Breast Cancer-Some advice

[Anonymous]

Just wanted to share my two cents in case it may help a woman in early detection.
If you have ever been told you have "dense" breast tissue, please schedule an apt with an actual breast specialist. A breast surgeon is the best person to advise you on the type of screening you and how often. If you have any breast cancer in your immediate family, please see a breast specialist for the same reasons.

My mother had ovarian cancer 35 years ago (she is still alive!) and is BRCA1 positive. My sister had breast cancer, stage 1, at age 36. She and I are both NEGATIVE for BCRA mutations. However, I started to see a breast surgeon after my sisters diagnoses, about 15 years ago. I was advised to see a genetic counselor and to redo the BRCA testing every 5 years as the tests and sensitivities are always evolving.
In addition, the surgeon recommended that I get a breast MRI because it provides a better image for dense/cystic breast tissue. I can feel lumps in my breasts but they are all benign cysts.
Dr also recommended I alternate between mammo and MRI, so getting an image every 6 nmonths.

I started doing this 10 years ago. I think because it was under the guidance of a breast surgeon, insurance didn't fight me on the number of images or MRI. During this time, I had a few suspicious lumps that were biopised but benign.

In Nov 2022, I had a normal mammogram. In June 2023, I had my regularly scheduled MRI and that is when cancer was found. The next day it was biopsied. Three days later I was told I had stage 3 Triple Negative (the most aggressive kind) breast cancer that has metasitized to my lymph nodes. Immediately I underwent additional scans of head, neck, chest and abdomen. thank god it had not spread past the lymph nodes. I finished 16 rounds of chemo in Dec 2023, a bilateral mastectomy in January 2024 and now in my second week of radiation.

Short version, if I was only having annual mammograms I believe I would be facing palliative care at this point. Between the clear mammo and the MRI was about 6 months, and in that time this cancer grew to 5 cm in the breast and spread to 2 lymph nodes. If I had gone a full year in between mammos it would have been much worse. Its also possible the mammo didn't pick up on the early growth of the cancer. As of now I am cancer free but I still have a lot of treatment ahead. I am 100% certain that being under the care of a breast surgeon who understood how challenging dense and cystic breast tissue can be is what saved my life.

This is not to scare women. But this is directed to women who know or have been told they have especially dense or cystic breasts. You need to see a breast surgeon for advice. I have been under the care of the Sullivan Breast Center at Sibley for years and its been great and everything is highly coordinated between departments. But almost all big hospitals have comprehensive breast centers so start there.

Take care of yourselves and advocate for yourself. I worry that a lot of folks have gotten complacent about breast cancer since we all know someone impacted by it and the treatment success can be very high. But this is still killing thousands of women every year. Stay vigilant.

[Anonymous]

Thanks for sharing your story and wishing you the best in life.

Signed, fellow very high stage cancer survivor (not breast cancer but always worried that is coming next due to so much CT radiation exposure).

[Anonymous]

In the last few years, there has been an increase in cancer that progresses quickly to advanced stages, so your advice is particularly apropos now. Best of luck with your treatment.

[Anonymous]

I am glad you caught it before it was too late. Do you see O’Donnell at Sibley? She is my doctor (I also had breast cancer) and is terrific.

[Anonymous]

My sister has been saying for years that in your 40s you learn of so many people who have breast cancer. I truly thought she was bring dramatic (she is dramatic) and now at 42, this has actually become my experience.

A friend detected on a regular mammogram.
A friend who put off symptoms and was discovered at Stage IV.
A family member with strong family history detected on a regular mammogram.
A colleague who had another type of cancer years earlier.
A lady I sat next to on a plane who said she had a clear mammogram, felt a lump, insisted on another image, and was diagnosed two months after her mammogram.
And more.

I have small but dense breasts and cysts, and have just made an appointment to see a surgeon to have one cyst drained because it is often tender. I will bring this up.

Thank you OP, and I wish you all the best health!

[Anonymous]

No one in my family has tested positive for any known breast cancer genes, including myself.

However, all three of my maternal aunts and 2 (young!) cousins have had breast cancer. There is so much that we still don’t know. I am so glad that you advocated for yourself OP. You are a hero and saved your own life.

[Anonymous]

Thank you for this post, OP. I'm also a breast cancer survivor and everything you say is so true.

[Anonymous]

Wow! Thank you for sharing, OP. Your consistency saved you!

[Anonymous]

Anonymous wrote:I am glad you caught it before it was too late. Do you see O’Donnell at Sibley? She is my doctor (I also had breast cancer) and is terrific.

OP here. She is my doctor and performed my bilateral mastectomy. She is great and took so much time to explain everything thoroughly to me. I have also been happy with the nurse practitioners I have seen in her practice.

[Anonymous]

I have dense breasts and an aunt that has had BC but not a genetically inherited type. This feels like a dumb question to ask but did you just make an appt with the specialist? Or did you have to tell them you have dense breasts and wanted an exam?

[Anonymous]

I am in remission for Bc, I'm 43. Thank you for writing this post. I know so many women around my age with breast cancer or concerning cells.

My mom had BC but she had no genetic link in the testing and neither do I . Which is so scary, thinking about the environmental factors.

OP I wish you the best of health and sending you all the hugs.

[Anonymous]

Same question: I have cystic dense breasts. I think an MRI would be better. Do you call and ask? How do you set it in motion?
Signed,
45 year old woman finally brave enough to get her second mammogram (or MRI)

[Anonymous]

Wow OP! I’m so glad you advocated for your health and are okay! Same question as PP - I am under 40 but have been told j have dense breasts. How do I get in with the surgeon? Can I just call? I don’t need a referral for insurance.

[Anonymous]

OP we are cancer twins (almost). Diagnosed June 22 ‘22 w/ stage 3 TNBC, 5 cm tumor. The only difference is no node spread for me. Chemo until Dec ‘22, double mastectomy Jan ‘23. Kudos to us!!

[Anonymous]

Thanks for the post OP and wishing you best outcome. I have a similar background and screenings and sometimes wonder about mammogram exposure and any risk from that. Is that unfounded and was it ever addressed? I’ve meant to ask about it. I know how important the screenings are though and keep up to date.