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.
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