My Sister’s Advanced Breast Cancer Diagnosis – Dense Breast Tissue the Culprit

My sister, Diann, has Stage 3 Breast Cancer – a 3 cm tumor that has infiltrated to at least four (4) lymph nodes.  We were shocked as it was so much more advanced than we thought.  The culprit of not finding it sooner – DENSE BREAST TISSUE.

Anyone who has read my blog for any length of time knows I am constantly preaching about DENSE BREAST TISSUE.  If you have it, you can be Stage 4 before you know anything is even going on as often tumors are not picked up on mammograms. Dense breast tissue appears white on mammograms and so do tumors.  I’ve heard from COUNTLESS women about this fact many have gotten their yearly mammograms and got the all clear right up until diagnosis.  Now, my own sister had dense breast tissue, didn’t realize it and was told only once by our family doctor back when she was having children in her 20s and 30s.  She really did not know what that could mean for her and was never told.  On her regular mammogram, which was a 3D technology/tomosynthesis mammogram which is supposed to be better at detecting tumors in dense breast tissue, an area of compressed tissue showed.  That’s all.  THANK GOD our local hospital biopsied, not because they thought it was cancer, but based on family history of my diagnosis and my mom’s diagnosis, they wanted to make sure nothing was hiding behind that area.

Well, hiding it was.   Diann’s breast surgeon at the University of Michigan says it is a 3 cm tumor (well over an inch in diameter), and she could not even feel it in my sister’s breast, and Diann is a B cup.   I mean that seems almost impossible to believe!   Diann said because of me, she gave herself breast exams weekly as she was so paranoid.  She never felt a thing.

Now Diann is forced to endure surgery, chemotherapy, radiation – thankfully, she was Her 2 Negative, so she will not need Herceptin.  They will do a Lumpectomy first, then treatment, then after the genetic testing comes back, she may opt for a double mastectomy with immediate reconstruction after everything else is finished.

This makes me MORE DETERMINED to get the word out there about dense breast tissue.  It is not something easy to talk about it.  If you post it on Facebook, some uninformed men make lewd comments – I have had it happen.  But the discussion is necessary.  Your life depends upon it.

This from breastcancer.org about dense breast tissue:

Dense breasts have less fatty tissue and more non-fatty tissue compared to breasts that aren’t dense. One way to measure breast density is the thickness of tissue on a mammogram. Another categorizes breast patterns into four types depending on which type of tissue makes up most of the breast. Still, no one method of measuring breast density has been agreed upon by doctors. Breast density is not based on how your breasts feel during your self-exam or your doctor’s physical exam. Dense breasts have more gland tissue that makes and drains milk and supportive tissue (also called stroma) that surrounds the gland. Breast density can be inherited, so if your mother has dense breasts, it’s likely you will, too.

Research has shown that dense breasts:

  • can be 6 times more likely to develop cancer
  • can make it harder for mammograms to detect breast cancer; breast cancers (which look white like breast gland tissue) are easier to see on a mammogram when they’re surrounded by fatty tissue (which looks dark).

Twenty-two states have laws that say women who have dense breast tissue must be notified.  Obviously, this doesn’t always happen.

So what to do?

1)  Ask the question of every health care provider you have if you have dense breast tissue.

2)  If you have dense breast tissue, even if your mammogram comes back okay, INSIST, INSIST, INSIST on an ultrasound.  Call your insurance company.  Tell them you have dense breast tissue.  In most cases it covers.  If it doesn’t, ask to talk to a Supervisor.  If you can’t get them to pay, do it anyway.  Make payments.  Your life is worth it.

3) If anything is questionable on the ultrasound, INSIST, INSIST, INSIST on further testing.  What is further testing?

A breast MRI or the newest technology – Molecular Breast Imaging (MBI).  I just wrote about this technology in February, 2015 as recent studies have shown it quadruples detection of breast cancer in women with dense breast tissue!!  https://denise4health.wordpress.com/2015/02/04/molecular-breast-imaging-mbi-quadruples-detection-of-breast-cancer-in-women-with-dense-breast-tissue/

PLEASE, I beg you, have this conversation with your doctors, with your mammogram provider, and with your friends.  It is absolute hell to watch my sister go through an advanced breast cancer diagnosis.  It is far worse emotionally than my own diagnosis was.  You do not want any one you love to go through this when it could be prevented.

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9 comments

  1. As an insurance agent , I’ve seen it time and time again. Doctors are NOT telling you that your dense breast tissue put you at a six times higher risk for breast cancer, n’or do they tell you that the Mammogram is practically useless on dense breast tissue. Since 1 in 6 will get breast cancer, and most of them have dense tissue, it’s more like 1 in 3 for those of us with this problem. I have written to the insurance carriers asking them to have stronger Protocol for Dense tissued women. It should be an automatic Ultrasound. Also, lots if times, I have repeatedly heard women say they told doctor something was a miss, and doctor just said mammogram was fine. These women time and time again had breast cancers, and like your sister, the lumps were very large by the time diagnosed.

    • Thanks, Anne, for your wise response! And keep up the good work informing women about this horrific problem that is still in the dark to most. It absolutely should be an automatic ultrasound for women who have dense breast tissue. We have to keep up this fight!

  2. I’m so sorry Denise. You guys have been through so much! Sending prayers and healing vibes! You’re such a great advocate for women’s health. Love you!
    Sheila💕

  3. Hi Denise,

    I’m so sorry to hear about your sister’s diagnosis. So frustrating as I’m sure she was hyper vigilant after your diagnosis. I wish her strength to go through this ordeal and good health on the other side.

    I’ve been reading your blog for over a year now after I was diagnosed with stage 2 breast cancer. Friends of family in Toledo sent it to me. No family history, no other risk factors other than stress….the only one I realized later was dense breasts. I had regular mammograms and ultrasounds every year, yet I found it myself when it was palpable – by that time, it had spread to my lymph modes, so had a lumpectomy, axillary node dissection, chemo & radiation. This is the # one issue that I tell my friends and family about as I had no idea what having dense breasts meant and I certainly didn’t know that there was a greater risk factor for getting cancer by having dense breasts.

    I thought you might want to know about this organization which is trying to build awareness and change laws to help those with dense breasts.

    http://www.areyoudenseadvocacy.org

    Best Regards, Tracy

  4. Denise-This was exactly my experience. I had been getting annual mammograms for years, with no suspicious anything. I had been told by my Dr. that I had dense breasts, but was never told what this meant. Then in 2012 they saw some calcifications. I had a biopsy and was informed it was very early cancer and very small. I had a lumpectomy and 4 lymph glands removed. Turned out the cancer was just over 5cm! I had not felt anything, my primary care Dr. had not felt anything, the surgeon had not felt anything. And the cancer had spread to 3 of the the 4 lymph glands. So Stage 3. I immediately had 5 months of chemo, followed by a mastectomy, then radiation. I have spoken to my local DAR chapter each October about the importance of annual mammograms, but have also made it a point to talk about the increased risks if they have been told they have dense breasts. This is so important. Thank you for getting the word out further!!

  5. Amen about the ultrasound ..” Demand it beg for it and if they keep saying no say you “have pain and circle the entire breast” saying it’s here .. They will order one based on pain .. It’s awful that ultra sound is not the standard along with mammo….. I would have missed mine as well …. Horrifying

  6. I recently discovered a significant change in my breast, and my gyn sent me for diagnostic mam and us.. The lady who did the mam was very thorough and made me feel like my concerns were valid.. However the young woman who did my US rushed thru.. Literally spent less than 5 mins, took only 4 images.. She never looked at nor felt my area of concern ( I’ve developed what I can only describe as a deep depression in my skin below areola when my arm is raised.. And I can now see it even when arm is down) anyway.. She breezed thru, went and spoke to radiologist, came back and said nothing of concern except very dense breast.. I then asked her if a MRI were not the next step given my breast change, and now that I had been informed of the density. Plus I’m having unusual pain.. She was silent for a moment and said I needed to follow up with my Dr if still concerned. So I got all of my images and have made an appt with a breast specialist.. But my question is.. You said if anything seems off on ultrasound push for more imaging… This is my first go with any sort of breast trouble…how would one know if there was an issue.. Or I also fear she was lax, didn’t spend enough time etc.. Would I see from the images I have? Asking only because I’ve looked at them a thousand times, and I’m a wreck because my appt with specialist is still so far away.. Thank you

    • I did not see your post – so sorry it took me long to respond. Well, you wouldn’t know if there is an issue
      until you talk to the breast specialist. I am so glad you are doing this! In the meantime, I suggest you go
      to this website that has extremely valuable info for women who have dense breasts: http://www.areyoudense.org
      extremely helpful site! Sending all the best!

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