Topic: Long term survivor examples.

Forum: Triple-Negative Breast Cancer — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Dec 16, 2013 11:46PM - edited Dec 16, 2013 11:53PM by banr

Posted on: Dec 16, 2013 11:46PM - edited Dec 16, 2013 11:53PM by banr

banr wrote:

Just an idea came across my mind.

Can we share stories and examples of long term triple negative survivors. They dont participate in such forums. So its only by word of mouth that we get to hear about them.

But I also see few of them in this website, who themselves are long term survivors. I feel so happy to see how they have moved on so beautifully with their lives.

I know two such women. Both close to 10 years out of diagnosis. Both without any family history of cancer.

One diagnosed in 2003 and another in 2004. Both were in their late 30s then. Those days they were not aware that they were triple negative. But they say that tamoxifilin didnot work on them, they had only surgery chemo and radiation. So in all probability they were tnbc patients.

One was stage 1, another stage 2b. One had 6 rounds FEC and another had 6 rounds TAC. They both have yearly check ups now and are leading completely normal lives.

I also know another woman, who got diagnosed 5 years ago but stage 3, body didnot respond to tamoxifilin and had complete mastectomy. She had 6 rounds TAc, plus rads. Living a normal life...and put the entire episode behind her.

If you also know someone having similar treatment and diagnosis years ago and is still living ...please share. It will be very insipiring.

Love u all!!

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy; Lumpectomy (Right) Chemotherapy 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Dec 22, 2013 07:14AM banr wrote:

yes..u r right TifJ. The results of brca would surely be worth a watch, specially with us having the unknown mutations. will check with my onco too..if these can be re-evaluated.

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy; Lumpectomy (Right) Chemotherapy 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Dec 26, 2013 09:17AM lmcclure4477 wrote:

I have a friend that I met on another forum who was diagnosed with Triple Negative 9 years ago at the age of 34!  She is doing great and has not had a recurrence. She has been my rock through my diagnosis and we are great friends now!!  

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Dec 27, 2013 10:49AM Gorilla12 wrote:

I have been back here a few times just to remind others that long term survival is possible. I was diagnosed in 2005 and my doctor told me in 2010 I was cured. I had triple-negative with no-lymph node, stage 1.

I just remember when I was diagnosed I so wanted to know that other women had survived this disease. I was 41 at the time. I'll be 50 this summer. I am happily rmarried to a great guy, daughter is finishing her master's in library science in June 2014 and my son will join the Marines in April 2014. I have a job I love and great family and friends.

I wish all of you a Happy New Year in 2014 and for anyone out there who wanted to know like I did - yes you can survive this and have a full lifeSmile


 

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Dec 28, 2013 03:05AM banr wrote:

Lovely to hear from you Imcclure and gorilla12... happy new year to u too!!

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy; Lumpectomy (Right) Chemotherapy 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Dec 28, 2013 04:51AM 5andcounting wrote:

My mother is 11 years out and one of my friends is at 13 years. Both triple negative. Mom had no chemo, just rads and lumpectomy-she had a very small tumour. 

My friend had chemo, mx and had a baby after triple negative. 

Plenty of long term survivors-they just don't come here. Too busy:)

Surgery 11/3/2009 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Dx 11/6/2009, IDC, 1cm, Stage IIA, Grade 3, 1/20 nodes, ER-/PR-, HER2- Chemotherapy 12/29/2009 AC + T (Taxol) Radiation Therapy 4/17/2010 Breast Dx 4/16/2013, IDC, Left, 1cm, Stage IIA, Grade 3, 0/0 nodes, ER-/PR-, HER2- Surgery 4/30/2013 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 6/5/2013 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Dec 29, 2013 06:32AM banr wrote:

i came across this while browsing the net: Half-Century Breast Cancer Survivor Shares Perspective

Half-Century Breast Cancer Survivor Shares PerspectiveIn 1961, when most of the country was focused on the first American helicopters landing in Vietnam, 27-year-old Joyce Faulkner was already engaged in a different type of battle: the battle against breast cancer. Fast forward 50 years, and the now 77-year-old Faulkner not only won her battle but serves as inspiration for other women who are still in the fight.

“I credit my mother for my survival; she lived to be just short of 100. She was an optimist and survivor and I inherited those attributes from her,” said Faulkner. “When I was diagnosed I realized that I had to have hope, I had to survive and I would survive.”

Now a resident of Little Rock and a patient of the University of Arkansas for Medical Sciences (UAMS), Faulkner received her initial cancer treatment in Pine Bluff. “I am always asked by people if I was treated at UAMS, and it’s so funny because I have to remind people that in 1961 the UAMS Cancer Institute didn’t exist,” she said.

“There was so much I knew I had to live for. My son was only 5 years old, and I was my parents’ only child. I knew if I gave up, my son wouldn’t have his mother and my parents wouldn’t have their daughter. They really made me focus on my survival.”

Faulkner fondly remembers the doctors who cared for her at the time of her diagnosis, but due to the limitations of research and treatment in the early 1960s, her options were limited.

“I was taken care of by some really wonderful doctors who were just doing the best they knew at that time. There was little information known about chemotherapy, so I underwent radiation therapy,” said Faulkner. “Being a 50-year survivor has allowed me to see the amazing advancements that have been made in the fight against breast cancer.”

Another difference between Faulkner’s treatments in the 60s and today’s treatment options is the mastectomy procedure. “I had a wonderful surgeon who did what he thought he had to do, which was very radical. At the time the radical approach was considered to be the best treatment option,” she said. “There were no cosmetic reconstruction options available.”

Faulkner credits her active lifestyle as an important part of her 50-year survival. “I took the bull by the horns and got active,” she said. “I took up tennis 40 years ago and still enjoy it very much. I also started bowling, playing golf and got involved in church and civic activities. Being involved in those activities helped to get my mind off cancer and made my life seem normal again.”

Faulkner is now using her 50 years of survival to help empower and inspire women who are still battling the disease. “When I had my procedure there weren’t many if any support groups available for women battling breast cancer,” said Faulkner, “so it became a personal mission for me to encourage women who have breast cancer.

“When I encounter someone with cancer, whether I am at the grocery store or the bridge table, I am compelled to tell them my story and let them know they can survive just as I have,” said Faulkner. “I tell them they have to be hopeful and optimistic and they can survive more than 50 years.”

Faulkner continues to receive follow-up care at the Winthrop P. Rockefeller Cancer Institute forlymphedema, which is swelling of the limbs caused by fluid build up in soft body tissue. Lymphedema often comes as result of cancer treatment and has no cure.

“Even though I didn’t receive my initial treatment at UAMS I have received wonderful care here and always encourage people to seek treatment at UAMS because I believe it is the best.

“I also encourage people to seek out support groups like the Lymphedema Support Group at UAMS,” said Faulkner. “There is just something so comforting about meeting and speaking to a group of people who are experiencing the same thing as you.”

The Lymphedema Support Groups meets from 11 a.m.-12:30 p.m. on the fourth Tuesday of each month at the UAMS Family Home, 4300 W. Markham, across from the UAMS campus.

Reaching the 50-year milestone, Faulkner now enjoys all that life has to offer. “My husband and I travel often, I enjoy spending time with my children and grandchildren, and am still very active in tennis,” said Faulkner. “I just feel so fortunate, I really do. I have lived a good life and I can’t complain.”

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy; Lumpectomy (Right) Chemotherapy 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Dec 29, 2013 06:21PM amw2282 wrote:

My name is Amanda and I am 31 yrs old and was diagnosed with triple negative IDC in Nov. I just signed up for this website today and I am really glad that I did. This is the first site that I have been to that offers positive thinking and hope for TNBC. I have been so sad and scared about dying since I got the diagnosis but reading all of these posts and stories have helped me so much.. thank you all :)

Surgery 1/7/2013 Lumpectomy: Right Dx 11/20/2013, IDC, Right, 5cm, Stage IIA, ER-/PR-, HER2-
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Dec 29, 2013 09:04PM Phillygurl44 wrote:

I am so glad to have found this post.  I was just diagnosed with TN Stage IIa on Dec 11th and everything I've read on TN has been dismal.  Thank you to whomever started this topic.

Aut inveniam viam aut faciam! - ( I shall either find a way or make one!) - Hannibal Dx 12/11/2013, IDC, 2cm, Stage IIB, Grade 3, 2/6 nodes, ER-/PR-, HER2- Surgery 2/12/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 2/26/2014 Reconstruction (left); Reconstruction (right)
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Dec 30, 2013 01:09AM - edited Dec 30, 2013 01:12AM by banr

I know amw and phillygurl..

there is so much scare when it comes to triple negative that i consciously pick up only the positives...like young women diagnosed years ago and still living. The tough part is TNBC was not treated as a separate disease, so it will be difficult to locate survivors, since even they themselves dont know they were triple negatives...If you meet somebody who was diagnosed young, ask her what was her treatment like and did her body respond to hormonal therapy or not, i am sure they would be aware by now what they had, most women ask for their slides from the lab and recheck what kind of tumor they had those days, while they do their routine follow up...... and do share stories with us too.

This is a good website...i have met some wonderful women here, some are fighting cancer with me..some are few years out of this...some unfortunately lose the battle...but there is so much to learn from everybody!!

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy; Lumpectomy (Right) Chemotherapy 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Jan 2, 2014 07:58PM Lmflynn wrote:

I love this post...thank you for starting it.  

Dx 7/12/2010, IDC, <1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2- Chemotherapy 11/13/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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