Breast Cancers that Disappear Without Treatment?
Comments
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The controversy over mammos is exactly why I now do thermographs. If you can find a experienced tech like I have, the stats that therms find tumors are the same as mammos, without the worry of radiation or cancer cells being dispersed because of the compression. Add to that that they are painless and inexpensive compared to mammos. If the therm shows anything suspicious, it can be followed up with an ultrasound or mri. I believe that if more women knew the benefits of thermography, there would be less bc because women would be more likely to have them done every 6 months in high risk cases, since they are painless and safe. So why aren't they accepted, in spite of the mounting evidence of their benefits? It all goes to $$$$$ of course. Years ago, hospitals became committed to mammos. They are a cash cow. There is no incentive to change to something that will cost them money in the long run. Plus, they would have to retrain their techs to read them. It will happen eventually, as more women demand alternatives. It would have happened twenty years ago if men had to get their private parts smashed!
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Well, I have to add that a digital mammo found my tiny DCIS before it even became large enough to need rads. I am grateful for my mammo. I read that thermographs do not see DCIS, but I may be wrong. I know that not all DCIS progresses to IDC, but all of IDC starts as DCIS. Mammos that are read properly are very good at finding DCIS.
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Hear, hear vivre! Smash the men parts! LOL
I've always said that about the pain of mammograms. Thermographs and MRI's on demand are not available in Canada. I have waited as long as 9 months for an MRI. They run 24 hours a day here and can't even keep up. We just don't have the funding but we have free health care. That's why Canada bitches about wanting a 2-tier system. So rich people can pay and get treatment right away and the rest of us use the public services. I have no problem with that as long as they use private equipment (there are some secret places already in use).
I don't mind using or hearing the bitch word as I am not one so I don't take offense. It's just a good word to explain the frustration and semi-anger that it displays.
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Umm Barbe1958 on demand doesn't exists anywhere.. Once you have had cancer you are considered high risk and either Canada or US will allow an MRI.. the fact that you live in Barrie is more to the point that you have to wait so long for the breast MRI.. and here in the states there are problems too with MRI's not being as available as say in large city's. I'd be willing to bet you wouldn't wait so long if you were living in Toronto.. And you just made my point, if more women were insisting that the newest technology be used we would have more MRI centers and, eventually they would/will surpass mammos.
YOU might not mind hearing the "bitch" word but other's do - I do - and strong women have worked too hard to have to hear this from another women and then have it endorsed with the phrase that only a "bitch" might have a problem hearing the word!!! Don't you get this at all ?? You are dismissing a great deal of women and that happens too often in this wordl without your helping it! It's (bitch) is only a "good word" if you are describing a female dog!
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Vivre: I'm all for the thermograms too! Anything that works and especially if it is not dangerous! Do you know the average cost of a thermogram and how we would know if we had an individual that is good at reading them? I have been interested since you brought them up earlier, but can't find a lot of detail on them - mostly negative by conventional medicine.. How did you find your centre and/or technician? Thanks for the info in advance! Best
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American Cancer Society ties to Mammo
Mammography
The ACS has close connections to the mammography industry. Five radiologists have served as ACS presidents, and in its every move, the ACS reflects the interests of the major manufacturers of mammogram machines and films, including Siemens, DuPont, General Electric, Eastman Kodak, and Piker. In fact, if every woman were to follow ACS and NCI mammography guidelines, the annual revenue to health care facilities would be a staggering $5 billion, including at least $2.5 billion for premenopausal women. Promotions of the ACS continue to
lure women of all ages into mammography centers, leading them to believe that mammography is their best hope against breast cancer. A leading Massachusetts newspaper featured a photograph of two women in their twenties in an ACS advertisement that promised early detection results in a cure "nearly 100 percent of the time." An ACS communications director, questioned by journalist Kate Dempsey, responded in an article published by the Massachusetts Women's
Community's journal Cancer: "The ad isn't based on a study. When you make an advertisement, you just say what you can to get women in the door. You exaggerate a point. . . . Mammography today is a lucrative [and] highly competitive business."In addition, the mammography industry conducts research for the ACS and its grantees, serves on advisory boards, and donates considerable funds. DuPont also is a substantial backer of the ACS Breast Health Awareness Program; sponsors television shows and other media productions touting mammography; produces advertising, promotional, and information literature for hospitals, clinics, medical organizations, and doctors; produces educational films; and, of course, lobbies Congress for legislation promoting availability of mammography services. In virtually all of its important actions, the ACS has been strongly linked with the mammography industry, ignoring the development of viable alternatives to mammography.
The ACS exposes premenopausal women to radiation hazards from mammography with little or no evidence of benefits. The ACS also fails to tell them that their breasts will change so much over time that the "baseline" images have little or no future relevance. This is truly an American Cancer Society crusade. But against whom, or rather, for whom?
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barbe1958, you wrote: "all are bitching about the cure."
It is proud I am that I am bitching, and I will keep on bitching even more. Actually, thank you for this expression. Perhaps I will even use it in the future (to describe my attitude towards change). I had been thinking that it would be a good idea for our forum Mena to write a book about her highly popular "Mojo" subject. I am now thinking that "Bitching about the cure" would make a pretty eye-catching title for a book about the breast cancer experience. Please note that I am NOT being sarcastic. I have been told all my life that I should be a writer, and I am feeling this stronger and stronger need to put my breast cancer experience into the written form of expression to share with others. So, maybe I'll be focused enough to produce a piece of art entitled just that way. Thanks to you.
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Dear orange1:
A few days ago, I have written on "Calling All Survivors (that's all of us)" thread. I was answering back to a lady who described her tumor as being HER+, but had elected to turn down chemo. I was telling her that, in my opinion, she should, in her case, give chemo a thought, because her type of tumor benefits from chemotherapy, while ER+, PR+ tumors do not.
You have a small tumor, and by all means: do not change your plans about life: several of my support group members have been HER+ for almost a decade and even more. What I meant to say is that I feel current treatments are inadequate for all of us, but even more so for the more aggressive tumors. So please move ahead with your plans. With such a small tumor, I don't see why you shouldn't
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I found a lump in my remaining breast 2 months ago, they did a mamo and found it to be suspicious. They sent me to a Breast Specialist, he is supposedly one of the leading BS in the US. Anyway, he said that I should have had a breast MRI from the start, and that next year I will have an MRI instead of a mammogram. I asked him why and he said ANY woman who has be dx with BC should always have MRI's if they have remaining breast tissue. I found it odd that he said this, with everything you hear about mamo's why would he demand an MRI? I asked him and he said for normal women mamos are fine but for any woman dx with BC it just isn't accurate enough. So if it isn't accurate enough for women with BC then why is it accurate enough for a"normal woman"? I just found it strange that a leading BS doesn't have much faith in mamos.
Oh and he did a fine needle biopsy and the lump was B9.
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Can I just write bitching? There I feel better
Flalady
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Diana63: Congratulations on your B9 biopsy. I am sooooo happy for you. But WHAT you must have gone through waiting for your results.
I also find it suspicious that more and more top oncologists/breast surgeons no longer view mammos as "sufficient." They now have to double-check and triple check with other diagnostic "tools." The problem I have with that is that I think that's always how change happens, after it becomes clear that a treatment has been inadequate for too long: change would have to be approved by the American Board of Oncology, by this corps, by that corps, Diddah, Diddah, Diddah...
While they are beating around the bush for a good way to say that they have been wrong all along without actually saying it (an Art they have mastered)..... While they are doing that little chicken dance around the truth, people (men and women alike depending on the substance in question) continue to be put through dangerous and useless treatment. That's why I, like millions, was put through chemo that raises my lifetime general cancer risk to 3%. And we are now being gracefully informed that chemo does not work on our types of tumors. Thank you. They should have told us before putting us through it. And wasting precious resources at the same time, which causes insurance costs to keep on roaring ahead.
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Yasmin I share your sentiments about ER+ cancers and chemo. I am amazed by how much faith people put in chemotherapy and in diagnostic tools like mammograms. It is almost as if they don't want to hear the truth. This has nothing to do with "alternative" treatments - it is cold hard scientific fact .... ER+ tumours do not respond as well to chemo as ER-. And there are growing numbers of oncologists who suspect that they may not respond at all and that all of the reduction in risk recurrence is coming from endocrine therapy. In which case thousands of women worldwide are undergoing excruciating treatment for no reason and compromising their general health - and in the case of countries without health care, like the USA, are paying through the nose for it too.
Mammograms are just one diagnostic tool in a whole armoury of gadgets. At British breast clinics several methods are used and no doctor would ever depend solely on a mammogram these days as their weaknesses are well documented. They are notoriously hopeless in diagnosing lobular or inflammatory and with young women whose breasts are more dense they are next to useless.
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greenfrog: and yes. And I probably forgot to mention that I had been faithfully doing my yearly mammogram for 10 (TEN) freaking years prior to diagnosis. Oh! How proud I was of myself for doing my yearly mammo without failing.
OK....Mammo NEVER saw anything coming because I have dense breasts.
Think I am an oddity? Hardly. Several of us in my support group are in that same case: mammo never saw it coming. Now: Our support group is a shared grouped between two HUGE organizations, so keep in mind that there are about 300 of us in that particular support group (we keep in touch by email, and a few of us meet once a month). So when I say MANY, I mean MANY of us, indeed, found their tumors through self-examination or medical examination. Not through mammo.
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There are lots of links for info on thermography. Here is a really good one:
http://www.breastthermography.org/index.htm
They have a great explanation and show the difference in cancerous and healthy breasts. Therms can actually detect suspicious areas long before mammos due. One of the critcisms is that they may produce false positives. That is why it is always important to follow up with US or MRI.
If you live near any major US city you can probably find docs who do thermography. It is common for chiropractors to train in reading them, since thermography has been considered a valuable tool for determining joint and muscle injuries for decades. Just make sure you find someone who has read a lot of them. Just like those who read mammos, they are only as accurate as the tech who reads them.
My cost about $150 and is sometimes covered by insurance. I had to pay for it myself, but I would have paid more for a mammo, because I have a huge deductable. Just like mammos, it is good to have a baseline done so that comparisons can be made on those thereafter.
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Good grief - this topic riled up some folks. If mammagrams are not the best tool for detecting early breast cancer and in many cases are definitely useless, why are we touting them as some Godsend? I was not one to get yearly mammagrams. I had one around age 50 and another probably 5-8 years later. The first one showed microcalcifications in the right breast. They did a needle biopsy and told me all was well. The second mammagram was 'normal' and yes, they were aware of the microcalcifications.
When my left nipple started spewing a bloody discharge I had my third ever mammagram which was 'normal' and an ultrasound that showed "a cyst - they don't do anything about it." Thank God my breast surgeon wasn't buying it and insisted on a MRI - that showed a problem and a MRI-assisted MRI biopsy showed DCIS. I thought I was having a prophylactic mastectomy on the right (the one with the microcalcifications). It appears that there was early DCIS in that one too. That did not show up on anything available today!
Most insurance companies will kick about MRI as opposed to a mammagram. Of course, they cost more but not detecting cancer early enough costs a lot more - someone's life. I've read about women, right here on this web site, that could not get insurance to pay for a MRI.
This is very scary - what are we to do? I had a bilateral total mastectomy so I wouldn't have to ever worry about breast cancer again because I was told without breast tissue I could not get breast cancer and it sounds like I still have to worry. Do I?
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Interesting thread. My only problem with the word "bitching" is that, to me, it connotes a sort of non-productive noise--but that's just me. Hell, sometimes I wish I could be a giant BITCH sometimes to get things done.
Anyway, this is slightly off topic, but it's been mentioned here a couple of times and I'm curious: I remember the study that came out within the last couple of years that suggested chemo is not effective for ER+ cancers. Now, here's the deal: I'm ER+ and metastatic. I did hormonals for 2 1/2 years that mostly just kept me stable (two lesions did seem to resolve but numerous others just kind of held at the size they were when discovered). I was metastatic at dx, so no prior chemo for me. I'm doing chemo now. Within 3 weeks of starting chemo, much of the pain caused by my cancer left and within a couple of cycles I noticed a reduction in size of some tumor areas I have that could be palpated. If chemo is not effective for ER+ cancers, how is this possible? Or, do the studies just suggest no overall survival benefit? Since there is a belief that tumors may not be homogenous, is the benefit I appear to be getting from chemo just benefit to the ER- cells I may have floating around in there?
Maybe it's just a question of immediate versus long-term benefit. That would make sense in the metastatic setting.
Can anybody here explain it in "chemo for dummies" terms? I'm feeling really confused by this one!
((((HUGS)))
Diane -
kmccraw423: Well, perhaps YOU are still touting mammos like some Godsent. The fact is: those days are gone. More and more patients and brilliant breast doctors now have questions. That's what is apparent here.
Again and again, and again and again: it is not that they are "totally useless." The problem is that they are overrated, like many other treatments. As anomdenet put it:
Mammos as a SCREENING tool and mammos as a DIAGNOSTIC tool are two COMPLETELY different matters. Of course, mammo is perfectly relevant in most of the LATER cases.
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just to throw another thing out there: I had a large (5-6cm) lump that was VISIBLE through my clothing but neither it nor the multifocal DCIS and 2 other lumps showed up on Mammo. I was "too young" for routine mammos (supposed to start at 40 here)
I think that, as bc seems to be hitting younger and younger women in larger numbers, screening mammos exclusively as early detection tools are inadequate. Still, they are a quick and inexpensive method that allow for greater accessability for many.
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What I meant Yazmin was that the media hype is we should get an annual mammagram. I was using the generic 'we.' My whole point was that they are not effective!
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Just to weigh in.... mammograms are effective for some... granted not all. It definitely caught my BC at an early stage since I did not feel a lump EVER even after diagnosis. So is it going to hurt to have one? I don't know. What percentage of people had their BC caught by mammogram? I don't know but even it it was a few percent is that not better than zero?
And granted, finding cancer early doesn't guarantee a cure especially if the tumor is aggressive. But would it be better to go back to the olden days when people couldn't be treated at all because they didn't have the diagnostic tools to see what was wrong and they didn't have the current treatment options?
I work in the medical profession and there are problems with all diagnostic tools. A person may have unrelenting back pain and go in for an MRI that shows a disc problem. The neurosurgeon goes in to fix the disc and the pain continues. Why? Because the disc wasn't really the problem it was just a non-symptomatic anomoly that was found on a diagnostic image. But should we stop doing MRIs on people with unrelenting back pain?
My belief is that even 1 person in 100 benefits from an early diagnosis by a screening mammogram, there is really no harm in doing it until another cost-effective, low radiation screening test is developed.
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I guess my question is that if a breast MRI can pick up more lumps than a mammogram then why are they even using mammography now? Yes an MRI is more expensive but it would show much more information than a mammogram, and its painless (always a plus). Just thinking about my daughter having to get a mammogram someday make me want to cry, I hope they find a better form of scanning before its her turn. Also wouldn't it cut out the need for all of the different forms of test like ultrasound & etc.?
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kmccraw423: Please accept my apology for the misunderstanding. Thank you for taking the time to clarify.
And PT63, you wrote: But would it be better to go back to the olden days when people couldn't be treated at all because they didn't have the diagnostic tools to see what was wrong and they didn't have the current treatment options?
I don't know........
but looking at the Success Stories thread on our forum here: it looks like a very, very, very, very large number of women in the past decades have survived breast cancer without any treatment. http://community.breastcancer.org/forum/59/topic/57562
......And some independent researchers have been making the point that the death rate has not actually gone down. According to those researchers, what as changed is the way that statistics are presented. (see Darrel Huff's very famous "How to lie with Statistics": http://www.amazon.com/How-Lie-Statistics-Darrell-Huff/dp/0393310728)
I am not a professional statistician by any stretch of the imagination; however, according to many independent (key word) statisticians, statistics are only as good as the official line that one is trying to present.
This is very visible in politics, especially in some Third World countries (where the official "line" of the govement in place can be statistically manipulated at will "to put the best face forward," and in many cases to meet US/European Union/UN requirements for loans, for example).
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MRI on demand Yep, when I was DIAGNOSED with cancer I got an MRI quickly to see if it was anywhere else. But to get an MRI for SCREENING purposes is just not a viable option in most places in the world. I think all of us COMPLAINING about it isn't going to move a mountain. Like someone already mentioned, there is too much $$ invested in the equipment to just throw it away. And Barrie is a large city with a cancer centre, I would wait the exact same time in Toronto. Without already having a diagnois of cancer, no one is a priority. That's why we have to be SCREENED. Thus the other diagnostic tools.
Breast self-exams is the cheapest, quickest way to SCREEN. But the cancer still has to be FOUND. The second cheapest way that is easily accessible is mammo. If my daughter (25) found a lump I certainly wouldn't have her deny a mammo and wait until the medical system decides we need to use MRI or we get thermograms to SCREEN her. Unless there is a diagnosis of cancer the cost just isn't justified. I am a big believer in ultrasound as a screening tool. I had to use it for 2 years to screen as they had actually popped a cyst and I needed surgery years earlier. BUT, I told them about a sore area and they said they didn't u/s for pain and that was exactly where my tumour was and here I am.... By the way, the mammo DID NOT find my cancer, the ultra sound did. That is probably the exception, rather than the rule, but I'm still standing up for mammos.
So, the point is, WE don't run the system. It is a lot larger than we are and we can't ignore the only tools we have to use to catch the cancer. Perhaps if some political figures start to get breast cancer it may change. Why aren't you out there lobbbying Deirdre? The rest of us have to work for a living. But, hey, I'll sign a petition....
Yazmin, feel free to use my bitch word how ever you want! The title of your book will certainly get attention.
By the way, there is an entire thread called "I'm bitchy...I moan and groan.....anyway". These ladies understand.
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Badboob67(Diane) - my understanding over the poor efficacy of chemo when used with ER+ tumours is particularly in respect of it being used adjuvantly in early stage cancers. Because they cannot get a large scale study together (>1000 women) who are ER+ and who are prepared to have chemotherapy but NOT take hormone therapy it is impossible to precisely evaluate chemo's effectiveness when used adjuvantly. So when it is dished out as standard treatment for all and sundry there are many many women gaining no benefit whatsoever and who are risking serious health problems (e.g. heart damage with FEC).
They know (and have known for a very long time) that ER- tumours respond better to chemotherapy than ER+ tumours. They know this from women like yourself with mets or when chemo has been used pre-adjuvantly to shrink lumps prior to surgery. However I have also known of ER+ women who have had great success with chemo - particularly with the Taxanes.
On another topic I am surprised by how many people invest in the OncotypeDX test. The whole area of genomic assay is still very much in development and OncotypeDX in particular does not factor in the crucial advances made with aromatase inhibitors - it only runs comparisons with Tamoxifen. It has been rejected (in its current guise) by almost every country except the US and yet I see it mentioned over and over again on this boards. Someone somewhere is getting very rich.
Until they get proper lifetime stats in nobody really knows if the Oncotype test is an accurate tool as a prognostic indicator. The prospect of truly personalised treatment is a wonderful thing - but I don't think we are anywhere near it yet.
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There are a couple of problems with MRIs as screening tools.
First, there is a high degree of false positives. I have personally only known women to receive false positive results. Never has anyone I have known had an actual incidence of breast cancer diagnosed with an MRI. Now, this is anecdotal, but it is supported by the data, which is that there is a very high rate.
Positive results can't be ignored. So every high-cost MRI that shows a suspicious area, now requires biopsy (more expense) to resolve. It's not just about companies not wanting to spend the money. How much did you personally enjoy your biopsy? You always have to weigh the small chance that some difficult cancers will be caught, against the more likely (at this point) chances that people will have to be biopsied who don't have cancer.
Second, there is no long-term data showing that bombarding the body with powerful magnetic fields is safe, particularly when you are talking about using them as a screening tool for bc survivors. This should no more be ignored than the long-term safety of exposing breasts to x-rays for mammograms.
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Barbe1958: You are very condesending.. How do you know I am NOT lobbying and like the rest of the world WORKING! We can and have changed the system, it is comments like this that make people think that their input and action is worthless.. I'm not going to go into this any more with you here (no need to highjack the post) so if you have any more personal comments to make to me please do so in private e-mail.
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greenfrog, you wrote: However I have also known of ER+ women who have had great success with chemo - particularly with the Taxanes.
Are you talking about ER+ women with mets? If not, which way do they measure the success with ER+ tumors (the idea being that those tumors metastasize less often than others, even without treatment).
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LJ13, you wrote:
Second, there is no long-term data showing that bombarding the body with powerful magnetic fields is safe, particularly when you are talking about using them as a screening tool for bc survivors. This should no more be ignored than the long-term safety of exposing breasts to x-rays for mammograms.
.... Now, you are making sense (a whole lot of it, too). That's another very real issue to take into consideration with MRI. There does not seem to be any magic bullet anywhere....
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Ladies with ER+ mets a chemo response...the key to chemo it does sometime bring you to NED's but the key is staying there. Chemo does not cure breast cancer....They may knock it down with chemo but your hormone inhibitors is what keeping it at bay. If you progress on these inhibitors you will progress on chemo. The key with ER+ can be a long term manageable disease.
Bottom line still is...Chemo does not cure cancer. Only ladies who are managing long term disease are ER+ and Her2 who are still responding to Hercepton. When you move to chemo's only you will have progression any where from two month to six months and have to move to another chemo until you become resistant again.
Flalady
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WEll LB13 I'll say it again I was dx with ONLY MRI - I had, within one weeks time, a mammo, a digital mammo a sonagram all negative until the MRI was done. That is why I have been reviewing the data on mammo's etc.. I was concerned AFTER I was dx with ONLY the MRI everything else was clean!
There are a great deal of women on the DCIS board that have been dx with an MRI. The stats are in question all the time and the only reason that the floating stuff is important is that there aren't as many MRI radiologist and techs on MRI's and so they are not fully trained YET..
MRI have been around for a very long time and although there aren't many stats on breast MRI's there are hundreds on MRI's in general without negative results.. That being said I would say that it is a concern - there should be studies and there will be studies as time goes on, but right now the medical field doesn't find a problem with general MRI's. I will conceed your point when a problem is found. It is however a valuable point and a question we should have about any of our testing.. Does it do harm..
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