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Update on my daughter-16 years a survivor

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    Posted: Jul 29 2020 at 11:06am
Dear TNBC family,

One of the difficulties with this wonderful site is that we often hear of recurrences but often don't hear when a long-term survivor say hi and tells us that she doing great. That is very understandable and my daughter is a perfect example of someone who would like her memories of what she went through to stay a memory and does not want to post. 

"Daddy, cancer is out of my life now and I would like to keep it a memory. I will still do my surveillance but I don't want to write about it." I think it is a bit more complicated than than that, though, as she is a school teacher and has been open with her colleagues and remains a resource for them.

Interestingly, even though she has always been modest about her breasts she is amazingly willing to share her implants with women who is struggling to make a choice. Obviously, I haven't intruded on her privacy, but I have had several women tell me "your daughter was so helpful and actually removed her blouse and said to me..just feel them and you will have a better idea what they feel like and then you can decide what you want to do."

I have helped several women here for 10+ years and invariably I will be asked "how is your daughter?" and they are delighted to hear she is well. 

For those of you who don't know, I would like to give you a brief history and then the update.

My daughter grew up knowing her grandmother (my Mom) had breast cancer at age 40 and passed away at age 46, when I was 20, and she knew how, extremely, painful that was to me, even decades later.

In 2004 my wife and I went to the Olympics in Athens, Greece in 2004 and my daughter (then age 36) and her husband were supposed to join us. Instead about two days prior to her arrival I got a call from her "Daddy, I hate to tell you on the phone but I have cancer." This was on a Tuesday and she followed with "I am having surgery on Friday." I suggested to her that she should get a second opinion but she refused. "I like the surgeon and the fact that cancer is 'growing' in my body is making me crazy." So, my wife and I flew to NY on Thursday and Friday a.m. I was walking up the steps with her to accompany her to the surgery at the same hospital where my Mother passed away some 40 years before. I had vowed to never set foot in that hospital again, and hadn't prior to that day with my daughter. I was a little shaky and my daughter grabbed me by the bicep "Daddy, are you o.k.?" "Just very sad, sweetheart." Understatement of the century.

Anyhow, neither my daughter or I knew anything about BRCA and her surgeon never mentioned it, unfortunately. That's a story for another day. 

My daughter had a quadrantectomy and then 4 months of ACT. She then, once we both tested BRCA+, had bi-lateral mastectomies and prophylactic gynecologic surgery.

It will be 16 years later in a few days and my daughter (now 52) is healthy and most importantly she is NED (No Evidence of Disease) the most wonderful acronym in the English language to me. Beats LOL by a mile, doesn't it?

She is a Yoga fan and is a Mediterranean diet follower, most of the time.

Anyone else out there who is 3 years+ out? I think we would love to hear from all of you. Would be very encouraging to those recently diagnosed to know that women can beat TNBC. 

Please share your stories.

with my love to all here,

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 Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 29 2020 at 9:56pm
Steve...thank you and this is wonderful news!  I will share my family story...my cousin is 17 years out.  My other cousin one year and I am 2.5 years out.  All of us tnbc.  These survivor stories give us hope and I personally hang on to every word of them.  I remember when I was going through chemo...I would read this site and just love to read your posts and those of Donna!  I felt like I had people in my corner.  

So, thank you and Thank you again and again.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2020 at 3:21pm
Great stories, guys.  It really does warm the heart and give you a lift to hear about fellow TNBC beaters!

Like your daughter, Steve, I can't always talk about it.  But, sometimes, once I'm off, you'd have a job stopping me.

It's not that I am private about it in anyway but I do get tired of explaining it all to the er....uninitiated!  And, apart from here, I have NEVER met anyone with TNBC to talk to about this cancer.

I have just had my third "birthday"...well, I tell myself that this is my new life and I still hopefully have the rest of my life to live!  Just had a normal mammo and will be having the first of my operations for removal of scar tissue and extraction of fat from my tummy to be centrifuged and then injected into my partial mastectomy site.  I have been told that this is a process that would take at least 2 and maybe 3 ops.  The number and space between ops will depend on how well my body can absorb the injected fat.

Just want to say good luck to everybody on here and also to add to Marymom's comment about it being good to have "people in my corner"LOL
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2020 at 11:10pm
Dear MaryMom,

Thanks for sharing your family's story. I am sooooooo delighted your cousin is 17 years out. Wishing you and your cousin at least as much success..

Donna and I started posting around the same time in 2009 and at that time there were two people on the site who were so incredibly generous with their time as Donna has been all these years. Thank you, again, Donna you have been a marvelous resource for so many here.

The first person who wrote to me was a Canadian woman named Connie...I think she has training as a medical librarian and she was super smart and dedicated to this site.
The other was Karen who was also very, very smart with a beautiful heart. I had the pleasure of developing genuine friendships, with both of them, which really helped me get through some worrisome days with my daughter.

Dear Plume,

In my experience, it is often very difficult to talk to someone who is not knowledgeable/experienced with whatever the subject it. TNBC is like that. And the BRCA mutation is also difficult.

I remember going to a party a few months after my daughter was diagnosed with TNBC and tested BRCA positive and a psychiatrist, who I knew casually, walked over to me and said "you look very sad, what's wrong?" So, I told him that my daughter was facing mastectomies at some point and she had a difficult type of breast cancer and yes, I was said and afraid for her. Psychiatrists are MDs but he said
"why would you allow your daughter to mutilate her body?"...I said "the decision to have the surgeries is considered the gold standard for women with the BRCA mutation. And the decision is hers. She is 36 and it is her body and her decision. I happen to agree with what she doing but it is her decision."
"Well, I would never let my daughter do that." 
"Do you know anything about BRCA and have you heard of TNBC?"
"No, I never heard of either."
So I explained the basics to him and said "why don't you read about them on PubMed and then if I ever see you again, we can talk."
I understood his ignorance but his pronouncement made me angry, somehow. I think I would be more gentle today but it was amazing to me that he had such strong views even though he did not have the knowledge.

And that is why this site is so important. The women and several men, here, really 'get' what TNBC is all about and you can write anonymously, if you wish, and get support from
people who truly understand and are gracious with their time and have caring hearts. 

God bless you Donna, for your continued support.

with my love to all here,

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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