Part 2 of My Breast Cancer Story
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)
Wow. Just wow. I can’t believe that they didn’t pursue the lump that you felt more aggressively when you first mentioned it. That is crazy! I hate to think about how many women have a delayed diagnosis and lose their life because their doctors just aren’t careful enough. I am SO thankful that you were diligent in following up and were able to come through everything!!! Hugs to you, my friend!
Thank you Abby and yes, it was a crazy mess really. I wish I had been more aware, more informed. But I am grateful that even though there was a delay in my diagnosis, it was still found at an early stage. So many others are and have not been that lucky. Hopefully one day that will be a thing of the past!
Thank you for educating us and thank you for being an inspiration! You amaze me in who you are and all you do! God bless you friend!
Hi Nicole! :)
You are so welcome. It is obviously a subject I am super passionate about. I always try to “get the word” out when I can…to help inform others through my experience.
Hope you are doing well!!
Nancy, I did not see your story on breast cancer before I asked about the polyshades. I am sorry to hear about your diagnosis. I look forward to part 3 of your story and will add you to my prayer list.
Thank you so much!
Nancy…what a horribly scary experience, thank you so much for sharing it in such detail. I am 2 months or more overdue for my mammogram and will be sure to find out my breast density when I go in, I’m making that appt today!
The best to you and thank you again for the detailed information.
Yes, please do!! I am so passionate about getting this information out to people who may not be aware…and may not know to ask. :)
And you are so welcome.
All the best to you as well!
Thank you for sharing, cannot wait to read the 3rd part…. I have a similar experience, and have been told by
doctors many times Oh you just have lumpy breasts. Well that is all good and fine, except as you say it is very hard
to determine what it is that I feel myself or my family doctor (thanks to her diligence) we have done a lot of further
investigation ultra sounds, aspirations etc. Luckily so far for me No cancer…..
But much harder and more testing is necessary and I so agree with you, for dense and lumpy breast tissues.
Women really need to be their own advocates and not just trust the little letter that arrives and says all is normal.
Thank you again for sharing YOUR experiences with us.
I very much appreciate it.
As for Vitamin D, yes it is important to our good health, and we should all have it tested….. With sunscreen use
so much pushed to avoid skin cancer, and our lives not being that much outdoor activities, with full work schedules,
computers, driving cars etc. we do a lot inside. We all need some sun exposure to have enough vit. D in our system.
But then we need to monitor carefully the exposure and never overdo it….. I was tested because I started feeling
more tired and less vitality, and a total lab screening revealed besides other, that my vit D level was on the very
bottom of the range….
Thank you again and have a wonderful Day
It is cool in Chicago BUT EVERY SO PRETTY WITH BLUE SKIES, SUNSHINE AND THE TREES STARTING TO CHANGE
COLOR ALTHOUGH MANY HAVE ALREADY LOST SOME LEAVES.
Oh I am so glad to hear that everything has turned out to be fine so far! And it sounds like you are on top of things. We really do have to be our own advocates. (and listen to that little voice…I think we know deep down when something is not right)
Yes, Vit D is hugely overlooked and many are in the low range these days for exactly the reasons you stated. You are so right.
Thank you for taking the time to read and comment Edi! :)
I hope you have a wonderful week.
All the best,
So happy my new doctor got on my c/0 lump really fast–with the full diagnostic process. All is well. But I’ll stay on top of it as my sister died nearly 2 years ago of her third round of cancer. I miss her. My doctor ordered Vitamin D but didn’t tell me why!! No use frightening the natives, I guess..LOL
I’m sharing this info with the women I care about and thank Nancy for sharing…while wondering why it took me so long to read it!!!!
Bless you all….MJ
You are so very lucky and I’m happy to hear that…but sad to hear about your sister.
Vitamin D is very important, do stay on top of that. Glad to hear you were prescribed it also!
Thank you for sharing with your friends. :)
Hope you have a blessed day!
Thanks for mentioning the Vit D connection. Mine was low too (12). 10,000 IU’s daily has me at 60 now.
My lump was dismissed also. I was told it was probably there all along & I just never noticed it before. Thankfully I was persistant & had it removed during the biopsy. However they didn’t get clear margins so I need to decide what my next step will be.
Thanks for sharing your story. And yes, I’m dense too.
Yes, the Vit D connection is there….and so many people are deficient these days. It’s important for so many functions in the body.
I am so glad you were persistent with your lump as well. :)
You may have literally just saved my life. I will be 55 next week and have been told by the mammography techs for years that I have the breast tissue of someone in their 20’s. My maternal grandmother had breast cancer. I always felt that having my regular mammograms would let me know if there was ever a concern, but now from your posts I realize that a mammogram alone may not be enough. I have my yearly physical next week and will certainly discuss this with my doctor. Thank you so much for these informative posts. You may really have just saved my life!
No, with dense breast tissue I don’t believe mammogram is enough. I hope you had a chance to take a look at the website areyoudense.org. It’s a great resource for women like us! I am so glad you saw this before your appt next week. :) I truly believe it’s best (and our right) to be informed.
Blessings to you!
Nancy, I did read the information at http://www.areyoudense.org and was so glad to see that my state (NC) has recently enacted the legislation which will become effective Jan. 1, 2014. I am so grateful to have read your post before my upcoming yearly physical. I definitely feel the hand of God at work here. Thank you again.
Nancy, thank you so much for sharing your story with us. I’m really so glad you were persistent! I am past due a mammogram…. you may have just given me the push I need to get it done. Oddly, at my last GYN appointment, knowing my age and knowing how long it has been since I had one, I don’t remember anyone saying a thing about me getting one. Maybe it was because we were focused on a separate “abnormality” that, thankfully, turned out to be OK.
You are an inspiration to many woman. Sending hugs to you, friend.
Yes, go get that mammogram! :) You are not alone in putting these things off…I did as well! So glad your other abnormality turned out to be ok. :)
Thanks for the sweet words friend!
Thanks again for sharing Nancy. I also have dense breasts (something I found out 2 years ago). They sent me in to have an ultrasound because there was so much they just couldn’t see. Fortunately, everything looked fine on the ultrasound. It sounds like we’re about the same age (I was born in 1970). Very scary stuff. I’m so glad you’re doing well and very glad you’re sharing all this information!
SO glad to hear they sent you in for an ultrasound with the dense breasts. With the laws passing in states through the work of those ladies I mentioned (areyoudenseadvocacy.org) more and more women will be informed of their breast density. (Not required before) So glad all looked well when they did your ultrasound. :) Yes we are close to the same age too (67 here) and yes, very scary stuff. But less scary if we have the chance to be informed and take action!
Gosh, I didn’t know that cancer looks white on a mammogram, just like dense breast tissue does. My mammograms have A LOT of white, so now I know to be extra cautious. I am supposed to get blood work soon and will be sure to ask about my Vit. D levels. Thanks again for sharing your story.
Yes, it sure does look white on mammogram. That is what is so baffling to me. My films of my breasts were completely white (with the absence of any black…they were that dense!) so the fact that they could tell me there was nothing amiss is crazy to me.
Yes, please do be cautious. If you have that much white I would talk to your Dr and ask for other screening, ultrasound, MRI, etc.
And yes, Vit D, do check. :)
What a powerful story Nancy…first and foremost thank God you are doing well…I can only imagine everything you have been through. The information you are putting out here is wonderful and never talked about..I too have dense breasts as it seems many of us do…I’m 55 and still every time I go in for my mammo they ask me if I’ve had implants…yes the girls are still very firm and perky…I put off having my first mammogram until I was 50, not cool I know, but I finally did it..they noticed something in my left breast which prompted another mammogram and an ultrasound..I am just taking their word for it that it’s ” nothing to worry about “….until now….thanks to you!!! My yearly mammo is soon approaching and I will be more vocal about the fact that just maybe because of the density they are not getting a good enough look at that “spot”
Thank you so much for your personal insight…. You are empowering many of us to take a stand and protect our health!!
God Bless you and your family.
Thank you so much :)
Yes, we really do have to be our own advocates! Push for more testing on that spot…even if it comes out just fine, better to know for sure! And if you have very dense breasts you should most definitely be getting additional screening along with your mammograms. Please ask for it!
Blessings to you Julie :)
Thanks so much for sharing this. I also have a family history of breast cancer so I do all of the screenings I’m supposed to at my age, but I did not know a lot of this stuff. My mother had a similar experience… her lump never showed up on mammograms, she pointed it out to her doctor, who said it was probably nothing and instructed her to wait 6 months to see if it changed or grew. After that 6 months they did additional testing and found out that it was, in fact cancer. It’s so troubling why it seems like it’s the norm for doctors to brush off womens’ concerns this way when everyone knows how important early detection is. I think your story will help many women who may find themselves in that situation. I’m so sorry about your mom too :(. I also lost my mom years after her breast cancer diagnosis to a different kind of cancer.
You are so welcome. I really do hope it gets the word out…and so far it seems as though it is. Wow, that’s crazy how nonchalant doctors are about these things. It really upsets me.
I’m so very sorry you lost your Mom to cancer in the end as well. :( It’s tough I know.
All the best,
Wow! That’s crazy scary! First let me say Thank you! Thank you for sharing the real deal and your personal experience. That can’t be easy. And, two: you continue to amaze me. The strength you’ve shown after loosing your mom recently and now this. I truly admire and respect you as a person and we haven’t ever even met. My gosh Nancy I’m teary typing this.
Know you’re in my thoughts and prayers. And, I’m rooting for you all the way!
You are so welcome! No, it really wasn’t easy to share at all but I am so passionate about this subject…and the fact that so many women don’t know this information. I had to tell it.
Thank you so much for the sweet words friend. :) I do hope we get the chance to meet in person some day!
Thank you so much for sharing such a personal part of your life with us! The information you have shared is NEW to me! Thanks for informing us! Hugs~Christy
Christy, you are so welcome! And that is exactly why I decided to share my story. I think all women should know about this. It is SO very important and so many do not know.