Well I did manage to get copies of my mammograms in late June. In July my dad got taken ill and after 12 days in hospital died of what the doctors think was liver cancer. We will never know as no autopsy was done. I am at a loss without him. He had done so much research into cancer, rates in different countries and the different rates even within a large country. He tried repeatedly to get papers published and had other scientists that agreed with him but we feel because he wasn't an MD, the medical community didn't want to know! It was very hard and demoralizing. My dad was a world, renowned high energy physicist and I believe that one day it will come out that he was right! I am not going to share his knowledge as this blog has failed miserably. People just don't seem to want to sign. They will take the knowledge and run, protecting themselves and their family, but not helping to make a difference. My dad was a brilliant, kind and loving man. He was so devastated by my illness, the grief it caused me and our family that I owe it to him to try and get some kind of action. I have more surgery November 4 if I am healthy enough and will then start to try and get some action. I will start with the Premier of my province but hold little hope for anything there. I will then try some of the female senators who could get Patrick Brown's bill (see side margin) through the House of Senate but I hold little hope with them either. They have been sitting on this bill for a LONG time. I was able to do nothing for my dad in his illness and now want to try to make a change.
My biggest wish is that everybody who visited this site, or who I have told about the issue, signs the petition. The number of people who now know to ask about breast density is growing. I'd like to think of it as a ripple that is spreading. In return for a critical piece of information that could make a huge difference in your life, all I ask is that you sign. In memory of my dad, I am going to try and get action. My illness, treatment, time of work has cost the system FAR, FAR more than a breast MRI or breast ultrasound would ever have done.
At this point in time, I am also realizing that a return to the adoption process and the likelihood of becoming a mother is next to nil!
Friday 24 October 2014
Tuesday 27 May 2014
I am a third party when it comes to my own medical reports!
This is my second post for today!
This morning I phoned screening mammography to try and get copies of the reports from my mammograms that were sent to my GP. I can't get them. I can get copies of the "happy gram" form letters I wrote about in an earlier post but not the reports. Apparently they can't release the reports to me because even though I am the patient, I am considered a "third party"! If this isn't bull you know what then tell me what is! If you have any ideas as to how I can get them please leave me a comment.
I knew these reports would be challenging to get and even voiced my concerns to family and friends and was told that I needn't worry about that as I could get them. Well ladies, please know that you can't get a copy of the report sent to your doctor unless you get it from him!
Tomorrow I am going to try and get a copy of the film images from 2008 and 2010. Wish me luck!
This morning I phoned screening mammography to try and get copies of the reports from my mammograms that were sent to my GP. I can't get them. I can get copies of the "happy gram" form letters I wrote about in an earlier post but not the reports. Apparently they can't release the reports to me because even though I am the patient, I am considered a "third party"! If this isn't bull you know what then tell me what is! If you have any ideas as to how I can get them please leave me a comment.
I knew these reports would be challenging to get and even voiced my concerns to family and friends and was told that I needn't worry about that as I could get them. Well ladies, please know that you can't get a copy of the report sent to your doctor unless you get it from him!
Tomorrow I am going to try and get a copy of the film images from 2008 and 2010. Wish me luck!
"When Mammograms Lie" an article by reporter Sharon Kirkey of Post Media
Last Friday in the Vancouver Sun there was an article by Sharon Kirkey about how mammograms miss cancer. I contacted her and the full article can be found on line here. I encourage you to go and read and look at the great mammography images of dense breasts that Sharon has posted. You will see why looking for cancer in dense breasted women is like looking for a snowball in a blizzared. I forget where I read that but love the imagery as it is so much more visual than "white on white"!
http://o.canada.com/health/when-mammograms-lie-how-cancer-can-sneak-past-our-greatest-screening-techniques
As I know by now, I am not alone in my experience. Sharon Kirkey mentions the private member's bill that MP Patrick Brown put forward and that is now stalled in the senate. Mi-Jung Lee and Melanie Nagy have both contacted MP Brown but it is our senators that we need to light a fire under to get them to pass this bill. You can read about the bill here. I am going to contact some of the BC senators and see if I can set up a meeting with them.
Sharon Kirkey also quotes Dr. Christine Wilson of BC Screening Mammography who says there limitations with mammography as with all technology. That is okay, most things have limitations but if women were informed they have dense breasts they could do something about it, namely get an ultrasound or an MRI. Had I been told my breasts were dense, I would have paid for an ultrasound privately.
Most alarmingly for me in the article is the attitude of Dr. Steven Narod, a world leader in the field of breast and ovarian cancer genetics at Women’s College Research Institute in Toronto. From Sharon Kirkey's article, Dr. Narod says, "It's putting a lot on women's plates. I think we've already got enough fear of breast cancer in the population without exacerbating it." He goes on to say, "Should we make the situation worse by telling women they have highly dense breasts? What’s the response? Get an MRI? An MRI is an expensive test. Is that where we’re heading? I think it should be clear-thinking scientists and policy people versed in healthcare evaluation to be making these recommendations", and not a political response to pressure from advocacy groups, he said. This makes me want to scream - not a political response from advocacy groups! He clearly hasn't seen what advocacy groups in the US have done to change the rule in 14 states! Does it all come down to money! Is my life and the lives of all the other women with dense breasts not important? Now with late diagnosis, I live daily with the fear of recurrence not to mention the increased risk of recurrence.
The article also explains that, "one concern is that ultrasounds and MRIs may pick up too many 'false positives' — abnormalities that lead to more anxiety-provoking tests and painful needle biopsies and other investigations for suspicious spots that turn out to be entirely normal." Let me tell you I would MUCH RATHER have been a false positive than then false negative I was. The enlarged lymph node on my left side (noncancerous so far) turned out to be benign and although it is was somewhat stressful waiting for the biopsy and the results it was NOTHING compared to what I have lived through and continue to live through.
A lot of people are visiting this blog but not signing the petition. I want to clarify that I am totally supportive of women going and getting regular mammograms, I can't tell you how important this is. Just be armed with the knowledge from someone who learned the hard way that if you have dense breasts the cancer can be missed. All I would like to ask, is that if you have learned to ask, "Do I have dense breasts? Do I need further testing?" from reading this blog or seeing the pieces on CTV please sign the petition. Please help others and help make a change for the women of British Columbia.
http://o.canada.com/health/when-mammograms-lie-how-cancer-can-sneak-past-our-greatest-screening-techniques
As I know by now, I am not alone in my experience. Sharon Kirkey mentions the private member's bill that MP Patrick Brown put forward and that is now stalled in the senate. Mi-Jung Lee and Melanie Nagy have both contacted MP Brown but it is our senators that we need to light a fire under to get them to pass this bill. You can read about the bill here. I am going to contact some of the BC senators and see if I can set up a meeting with them.
Sharon Kirkey also quotes Dr. Christine Wilson of BC Screening Mammography who says there limitations with mammography as with all technology. That is okay, most things have limitations but if women were informed they have dense breasts they could do something about it, namely get an ultrasound or an MRI. Had I been told my breasts were dense, I would have paid for an ultrasound privately.
Most alarmingly for me in the article is the attitude of Dr. Steven Narod, a world leader in the field of breast and ovarian cancer genetics at Women’s College Research Institute in Toronto. From Sharon Kirkey's article, Dr. Narod says, "It's putting a lot on women's plates. I think we've already got enough fear of breast cancer in the population without exacerbating it." He goes on to say, "Should we make the situation worse by telling women they have highly dense breasts? What’s the response? Get an MRI? An MRI is an expensive test. Is that where we’re heading? I think it should be clear-thinking scientists and policy people versed in healthcare evaluation to be making these recommendations", and not a political response to pressure from advocacy groups, he said. This makes me want to scream - not a political response from advocacy groups! He clearly hasn't seen what advocacy groups in the US have done to change the rule in 14 states! Does it all come down to money! Is my life and the lives of all the other women with dense breasts not important? Now with late diagnosis, I live daily with the fear of recurrence not to mention the increased risk of recurrence.
The article also explains that, "one concern is that ultrasounds and MRIs may pick up too many 'false positives' — abnormalities that lead to more anxiety-provoking tests and painful needle biopsies and other investigations for suspicious spots that turn out to be entirely normal." Let me tell you I would MUCH RATHER have been a false positive than then false negative I was. The enlarged lymph node on my left side (noncancerous so far) turned out to be benign and although it is was somewhat stressful waiting for the biopsy and the results it was NOTHING compared to what I have lived through and continue to live through.
A lot of people are visiting this blog but not signing the petition. I want to clarify that I am totally supportive of women going and getting regular mammograms, I can't tell you how important this is. Just be armed with the knowledge from someone who learned the hard way that if you have dense breasts the cancer can be missed. All I would like to ask, is that if you have learned to ask, "Do I have dense breasts? Do I need further testing?" from reading this blog or seeing the pieces on CTV please sign the petition. Please help others and help make a change for the women of British Columbia.
Wednesday 21 May 2014
Victoria Day Long Weekend
This past weekend was very challenging for me in two ways.
First, Friday, May 17, 2013 was my first session of chemo and the Friday before the long weekend. It is another anniversary marker! How glad I am that is hopefully behind me. I say hopefully because I fear another primary cancer in the left breast. Heck, it was missed before so how do I know that it isn't going to happen again. From what I have read a second primary cancer in the breast is a much better thing to happen than mets! (I have heard of one woman who 7 years after her first breast cancer got breast cancer in the other breast.) I think all breast cancer patients live in fear of mets and as mine was Stage III with advancement to lymph nodes, I am at much greater risk of recurrence. Although I say better, that isn't entirely true as one can only have so much AC chemo as it is very cardiac toxic. I already had mega doses of it last year! It is unclear whether I could have the AC chemo again but I am not going there. That is one question that I am not asking. I am looking forward and working and doing everything I can to prevent it coming back in the other breast.
The second reason why this weekend was so hard is that two years ago on the Saturday LC and I flew to the country I was adopting from and spent 10 days there visiting orphanages. The process has now changed (Jan 2013) and families only travel when they receive and accept a proposal/referral. This was an incredible trip and full of many memories and experiences. I met a wonderful lady, a friend of a friend, down there who I would love to see again. The last orphanage we visited had a 7 year old girl that was available, soon to be 8. She thought I could take her home then and there and on the last day was standing at the orphanage gate with her purse, doll and a pop bottle with three flowers in it. I came home and decided to move forward and adopt this little girl. R was a little bit older than I had been approved for so I had to change my homestudy. A month after coming home I got an email telling me she was no longer available! Needless to say I was heartbroken. You can read my first and only "heart" letter to her here. Fast forward to Mar. 2013 when I got a phone call about "N" who was 3 1/2 years old. I injured my knee and had to delay travel until early May and then return to court in Nov. 2013 or Jan 2014 to complete the adoption. Needless to say that it NEVER happened as on April 18, 2013 I was diagnosed with cancer.
Please don't tell me it is just as well or good that I got the cancer in 2013 not 2014 after I got her home. In my head I can rationalize that, in my heart there is just pure hurt, lots of ache and emptiness. I was so busy fighting the chemo and treatments that it wasn't until Jan or Feb that I began to realize my loss - my loss of motherhood. Mother's Day was very difficult this year as well as it should have been my first as a mum!
I am not sure if I will ever be able to forgive the mammography system for missing my tumour. I have to wait a while to see if the cancer comes back, I don't want to say how long publically, and then feel that I may be getting too old and taking too much of a risk.
Remember, if cancer is caught early it often gives patients the best odds at survival. Early in regards to breast cancer means those darned mammograms being read well and women informed of their breast density!
First, Friday, May 17, 2013 was my first session of chemo and the Friday before the long weekend. It is another anniversary marker! How glad I am that is hopefully behind me. I say hopefully because I fear another primary cancer in the left breast. Heck, it was missed before so how do I know that it isn't going to happen again. From what I have read a second primary cancer in the breast is a much better thing to happen than mets! (I have heard of one woman who 7 years after her first breast cancer got breast cancer in the other breast.) I think all breast cancer patients live in fear of mets and as mine was Stage III with advancement to lymph nodes, I am at much greater risk of recurrence. Although I say better, that isn't entirely true as one can only have so much AC chemo as it is very cardiac toxic. I already had mega doses of it last year! It is unclear whether I could have the AC chemo again but I am not going there. That is one question that I am not asking. I am looking forward and working and doing everything I can to prevent it coming back in the other breast.
The second reason why this weekend was so hard is that two years ago on the Saturday LC and I flew to the country I was adopting from and spent 10 days there visiting orphanages. The process has now changed (Jan 2013) and families only travel when they receive and accept a proposal/referral. This was an incredible trip and full of many memories and experiences. I met a wonderful lady, a friend of a friend, down there who I would love to see again. The last orphanage we visited had a 7 year old girl that was available, soon to be 8. She thought I could take her home then and there and on the last day was standing at the orphanage gate with her purse, doll and a pop bottle with three flowers in it. I came home and decided to move forward and adopt this little girl. R was a little bit older than I had been approved for so I had to change my homestudy. A month after coming home I got an email telling me she was no longer available! Needless to say I was heartbroken. You can read my first and only "heart" letter to her here. Fast forward to Mar. 2013 when I got a phone call about "N" who was 3 1/2 years old. I injured my knee and had to delay travel until early May and then return to court in Nov. 2013 or Jan 2014 to complete the adoption. Needless to say that it NEVER happened as on April 18, 2013 I was diagnosed with cancer.
Please don't tell me it is just as well or good that I got the cancer in 2013 not 2014 after I got her home. In my head I can rationalize that, in my heart there is just pure hurt, lots of ache and emptiness. I was so busy fighting the chemo and treatments that it wasn't until Jan or Feb that I began to realize my loss - my loss of motherhood. Mother's Day was very difficult this year as well as it should have been my first as a mum!
I am not sure if I will ever be able to forgive the mammography system for missing my tumour. I have to wait a while to see if the cancer comes back, I don't want to say how long publically, and then feel that I may be getting too old and taking too much of a risk.
Remember, if cancer is caught early it often gives patients the best odds at survival. Early in regards to breast cancer means those darned mammograms being read well and women informed of their breast density!
Breast Ultrasound and stranding
After seeing my breast surgeon last week who by the way is simply an amazing, outstanding and incredible lady, I am going for a breast ultrasound this afternoon. Her MOA is also fabulous. I had phoned and asked if the surgeon could request the images from BCCA as the technician said she would just get the report. The surgeon was on holiday but her MOA did this for me. Thank you N! At my appointment the surgeon was able to call up the images on her computer and show them to me. This was great! Nobody has done this before and it was helpful to see it as she was explaining it. The remaining breast shows some density and stranding and a few calicifications. Due to my past experience (repeated miss of cancer detection on mammograms for those new to the blog) which has led to my lack of trust with mammograms and anxiety about recurrence, this wonderful lady ordered an ultrasound. I could have hugged her! She totally gets it and said she doesn't blame me in the least for feeling the way I do. My MO has never said this to me.
I tried looking up "stranding" in regards to density in breast tissue but can't seem to find any good links. The way I heard it explained is that the dense tissue is spread out like a string across the breast as opposed to being a lump or mass of dense tissue. This, I believe, is what makes it harder to feel and detect.
I am still working on getting all the images and reports from my old mammograms. I have kind of taken two weeks off due to a whack of appointments and a biopsy on another body part.
I tried looking up "stranding" in regards to density in breast tissue but can't seem to find any good links. The way I heard it explained is that the dense tissue is spread out like a string across the breast as opposed to being a lump or mass of dense tissue. This, I believe, is what makes it harder to feel and detect.
I am still working on getting all the images and reports from my old mammograms. I have kind of taken two weeks off due to a whack of appointments and a biopsy on another body part.
Friday 9 May 2014
Don't be as stupid as me - ask if your location has a digital machine
In 2010 at the age of 42 I believed I was doing the right thing for going by a mammogram and that if I was unfortunate enough to have breast cancer it would be caught early. If you have read this blog you will know how wrong I was! I went to one of the local stationary sites for three years and as you may have already read got the "happy gram" report. In 2013 after a mammogram at another location, a well respected location on a main thoroughfare, my cancer was detected. How I wish I had gone there in 2010. The lady I spoke to there said their radiologists are very thorough. I told her I know that now and tell everybody I can to go to that site.
This afternoon I called the first site, the one I hold a lot of resentment towards. Thanks to a woman at the Breast Cancer Support Group I went to last night, I was motivated to get my records. That and the fact I have a biopsy for another mass in another location on Tuesday that was missed on a scan in Jan. 2014. It turns out my first location, in the Shaughnessy area, did not have a digital machine until 2012! This doesn't excuse how my cancer was missed but instead highlights the importance of money being put towards prevention, not just a cure. I have to phone records next Tuesday to see if I can get a copy of the x-rays/film on CD . At least I learned that they weren't digital until 2012. It doesn't excuse what happened to me but if cancer in dense breasted women is like looking for a snowball in a snowstorm, then lets at least have the medical folks looking for it on the best machines possible. I made an assumption and a stupid one in that I thought being who they are, they would have the latest and best equipment! . Man was I wrong! Wrong, wrong, wrong!
I then phoned the location I went to last year and they have been digital for three years. The lady there was wonderful and very kind and helpful. For a small fee ($25) which I feel is most reasonable I am getting my Jan. 23, 2012 screening mammogram, April 2, 2013 screening mammogram, and then the call-back diagnostic mammograms and ultrasound. She will phone me next week when the CD is ready. I don't recall going there in 2012 and believe that this mammogram was done at the first location after it became digital. Next Tuesday I am phoning records at the first location and attempting to get the 2010 and 2011 mammograms (old film ones) copied to CD. I certainly won't be able to read them but I think I would like to take them to a private radiologist to have them examined. If there were no warning signs,, then my cancer was incredibly aggressive to have got to stage III in a year. I have used the word 'exploded' and my surgeon called it "big and sneaky." It was diffuse and over 13cm of tissue when pathology examined it. My cancer was so aggressive that there was still active cancer in the breast they took! I am going to be looking for somebody who can help me look at the images and if there were issues that were missed, then I need to do some thinking.
This afternoon I called the first site, the one I hold a lot of resentment towards. Thanks to a woman at the Breast Cancer Support Group I went to last night, I was motivated to get my records. That and the fact I have a biopsy for another mass in another location on Tuesday that was missed on a scan in Jan. 2014. It turns out my first location, in the Shaughnessy area, did not have a digital machine until 2012! This doesn't excuse how my cancer was missed but instead highlights the importance of money being put towards prevention, not just a cure. I have to phone records next Tuesday to see if I can get a copy of the x-rays/film on CD . At least I learned that they weren't digital until 2012. It doesn't excuse what happened to me but if cancer in dense breasted women is like looking for a snowball in a snowstorm, then lets at least have the medical folks looking for it on the best machines possible. I made an assumption and a stupid one in that I thought being who they are, they would have the latest and best equipment! . Man was I wrong! Wrong, wrong, wrong!
I then phoned the location I went to last year and they have been digital for three years. The lady there was wonderful and very kind and helpful. For a small fee ($25) which I feel is most reasonable I am getting my Jan. 23, 2012 screening mammogram, April 2, 2013 screening mammogram, and then the call-back diagnostic mammograms and ultrasound. She will phone me next week when the CD is ready. I don't recall going there in 2012 and believe that this mammogram was done at the first location after it became digital. Next Tuesday I am phoning records at the first location and attempting to get the 2010 and 2011 mammograms (old film ones) copied to CD. I certainly won't be able to read them but I think I would like to take them to a private radiologist to have them examined. If there were no warning signs,, then my cancer was incredibly aggressive to have got to stage III in a year. I have used the word 'exploded' and my surgeon called it "big and sneaky." It was diffuse and over 13cm of tissue when pathology examined it. My cancer was so aggressive that there was still active cancer in the breast they took! I am going to be looking for somebody who can help me look at the images and if there were issues that were missed, then I need to do some thinking.
Friday 2 May 2014
My First Post-Cancer Mammogram - aka Scanxiety or Testxiety
On Tuesday, April 29, I had my first post-cancer mammogram. I didn't think I'd be too worried about it but as the day grew closer I had this nagging thought of, "What if they miss the cancer again?" My oncologist had assured me back during treatment that they would look at the post-cancer mammograms very closely. The mammogram was initially scheduled for October 2014 but I begged the GPO to not wait that long. That would be a year since my MRI in October 2013 and it just seemed too long given my history. A compromise was reached in that I could have the mammogram in April 2014, if I then agreed to wait and have the next one in 2015. I know that even within our province there seems to be different protocols for post-cancer screening; who gets what when and how often. So I agreed to wait a year for the next one (April 2015), having learnt that a private clinic in my city does breast ultrasounds (necessary for women with dense breasts) for $500 a breast and that with a referral from my GP I could cover myself this October! Hey at last I get a deal and break on something! So off to the mammogram I went with my friend P.
The sign on the door said "digital mammography". I asked the young technician if she knew if the location/centre where I had my first three mammograms had a digital machine, she assured me they did. I was curious due to my research and this blog post by the head of screening mammography. In this post the doctor explains that over 65% of the 37 fixed screening centres in BC are digital. From my reading, digital machines provide better images and if you have dense breasts you REALLY need a digital screening and then more tests. This doctor was the Cancer Agency's guest blogger for March. Click here to read the other posts. (BTW: at 65% that means 24/37 fixed centres are digital). Hmmm, instead of that elusive cure I mentioned in my initial post, lets get these machines updated.
Continuing on, the very friendly technician tells me she will have to do several pictures from each angle as the machine she was using had smaller plates, or something like this. I told her that was fine, as I thought to myself do as many as you need to get an accurate picture. I have already had so much radiation from my radiation therapy, scans and different tests, I really don't think a little bit more will hurt!
She then asks me if the location I went to last year (different from the previous years) did both breasts. I was a bit puzzled and replied yes they did both and then they called me back for further mammograms (diagnostic) to the right breast. She says she can only see the ones of the right breast and will call for the other ones. I guess for the radiologist to be able to examine and review Tuesday's mammogram of the left breast, he or she needs at least one old one for comparison.
A mistake I keep making in my battle with cancer is in comparing the education and medical systems. (I know both systems are overburdened and underfunded and yet both working very hard to do their best.) I wrote in an earlier post about how I was never "red flagged" by screening mammography and how I wish I had been. I don't know how many children I have "red flagged" in my career but I do it with the belief that catching a problem early is better! OK, put the red flag issue aside as there is nothing to be done about it now and no use crying over spilled milk and what didn't happen! Back to the fact the technician could only find one mammogram and my latest comparison. When a child has a problem (academically, behaviourally, socially or emotionally), before taking the child to school-based team (a meeting with relevant school staff where the child is discussed) one of the things teachers do is to review the child's file to see if this problem is new or on-going. Key word, review.
In an on-going attempt to educate others here is a link to the Fact Sheet on mammograms from the National Cancer Institute website. They also have information on the different types of breast screening.
The sign on the door said "digital mammography". I asked the young technician if she knew if the location/centre where I had my first three mammograms had a digital machine, she assured me they did. I was curious due to my research and this blog post by the head of screening mammography. In this post the doctor explains that over 65% of the 37 fixed screening centres in BC are digital. From my reading, digital machines provide better images and if you have dense breasts you REALLY need a digital screening and then more tests. This doctor was the Cancer Agency's guest blogger for March. Click here to read the other posts. (BTW: at 65% that means 24/37 fixed centres are digital). Hmmm, instead of that elusive cure I mentioned in my initial post, lets get these machines updated.
Continuing on, the very friendly technician tells me she will have to do several pictures from each angle as the machine she was using had smaller plates, or something like this. I told her that was fine, as I thought to myself do as many as you need to get an accurate picture. I have already had so much radiation from my radiation therapy, scans and different tests, I really don't think a little bit more will hurt!
She then asks me if the location I went to last year (different from the previous years) did both breasts. I was a bit puzzled and replied yes they did both and then they called me back for further mammograms (diagnostic) to the right breast. She says she can only see the ones of the right breast and will call for the other ones. I guess for the radiologist to be able to examine and review Tuesday's mammogram of the left breast, he or she needs at least one old one for comparison.
A mistake I keep making in my battle with cancer is in comparing the education and medical systems. (I know both systems are overburdened and underfunded and yet both working very hard to do their best.) I wrote in an earlier post about how I was never "red flagged" by screening mammography and how I wish I had been. I don't know how many children I have "red flagged" in my career but I do it with the belief that catching a problem early is better! OK, put the red flag issue aside as there is nothing to be done about it now and no use crying over spilled milk and what didn't happen! Back to the fact the technician could only find one mammogram and my latest comparison. When a child has a problem (academically, behaviourally, socially or emotionally), before taking the child to school-based team (a meeting with relevant school staff where the child is discussed) one of the things teachers do is to review the child's file to see if this problem is new or on-going. Key word, review.
In an on-going attempt to educate others here is a link to the Fact Sheet on mammograms from the National Cancer Institute website. They also have information on the different types of breast screening.
Friday 18 April 2014
My Cancerversary and the requirement to inform women works in California
Well, it has been one year since I was diagnosed. On Thursday, April 18, 2013 I got the phone call from my GP that the biopsy had come back malignant and that I had a breast cancer. It was a week or two later I learned the extent of it, stage III invasive ductual carcinoma with spread to at least one lymph node and that it had been missed on mammograms! I have done everything I can in the last year to fight the dreaded "C" - chemotherapy, radiation, surgery, hormone medication. I can't tell you how cancer has changed my life (I lost my daughter) and the life of my family. There isn't too much to say today as I continue to suffer horribly with the combination of Tamoxifen and Goserelin. One stops the cancer cells absorbing estrogen and the other, because we don't know if I am in chemopause or menopause, stops the pituitary gland telling the ovaries to produce estrogen. Let's just say they aren't a whole heck of a lot of fun and make life pretty miserable!
I started this petition to try to help others, women and men, from going through what I have gone through but I seem to have struck out. 183 signatures is hardly enough for anybody to take any notice of you. What I am asking for is so easy, so cost-saving to government and above everything else life-saving!
Men as well as women can sign my petition and a big thank you to the few men that have. Breast cancer affects men as well when it is their wife, their sister, their sister-in-law, their daughter, their friend - or like Patrick Brown MP (see a previous post) - their colleague, I could go on but I think you get the picture.
It seems only about 1 in 10 visitors to the blog sign. A few people have thanked me for the "heads-up" as they now know to ask but haven't signed. That's great for them, but what about all the other women that haven't seen the pieces on CTV news or haven't read this blog? It makes me very upset and angry (I'll be hosest) that some people hold onto this knowledge but can't put their name to helping others. Does it take my life to take a turn for the worse (ie: the cancer to come back or metastasise) for this petition may get some attention! I don't know why people are afraid of signing? If you have feedback for me that would help me get more signatures, please leave me a comment.
I know that for one woman the requirement to tell women if they have dense breasts in California (see the Are You Dense? website) alerted her to that fact where she hadn't been told when in BC. Please help me to do something to make a change for women in British Columbia!
I have a mammogram on April 29 and I am going to ask. I'm not sure I'll get an answer but I will ask. I didn't know to ask and believed my "happy grams" were good news. I have since learned the hard way and unfortunately still have the left breast to protect. Oh how I wish I could have a double mastectomy and not have to live in fear!
I started this petition to try to help others, women and men, from going through what I have gone through but I seem to have struck out. 183 signatures is hardly enough for anybody to take any notice of you. What I am asking for is so easy, so cost-saving to government and above everything else life-saving!
Men as well as women can sign my petition and a big thank you to the few men that have. Breast cancer affects men as well when it is their wife, their sister, their sister-in-law, their daughter, their friend - or like Patrick Brown MP (see a previous post) - their colleague, I could go on but I think you get the picture.
It seems only about 1 in 10 visitors to the blog sign. A few people have thanked me for the "heads-up" as they now know to ask but haven't signed. That's great for them, but what about all the other women that haven't seen the pieces on CTV news or haven't read this blog? It makes me very upset and angry (I'll be hosest) that some people hold onto this knowledge but can't put their name to helping others. Does it take my life to take a turn for the worse (ie: the cancer to come back or metastasise) for this petition may get some attention! I don't know why people are afraid of signing? If you have feedback for me that would help me get more signatures, please leave me a comment.
I know that for one woman the requirement to tell women if they have dense breasts in California (see the Are You Dense? website) alerted her to that fact where she hadn't been told when in BC. Please help me to do something to make a change for women in British Columbia!
I have a mammogram on April 29 and I am going to ask. I'm not sure I'll get an answer but I will ask. I didn't know to ask and believed my "happy grams" were good news. I have since learned the hard way and unfortunately still have the left breast to protect. Oh how I wish I could have a double mastectomy and not have to live in fear!
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.
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!
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
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.
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!
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
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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| 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.
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/
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?"
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
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!
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.
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.
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