Cynthia's Breast Cancer Story: 'I got YEARLY Mammograms | The Patient Story

Cynthia J. had normal mammograms for 13 years without any signs or symptoms of cancer and was unaware she had a walnut sized tumor in her breast. In 2018, she got a letter that said there was something suspicious in her breast and underwent an ultrasound and biopsy. She was then diagnosed with stage 2B invasive ductal carcinoma breast cancer.

Her doctors told her the tumor may have been growing for 5 years, but was missed in previous mammograms because she had dense breasts.

Out of feeling alone and uneducated about her diagnosis, Cynthia began Learn Look Locate, a growing global community for those with breast cancer that champions cancer education and support.

In this conversation, she discusses the shock and uncertainty she felt when getting the diagnosis and the emotional toll it took on her. She describes the physical pain and challenges of recovery, including nerve pain, skin allergies, and stiffness and emphasizes the importance of reaching out for support.

Join Our Community:
Facebook: @ThePatientStory
Instagram: @ThePatientStory
Twitter: @patient_story
______________________________
Content in this video:
00:00 Introduction
00:47 I had no symptoms
01:25 Learning I had a walnut sized tumor
02:42 Getting an ultrasound & biopsy
04:19 Getting the diagnosis
05:29 Undergoing a double mastectomy
08:18 Radiation side effects
09:25 Survivorship
11:52 Starting Learn Look Locate
13:50 Words of advice
_______________________________

#thepatientstory #cancer #cancerstories #breastcancer #bcsm #breastcancerawareness #breastcancersurvivor #breastcancerresearch #mammogram #earlydetectionsaveslives #breastcancertreatment

[WestCoastGeoLover]

I am a bilateral mastectomy cancer survivor x 10 years: ACT chemo, radiation, tamoxifen x 6 years for 2A lobular carcinoma, low grade. My post op was uneventful. The drains were annoying. I never shed a year. Children die every day, people lose their noses due to skin cancer, soldiers lose limbs....I lost 2 boobs. I feel lucky to be alive. I cannot control when the breast cancer fear pops into my head, but I can control how I manage the thought when it happens. I live each day to the fullest. I have friends 6 feet under who were diagnosed after I was with other types of cancer. I am lucky to be here still.

[maryannebarry]

Thank you so much for stating all of this important information. I was diagnosed with Triple Negative Breast Cancer at the age of 41 (3.8 cm tumor) and again at 51 (8 mm tumor). I had chemo both times, double mastectomy and bi-lateral tram surgery.
No family history and was an active, healthy person. I try to talk to woman and provide the information you just provided (density, no family history, what my tumor felt like as I found the 1st one). Thank you so much for starting the website. I, too, have survivors guilt and want to make women aware of the importance of pushing harder if you have dense breasts for more invasive testing. Woman need to know this….

Well, I could go on and on but I will continue to educate as best I can in my little world. Hugs and bravo to you 🎉❤

[darlenesutton]

I had to fight my PCP for ultrasound at the same time with my mammogram. I retired and use VA healthcare for my mammograms. I begged my doctor to order an ultrasound with my mammogram. I have dense breast tissue. My last doctor which is not VA doctor always order both ultrasound and mammogram same time. I switched my pcp with VA. The new pcp got real nasty with me when I ask for ultrasound but finally gave me order. I will have Medicare primary soon. I get to pick any doctor and no referral. I applaud how my doctors didn't want me to have an ultrasound mammogram can't see all nodules or tumors due to dense breast tissue. I even got letters from VA stating they strongly recommend ultrasound at the same time with mammogram.

[davdav]

Thank you so much for sharing your Story, my tumor was the same size, positive sentinel as well. No radiation, but more lymph nodes taken out. On Tamoxifen now, with a lymph oedema, afraid of bone mets but glad to be still here. My diagnosis was in March. Your story gives me hope. Warm wishes from Germany❤️👍🏽☮️

[mcz]

More education needs to be done regarding dense breast tissue and the likelihood of missing breast cancer with a mammogram. I have a benign Phyllodes tumor that needs to be removed because it can become cancerous. I found it during a self breast exam. They couldn’t see it on the mammogram even after they biopsied it under ultrasound and added a radiological marker. They found another area via an MRI that needs to be biopsied. Nothing has been seen on any of my mammograms.

Thank you for sharing your story.

[tarat]

Thank you for sharing and keeping it real. I thought I could feel something under my breast and was told by my GP over the phone... Wait till your mammogram when you're 50. I'm nearly 49. It got so solid so when I when I heard the words it left me in disbelief. My tumour was 8cm and in my lobes. They originally thought it was 6cm and contained. It never showed up on the MRI but they stood there looking at it and saying "we can feel it". I had one removed a week ago. I asked for both to be removed removed as I'm certain it will end up in the other given time. She said it was unethical to remove a healthy breast. I didn't know anything about breast cancer before. I was having night drenches, tightness across my chest and when I got covid it took me a long long time to bounce back after that. Thanks for sharing and making others aware. Huge hug xx

[rebeccakarlsson]

Thank you Cynthia for being so involved in educating people about breast cancer detection. I wish that I had had someone like you back 5 years ago when it would have made a big difference in my own case. Best of health to you, and THANKS for the hug! Sending you one right back❤

[deanawells]

I too have breast cancer. I am a health care professional and I knew in that I had breast cancer from symptoms but I was in denial. I always had dense breast and several breast lumps removed through the years. I have zero family history of breast cancer before me and my sister where diagnosed within months of each other. I would have never went to get my mammogram until my sister was diagnosed first.

[allisons]

Same thing happened to me. Stage 2b, two tumors and 1 lymph node. I'd had cancer misdiagnosed as "density" for a minimum of five years. Currently watching a lesion on my spine. Bottom line, all gynecologists should teach women how to feel for lumps. Mine wasn't actually a lump, it was a ridge. I would have bet it wasn't cancer. No history of breast cancer in my family. (which I know now means nothing) I trusted radiologists who read my mammograms. They made a bad call. It's been three years.

[susanehlava]

As a former hairdresser and a breast cancer survivor l often wondered whether the toxic chemicals in hair dye could trigger cancer. I can no longer tolerate hair dye, perfumes, chemical cleaners etc.

[hippiegirl]

I would thank God for his mercy upon my life 🙏

[KymPossible]

Thank you for sharing your story and also continuing to educate! I had heard the phrase “phantom nerve pain”, but never has it been explained as well as your words. Sending you a big virtual hug and positive healing energy!

[sheriek]

I’m a 2x time breast cancer overcomer, having had both ER+ and Triple Negative Breast Cancer. I’ve read literally thousands of breast cancer posts and studies since first being diagnosed in 2006. This is the most depressing, negative post I’ve ever read. 😢

[lizzijansen]

I could not move my arm up all the way after surgery. I went to a massage therapist and it help tremendously. I only had to go three times and was back to normal.

[hopehall-sanchez]

Thank you for your story. I too have dense breast. My cancer was invasive ductal carcinoma, stage 2A, grade 1. There was cancer in 2 lymph nodes but I chose not to do radiation and I didn’t need chemotherapy. I still can’t get back to feeling normal. 💖

[caryngoldsmith]

What you said at the end about being educated for yourself resonated strongly with me. I am a 17 year stage 3c ovarian cancer survivor. It does impact your forever, physically and emotionally, but I felt like I came out stronger for it. Last month, after a routine mammogram, I was found to have a very early stage breast cancer, unrelated to my OC. I had surgery last week. I now have decisions to make about other treatments and I will take great care in knowing if radiation is really for me or not. (Anti-estrogen drugs are out given the impact of prior chemo and radiation.) I don’t feel sorry for myself…life is about dealing with what’s put in front of us. The only advice I’d give to others is to make the best decisions you can at the time, based on what you know, and then never second guess yourself afterwards. “What ifs” can make one nuts. Let’s continue to live life to the fullest!

[deborahbizzell]

I was told my mammogram was normal 12/19 & a couple of months later I was diagnosed with a serious case of breast cancer.

[stchannel]

Thank you for sharing your experience ❤I am a 2 time breast cancer survivor.

[teresa]

I was high risk, I even did yearly MRI. I eventually had DMX, final pathology showed more Pre -cancer lesions which did not show up on my yearly mammo, ultrasound and MRI did not show up. Final diagnosis was stage 1 but I worked hard by being diligent in my yearly screening .

[fininhernandez]

Cynthia, you are awesome! Thank you so much for saying it as it is. May words of encouragement help many women.