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Topic: Looking for Members Stories!

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: May 4, 2016 11:29PM

Moderators wrote:

Hello, everyone!

We're looking for Triple Negative members who would be willing to share their stories with us for our Acknowledging Our Community section. We'd like to hear from you about what you've found difficult, surprising, inspirational, helpful, etc. What are some things you've learned that you wish you knew when you were diagnosed? What would you like to share with other members who find themselves facing a triple neg diagnosis? Your words and stories are so inspirational and valuable, we'd love to hear them!

If you'd be interested in telling us your story, feel free to post here, or send it to us via private message. We also ask that you include a picture to use with your story (or, if you'd rather not, that's ok too!). Thank you for all you do to keep this community thriving, we appreciate each and every one of you!

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Posts 1 - 30 (206 total)

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May 5, 2016 02:29AM char123 wrote:

Hello: My name is Charlotte and I live in Pennsburg Pennsylvania. I happen to find myself diagnosed with TNBC in January 2010. I was still faithfully going to my Doctor at Penn Medicine in Philadelphia since April 2001 when I was diagnosed with my first Breast Cancer, it was not TNBC but ER/PR +.

I was finished with Tamoxifen and Aromasin at this point. I was devastated. It was the same breast and I had had a skin sparing Mastectomy with reconstruction in 2001, and 2002.

My doctors ran the tests twice to confirm we were dealing with TNBC. It was a small skin tag in the mastectomy scar. In the Scar! How could this be? The dr felt that the parts of my tumor that was not ER/PR + perhaps lived their dormant for 9 years and then started to grow. I was told I should have chemo and then radiation for sure. I was told this is rare but happens. The reason it probably happened was because in 2001 the standard of care in the US did not involve radiation when you had a skin sparing mastectomy with only 2 positive lymph nodes. So I was not offered radiation. It was common to do the radiation in Canada and they then discovered that 10% of us who did not have the rads in the US with positive lymph nodes had recurrences. So here I am one of the unlucky ones.

Off I go to Chemo, AC 4 rounds and the Taxol 4 rounds. I was very afraid and my experience went something like this.

The first two rounds of AC were not too bad, they gave me great meds and I cannot say enough about the chemo nurses at Penn. I worked every day to try and keep my life somewhat normal. Just after my second treatment my life partner and I flew to Ft Lauderdale as we normally would and had a nice time. It was actually funny because most of the restaurants hid me in the back, away from the customers, I had no hair, eyebrows or eye lashes and it was obviously too hot in Lauderdale for the wigs, so I wore my hats. Then things started to change and one day I came home from work and all of a sudden I was cold, and felt like I had the flu, I took my temperature it was 102. I called the oncologist on call and they told me to pack a bag and go to the nearest emergency room and tell them my doctor suspect's neutropenia. I did and they immediately quarantined me. I had no idea what that meant. It was later explained. I spent 3 days in the hospital and slept most of the time. It was a nice break. So off I go, now half way through the taxol my hands get very tingly, but I manage well. I was told in the beginning of the chemo to plan to gain about 20 lbs. That was average. I was actually losing weight, I could not eat much, did not know if it was chemo or what, but I did not like food. I ended up at 118 lbs at 5'5" and I now know I looked rough, but I went to work everyday. I work for a crane company servicing the Philadelphia, New Jersey, Delaware, Maryland area for 30 years and we have 150 Ironworkers. I heard so very many great stories from them about, mothers, daughters, cousins, friends and their breast cancer experiences. The guys I worked with were so very, very kind to me. My tough Ironworkers are actually the kindest men I know.. They all helped me through this. I get through chemo and the drs tell me the hard part is over and I will breeze through rads. OK, I say, but that did not happen I do not know what it was but I found that going to radiation everyday was far harder on me than chemo. I never had a break, it never ended. and I was done, so done with everything. Make it stop.. All I kept saying was make it stop. I truly believe I had a mental breakdown about a week before it ended. I freaked out on the doctors. It was actually the radiation nurse who realized I was traumatized and breaking down ....Anyway. It ended in September 2010. I was finished. I looked awful, but then my hair started to grow back, I gained some weight and I was thankful! SO very thankful to be alive and in good hands, and that I had a few good friends who helped me through, they fed me , made me laugh, let me cry, and I was also so very thankful and happy that my fiancé and life partner who made the entire experience as easy on me as he could. And for the people I work with who never stopped believing in me.

I would tell anyone who is diagnosed with TNBC that it does not matter what type of Breast Cancer you have, it needs to be treated. So find the best doctors available, ask questions, phone a friend, Sleep as much as you possibly can, stop trying to be so brave, laugh at yourself, and remember to live ..Your here, so try to live . That's what got me through, I went on vacation, went to picnics, weddings, baby showers, and work, I had that glass of wine and some days I tossed all the vitamins I thought I needed….I cried, sometimes very hard, and I laughed…. I tried to the best of my ability to put my health in my doctors hands. That was so very hard for me, I am a control freak. I need to control everything. But I could not fix myself. I somehow made a promise to myself, I have this one life, I needed to go live and let the doctors fix me. Take your treatment just like I did, day by day and hour by hour, because looking any further ahead makes it all way too hard

I still trek down to Penn every 6 months since 2001. My life is forever changed by this illness called breast cancer.But I have grown to learn that I am not in control of this and so I must try and put it down , turn it off and go live this fabulous life I was given.


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May 5, 2016 02:36AM Moderators wrote:

Charlotte, thank you so much for sharing!

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May 6, 2016 04:04AM lynncarr wrote:

I was diagnosed with TNBC in March this year, My PR is positive, but only 5% so I am being treated as triple negative. This has been a very scary ride for someone who is otherwise pretty healthy and with a mindset of someone much younger! I hadn't had a mammogram for 4 years due to insurance situations, so I guess I am lucky in that I was stage 1A (though Grade 3) and that it was caught early. I was a data researcher before I retired 5 yrs. ago, so I have been heating up the pc on this cancer. I hope char123 reads this as I was inspired by her post. I had the first lumpectomy and some DCIS In Situ was found in the margin, so I had a second surgery and it was removed leaving me clear. 2 lymph nodes were taken out and they were clear as well. I then had a PET scan and it was clear also. So technically, as of the date of the scan. I didn't have any more. Being naive about cancers, I felt I needed the radiology, but no chemo. I haven't had the radiology yet as I believe the chemo is first. I couldn't understand why I needed chemo when I was clear. I have benign microcalcifications on the other side.

I have since learned a lot more about TNBC. I have received 2 emails from department leaders of 2 of the top 10 cancer centers in the country. I was so blessed that they returned my emails!!! Both felt that my chance of recurrence was 1-3% and should weigh that against the toxicity of chemo treatments, and the possibility of getting it back even though I would go through the chemo. I guess I was floored that you could get cancer back after chemo.. Then I read even more to see how aggressive and recurring TNBC could be. I have been distressed about what to do for a week now. I learned that though my lymph nodes are clear, it can pass through blood vessels and that micro cells may not be picked up by PETs or other equipment. So I had ANOTHER up and down moment... The emails that kind of said it's a small chance (unless there were extenuating circumstances in my pathology reports) that it would recur, and then learning what Ki-67 meant (my emailers didn't know these numbers cause I hadn't talked to my doctor about them so I didn't think they were a big factor). I talked to one director of Oncology at one of those cancer centers and found out - cell proliferation. Over 20% is high and mine is 60%. The p53 (recurrence likelyhood) is 7% Favorable. So, I'm currently free by most indications, yet I've got bad "vibes" around me. I guess there is no other verdict for me other than chemo, which I have been fighting as you can see. I am scared about which side effects I will get. I was willing to travel to one of those nationally-recognized cancer hospitals and get a second opinion but now I believe I have to have it. Char123, if you read this, yours was the first post I read and it helped a lot. Thanks. Would love responses from anyone...

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May 6, 2016 11:23AM Moderators wrote:

Welcome, lynncar! Sorry you are here, but wanted to say that we're so glad you've found our community, and hope you find the information and support your seeking among us.

Thank you so much for sharing your story. Would you be able to send us a photo to go along with it? It doesn't necessarily have to be a picture of you, but can be something that represents you, if you wish to remain anonymous. And you can either post it here, or send it to Moderators via Private Message. Let us know if you need help doing this!

Best wishes,

The Mods

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May 6, 2016 11:51AM blamoms wrote:

Hi I'm Lisa. I am 40..I was diagnosed as triple negative in January. I have currently finished AC Chemo and I am now doing weekly Taxol. I have 9 more to go and then 3 weeks of radiation. I had a lumpectomy in Dec and they removed 3 lymph nodes which were clear my tumour was 3 cm. I had genetic testing done and my cancer is not heredity. I have cancer in my family tree but no one has had breast cancer. I am brca 1 and brca 2 negative.


It was hard to hear I was triple negative. When you research it all you hear is the negative. It's really scary but I know I am going to beat this. This is just a bump in the road in the road of life


Dx 12/10/2015, IDC, Right, 3cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 12/30/2015 Lumpectomy: Right; Lymph node removal: Sentinel
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May 6, 2016 03:21PM Moderators wrote:

Thanks All so much! Your experiences and inspirations will greatly help others! Please remember to add a photo that best represents you!

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May 6, 2016 06:44PM - edited May 24, 2016 01:53AM by carjeanne3

I was diagnosed December 11,2015 at age 45 initially with DCIS .When my appointment with the surgeon came I had another tumor in same breast now Invasive DC with what they called a halo of pre cancer. They also informed me that it was stage 1 grade 3 TNBC with a ki67 of 97% .I was told I needed a bilaterl Mastectomy, which I had January 21st 2016. Feb. 7,2016 I came down with an infection (MRSA) in left breast so I had to have surgery to remove the left expander. I am currently getting chemotherapy I am now on my 3rd round of CT

I have lost my eyebrows and hair, luckily I still have my eyelashes. I am afraid due to high proliferation of 97. I am fortunate enough to not have many side effects. I have a great support system . I know this experience is rough, but I am determined to get through this stronger and definitely more educated.

Dx 12/11/2015, IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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May 7, 2016 12:34AM - edited May 7, 2016 12:35AM by Moderators

Thank you for sharing, Carjeanne3! Please add a photo to include with your story!

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May 7, 2016 03:01AM LRM216 wrote:

Hi, I'm Linda:

Have been on this site since my triple negative diagnose in February of 2009. Thought I knew so much about breast cancer but upon diagnose quickly found out how little I really did in fact know. When my biopsy came in and I was informed I was "triple negative" I was completely in the dark as I had never even heard of it. Of course I went home and googled it for hours and hours and never stopped crying during my researching of this horrid, aggressive ugly disease. The feeling of dread and fear that became my daily companion, on top of my diagnose and treatment, was something I often thought I could not bear - but I did - as we all do.

Seven years later, I am still here, and so very grateful for the healthy cancer-free years I have enjoyed and pray I continue to enjoy. I don't post much any longer - too busy living my life - but I always check in weekly, and should I ever read a post from someone that I might be able to help in some way, then I most certainly do. This forum held me up and carried me through such a dark time of my life - and like my new "normal" - I could never live without it.

A million thanks to Breastcancer.org for giving hundreds of thousands of us the ability to hold each other's hands when it has been much needed.

Life isn't about waiting for the storm to end, it's about learning to dance in the rain ... Age 62 at diagnose Dx 2/23/2009, IDC, Right, 1cm, Stage IB, Grade 3, 0/1 nodes, ER-/PR-, HER2- (FISH) Surgery 3/6/2009 Lumpectomy: Right Chemotherapy 4/24/2009 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Radiation Therapy 10/20/2009 Breast
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May 7, 2016 05:18AM - edited May 9, 2016 08:14PM by Meadow

Hello, I have Triple Negative, Inflammatory Breast Cancer. I knew very little about TN breast cancer, and had never heard of IBC before my diagnosis. I had AC and Taxol chemotherapy, starting 11 days after diagnosis. It was a whirlwind in the beginning. I was thrust into a fight for my life. I have a terrific team of doctors and prayers warriors helping me win this fight. I am thrilled to say I am NED, no evidence of disease! I have found Breastcancer.org to be a blessing. I have connected with women and men too, who help me in this journey with information, laughter and friendship. And I love the Mods for keeping the site a highly professional, yet personal, safe place. Thanks Mods!

I work as a substitute teacher, which I enjoy so much....here I am waiting for my 8th grade girls PE class!

Dx 8/15/2013, IBC, ER-/PR-, HER2- Chemotherapy 8/26/2013 AC + T (Taxol) Radiation Therapy 2/11/2014 Breast, Lymph nodes Surgery 1/15/2017 Reconstruction (left)
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May 7, 2016 11:46PM - edited May 13, 2016 03:59AM by LoveMyVizsla

In August 2015, I was having pain in the lower, outer quadrant of my right breast. I went for my mammogram in early September, but the machine couldn't see anything, even though a lump was easily palpable. An ultrasound found not one, but two lumps. One was IDC, the other was DCIS. I had enough time between my biopsies and my first oncology appointment to do some research. At my appointment, the oncologist gave me some information that I knew was incorrect for Triple Negative. I asked how many cases of TN he sees per year: 5 ( I live in a town of 20,000). I already had a second opinion appointment at Seattle Cancer Care Alliance for a week later. I was much more reassured by the team of doctors and nurses that I met there.

As you can see in my stats, I had surgery first, in December of 2015, and am still making my way through chemo. I have a pre-existing auto immune condition, which my oncologist says may have allowed the cancer to grow. Because of that, my white counts run low to begin with, so chemo is taking longer for me, and I am taking bone marrow stimulant injections, even with taxol.

While my surgeon got clear margins, they are very narrow. Therefore, I will be having a re-excision in August for wider margins, before beginning rads in September.

My message to all women out there is to do your own breast self exams, don't trust the machine. And breast cancer lumps can be painful--that's how I found mine.

I haven't let treatments keep me from doing the things I love, like hiking with my husband and dog, and nature photography.


Diagnosed at 51yo Dx 10/5/2015, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Dx 10/30/2015, DCIS, Right, 3cm, Stage 0, 0/4 nodes Surgery 12/10/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 1/15/2016 AC + T (Taxol) Surgery 8/10/2016 Radiation Therapy 9/6/2016
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May 8, 2016 08:37AM Moderators wrote:

Thanks so much LovemyVizla and Meadow for sharing your story here.

Meadow, if you have a photo too, that would be awesome!

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May 8, 2016 12:21PM - edited May 8, 2016 12:23PM by NancyHB

Hi, I'm Nancy. I've been a member of BCO since late 2011, when I was first diagnosed with Stage I Grade 2 IDC. I had four nodes with isolated tumor cells but no micromets so we felt really positive going forward. My oncologist called it "garden variety" breast cancer and figured it would be easy to treat. The Oncotype test came back with a recurrence score of 42, which allowed me to participate in a chemotherapy clinical trial. I completed four rounds of AC and 6 rounds of dose-dense Taxol, and then 30 rounds of radiation. I remained cancer-free for four years, and my MO and I were on our way to calling it "cured." I struggled to get past this experience, but after four years I made peace with my cancer and was moving forward with joy and peace and love.

A few months ago I found a lump in the same location as my previous cancer; surprisingly it was a local recurrence that was now TN. In the back of my mind I worried about local recurrence, but never knew things could change so dramatically - it wasn't one of those possible scenarios my MO ever explained. I sought a second opionion at the Univ. of Michigan, and they explained that my previous cancer was 50% ER+, and only 10% PR+. Their thought is that some of the ER- and PR- cancer cells had survived chemo and radiation and waited around to start growing again as TNBC. Chemo was required; standard of care is AC but I'd already had the lifetime maximum so I'm completing Taxotere and Cytoxan (4 of 6 done!). Because I've already had radiation I will have to have a mastectomy later this summer.

It's hard enough to wrap my head around a recurrence; it's even harder to comprehend the change in hormone status. My MO has "concerns" as he puts it, but still believes this is treatable and potentially curable. I avoid the internet and reading the "negative about the negative" because I believe that treating and healing my mind and spirit is as important as my body. I have faith in my team that they're doing everything they can for me, and I'm working to hold up my end of the bargain - diet, exercise, yoga, and lots of living.

A wise friend once told me, "Every day is a good day; some days are just better than others." That motto keeps me moving forward when days are tough. I'm still here, still moving forward, still determined to beat this.

"Be happy for this moment. This moment is your life." - Omar Khayyam Dx 11/22/2011, IDC, Left, 1cm, Grade 2, ER+/PR-, HER2- (FISH) Surgery 12/5/2011 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/19/2012 AC + T (Taxol) Radiation Therapy 6/12/2012 Whole-breast: Breast, Lymph nodes Dx 1/27/2016, IDC, Left, 1cm, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 2/15/2016 Lumpectomy; Lymph node removal: Left Chemotherapy 3/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/21/2016 Mastectomy: Left; Reconstruction (left): DIEP flap Dx 1/31/2017, IDC, Stage IV, metastasized to bone
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May 8, 2016 12:40PM - edited May 8, 2016 12:40PM by Moderators

And we love your attitude!! Thank you for sharing, Nancy!! Heart

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May 8, 2016 11:14PM JPFlower wrote:

Anyone on here dealing with Tamoxifen? I had triple negative breast cancer and apparently estrogen positive breast cancer in my lymph nodes. Trying to find an active group on here discussing it. The one I found was from 2011. Happy Mother's Day ladies!

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May 8, 2016 11:23PM Moderators wrote:

Hi JPFlower, and welcome to Breastcancer.org!

You can try also in the following forums/topics:


If you have any questions or comments for us, do let us know. We're always here to help.

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May 9, 2016 02:51AM - edited May 9, 2016 03:01AM by Fiercer

My story starts with me being 45, recently divorced, sending my only child and daughter off to school. I had moved from a big house into a penthouse apartment with my new boyfriend and started a new job at a dream company. It was November of 2012 and I found a lump, I had never felt before. Thought it was a new cyst since I have those. I went to the Dr in January, took that long to get an appointment. I received the diagnosis on Valentine's Day. Triple Negative. I was told by the radiologist that if you were going to have cancer, this was a good one to have because it responds well to chemo. I went to the local hospital and didn't like the Dr. She wanted to cut first. I ended up with Dr.s from the Lacks cancer center and my care was fabulous. You can read my stats below. By the end of August there was no evidence of disease. It's the result you want, that makes the Dr. Smile and say this is the outcome we hope for.

I know I am lucky and blessed. The good things that came from it was reconciling with my daughter. We had been at odds since I divorced her Dad. Realizing that my lover/boyfriend was in my life for the long haul and I needed to live again. I'm glad I had it as I would never want to see my mom or daughter go through this. I'm strong, I'm tough as nails, I worked all through this ordeal and took off a total of six days. One was to get a blood transfusion. I was a bit nervous about that, but I left the hospital dancing!

It's been over three years since I was diagnosed, about 2 from being cancer free and 1 for when I feel like me again. I have neuropathy and on going joint pain that the Dr.s can't figure out. It's a deep ache and nothing gets rid of it. I have learned to live with it. I also had early menopause. Luckily my Drs in Ann Arbor let me take estrogen and progesterone. I have very few hot flashes now.

I don't associate with 'pink'. That frenzy is something I stay out of. I prefer to figure out how I go on with my day to day without looking over my shoulder. I visit here only to help where I can and let people know you can survive this and continue with a great life if you can focus away from what happened. I also visit to hear the stories of others when I feel low.


Thank you for listening and being there for me!


The first pic was in January of this year, the bottom one was 1 year after treatments were done

Dx 2/14/2013, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (DUAL) Chemotherapy 3/14/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 6/7/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/15/2013 Breast, Lymph nodes
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May 9, 2016 09:49PM - edited May 9, 2016 09:51PM by Nordgirl

Hello all you triple negative ladies and their supporters. I was diagnosed with TNBC on April 13, 2016. Naturally my first thought was to show the doctor my full Iphone calendar and tell him I have no room for this nonsense!!!! However given the seriousness of the "triple threat" I listened quite intently and wiped my calendar clean for the next 5 months, believe me when I tell you it was the hardest thing to do having 4 children a hubby(man child) and a lot of extra-curricular activities!!!

We are starting this journey with the best doctors in Newport Beach, ca. We are traveling about an hour from home each week but well worth it!!! Recommendation #1, if you are able to, do your research on who the best Breast cancer surgeon and oncologist is around you!! Make sure you go to a breast cancer center!

Onto the good stuff....I am currently in chemo as I am writing to you today! My chemo plan is 5 months, once a week for 12 weeks of taxol/carbo plantin and then the "red devil" Ac for 8 weeks every other week! I know it sounds grueling and it will be but if I want to be CANCER FREE for the rest of my life I am trusting in my doctors and MY FAITH!!! Recommendation #2 whomever or whatever you believe in stay strong and allow him/her/it to keep you positive that this is only a road block in your walk of life and that he/she/it will carry you over that BIG BOULDER CALLED TNBC and put you down gentlyon the other side stronger so you can continue life's journey!! Here to talk....have FAITH and stay strong!!! To be continued.....

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May 11, 2016 05:34PM - edited May 11, 2016 05:36PM by Boobutterfly

Hi, I am 6 weeks post chemo of Taxol & Cytoxin. I was treated for triple negative breast cancer begining January 2016 - March 31st was my last treatment of 4 cycles. I didn't have to get radiation. I recieved a full left breast mastectemy. Thank God my lymphnodes & margins were clear. Although I lost all my hair I felt lucky enough that all my eyebrows didn't fall out nor my lashes. However, now I've completed my treatment my lashes are falling out, my eyebrows look thinner & my hair hasn't started to regrow. I was looking forward to everything coming back after 3 weeks. I believe I read that somewhere & its not. When does the hair & my lashes, eyebrows start to regrow? I've overcome a lot but I'm ready to ditch the hot itchy wig & all the makeup. I want to be myself again.

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May 12, 2016 04:38AM Tootsiek wrote:

Char123, thank you so much for your post, it was very inspirational and you give me hope that I too can beat this. I was diagnosed with tnbc in January of this year, 5 days before my 59th birthday. I am stage lla, with a 3.2cm tumor. I began chemo February 3rd with 4 bi-weekly rounds of AC, which I tolerated pretty well, although the first one put me in the hospital due to elevated heart rate for observation. Today I had my 7th of 12 weekly taxol. I have had very few side effects and have been able to continue to work at my part time job, take daily walks and go out with family and friends. I was a very active on the go person before dx, this has changed my lifestyle a bit though. I have become obsessed with germs and keeping my blood counts up. They are still good, but have been dropping the last few weeks, I am so worried about having my treatment delayed that I am making myself and everyone around me crazy. I too am a control freak, I have my bad days when all I want to do is cry.

My tumor is responding very well to the chemo, my MO cannot even feel it, she is very optimistic. I will be having a lumpectomy mid July if chemo progresses on schedule, then will have 5 and half weeks of daily radiation. I have gotten nothing but good news during chemo, I am doing a lot better physically than mentally and not sure why I can't get my mind wrapped around this. I have the best husband who has been there every step of the way and goes above and beyond to take care of me, as well as the best daughter ever. She lives 1000 miles away and comes home once a month for a week to take me to chemo and spend time with me, she is an only child and we are extremely close. Needless to say each time she leaves I have a meltdown. My lifelong best friend has also been with me every step of the way and was my lifeline in the beginning when I was on the AC and working to get my heart rate in check? I also am blessed with a great support team, the outpouring of support has been so very humbling, there is no reason why I am struggling mentally. My MO has even cut my infusion day steroids down to 4mg, she has also given me a minimal dose of anti anxiety meds, but really don't think they help. I do have many great days, but need to get this anxiety under control, as I feel like it is taking over. I have a strong faith in God and my medical team. I am very thankful for my life and the multitude of blessings I have. I know I have no control over this and need to relinquish control and worry over something I cannot change. I wish everyone the best on this journey that none of us asked to be on.

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May 12, 2016 10:08AM Moderators wrote:

Thank you so much Tootsiek for sharing your story here.

It would be wonderful if you had a picture to share with us also.

Hugs,

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May 13, 2016 12:19AM - edited May 15, 2016 03:09PM by MsKiKi17

Hello. I initially discovered the lump in my breast in December of last year. I thought it may have been a fibrocyst, since I already have them in both breast. In January I decided to schedule an appointment to see exactly what was going on. My last mammogram was June 2015. At the appointment I had a mammogram of both breasts then I was whisked off to the ultrasound room where a radiologist was waiting for me. She checked the right breast first, measuring "something in there" (I'm thinking to myself this is not good, the area I felt was on the left side". I, being of the medical profession, watched the monitor too. She then checked the right and began measuring something in there. This area looked very different from the area on the other breast. She then told me I had fibrocyst in my right breast and the area in by left breast looks like a fibrocyst, but it is a little different. She decided she needed to try to aspirate any contents and then to biopsy it, which she did both. She advised me she would have the results back by the next day. I had to work that day and decided to follow-up two days later. I arrived to the appointment not knowing what to expect. She brought me into the room and gave me the bad news. I cried and she consoled me. I wish I had someone there to support me. I kept all of this private. After I left the appointment I called me friends. I needed to tell my mom, husband, and children in person. Enough of the background story.

I am 45 years young and I was diagnosed with Invasive Ductal Carcinoma that is IIA, Grade 3, TNBC, and BRCA1/BRCA2 (-). The mass measured 3 cm.

I started AC treatment on March 3rd. I experienced a lot of side effects. One side effect they were not expecting was tingling in my sinuses. The Cytoxan caused an overwhelming tingling sensation in all of my sinuses. The administration frequency had to be increased to alleviate this symptom. Nausea lasted for 4 days. The AC treatment ended in April. I was glad about that, but was anxious about how the new meds would make me feel.

April 28th, I started Taxol and Carboplatin. I'm happy to say that I have not had much nausea, but I have had other side effects though. This includes fatigue, constipation, dry mouth, mouth sores, muscle pain, joint pain., and numbness in my hands.

Today I went to the infusion center to receive the 3rd dose of 12 of these new medications only to find out, I could not receive them. My blood counts are too low. I have a week of rest. One positive from that appointment, the mass is now measuring about 1 cm.

We'll see what happens next Thursday.

Dx 1/29/2016, IDC, Left, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Chemotherapy 3/2/2016 AC Chemotherapy 4/27/2016 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 9/8/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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May 13, 2016 12:51AM - edited May 13, 2016 01:00AM by knitnpurl

Hi all. I was diagnosed with tnbc almost one year ago (June 2015). I had gone to my ob/gyn for my annual check up and got my referral for a mammogram. I was 39, have no family history, and had no problems before so I was surprised. Even in the breast check at my annual, nothing was felt. I thought it would have been at least one more year before I started going for regular mammograms. Being the good "do-bee" that I am, I scheduled the mammogram anyway. When I was there, the tech noticed something and immediately took a few more local x-rays and then sent me back for an ultrasound. That resulted in a call back for a biopsy. They found a 1 cm mass that was triple negative.

We had a trip to California already scheduled for the second half of June. My doctors all agreed that this delay would be all right and to go ahead with our vacation. This turned out to be the best choice. It really gave us some nice family time together away from home.

I decided to get my treatment at Moffitt Cancer Center in Tampa. There I met with my surgeon and they immediately scheduled me for another mammogram. They found that the mass was actually 3 cm, found another 9 mm mass, and an enlarged lymph node. In subsequent visits, they biopsied the node and that was positive too. I had an MRI which found 3 enlarged nodes; a bone scan and a CT scan which confirmed that the cancer hadn't spread past the areas we already knew of. I also decided to do genetic tested for the BRCA mutations. I knew that if it came back positive I would get a double mastectomy, no questions asked. But if it was negative, I really wasn't sure if I would get a single or double mastectomy. Since we were waiting for those results, my doctor told me to start with neo-adjuvant chemo.

I met my medical oncologist in my city. He put me on the standard care, dose dense adriamycin, cytoxan, and taxol. My first chemo was on August 17. My cancer had grown enough that it could finally be felt. Within two doses, the mass noticeably softened and started to shrink. I got an awesome wig that was the hair I'd always wanted, just not this way! After my four doses of AC, I had another ultrasound. This showed the larger mass was down to 1 cm. I decided that I didn't want to do dose dense taxol and preferred to have 12 weekly doses with my doctor's approval. I was very worried about neuropathy. I did icing with gel gloves and booties and took l-glutamine and vitamin b complex supplements. I did get some neuropathy in my feet, but it's mostly gone now and didn't get any in my hands.

I had a single mastectomy and axillary node dissection on February 9, 2016. Surgery went very well. The pathology showed they had taken 22 nodes out. Two were pcr for cancer. The larger mass in my breast showed that it had shrunk from 2 cm to 1 cm and had clear margins. I then started radiation at the beginning of April. I've had 25 doses of radiation and 8 boosts to the scar. I have four more to go.

I wasn't active at all during chemotherapy, but since radiation started I've done a mile walk every day. I've lost ten of the twenty pounds I gained between steroids and emotional eating. There's one teacher in town who does a cancer for yoga class. I've started going to that weekly and it feels really good. I've also added acupuncture recently. I'm feeling much better, but I'm giving that time.

My sons were 7 and 4 at the time I was diagnosed. We've kept them informed about everything that I have gone through. We've kept it in simple terms they can understand and only told them about each treatment right before I was set to start. They couldn't handle the long term view of all of this. My older son did come to understand the seriousness of it and has come out with some statements that have broken my heart and shown how much he's grown up.

Because I had that residual cancer, my medical oncologist wants to start me on Xeloda after radiation because of that Japanese study that was announced at the San Antonio Breast Cancer conference. I'm all for throwing everything at this, but I'm not looking forward to having more chemo by any method. I'm afraid of the fatigue and other side effects. I'm afraid of losing what I've gained back for my life - feeling healthy, taking my kids to places. In my head, I know that the chemo could help me keep those things for whatever time I have left, but it's so exhausting.

I've used a support group on Facebook and have found the various boards here on breastcancer.org that relate to whichever treatment I'm going through to be very helpful. It was here that I learned of people doing icing. My doctor was ok with it, but seems to believe that while it wouldn't hurt, it wouldn't help either. I don't know if it did help, but if I hadn't done it and developed neuropathy I would've regretted not doing it.

In addition, one of the best sources of support was another member here on the boards. She pm'ed me because we had a similar diagnosis. We ended up friends on Facebook and sent each other tons of messages through there. Our treatment schedules were about the same, though I was a little behind her. I'm forever grateful for her friendship. I'm hoping that one day I'll be able to meet her in person.

I also can't forget my husband and boys. They are my world and have helped me fight twice as hard. My husband's job required him to travel, but since my diagnosis he's been able to work from home and his employers have been so supportive of him, allowing him to be there for me.

Dx 6/2015, IDC, Left, 3cm, Stage IIB, Grade 3, 2/22 nodes, ER-/PR-, HER2- Chemotherapy 8/17/2015 AC + T (Taxol) Surgery 2/9/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 4/3/2016 Whole-breast: Lymph nodes, Chest wall Chemotherapy 7/26/2016 Xeloda (capecitabine)
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May 13, 2016 05:33AM Survivor2Be wrote:

My diagnosis of TNBC was in 2010. I was 33 years old and just finished breastfeeding my third daughter. I thought my lump was a plugged milk duct. By the time of biopsy, is was stage 2c, IDC, ER-/PR-/HER2-, grade 3. Having no idea what these meant except aggressive, instartedcdoing tons of research. Breast cancer.org esa a gatear aire yo help me understand what was going on. I ended up doing chemo first (AC+Taxol), the a bilateral mastectomy with sentinel node biopsy. Turns out 1/6 was positive, so added an axillary lymph node dissection and removed another 5. Then was told I needed radiation. So go implants placed in my skin sparing BMX and started rads. Tumor grew back in a local recurrence while receiving radiation, so: lumpectomy and more radiation. But now tumor is HER2+. Start herceptin and get a migraine. Brain MRI shows brain metastasis 2cm tumor!! Dang! Surgery to remove followed by whole brain radiation.

I wanted to be as throrough as possible. My babies were 9, 4, and 2. I wanted to be around for as much time as possible. And, would you believe it, my scans started coming back clear! No more growth, everything stable! Stopped herceptin and did reconstruction! 4 years with no evidence of disease. It was truly a blessing to have that time.

Unfortunately, in 20015, a tumor popped up deep in my chest wall: no surgery available. Chemo didn't hit it. Brain MRI: 34 brain metastastic lesions. Did gamma knife. Tumors grew and new one came on, did another gamma knife and currently waiting on results. Started new chemo, which hopefully will control things and hoping to get started in a clinical trial.

This disease really makes you look at your life and how you want to live it and be thought of l, or remembered for. It makes me appreciate the many blessings I have and helped me stay positive in my continued fight.

I think breast cancer.org and the discussion boards are so helpful for so many people. I'm so glad I found this site!

Andrea Dx 10/28/2015, IDC, Left, 2cm, Stage IV, metastasized to brain, Grade 3, 1/11 nodes, mets, ER-/PR-, HER2-
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May 14, 2016 03:39AM LoveMyVizsla wrote:

Hugs for you, Survivor2Be

Diagnosed at 51yo Dx 10/5/2015, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Dx 10/30/2015, DCIS, Right, 3cm, Stage 0, 0/4 nodes Surgery 12/10/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 1/15/2016 AC + T (Taxol) Surgery 8/10/2016 Radiation Therapy 9/6/2016
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May 14, 2016 05:08AM Survivor2Be wrote:

thank you!!

Andrea Dx 10/28/2015, IDC, Left, 2cm, Stage IV, metastasized to brain, Grade 3, 1/11 nodes, mets, ER-/PR-, HER2-
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May 14, 2016 05:27AM PoolaV wrote:

Hi, My name is Paula. I was diagnosed with TNBC in March of this year. It was recommended that I begin with chemo first, then surgery followed by radiation. I had my fourth AC treatment two weeks ago. My oncologist had me get an ultrasound yesterday. I was so excited that they could not find the tumor which was quite large. I am curious to know if I still will need to do the Taxol chemo and if surgery and radiation are still necessary.


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May 14, 2016 07:14AM - edited May 17, 2016 04:59PM by Moderators

PoolaV, thank you for sharing! It sounds like your treatment is showing promising results!

To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 14, 2016 01:32PM - edited May 26, 2016 09:37PM by Moderators

Thank you so much for sharing your story. I needed to hear or read a good story. I was ER positive in 2012 and now TPNB. Going through chemo now and managing. I hope I have a happy ending story to tell 5 yrs from now. Thank you so much!

Triple Negative Member Stories

Medicating

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May 14, 2016 09:39PM Rhiannon426 wrote:

Hi I was diagnosed with triple negative breast cancer stage IIA level 3 March 19th 2015. I had AC-T chemotherapy starting May 15th and ending September 25th 2015. After all that I have had 2 CT scans the first came back great. Last week I got the results of my second CT scan and they found an ill-defined sub 4 mm pulmonary nodule in my left upper lobe. Where in the previous scan they saw a small linear opacity.

The doctor tells me not to worry and that she will schedule another scan in 3 months.....how can I wait that long? So I am going to see if I can get a second opinion to speed things up. Am I overreacting? How can I not worry?

Dx 3/19/2015, ILC, Right, 3cm, Stage IIA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 4/15/2015 Mastectomy: Left, Right; Prophylactic mastectomy: Left Chemotherapy 5/14/2015 AC + T (Taxol)

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