Though 1 in 8 women will be diagnosed with breast cancer in her lifetime, nothing about the experience feels normal. While every individual and every cancer are unique, we can all agree that breast cancer has a lasting impact on patients, survivors, and loved ones.
Shannon provides a candid glimpse into her journey with dense breast tissue and a triple negative breast cancer diagnosis. She faced breast cancer shortly after turning 40, with the support of her husband and community, while caring for her two young daughters. Shannon is the Head Drill Team Director at Highland Park High School in Dallas, TX. Only a couple months out of treatment, her memories are still fresh.
I thought I knew a little bit about breast cancer, so I didn’t worry too much when I felt a small lump in the shower. I’d had a mammogram within the past two years, and I’d had benign issues prior to that. So I watched the lump for a few weeks—a few weeks longer than I should have.
The doctor at my first visit told me that I had an 80% chance of the lump being absolutely nothing, but we’d just check it out to be sure. The radiologist at my follow-up mammogram was concerned. But later that week, the doctor who biopsied me said the areas of concern looked benign to her. Lab results proved otherwise, and a day or two later, I got the dreaded phone call.
I want to share the following information not to frighten anyone, but to empower you with the knowledge I wish I’d had:
1. Most people who are diagnosed with breast cancer do not have a strong family history of it. They also often do not carry any genetic disposition for it (BRCA1 and BRCA2 gene mutations). I didn’t have either of these.
2. Dense breast tissue is very common, but it shouldn’t be dismissed. My oncologist said that looking at the breast tissue of someone with dense breasts is like reading the mammogram through fog. If you’ve been told your breast tissue is dense, do more regular breast self-exams to know your body and strongly consider following up 3D mammograms with ultrasound, if you have the means.
3. There are many types of breast cancer. Hormone-positive breast cancers are usually the ones you hear about. I was diagnosed with triple negative breast cancer. This means that the growth of malignant (cancerous) cells was not promoted by estrogen, progesterone, or the protein HER-2. Doctors don’t really know why you get this aggressive type of breast cancer yet, but if you are around my age or younger, please hear this—although triple negative is a rare type of breast cancer, this is more likely to affect younger people, African Americans, Hispanics, and those with a BRCA1 gene mutation.
4. Triple negative breast cancer is aggressive. Unfortunately, it often grows fast, even in the time between annual mammograms. While I may have had cancer cells in my body for some time, it is likely they would have only been detectable on a mammogram for a few months. Had I waited another month or two before beginning treatment, I could have been looking at significantly advanced disease. Don’t watch or wait on lumps for months at a time. Insist on screenings. Time is more important than we realize.
By the way, I wasn’t doing a self-exam in the shower when I found my lump. I rarely did self-exams. It was a very unexpected “coincidence” that occurred while soaping up my underarm. Some days, the lump felt like a little piece of gravel. Other days, it seemed more pliable like a soft pea. It didn’t feel like I thought cancer would.
5. Treatment for breast cancer varies based on the type, stage, and growth rate. Some require lumpectomy only. Some require lumpectomy or mastectomy with radiation. Others get all that, plus lots of chemotherapy and sometimes immunotherapy. Triple negative breast cancer is different than most—patients aren’t able to receive hormonal therapy, which can help prevent recurrence from happening. We treat our cancer with chemotherapy before and often after, as well, in order to reduce the chance of any errant cells surviving the treatment or taking up residence in other parts of our body. Bottom line: you could have two friends with breast cancer, but they might have vastly different treatments and prognoses.
6. Breast cancer in men is rare, but not as rare as we’d like to think. Men need to monitor their bodies and breast tissue as well—maybe even more so without the benefit of recommended mammograms.
7. Nurses and doctors are exceptional, and they save lives on a daily basis. Cancer patients LOVE their doctors and nurses in a way I never understood before my own diagnosis. I’d do anything for mine.
I had my last reconstruction surgery on July 9th, so I finally feel as if I’ve “finished” my breast cancer treatment. While I will be monitored closely for years, and I will likely panic over every new twinge for the foreseeable future, I can’t believe that I finally get to say that it is hopefully over.
I recall sitting in my car one day asking God to give my journey purpose. If this was to be my story, let it radically change my life and let me somehow use it for good. I had several survivors (friends and friends-of-friends I’d never met) who led me through this experience like only someone who’s “been there” can, and I’ll never forget it.
I found that the trauma isn’t in the treatment, although the treatment can be rough. The trauma, honestly, is the diagnosis. The word “cancer”. It’s coming face-to-face with the reality of your mortality.
If I flash back to Friday, February 15, 2019, the day of my diagnosis, these are the things I wish I’d known before the phone began to ring. And even further back, I wish I’d understood the value of regular self-exams for a woman of my age, breast density, and health history. Stop now and set the reminder alarm on your phone. Do your breast self-exams and then do your part by sharing the information with your friends.
I wish there was a support group just for tnbc . This article was great.
Facebook has many support groups for TNBC patients
Id like to know of support groups fpr tnbc Having others to talk to would be great Id appreciate encouragement from others with tnbc My breast cancer recently changed to triple negative which is scarry to me
Congratulations! We all hope to get there.
What stage of tnbc did you have? Just had lumpectomy with node dissection. Negative nodes. I see oncologist tomorrow. I am 71 and I don’t fit the profile but I do have it. Your article is a blessing. Ty Michele
Thank you for this article I’m 60 and just had surgery for triple negative
They day I got diagnosed my life changed
I only pray for strength and a journey to share with others
My mom was just diagnosed with stage 4 triple negative breast cancer. We want to look at natural therapies for her. Any suggestions?
Please read about vegan diets.
Also, the effect of the amino acid methionine on breast cancer. I have read that it could be helpful to eliminate it as much as possible from your moms diet
Check out the Stage 4 TNBC Facebook groups and try to find a leading research hospital in your area. In my opinion (and most experts), natural therapies should only be used when you’ve exhausted all other medical options. TNBC is very aggressive and you don’t want to waste valuable time trying something that has very little evidence of working with TNBC patients.
Thank you for those words of truth.
I am a final semester grad student in Health Advocacy. My final project is a survey of TNBC patients which asks if there should be survivorship programs dedicated to TNBC and if you were offered a group such as this when you were finishing treatment. Would you be willing to complete my anonymous survey? I’d love to include as many TNBC survivors as possible!
Thank you,
Sarah
Yes, please! There isn’t enough out there for TNBC…even less for metaplastic TNBC (my diagnosis). I remember feeling so alone and scared when first diagnosed because the little I found about this type screamed “aggressive” and “rare”. The more info out there, the better!
I was officially diagnosed with tnbc in February 2021 after the medical pathology came back . In December 2020 I had my yearly mammogram done. Doc saw something supicious. I was called back for ultrasound. The ultrasound confirm the cell looked supicious. An autopsy was perform, diagnose metaplastic. The hospital Breast Center coordinator andy GP Called me with the news. Needless to say I was petrified and at work. Image that and trying to stay calm. My GP recommended me to a Highly Skilled Breast surgeon who had extensive training in the United States and abroad. He performed surgery first due to certain technique he gain while training abroad. He recommended me to a Medical Oncology and radiation because my diagnosis was aggressive and rare. Rare because they don’t see it as often as the common types of Breast Cancer. chemotherapy followed. My Oncology presented my case to the board and the decision was made to use Docetaxel (Taxotere) and Cyclophosphamide(Cytoxan). I made it through 4 round without any major problem. Waited a month for radiation to begin. It was 6 weeks Monday through Friday. Didn’t think I could do it, I did. Now it’s wait and see, especially the next three years. I followed up with my Oncologist Last week. He provided me with a Script for a scan for my appointment in October. Then he will lay out his plan of care Like you I venture onto the internet after my diagnose and stressed myself out. Before my chemo started members of the pharmacy came in to educate about the two medicaid. I was informed that patient that received those two are cured. I prayed to God that will be so. Our diagnose is frightening and I agree there is not much out there. But my radiation informed me that the Patient that do well with our diagnose are the ones that receive chemo and radiation. Hope my experience help you.
Kim,
Read my post under Lynn
Next week is my 5 year TNBC checkup, last one with my oncologist. My how time flies!
Would be most pleased to answer your survey as survivor/thriver. It’s been quite a journey of faith to recovery.
God is wonderful – it is so encouraging to read your post.. thank you!
Hi Beverly, I was just curious to know what stage where you diagnosed with?
Congratulations! We all hope to get there. I am just starting out. I’ve had surgery. Complete f chemo and radiation. Now it’s the wait. I go for my second scan in October.
I am really pleased to know that there is someone who has been surviving TNBC for 5 years, most people that I was reading their stories were diagnosed from 2018-2021.
It made me wonder if there is someone who survives for more than those years until I saw you post.
I’d be happy to fill out your survey.
Yes I agree there is not much updated information out there regarding Tnbc. Most of it negative.
Reflect daily with gratitude for any life extention you receive.
Brush tears, keep eyes open, breath spiritual.
Think you need to be strong? Nope, I feel humbled as a tnbc survivor.
Connecting with nature helps my emotional challenges.
Seeking peace in this world and after.
Keep moving & walking!!
Im so glad I found this site Knowing what I do know about tncb its agressive & harder to treat with less treatment options is constantly in my head Its comforting to hear from others living with tncb
Donna, that”s what create the fear of Tnbc. My diagnose is new 2021. It’s those words that frightens us all. The fear of the unknown. My radiologist say that I can be cute. But those 3 words aggressive and limited treatment is scary. I went to the Internet- BIG MISTAKE. So much negativity. My Doctor’s inform me to Stay off the Internet searching on that topic because TNBC patients has a lot to be hopeful for. There much research in progress, clinicals and new approvals. The two pharmacist that educated me to medication I would treated with, informed me that there was new drugs in the pump line and new drugs coming out everyday. As difficult as it is we as survivor’s have to stay positive in the mist of the unknown.
I understand. But there is hope for Tnbc Survivor’s. The aggressive and hard part is what keep women awake. I’m at the starti gate for the 3 year waiting time. I took up an old skill, knitting and keeping a normal routine. The waiting is tough. I find having a routine helps.
I am just starting this journey.
Was diagnosed February 16 (2021). I will turn 61 on March 25. I had a Superport insertion yesterday. Chemo to start 3/19. 4-6 rounds then will be a radical mastectomy. DNA shows no markers but my mom (91 and a 15 year survivor), her sister (died about 1994 as it had mastastized to all organs) and their mom (died at age 43 of a “brain tumor” late 1940s) all had it. So strange.
I am reading everything and anything I can find online to be prepared.
My body has fallen apart in the last several years as I have serious arthritis. Bilateral knee replacements, bilateral shoulder replacements. And in the last 4 years, achilles tendon replacement, cervical fusion, 2 lumbar fusions. I now have Flatback Syndrome which I will always have. I thought I was actually on the downhill side, able to take a breath or two……Wrong!
I did NOT go through all of that to be beaten by TNBC!
I am as ready as possible to fight. I have 2 beautiful daughters, a beautiful daughter-in-law and an amazing 3 year old grand-daughter as well as a super supportive husband, mother and brothers and an angel of a best friend (since I was 2 years old) to fight for and with.
I plan to garden again and keep chickens and goats.
My dogs and cats are by my side.
My amazing husband is always right here.
I am ready.
Lynn, thank you for your transparency. It’s truly touching.My mom was just diagnosed today. I’m so scared for her. She’s 59. She discovered the lump in November 2020 when it was grape sized. She had an examination scheduled to look into it, however, in December, she got COVID and was hospitalized and sedated on the ventilator for one month. In that time, her husband of 40 years, my father, suddenly passed away. I had to tell my mother the love of her life was gone via Zoom. It was horrific. She came home to recover and was prescribed oxygen as she relearned general motor skills. Amidst her other many post Covid appointments, she was insisted she get her follow-up mammogram. That appointment was 2 weeks ago. Since then, we’ve been on a hell of a ride. We’re awaiting an appointment with an oncology team to discuss treatment plan. I’m so anxious and scared for her. We’re trying to remain faithful. Your post bought fighting really encouraged me. Although my dad is gone, me, my 2 sisters, 3 nieces, grandma and host of cousins, aunts, uncles, and friends are going to fight with her. Sending you love and prayers.
Thank you for sharing your story. I did the same when I was diagnosed and asked God to show me once I was done with my journey who I could help. My daughter has already made a comment about how strong my faith is so if my journey brings those I love and others to God, I’m ready.
I’d love to be involved.
I to have a diagnosis of triple negative breast cancer and although I have remained positive from the first day and have responded really well to Chemotherapy I am now feeling like I’m not going to survive. I have a double mastectomy in a week’s time and then radiotherapy but I have just received the news that I have the BRCA 1 mutation and for some reason it has completely sent me into an emotional wreck.
I know every case is individual but all I want to know is can you survive this and live to be old or is it literally just waiting for that first 3,5 or 7 years? And then anything after that is a bonus? For the first time in 6 months I actually feel like what’s the point going through all of this if I’m not going to survive.
I almost feel like you’re given Chemotherapy an operation, radiotherapy and drugs etc just to kind of say that you’ve had everything available to you but really there’s very little point or reason to it because you’re going to die from Cancer anyway whether it’s in a year or a bit longer. I just feel its a death sentence either way.
I hate to put such a negative slant on this situation as I’m usually a very positive person but this is the way I’ve been left feeling.
I have struggled to find any support network specifically for TNBC in the UK.
Thank you so much Leanne
Leanne, thank you for being so open to reach out and share what you’re going through. You’re not alone. Our team is going to reach out to you via email.
Hey Leanne,
I so feel you. I am 29 years old. Underwent a neo adjuvant chemotherapy which did not help at all. So had to undergo a Mastectomy. Currently taking chemo and then radiation. I was also very positive at the beginning. But currently feeling very helpless. I also doubt if I’ll be able to live for atleast 10 years more.. If not, is there any use of all this..
I am so glad I came across this. My sister was recently diagnosed – she just turned 45 on the 4th. She noticed a lump in February. She called her doctor… she had a mammogram a few months earlier and he told her it was just a cyst. She did continue to question and finally biopsies were ordered last month. The last three weeks we have been on emotional rollercoasters. Her oncologist told her she thought she seen an additional spot on her MRI. She does her PET scan tomorrow and starts chemo Monday. Please keep her in your prayers I know God has this.
I was diagnosed with TNBC in 2018 July. Finished treatment has now been in NED since Jan 2019. It hasn’t been an easy ride and coping with the new norm after treatment has been challenging. I wish all those going through treatment all the best.
Thank you.
Diagnosed with Triple Negative Breast Cancer on August 11, 2021. Three clinical breast exams this year without palpable lump. Routine screening mammogram picked up new calcification prompting core biopsy. Biopsy revealed cancer. Family history positive- both grandmothers, one survived three bouts of breast cancer. Genetics negative for all known cancer genes. Currently undergoing neoadjuvent AC treatment 4 rounds to be followed by 12 rounds of Taxol, surgery and radiation. It is a long road. Faith is getting me through it. I continue to work full time through this journeya s I am the houshold support.
Just diagnosed at 63. Have only my husband for support at 72 and limited use of his arms due to a botched neck surgery. I am strongly considering no treatment and I know that means death. I have heard too many people who have gone through the chemo surgery and radiation only to have recurrence of TNBC within a year or two then die. I also cannot find real descriptions of the chemo side effects and what you are able physically do other than generalizations. Can you direct me where I can learn more? My oncologist kind of brushed me off when I said I was considering no treatment.
Hi Mary, Thank you for sharing how you’re doing currently and your very real concerns in regards to treatment options. There are a few common chemo side effects you can read about here. Full side effects can vary by individual.
Here are a few blogs that share different perspectives:
– What Helps During Chemo?
– “I Am Still Beautiful:” Paris’s Journey with MS and Breast Cancer; She shares how different radiation was from chemotherapy.
– Why I Never Dreaded Chemo
There are many resources available. Support groups can provide a community of survivors and those currently in treatment. For other breast cancer resources that can help, click here. We hope this helps! For any other questions you have, reach out to [email protected].
God bless all you strong women and keep your spirits up do all you can make whatever choice you must if you can do a clinical trial try it. I’m 71 I read all your stories and I’m also at the beginning with chemo,a very small tumor with a grade 3 aggressive cancer. I have to trust my doctors,we can’t go back,,yet to what life was before but we sure can make every day count good or bad. We are not alone or if we are we still can master enough God given strength to fight,eat what you can in chemo, try to walk to stay strong and lf your married and you have a loving husband well that’s great but it’d your fight, don’t be as independent as you can. I’m a widow strong on my own with two grown children who will help me during chemo but I don’t plan to make there life so complicated by my illness….I’m strong ill have some help but the more I do that I can do on my own is what I’m aiming for I don’t want people looking at me like my life is over,feeling sad or sorry for me…everyone is different but I have found the less people know about your illness the better off except your care team and one good friend. That’s my choice I wish you ladies God’s speed,don’t be to scared because that’s changes your happiness.. ,” be strong..Let’s roll !!! adapt and overcome.. God bless us.all.
I am 65 years old and have just finished chemo. I had surgery about 3 weeks ago. Lumpectomy and 3 nodes. I will be starting radiation soon.
Triple-negative breast cancer seems to be entering a phase where it is easier to treat. I was amazed at how well Keytruda worked for me. I was in a study that paired Keytruda with radiation at the beginning of treatment. The tumor shrank significantly in size in the first two weeks. There was actually a noticeable hollow in the side of my breast. Scans and labs from surgery are now seeing no signs of malignancy and I am ecstatic! Not done yet, but thrilled nonetheless!
Now I just need good strategies for how to keep it from coming back!