Part 2 of my Breast Cancer story…..it is long…but an important read:
(to read Part 1, click here)
Since I have a family history of breast cancer, I have been getting mammograms since I was about 36.
Diligently. Every year. And self exams….not as regularly as I should but I did do them.
I did what I was supposed to, staying on top of things, right? The only problem was….the mammograms were pretty much worthless in my case. And in many women’s cases.
They just don’t know it.
The reason? I had extremely dense breast tissue. Guess where that wording came from? Directly off of my mammogram reports.
No, not any of the ones I ever had the privilege to see. I got the little happygram saying all was normal. I only saw those reports after I was diagnosed and requested to see them.
The doctors are the ones who got the honor of seeing those reports all along.
But things are changing.
Did you know that dense breast tissue (and I’ll go out on a limb here and say that I am pretty sure extremely dense breast tissue is worse) appears white on a mammogram? White like a thick, pretty, white, very dense fluffy cloud.
Can you guess what cancer looks like on a mammogram?
Tumors are dense and appear white as well.
Now, I ask, can you see the pretty blue sky through that thick, white fluffy cloud? Nope. Do you think maybe you could see a white ball hidden in that white, thick fluffy cloud. Um, no again. And doctors know this. They KNOW this.
So why, with the history of breast cancer in my family and my “extremely” dense breast tissue, was I dismissed? Always sent letters saying all was well?
How could they tell? How could they know for sure? They couldn’t.
I am at a loss as to why I fell through the cracks…sadly I am not alone in that. But like I said, things are changing. And that is thanks to some really wonderful ladies who have fought hard to bring awareness to this problem. —> areyoudense.org
These women are fighting for your right to be informed of your breast density by your doctors…and subsequently offered the option of additional screening. Please check out this website to see if the law to inform has been passed in your state. areyoudenseadvocacy.org
Another informative read –> Breast Density as a Risk Factor
Please take a moment to go by those 3 links and read up on this. For yourself, for your loved ones. It is important to know, to be aware and to be your own advocate.
Did you know —> *Women with high breast density (as seen on a mammogram) are four to five times more likely to get breast cancer than women with low breast density. (source)
And —>*Women with higher density have been shown to have a higher risk of dying from breast cancer compared with those with lower density, but this is due largely to the increased breast cancer incidence associated with density. (source)
More valuable information that I would be remiss not to tell you. Vitamin D. Mine was a low 17 when diagnosed (normal range is 30-50). Not one doctor had ever mentioned that I should have it tested. Nor did I know to ask. Low Vitamin D is also a risk factor in breast cancer. (source)
Don’t start dosing with Vitamin D until you are tested by your doctor however. But please get it tested if you have not.
So…..do we not then realize that breast density is an important risk factor?? What are the doctors doing out there? Again, at a loss.
Oh, I know, (some of the consensus from what I’ve read) they don’t want to put “fear” into the masses because most won’t have cancer after all….they’ll just do additional screening while raising women’s fears. Well, I’d rather have a little fear put into me and do a bit of additional testing and find out everything is ok….than not been put through a bit of testing and the associated fear to find out years down the road it’s too late. How about you?
I found my breast cancer. Doctors and preventative screening did not. Not minimizing the need for screening at all. It is absolutely necessary. But so is being informed. I think all women should be informed…..and have the chance to BE informed.
Thankfully my tumor was in the upper top portion of my right breast….in an area that would be fairly easy to feel….and find. And what if it wasn’t……??
Many times, along with dense breast tissue comes fibrocystic breast tissue. Both of which I had. That makes it a little tough to “feel” for anything in them when everything feels a bit lumpy anyway. But I knew this spot was not right and felt different.
Fear set in….but I talked myself out of it.
I had just been to my gyn appt a week before when I noticed the lump. Not so lucky for me because I would have mentioned it to him at that appt had I noticed it just a week earlier and I would have been diagnosed much sooner. But “lucky” for me, at that appt, he gave me my usual script for my yearly mammogram so I knew I could still “check that lump out”. I went in for that mammogram about 3 months later.
At the mammogram appt, I actually pointed to and mentioned to the tech that I felt a lump but they were lumpy anyway so I wasn’t sure what I was feeling. Something else I did not know at the time….they are supposed to send you directly to ultrasound if you mention being able to feel a lump. (another fall through the cracks)
You know what she told me instead? Wow, you have the breasts of a 20 year old. (while looking at the screen of my squished breast) Yay me!
Seriously, I actually thought, oh, I’m 41 and that’s kinda cool. I even bragged to my husband when I got home that his 41 year old wife had the breasts of a 20 year old… as if it were a good thing!
No, not so much.
What that meant was my breast tissue was very dense. As we age, typically, our breasts become less dense (become more fatty and then look black on the screen) and that is why mammograms are a great tool for older women. White shows up well in black.
But for many women, like me, with dense breast tissue, it is not such a good tool.
She then even brought me around to look at the screen ….”to ease my fears of that lump”…and all I saw was full on white. Had no clue what that meant except “oh, it’s all white, I don’t see anything funky in there!”. Great. All is well.
Even got my letter a week or so later to confirm it.
To be honest, I still had a bit of an uneasy feeling about the lump. I kept an eye on it and watched for growth or change. Neither of which I ever noticed it doing. So I thought….I’m good….sorta.
Next gyn appt…yep, it was delayed. I ended up having to cancel because of a scheduling conflict and didn’t get back in until a few months later. (now it’s been a year and a half since I first felt the lump) At that appt I mentioned the lump. My doctor felt and said he didn’t think too much of it but would send me for a diagnostic mammogram and also ordered an ultrasound.
At that resulting appt, they did the diagnostic mammogram and had me wait for the results.
Completely normal. Surprise, no?
Then I went into the room for the ultrasound. Uh oh. Not so normal right off the bat.
Yep, within seconds of placing the probe against my breast I felt a huge sense of uneasiness in the room. The tech showed me the screen and said “see this?….it’s a cyst”.
Ok, but that’s NOT where the lump is.
She just kept going over and over and over the lump but wouldn’t say much about it. Then left me in the room for about 45 minutes just laying there waiting on the doctor.
Fear and reality began to fully set in.
The doctor finally came in and showed me the big black spot on the screen (on an ultrasound, I later found out, cancer looks black) …..and was pretty stern faced and of very few words. The only word I remember him saying that day was “worrisome”.
Will never forget that.
To continue to Part 3 of my story, click here –> Part 3.
(read Part 1 –> here)