Share with others who have ER-/PR-/HER2- breast cancer.
Posted on: Dec 16, 2013 09:46PM - edited Dec 16, 2013 09:53PM 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!!
Posts 1 - 30 (369 total)
Dec 18, 2013 08:35AM NadJan wrote:
Not only would I like to hear from long-term survivors, but I can't seem to find any triple negative info on after-care. I am almost two years out and my doctor doesn't want me to have a mammogram every six months. Once a year is common? I am very curious about that. Thanks
Dec 18, 2013 09:29PM BanR wrote:
NadJan: for me the doc says, the first 2 years follow up every 3 months, then from 3rd to 5th year follow up every 6 months. after 5 years i guess its once in 6 months or 1 year. why dont you ask an ulltrasound every 6 months..its safer than mammogram.
Dec 19, 2013 12:31AM bak94 wrote:
Well, I was first diagnosed with stage 2b triple negative in December of 2002, so I am an 11 year survivor of that one:) Unfortunately I had a new cancer pop up in my opposite breast in April 2011, stage 3C and I am out over 2 years for that one. I was 36 with my first diagnoses. My advice is to make sure you have the brca testing done, and if you are positive, think long and hard about having a bmx. If I had done that the first time, I may have not gone through what I did the second time. Oh, and I was being watched closely, but insurance had decided to not pay for my breast mri's after five years of them.
If you are young or even if you are not young, and have dense breast, make sure you are doing more than a mammogram for follow up. My lump was almost missed this last time and I was at stage 3 already! The doc said it was fine, but then for some reason he decided to look again and called me back in as I was leaving the parking lot. Well, there was something there.
There are many survivors out there! They are out and about enjoying life. Some of them will stop by here and leave a note, and we so appreciate those notes!
Dec 19, 2013 05:37AM BanR wrote:
Wonderful to hear from you bak94! Inspite of being hormone negative and brca positive, your cancer didnot recur for 11 long years!!! wow!
and thanks for your advice on getting the brca test done. My Brca results are out and its negative for brca 1 and for brca2, they saw 4 mutations which they say is no no clinical relevance ( not too sure what it means, but my oncologist considers it negative for now)
all the best for your follow ups and be in touch..
love
Dec 19, 2013 08:24AM TifJ wrote:
BanR- my BRCA 2 also came back with "a variant of unknown significance". My doctor also considers it negative. Your variance will remain in a database and should that variance ever start showing up with regularity in others diagnosed, your doctor will be contacted. Kind of stinks that you know "something" is different, but may never know if it has played a role in your diagnosis!
Dec 19, 2013 02:15PM HHCats wrote:
I just found this thread. It is so good to hear about people who are long term survivors. I'm 14 months out and despite a plethora of good news (my doctor's words!) - I am still freaking out about a recurrence. I am trying to live my life and get on with it - I have three young kids 9, 6, and 6. I have to be here for them! Thank you again for posting your stories. It gives me hope.
Robin
Dec 19, 2013 04:17PM TifJ wrote:
NAdjan- I stopped getting mammo every 6 months at 2 years as well and now just have it once a year. I saw my new MO today (last one retired) and he now wants to see me every 6 months instead of every 4 months.
Dec 20, 2013 02:23PM Blessings2011 wrote:
Not sure if this qualifies as a long-term survivor story or not, but here goes.
In October, we were out of town, and went to a grocery store late one night. The first thing I saw was a HUGE stack of Frito-Lay chips, in six-packs, all swathed in pink, saying they "support breast cancer research"...
DH and I looked everywhere for details on where the money went, and found nothing. So I called for the store manager.
When the woman came over to see me, I explained that while I knew she wasn't personally responsible for the display, there were hundreds of thousands of women who were fed up with the whole "pinkwashing" aspect of marketing products in October.
She absolutely stunned me when she said she understood and agreed. In fact, she told me she was an 11 year survivor, with a triple-negative dx.
She said that she tried to be the voice of reason when it came to such horrendous pink campaigns, and that she was generally ignored by big management. (It was a chain of stores.) We had the most incredible chat right there... DH wandered off to give us privacy... and she told me what she had been through in the beginning, and how she is coping now.
She has a stressful job, but it's a good one. She has good family support. Her only limitations are occasionally heavy lifting, and she can always find a stock person to assist. She is no longer receiving any treatment, and just checks in with her MO on an as-needed basis. Can't remember the details of her surgery, but she did have chemo, and now feels fine.
I told her about this board, and she said to please tell women that triple-negative patients do go on to have very normal lives.
Dec 20, 2013 10:31PM BanR wrote:
Thanks Blessings20 for sharing this story ! It so nice to get inspired from women residing in different corners of the world, whom we have never seen or met. Your prognosis looks so nice too..hormone positive and her2 negative and stage 1..i guess you never needed any chemo at all..lucky!
TifJ: even you have those kind of mutations like me! i was reading that there can be upto 800 mutations in the brca2 gene and not all have been found to be clinically relevant as of now. I have a daughter..5 year old though. A little worried about her, specially with me getting breast cancer at 35 and these "unknown mutations". 2014 is round the corner, and i guess you will complete 4 years, isnt it!
HHcats: My chemo is on now and when all this is over, the fear of recurrence will come in. You are 14 months out...10 more months and you cross the first 2 year hurdle and very soon even you will join the long term survivor list!! My onco decided to postpone my 4th AC chemo by 6 days and at a 10 percent reduced dose!! i just wonder if it will trigger a recurrence for me.
wish you all and bak94 and nadjan, a merry christmas and a very happy and healthy 2014! This festive season i will mostly be in and out of hospital... sigh!!!
Dec 21, 2013 12:11PM TifJ wrote:
BanR- I have an 8 year old daughter (she was 5 at my diagnosis), so I sure understand the fear for your daughter. The new MO I saw Thursday wants to check with the genetic Dr. that did my original BRCA test. He says there have been improvements to the test and he wants to know if I should be tested again. I doubt my insurance would pay for it, but it would certainly be interesting to see if the results change- for the better or worse.
Dec 22, 2013 05:14AM 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.
Dec 26, 2013 07:17AM 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!!
Dec 27, 2013 08:49AM 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 life
Dec 28, 2013 01:05AM BanR wrote:
Lovely to hear from you Imcclure and gorilla12... happy new year to u too!!
Dec 28, 2013 02:51AM 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:)
Dec 29, 2013 04:32AM BanR wrote:
i came across this while browsing the net: Half-Century Breast Cancer Survivor Shares Perspective
In 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.”
Dec 29, 2013 04:21PM 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 :)
Dec 29, 2013 07:04PM 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.
Dec 29, 2013 11:09PM - edited Dec 29, 2013 11:12PM 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!!
Jan 2, 2014 05:58PM Lmflynn wrote:
I love this post...thank you for starting it.
Jan 3, 2014 08:11AM - edited Jan 3, 2014 08:13AM by slanderson
Hello!
I was diagnosed tn in July of 2005. I had a lumpectomy, chemo and radiation. I have had a mammogram and an MRI every year since staggered so we do one test every six months. All of my brca testing was negative. My lymph node status is unknown because the sentinel node test didn't work and my dr said their was no reason to remove lymph nodes since it wouldn't change my treatment plan. So I guess it's been about 8 1/2 years, so far....so good! Fingers crossed!
Good thoughts out to everyone!
Ps, I was 41 when diagnosed.
Jan 4, 2014 10:24AM BanR wrote:
Congratulations slanderson for completion of close to 9 years!! Thanks for posting!
I feel so happy when women who are 4 years.. 5 years ..9 years and more, out from their treatments and have gone ahead with their lives, but still find some time and post their thoughts here. All of you are our inspiration.. :)
Jan 4, 2014 10:59AM AlwaysHope wrote:
I'm a 10 year survivor of triple negative Inflammatory Breast Cancer. (IBC). Sort of a double whammy. My follow up was based more on my Inflammatory BC diagnosis so not sure it is relavent for all triple negs.
I now only follow up once a year with my breast surgeon with a diagnotic mammogram on the non-affected side. I had a unilateral mastectomy so we still watch the other side. So far so good.
It is possible to have long term survival. My life is pretty much back to normal and good.
Jan 6, 2014 09:06AM Mkd55 wrote:
My story began in August , 2012 when I had a follow up mammogram and was informed I had breast cancer. (stage 2a) I had surgery (a lumpectomy), 3 treatments of AC should have been 4, but had to be admitted to hospital, 11 treatments of taxol, again should have been 12, but neuropathy was too much, and 19 days of radiation. Treatment finished last year May. I have a very supportive network of family, friends and members of my church. My faith in God also helps.
I was told that my body would not react well to Tamoxifen or Aromatase, so presently I am not on an after treatment drug. It is good to read that there are survivors that are over 10 years with a TNBC diagnosis. Are there any signs that I should look for in case of a recurrence? For the last three weeks my throat is hoarse especially when I speak a lot. Is that cause for alarm? Hoping to be a part of this positive and informative network.
I am hoping to hear stories of survival for persons diagnosed with TNBC.
Jan 6, 2014 07:05PM - edited Jan 6, 2014 07:06PM by BanR
congratulations alwayshope..you are a 10 year survivor, wishing you many more decades of healthy life!
Mkd55: Get it checked/ I hope it turns out to be just a viral infection or allergy. All i know BC spreads out to Bone, lungs, brain, liver, usually. So we should be very careful if we have cough which doesnt go, bone pain and other symptoms related to these organs. Our long term survivors will give us better guidance on follow up methods and all. I am just midway, finished AC now for taxol and then radiations.
Jan 16, 2014 04:48PM Pnak wrote:
I just got diagnosed 2 weeks ago with triple neg. I should be getting BRACA results back tomorrow. This post is making me feel better about the future. Thank you!!
Jan 16, 2014 10:56PM BanR wrote:
Crs319: thanks for sharing your moms and your friend's story. Sure they are an inspiration. hope. You mention you had lumpectomy and chemo twice. Hope your treatment is over by now
sorry to hear Pnak, that you got diagnosed with tnbc. So whats your treatment plan now.
Jan 19, 2014 01:26PM Pnak wrote:
I think (waiting for BRACA results) I am joining a study at Dana Farber. I should hopefully start chemo this week. I'm nervous....I have no clue what to expect.
Jan 19, 2014 10:20PM BanR wrote:
Pnak: done with lumpectomy/ mastectomy?
Jan 22, 2014 05:11PM Pnak wrote:
No. They are doing chemo first. They just pushed it to Monday from today. I think they want to give me a panic attack. haha. I'm ready to beat this!