Mobile Phone Users: I am not sure why the "ipetition" doesn't show on all mobile phones and am working on this. If you can, please take the time to sign the petition using a tablet or computer. I hope to figure this out soon. Thank you for your patience.

Sunday 30 March 2014

Have you received a "Happy Gram" report?

To learn what a "Happy Gram" report is, check out Dr. Nancy Cappello's story on the "Are You Dense?" website.  She ends her story by saying she is on a quest to expose this best-kept secret of dense breast tissue to ensure women receive screening and diagnostic measures to find cancer at its earliest stage.  Remember early detection can save lives!


In her quest for information, Dr. Cappello found "that there have been 7 major studies with over 42,000 women that demonstrate that by supplementing mammograms with ultrasounds increases detection from 48% to 97% for women with dense tissue."


I encourage you to go and read her story.

What do these states have in common?

Connecticut, Texas, California, New York, Virginia, Pennsylvania, North Carolina, Oregon, Nevada, Alabama, Maryland, Hawaii, Tennessee, and New Jersey?


If you have heard and read Mi-Jung Lee's series on breast cancer you might guess that they are the fourteen states that have breast density reporting legislation.  Connecticut was the first state in 2009 and New Jersey joined the list in early 2014.


The Are You Dense? website is a very interesting site with lots of information and resources about breast density and stories from women or their family members whose cancer were missed on mammograms due to dense breast tissue.  The site states that, "Studies for decades conclude that breast density is the strongest predictor of the failure of the mammogram to detect cancer.  National (USA) surveys report that the great majority of women are totally unaware of their breast tissue composition and its impact on their breast health.  Women report that they want to know their breast tissue composition.  State legislation ensures that ALL women are informed of this critical breast health information to enhance informed discussions with their health care providers about their personal screening surveillance."


Please help put British Columbia on the map as the first Canadian province/territory to have such legislation.  Your signature may help to save a life!


I learned tonight from exploring the Are You Dense? website and reading Fact#6 that "women with dense breasts who have had breast cancer have a four times higher risk of recurrence than women with less dense breasts."  I hope this is a already factored into my greater likelihood of recurrence due to having Stage III cancer!

Some Interesting Numbers

Please follow along with a little bit of math:


There are 2.46  or rounded, 2.5 million women in Canada between the ages of 40-49.
Source: Stat Can website


I had first heard that 30% of women in that age range have dense breasts, so then approximately 750,000 women in Canada between the ages of 40-49 have dense breasts, however after more research I found a review of this  study called "The Relationship of Mammographic Density and Age: Implications for Breast Cancer Screening" by Checka CM, Chun JE, Schnabel FR, Lee J, and Toth H., reported in March 2012.  In the summary of the results, they found, "74% of patients between 40 and 49 years old had dense breasts.  This percentage decreased to 57% of women in their 50's.  However, 44% of women in their 60's and 36% of women in their 70's had dense breasts as characterized on their screening mammograms."


Let me do the calculation again, if we take 74% of the 2.5 million Canadian women between 40-49 then an astounding 1,850,000 or 1.85 million women have breast density that could impact the accuracy of mammogram screening.

In the book about breast cancer I was given to read it says approximately 25% of cancers are missed in women between the ages of 40-49.  Using 25% to calculate then, 462,500 cancers could potentially be missed by screening mammograms.


(If you want to be conservative and take the 30% density figure, and the 25%, that is 187,500 women at risk).




The National Cancer Institute has a page on mammograms and explains both false postives (radiologists think the mammogram shows a cancer but upon further testing no cancer is present) and false negatives (a mammogram appears normal although breast cancer is present).  They state that overall screening mammograms miss about 20% of breast cancers and the main cause of false negatives is high breast density.  They also explain that false negative results occur more often in younger women because younger (premenopausal) women are more likely to have dense breasts than older women.


Please don't get me wrong, although about 25% of cancers are missed in women 40-49, there are many cancers that are detected by mammograms and mammograms do save lives.  Please make sure you go and get your mammogram but also to ask about your breast density.


For the "heads up" of knowing to ask, which I never knew to do, I ask you please sign this petition.




Other interesting information can be found at:
Canadian Breast Cancer Foundation website - Breast Cancer in Canada, 2013

Friday 28 March 2014

i-petition is back up, please sign away

It looks like the i-petition is back up.  Please sign away so together we can make a difference.


A big thank you to Mi-Jung for shring my petition and my story on the CTV news tonight.

Oh dear!

For some unexplained reason it looks like the "i-petitions" website is having difficulty tonight.  I can't access another ipetition on another blog.   This difficulty couldn't come at worse time after my interview with Mi-Jung Lee from CTV this morning.  If you are unable to sign it tonight, please come back later.
Thank you so much for your understanding.  It was working at 5:00!

Thursday 27 March 2014

worldwidebreastcancer.com

In looking for information to share,  I came across a website called  worldwidebreastcancer.com   It has some great visuals.  I have posted one below but encourage you to go and see the others.  
www.worldwidebreastcancer.com


www.worldwidebreastcancer.com



The site asks that if using an image on a website, blog, Facebook page, or Pinterest page to make clear to others the license terms of this work. To read these terms, please click here.
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There is also a breast cancer risk assessment tool that you can print out and complete and take to your doctor.




Tuesday 25 March 2014

How do you see it?

There are a few words women use to describe their experience with breast cancer.  A journey, a war, a battle, a fight.  For me it is anything but a journey!  As a dear friend said, most journeys are pleasant or at least have a pleasant ending.  I viewed the adoption process as a journey, despite its rollercoaster ride and ups and downs, I would end up becoming a mummy.  My experience with breast cancer I view as a fight, a battle or as another friend said something to "wage war on!"

Out of interest I have made a poll where I invite you to vote, there is no email required here, so we can see how readers would view their battle with breast cancer.



Survivorship - how is it counted

I have heard a couple of women ask recently how survivorship is counted.  I went to the trusty Breast Cancer Forum discussion board figuring the question had already been asked.  It turns out it has, and a number of times!  Most doctors and the majority of women seem to want to count it from the day of diagnosis.  (April 18, 2013 will be forever etched in my memory!)  Some of the comments on the board indicated that surving treatment should count as surviving time.  That's true, however, I have been thinking about it and have decided that for me since my surgery was after my chemo and radiation, I would count it from the day I got the pathology results from the oncologist and GPO.  That day was January 8, 2014.  You can see a counter/ticker in the right hand margin that is marking the time.  The 2 year mark is apparently significant as is the 5 year mark!


I am finding this part of the journey is very challenging but I am not alone.   Surviving breast cancer it seems is almost like being in a club or sisterhood.  You have to have gone through it to understand why this part of the battle is so hard.  It is easy for people to think you should be happy, they got all the cancer, you can get on life, but through active treatment you were so busy fighting for your life that it is only when that part is over that you have time to stop and think about what it is you have gone through.  In early survivorship you are still recovering from treatment, have far fewer doctor's appointments, tests, etc., and in most cases are on hormonal medication.  The hormonal meds, in my case are Tamoxifen (10 years) and Goserelin/Zoladex (2 years).  Combined, they do a lovely number physically (night sweats and hot flashes) and emotionally.  I am hoping as time in survivorship increases and I return to work part-time I can find a "new normal".


Finding a "new normal" will be a post on its own!


* In case you are wondering why the ticker says "vacation", the website does not yet have survival tickers (I have suggested this to them) so I had to use a 'vacation ticker'.  If you need a counter for your blog, website, Facebook page, they have tickers or counters for lots of other things/

Please pass the message along

Thank you to everybody who has already signed the petition.


In creating this blog about breast density and the petition about the need for women to be informed if their breasts are dense, my hope is to make a difference.  I want to save women and their families from the experience my family and I have gone through for the last 11 months.  I read somewhere that one in nine women will develop breast cancer in their lifetime.  If cancer is caught early, it is more likely to be successfully treated.  Thanks to Mi-Jung Lee sharing her story, and from what I have posted, you now know how important it is to ask when you go for a mammogram, "Do I have dense breasts?"


Check out the picture from Breast Diagnostic Centre

I received permission from the Breast Diagnostic Centre in Washington state to post the picture on my website and have inserted it on the early post.  If you go back to that post you can see what I mean about "white on white" and cancer being much harder to identify on mammograms in women with dense breasts.
Breast Diagnostic Centre post

Monday 10 March 2014

My story in a little (okay a lot) more detail

On April 18, 2013 I was diagnosed with stage III breast cancer, more specifically invasive ductual carcinoma (ER+, PR+, HER2-).  I started to have mammograms in 2010 when I was 42 years old.  In 2010, 2011, and 2012 I received the "all is good come back in a year" letter.  I never knew mammograms could miss cancers.  There were no posters or signs telling me this in the waiting room, only posters explaining how mammograms can pick up small lumps that one might not be able to feel.  That is tumours the size of a grapefruit or orange seed.  I also knew mammograms could detect lumps that turned out to be benign, that is a" false positive", but I didn't know they missed cancers in such large numbers in premenopausal women (1 in 4 for women between the ages of 40-49).  Oh, how I wish I could have been a "false positive" rather than a repeated FALSE NEGATIVE!!!!

In January 2013 my right breast was a bit itchy.  I "googled" it and attributed to hormonal changes as the itchiness went away. In February, it came back and went away again but I noticed my right breast seemed a bit swollen.   Again, it seemed hormonal.  I booked a mammogram for April 2, before my knee surgery and then spent spring break in Victoria with my parents.  When the symptoms came back in March, I worried something was wrong.  I came home from the hospital after my knee surgery on April 4 to find a message calling me back for more mammograms.  I hobbled in on crutches, had them and was then called back for a core needle biopsy of the breast and fine needle aspiration of the lymph nodes.   On April 18, 2013, I got the news nobody ever wants to hear!  "I am sorry, but you have cancer."

Longing to become a mother and to have a little one to cherish, I started the adoption process in May 2011.  I visited my future child's country in May 2012 and thought I had found a young girl but less than a month after I was home I learned she was no longer available.  I continued to wait.  At the end of February 2013 I was matched with a little girl who was 3 1/2 years old.  The perfect age in my eyes for so many reasons.  I was meant to go and meet her in May when my knee was strong enough to travel.  Unfortunately, after my diagnosis I had to call the agency and give her up.  This was the hardest thing I have ever had to do.  A couple of people have asked me why the agency couldn't  hold her for me, I am afraid international adoption doesn't work that way!  It is another long, emotionally fraught, challenging and complicated journey filled with many ups and downs.  Although increasingly difficult due to increased regulations and one organization's beliefs, it usually results in a happy ending. 

Back to the breast cancer, within a month of diagnosis, I started dose-dense AC/Taxol chemo.  Four rounds of each, two weeks apart.  It was brutal but I made it!  I had many side effects and can post about some of the more unusual ones later.  I would Google my problem and almost always get a link to the MacMillan Cancer Support website or the the Breast Cancer Forum discussion boards.  (See links to these on the right handside.)  A week after the first chemo I decided to have my hair shaved off rather than watch it fall out.  I had been told this was easier than watching it fall out in clumps. Let me tell you this was so easy compared to the phone call I then had to make up giving up my little girl.  I knew my hair would eventually grow back but my little girl wouldn't be coming home!  Going into summer, I decided to go the hat route and found a great website called, Hats, Scarves and More.  I have a big head, in circumference that is, and this website has some hats for those of us with this problem. 

Fast forward through the chemo (May-August), to 28 days of mega-dose radiation (Sept/Oct) from all angles and sides (breast, lymph nodes, collarbone, chest wall), to my surgery (late Nov.), a right modified radical mastectomy with axillary dissection.  There was no possibility of reconstruction due to the size of the tumour.   My dear surgeon said she didn't want to spare anything (leave enough skin or tissue for expanders) as she wanted to give me the best chance of living to a ripe old age.  I am so grateful to her for her skill and expertise.  I have to share here that for me losing a breast is nothing compared to the loss of being a mummy!  I have to wait a while to see what happens (ie: recurrence due to being Stage III)  before I am able to return to the adoption process.

I  have "soldered" (my surgeon's words about my progress during chemo) through all my treatments and only in January arrived at a point where at the end of active treatment I am left wondering what happened!  Life at the end of cancer treatment is HARD!   I find myself feeling vulnerable, anxious about recurrence, fragile and not to mention easily fatigued.  All of these I am reassured are normal at this point in the battle, or what is called "end of active treatment".  A CT scan in January identified an enlarged lymph node under my left arm and spots in my right lung.  A few days later it was confirmed that the spots in the lung are scaring from the radiation.  They are in the correct place to be that.  On Wednesday, March 5, I learnt that the biopsy was negative and there is NO cancer.  I can't tell you how good it feels to be a false positive.  Yes, there were a few stressful weeks, but I'd go through it again to hear the words, "It was clear.  They couldn't find any cancer." 

From the beginning of my battle I wanted to do something to share what I wished I had known, that is mammograms miss tumours and especially so in premenopausal women.  I just haven't had the strength, other than through emails to friends, to go about doing that.  According to a book I was given to read, and as I have mentioned in an earlier post, 25% of tumours are missed by mammograms in women between the ages of 40-49!  Through my experience, I also learned that mammograms have difficulty identifying tumours in women with dense breasts.  Never once was I told my breasts were dense.  If I had, I would have done something to protect myself.  I would even have paid for private imaging if necessary.  I am hurt and upset that I was never "red flagged" and sent to a specialist so that my cancer might have been caught at an earlier stage.  I have worked hard all my career (23 years) to "red flag" children in my classroom that I have concerns about.  Working hard with school-based team, we do our best to get them help, but that is another story!  If I'd known what I know now, I would have asked the mammogram technician if my breasts were dense!







Thursday 6 March 2014

Breast Diagnostic Centre (BDC) - Washington State

 In rereading my initial post I realized it might be helpful to include a picture of what dense breasts look like on a screening mammogram.  From a google search I found a good picture on the Breast Diagnostic Centre website.  This medical centre has kindly granted me permission to post the picture below from their website on to this blog so you can see what I mean by the "white on white"!


The BDC website says that, "While there is no law yet in Washington State mandating mammography facilities to notify patients of their breast density and the option for supplemental ultrasound, it is clearly on the horizon.  BDC (their clinic) is taking a proactive stance by notifying patients of their breast density via their mammogram report and providing education and the latest technology available, including 3D Mammography (tomosynthesis) and Ultrasound Breast Screening."  Imagine the difference we could make if we could get the same proactive stance here in British Columbia and have women be notified if they have dense breasts.  I can tell you that my life for one would be very different!


Mi-Jung Lee has a link to a website in the USA called Are You Dense?  The site's mission statement reads, " Are You Dense, Inc. is dedicated to informing the public about dense breast tissue and its significance for the early detection of breast cancer."  The site has lots of information and a story about a doctor who ended up with Stage III breast cancer.  I can definitely relate to her experience!  Between May 17, 2013 and November 25, 2013, I had 8 "dose-dense" sessions of chemo - 2 weeks apart,  28 days of radiation and then a modified radical mastectomy.  On the 'Are You Dense?' website you can learn the fourteen states that have density reporting legislation to protect women from delayed diagnoses.  Let's get the word out and try to make BC the first province to have the same kind of legislation.

Wednesday 5 March 2014

MP Patrick Brown's Private Member's Bill on Breast Density Awareness

I received this information in an email the other day and thought I would share it as there is action with breast density awareness happening at the federal level.  Patrick Brown, Conservative MP for Barrie, Ontario, has a private member's bill that is currently at 2nd reading in the Senate.  The bill is numbered C-134 and titled "An Act respecting the awareness of screening among women with dense breast tissue."  Please click here if you want to read more about the bill, and here if you want to follow the progress that is being made.



Why start a petition about screening mammograms and dense breasts?

North America has one of the highest rates of mortality from breast cancer than other places in the world.  For example, the mortality rate is about twice as high as in China - Hong Kong. (See the "Geographical variation" on the Breast Cancer of "Net Doctor").  You can click here to see a graph showing different countries breast cancer mortality rates on the World Health Organization website. 

Through the "Run For a Cure" fundraiser, thousands of miles have been run to raise funds for a cure but despite much research and progress there still doesn't seem to be one!  Through the skill of surgeons, often in conjunction with chemo, tumours can be removed from the breast and women given varying chances of survival.  It is the tumour that is small, localized and well defined, which has been discovered early by screening mammography, that gives a woman the best chance at survival.

Successful mammography depends on the relative densities of breast tissues and the tumour.  Dense breasts make the tumour more difficult to see because they show as white as does the tumour.  The white on white thus makes mammograms harder to interpret.  Around 30% of premenopausal women have dense breasts, which may help explain why one in four tumours are missed by screening mammograms in women between the ages of 40-49.  All women are important, don't get me wrong, but when cancer is missed in young women the consequence can be tragic when children are left without mothers!


If I am successful with this petition, I hope to see there become a formal requirement in British Columbia that following a screening mammogram, a woman is informed if she has dense breasts.  She may then, after discussion with her family doctor, seek imaging by methods which do not depend so much on tissue density, such as ultrasound or MRI.

I hope you feel you can sign my petition.  To do so, click on the link in the right hand column.  Together we might be able to make a difference!


For those interested, if you want to make your own graph on different cancers you can use the WHO statistics by clicking here.