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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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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2020 at 8:49am
hello to Steve and Donna. I am rarely on. Nice to still see familiar names. 

I was dx in 2001, 2 weeks after my motherís passing from ovarian cancer. I did have basic BRCA testing in 2003 and thanks to this forum extensive testing as part of the King study. Fortunately results were all negative. 

The tx I had [listed at my signature] was tx of the day. TNBC hadnít even been named yet. I accidentally found out the name from a customer who had been dx. then found this forum looking up information. 

Good luck to all of you currently going thru tx. 
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 05 2020 at 8:54am
Dear Kirby,

So nice to see you posting....It looks like you have a 20 year anniversary coming up. Smile
How marvelous!!!!! Thank you for letting us know.

Be well/safe.

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 sarahtt99 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 01 2020 at 8:36pm
Amazing! I hope I can make 15 years mark to see my son graduating from high school.

Do you mind to share your daily routine? Foods and daily activities? I want to do anything I can to keep me cancer free. My treatment will be finished in Feb next year and after that I donít know what to do. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 01 2020 at 10:41pm
Hi Sarah,

I hope you make the 15 year mark ++++++++++++

I can tell you some of what my daughter does that seems to have helped her but everyone's interests are different as are their responsibilities. She has been on a Mediterranean diet for years...enjoys yoga a lot. She is a lower school art teacher and enjoys jewelry making, knitting and photography.

After you are finished with your treatment I suggest talk to your oncologist about some sort of surveillance program.

Enjoy your little one and best of luck to you.

with my love to all here,

Steve




Edited by SagePatientAdvocates - Sep 01 2020 at 10:42pm
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 sarahtt99 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2020 at 6:47am
Hi Steve,

Thanks for your reply.

Iíve already talked to him and he told me that because it is TNBC, there are no options and just watch and see.

My tumor is 19 mm at Dx and 21 mm after surgery in the final report, no lump nodes involved, and all negative, cleared margins, did lumpectomy, currently on Chemo treatment.

What I am doing to do after the treatment is exercise, supplements, and yoga, maybe mastectomy if necessary.

I want to do something rather than nothing.

Any recommendations are most appreciated. Thank you. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2020 at 11:10am
Dear Sarah,

You wrote that your oncologist wrote you "just watch and see." I assume his perspective is that you wait to see if you ever have a palpable lump that may be malignant? You also wrote "I want to do something rather than nothing." I agree with you and I would suggest two things you can do, but you need an oncologist who agrees with the plan I am suggesting.

In all the years of helping women with TNBC I have never heard a oncologist say "just watch and see." The surveillance programs differ but there is always one suggested.
The problem with TNBC is that, too often, it recurs, locally, or even metastasizes. Many oncologists will recommend a mammogram every year or a Breast MRI alternating with a mammogram, every six months, as Breast MRIs seem to catch some cancers more readily than mammograms and vice versa. The problem with the MRIs from what I have seen is that there can be a lot of false positives and that is stressful. Many oncologists also suggest you come in yearly for a clinical exam where your breasts and nearby lymph nodes are checked.

The other thing I would suggest is asking your oncologist to have your tumor tissue analyzed by a company such as Foundation Medicine, Tempus or Caris...If your oncologist doesn't believe in surveillance or genetic testing I would suggest you speak to an oncologist who does, as a second opinion and if you write me, I will send you my phone number and we can speak and I can try to help you find one or several.

you can send me a PM and if I don't respond within a day please send me an email to

steve@sagepatientadvocates.org 

There will be no charges on my side.

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 clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 15 2020 at 10:54pm
Awesome news about your daughter Steve. I am an 8-year survival.
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Congrats, Clifford,

That's marvelous.

delighted for you!!!!

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 Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Yesterday at 2:51am
Congratulations to your daughter.  I also grew up not knowing my grandmother, a loving, accomplished, strong woman who died of breast cancer in her early 40's.  My father (her son) was just 12 years old when she was diagnosed, and 15 when she died.  When I was diagnosed with TNBC in 2009, at age 44, it was so hard to tell my dad.  And my sister was diagnosed less than a year later, and I was the one to tell him about that too.  But we are both long term survivors now.  It will soon be 11 years for me.  I feel very lucky.  But what haunts me now is thinking I may have passed my BRCA1 mutation to my daughter.  She is 22 now, still has not chosen to get tested.  I know she worries about this a lot and it makes my heart hurt that she has to worry about something like this at such a young age.  
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Dear Meadow,

Thank you for sharing your story. Our stores are amazingly similar.

My granddaughter at the age of 19 decided she wanted to find out if she carried the BRCA mutation we have in our family. 

She tested positive for the mutation and now faces the difficult decisions of what to do about it. The only way she can avoid cancer is to have risk-reducing surgeries and the question is the timing. She is 20 and the conventional wisdom is to not do anything until she is 25 BUT, BUT, BUT I have helped 3 very young women n(22,23,24 at time of diagnosis) who all were diagnosed with TNBC and subsequently they tested positive for a BRCA mutation. None of them were doing surveillance. 

Maybe their cancers could have been found earlier if they had being doing surveillance earlier? And maybe they would have had better results?

Meadow, the only thing that I can suggest is for you to get a letter from a good 
Certified Genetic Counselor explaining, generically, why any child of your should get tested. The letter can also contain the lifetime risks of your daughter, is she tests positive, of getting breast and/or ovarian cancer. They are separate risks and I have helped  many BRCA women who have/had both cancers.

And from painful personal experience you have to accept the fact that your daughter may never test.

I can speak more freely by phone if you would like to talk..Please send me a PM and I will send you my phone number or please write me at steve@sagepatientadvocates.org
Of course, there are no charges.

Congrats on your 11 years!!!!!!!! And, again, thanks for sharing!!!

warmly,

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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