA testing done and have come back positive for a BRCA 1 mutation and I have the same mutation as my cousin (she has Ovarian Ca). We have both inherited it from our fathers, but unlike you and your daughter we have no real family history as there are very few females in the family. So until our own early onset cancers were unaware of any risks. Raine |
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Raine
Dx Jan 1997 Medullary,6/14 nodes Lumpectomy, Rads & 6xAC Dx July 2006 IDC, 29/34 nodes, Mastectomy, 4xFEC and 6xTaxol, Rads |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: May 28 2009 at 9:22am |
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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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MaryinSarasota
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Joined: Nov 08 2008 Location: Sarasota Status: Offline Points: 362 |
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Posted: May 28 2009 at 10:04am |
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So this is our Steve...
Such a strong message. I am sure you will reach the millions you hope for. Mary |
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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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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: May 28 2009 at 12:37pm |
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Steve thank you for sharing.
Unfortunately some docs are lacking in giving out the correct information for many things and this is another one on the list.
Your daughter is very lucky to have you for a dad and I am sure you will do your best to reach other men, it is very important as we know.
Good luck to you on your mission,
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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SagePatientAdvocates
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Posted: May 28 2009 at 6:05pm |
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greetings from Orlando..
Raine, I was in your beautiful country with my son in 1990...also Australia...and my seatmate today on flight from Los Angeles was very knowledgeable oncologist/now advocate from Australia...He flew Sydney/LA and then on to Orlando..lot of flying, huh? we had an excellent conversation and then he joined me for dinner..I discussed with him what I am trying to do and he strongly encouraged me to continue getting the word out about men and BRCA. Seems the guys in Australia are the same as the U.S. They "don't want to know." Rarely test, no matter family hx. etc. etc. I imagine same in NZ, huh? Nancy, thank you for the link and thank you for being you.. Mary, I am actually a much younger-looking man, in person. 
My son, who is a Photography major at Art Center College of Design in Pasadena took this picture and I am certain there is something wrong with his lens. I also feel the young woman, at the movie theater I went to the other day, needs glasses. I asked for a "Senior" ticket (and their requirement is 65+...just passed that milestone 4 months ago) and she just printed it out when I gave her my $8..."don't you want to see my driver's license?" I inquired brilliantly..."no sir, that's fine"..so cold don't you think?
Thanks Pam..Hope you are doing o.k. all the best, Steve p.s. will try my best to report back from ASCO..it may be a bit erratic timewise but I promise to try my best.. |
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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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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: May 29 2009 at 8:51am |
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Hi Steve,
How interesting to have an Oncologist right beside you on the plane. I wonder, in a liesurely setting of say flying on a plane is it allowed to ask questions or give the doc a break? Sounds like this one was a friendly sort and even met you for dinner, that's wonderful.
That was enjoyable to see your picture. We are hoping for the day when we can post a picture on the website. Very handsome man who really does not look 65!
We will take whatever bits you have time to throw our way. Enjoy.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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MaryinSarasota
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Joined: Nov 08 2008 Location: Sarasota Status: Offline Points: 362 |
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Posted: May 30 2009 at 2:04am |
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Hi Steve. I hope you are handling the stress of it all. I loved your interpretation of the limos in the other post. During chemo the nurses always had anything they wanted for lunch for free, cost picked up by the drug co. I couldn't afford to pay my Neulesta bill and oh don't get me started.
Sorry, I digress, I just wanted to tell you that you have a boatload of energy and that picture surely doesn't show that side of you. Also, be assured when you are done with the conference there will be many people who will remember you. Have a good day. Oh, btw... I am in Sarasota so welcome back to Orlando. Mary |
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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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rena
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Joined: Jul 06 2007 Location: United States Status: Offline Points: 181 |
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Posted: May 30 2009 at 9:07am |
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Excellent article, Steve--and I say that as both a BRCA2-positive woman and an editor! Rena
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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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Valkayri
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Joined: Apr 04 2009 Location: St. Louis Status: Offline Points: 31 |
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Posted: Jun 01 2009 at 12:18pm |
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Steve, Your story touched me in so many ways. I inherited the BRCA2 from my father's side and I know how hard it has been on him that his genes were the reason I got BC at 35. I also argued for years with my obgyn over the fact that the history of BC on my father's side(grandmother at age 39 and all three of her sisters between ages 45-55) was just as relevant to me as the lack of history on my mother's side, especially once my father got prostate cancer at age 50. My obgyn continually blew me off even though I at one point looked him dead in the eye and said, "Seriously, with all of your scientific studies you're going to tell me that 50% of my genes mean nothing? Even I with having only taken high school biology know that my genes are half his...." And he said,"Yep, doesn't matter unless it's your mom's side!"
Fortunately my internist was also my parent's Dr. and she insisted I have a baseline mammo at 34 and that I be vigilant and call her if I was ever worried. Which I did when I found the lump as my obgyn's office told me it would be a week before they could see me due to it being a holiday weekend coming up(this was on a Tues btw....4 days until the weekend!) My internist got me in that morning and then scheduled the mammo and ultrasound for the next available time and then had them call her on her day off with the results and before she called me to tell me they thought it was cancer she had already set up the biopsy appt and an appt with my onc for the very next day!
So, some Dr.s do pay attention, but others do not it seems, and I was lucky to have one who did. The obgyn who didn't however, I have since dropped, but not before I wrote a lengthy letter to him and sent it along with my test results and my hope that he would never dismiss any patients worries about genetics out of hand again! And of course I tell everyone in my town who he was and frankly advise them not to go to him....I'm not out for blood, I just would never want someone else to have the same experience and possibly a much worse outcome.
Anyway, thanks for advocating for all the daughters out there who have gotten the gene from their dads. Hopefully it will open many eyes:)
Kara
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TNBC May 2008 @35
stage 2, grade 3 3.7 cm & under 1cm BRCA2+ dose dense, neo-adjuvent 4AC& 4Taxotere bilateral mast Oct.08 Reconstruction finished Nov 09 www.mishmashin.blogspot.com |
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