Mammograms may cause breast cancer
Comments
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Cebula, I added my opinion on the other links (I believe in DCIS) so instead of posting here I will just say.. I had a mammo, ultrasound, digital mammo and all were negative then a week later I had a breast MRI and there was the DCIS. Also, with me the ultrasound was done again after the finding of DCIS as the first bc surgeon was not convinced and he came up with nothing! So even though he knew exactly where to look with his equipment he still did not turn up the DCIS.
PSK07: There are years of info that shows mammo's are risk factors as well as lung x-ray, ct scans and all radiographic are dangerous to the development of cancer. One alone or even just mammo's over a lifetime is probably very low risk, but as was stated here and the other thread we are not just exposed to mammo's, we have background exposures etc.. etc.. so to put mammo's directly on top of that is a bigger risk. Just do a search on Mammography + risk.
I have never suggested that TODAY we not do mammo's but keep our eye's peeled and even ask for breast MRI's.
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Pennyk019 Yes everything we do DOES have consequences and radiography has been known for years to carry a risk.. why should we continue to use an outdated, dangerous piece of equipment WHEN others are available.. "First Do NO harm" doc's pledge, when we know better we do better and we are starting to know that MRI's are best if we can get the radiologists better educated on what they are looking at (to avoid unnecessary biopsy's) and then get more centers - all that will bring the price down and that is the main reason we are discourage from using them. COST!
IF we start asking for an MRI (those high risk and having already had some suspicious examine) only then will the approach change.. And it is certainly changing in the SW US it's just a matter of time - Women if you really want early dx of breast cancer ask for an MRI - insist on it if you can't get it gently.. Good luck to all!
Best
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Take a look of just one of the pings I got back from mammograms + risk
http://www.preventcancer.com/patients/mammography/ijhs_mammography.htm
This is just one representation of information about risk and it is taken from research all across the world. Just one at the very tops of the search.. and it references many studies...
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It was the ultra sounds that found my tumors the mamograms were clear. I now insist on ultra sounds instead. i have a 23yr old daughter who will start making the same request but at a younger age than me.
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Deirdre, sorry to be blunt, but in my opinion the article from preventcancer is garbage. A lot of the "facts" stated in the article are the findings from one study that were refuted in many other studies. And the authors have twisted other facts to the point where they no longer bear any resemblance to the truth. I understand that the primary author is a doctor who focuses on preventing environmental causes of cancer; he is respected in his field but he does have a pretty obvious bias.
Since I know most about DCIS, I've dug into a few of the points the author has made about DCIS. For example, he says "However, some 80 percent of all DCIS never become invasive even if left untreated (18)." Well, there may be one study somewhere that showed that but the fact is that nobody knows what percent of DCIS will become invasive and even the most conservative estimates are usually higher than 20%. Most estimates are in the range of 50% and personally I think the number is higher. The fact is that even when removed & treated, DCIS turns into IDC in 50% of cases where there is a recurrence. Add to this the fact that approx. 13% of cases of DCIS are not found until there is already an invasive component (cases such as mine, although technically we are Stage I, not Stage 0). So there is no way that the "80 percent" statement is true.
About DCIS he also says that "the breast cancer mortality from DCIS is the same- about 1 percent- both for women diagnosed and treated early and for those diagnosed later following the development of invasive cancer. (17)" Excuse me? The mortality rate for women diagnosed with invasive cancer that is believed to have developed from DCIS is only 1%? Since approx. 80% of IDC is believed to have started as DCIS, and since the mortality rate from IDC is higher than 1%, this "fact" simply can't be correct. Since this statistic confused me, I went back to look at the original article from which the information was taken; it seems the original author was referring to the 1% mortality rate of DCIS women who are treated for their DCIS but then have a recurrence in the form of IDC. He was not referring to what would happen if the DCIS has not been detected and the cancer had not been found until it was full blown IDC.
Something to keep in mind is that this article is from 2001 and the data that's quoted is from the 1980s and 1990s. New, more current information refutes a lot of what is said. It's also interesting that the focus of the author is on breast self exam as an alternate to mammography. Well, how about what these studies say?
To date, 2 largerandomized controlled trials, a quasi-randomized trial, a largecohort study and several case-control studies have failedto show a benefit for regular performance of BSE or BSE education,compared with no BSE. In contrast, there is good evidence ofharm from BSE instruction, including significant increases inthe number of physician visits for the evaluation of benignbreast lesions and significantly higher rates of benign biopsyresults. http://www.cmaj.ca/cgi/content/abstract/164/13/1837
It is a staple of women's health advice and visits to the OB/GYN: the monthly breast self-exam to check for lumps or other changes that might signal breast cancer. However, a review of recent studies says there is no evidence that self-exams actually reduce breast cancer deaths.....In the two large studies of 388,535 women in Russia and China included in the review, women who used self-breast exams had 3,406 biopsies, compared with 1,856 biopsies in the group that did not do the exams. At the same time, there was no significant difference in breast cancer deaths between the two groups. http://www.cancerfacts.com/Home_News.asp?NewsId=2337&CB=14&CancerTypeId=4
I notice that the author did not mention MRIs as an alternative to mammograms and that's because MRIs are a relatively new tool for breast cancer screening. There is much that we don't know yet about MRIs. To my earlier post, the comment I made about MRIs being quite rare until about 10 years ago was not a Canadian statement but a global statement, supported by the fact that this article doesn't even reference MRIs. Hopefully MRIs will be the answer and over the long term they will be proven to be safe. But we're not there yet.
I could pick a lot more holes into the article but I won't spend my time doing that. The fact is that if there is case that you want to make about something, there will always be information available to help you make that case. But there is good science and bad science, there is good research and bad research, and even good research can be misinterpreted and twisted to mean something that was never intended. All the reliable, unbiased sources that I've found suggest that the risk from mammograms is very small, and the benefit in terms of breast cancer detection and reduction of mortality is significant.
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I am neither for nor against. Actually I have to change that if there is not a way to get MRI (in my case...Military) Then I am all for what can help a woman/man detect something harmful in their bodies. My aunt for her 40th birthday got her first Mammo and it found that she had a large and unruly mass in her breast. It was cancer and it was Invasive. She had her breast removed and a couple different kinds of chemo. My mother was 41 and the mammo found calcification's that turned out after a lumpectomy to be cancer. She just had the area removed and more radiation. Neither my Aunt nor my Mother have been dx with it again (there have been scares) it has now been 10 years and they both do mammos at least once a year. I have already started mammos (age33) in fact I have had two this year. I have had 3 biopsies in three years. My breasts are very dense I am not sure that the mammos are seeing everything in them. However, since I have no way to get an MRI I am sticking with the status quo.
I am not willing to give up something that might help. If my mom and aunt had not had mammos my mom's would have been more advanced and I honestly believe that my aunt would not be here. There is no way with our family history that I would tell my daughter not to have mammos. (granted it will be many years from now she is 8) I feel her family and normal everyday risks far out way her risk from the mammo. If she were to start getting them today I would tell her to do what it takes. Heck people are even saying that the water bottles we use are causing cancer. There are so many ways we unknowingly hurt our bodies. I think a mammo is of greater use to our health than the risk. In no way did I say that it does no harm....I just think that the harm is less that what my body, health, and family are worth.
My 2 cents, Runalot
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mumayan,
While ultrasounds are a great tool for masses and lumps, they unfortunately do not see calcifications, nor does thermography. I caution you on the use of either of these modalities for your only method of screening, you also need a screening modality that will pick up calcifications, now you are looking at either mammography or MRI.
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Well here is my two cents - if cancer is caused by mammos or MRIs then I will be sure to get it. I have had 4 MRIs in the last year, a routine mammo in August and mammogramS the day of my surgery for wire localization. They had so much trouble finding the clip that was clear back by my chest wall, I was "shot" over 60 times, while being compressed, pulled, laid on, pushed, well you name it, for FOUR hours. I honestly feel like I have damaged tissue from this and having never been bothered by mammos in the past, I can honestly say I hope to never have another one. It will be 2 wks on Monday and I am still so sore from the compression and the manipulation to get the picture, not to mention the clip placement "hole", the wire insertion site and the actual surgical site, which are in 3 different places. None of this is any fun, or without some sort of risk. But what are we to do???
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Hilarious, Kimber!
Though I'm sure it wasn't funny while it was happening.
Mammograms are barbaric. If you think they're disagreeable with small breasts, consider what they must be like with large ones. You can't imagine what bizarre positions and shapes human flesh can be forced into until you've experienced a mammogram with big breasts and been subjected to additional "views," as I was when I was diagnosed.
Disagreeable as mommograms are, I'm sure they didn't cause my cancer, since i've had very few of them. The first one I can remember I had during menopause. Since I couldn't remember when I had had my last period, the person in charge insisted on my having a blood draw to rule out pregnancy. As a result of this I got phlebitis, and stayed away from mammograms for some time thereafter, finally doing two at the urging of my PCPs. The second was the one which led to my diangosis by ultrasound-guided biopsy..
Since then I have been extensively exposed to radiation--five more mammogram views, a bone scan which required me to be radioactive for 24 hours, several X-rays, a CT scan of my chest and abdomen, Though I don't necessarily trust doctors, I have every intention of following up my treatment with frequent mammograms, because unpleasant as mammograms are, they can't compete with the brutality of an under-anesthesized vacuum assisted biopsy and an axillary node dissection, not to mention the other pleasures of treatment that I'm still anticipating.The possible gain in avoidance of worse experiences more than outwieighs the small risk and comparatively mild discomfort of a mammogram..
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Hi Kimber! I know you had a terrible time during your biopsies. No one should have a painful proceedure.
Dr. Susan Love pointed out that breasts have been designed to be grabbed, chewed, stretched, etc. However, I'm sure no child would be able to contort the breast into the shapes done by mammography . I think it would be very hard to do a study on the safety of breast compression, since mammography is not the only way that breasts are contorted.
That doesn't make it any more comfortable though.
This recent article says that women who used lidocaine (a local anesthetic) gel on their breasts before a screening mammography had less pain than using other treatments. http://www.ncbi.nlm.nih.gov/pubmed/18647845 (Lidocaine jelly/ointment is a prescription item. Maybe I'm wrong, but I don't think there's a non-prescription form of lidocaine topical. There are other things that may be tried, maybe something like Orajel, which probably has benzocaine or something like that.)
They DEFINITELY need to work on the comfort of having a biopsy or needle insertion.
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Kimber, sorry to hear your biopsies were so awful, l was very fortunate that my biopsy and they took 13 samples then came back for 5 more, was very simple. The worst part-my neck was not in a comfortable position to start with and l didn't say anything. The pre set up was a bit uncomfortable too as they had to get way back on the chest wall and that took about 4 tries to get there. My needle localization, they had to take a second run at it. No freezing as the rad didn't believe in a needle poke then another poke with the loc needle, l agree, it was simple, just pressure. Now maybe l had an advantage because l personally knew both rads who did my procedures as well as the technologists. l had all the faith in the world in these people and knew when they had to do things a second time or pulled hard they were doing it for my benefit.
As for those who have a difficult time with mammography, there are four things you can do to make your procedure a little more comfortable. 1. take an analgesic before you go whether it be tylenol or ibuprofen, 2. stop caffiene 24-48 hours prior to exam,as it makes the breasts tender 3. try a topical cream, where l am from you can get Emla cream over the counter, 4. and this is huge believe it or not -relax, let the technologist do her thing, let her manipulate you, don't fight back as this makes it worse for both of you then the tech has to more forcefully push you around. Also with compression if you stiffen up, the tech has to compress tight muscle before she actually gets to the breast. Trust me here, l know what l am talking about.
Hopefully that will help some of you.
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To all,
Lots of interesting things discussed in this thread. No, I don't believe that mammos caused my BC. I also don't think that not having children (a high reason) caused it either. You get it or you don't. A number of years ago..probably 10, I worked for a company that developed x-ray film for mammos that used a minimum of radiation to take pictures. I believe it is still used. The point being... the breasts are not compressed just "for fun", ....with the compression the radiology people can use a lot less radiation to see what is "in there", Yep it's not too fun (and I'm small) but I have found it doable. I continue to get mammos yearly even though my BC was NOT picked up on mammo. I had only nipple discharge, no lump at all. My ob/gyn sent me for another mammo and the report said "normal", however my BS said... DCIS. She then sent me for MRI since I had symptons on the "good" side. I am comfortable getting mammos, and my doc said she would also give me a prescription for MRI.. I turned it down as I had concerns over false positives and was just not up to another biopsy. I may opt for that next time. But either way, the exposure you get from the mammo is fairly low..yes there is a risk, but there is a risk in everything we do. I also spent several years working in the radiology department where we had to wear "badges" showing our exposure to radiation. My boss who had been there a long time, showed an "over-exposure" after 20 years. (we had to send our badges to an outside company who checked them) Me....after 3 years showed no exposure). However, the time the company called my boss, he had to admit he had left his badge on for his own chest exray. My point being, it takes a very long time to get a lot of exposure. However, when you do get it, it is probably needed to diagnose a problem. Your choice, though. Me, I'll still continue to get them on my good side. Phyllis
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Beesie, Sorry I didn't get back to you on this sooner but I don't want there to be any confussion..
If you just take a look at my post you will see I was suggesting that that was only one "ping" on the internet that occurred with typing in "mammography + risk".. it was not presented as an absolute anything.. that being said I don't need to support the suggestion that "radiation and mammography" carry risk. Every medical review on this subject that I have read suggests that mamo's carry risk. If you believe the risk to be acceptable to you well fine - take that risk.. but it is indeed a risk. And I was addressing the question here, not the question in a scientific arena.
I do understand that you have a strong background in research, but the reason for confussion in DCIS treatment is because the research is all over the place (not per me but per the experts).. So I respect your interpretation of the data and I hope you will respect my concerns about those interpretations.
Best
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Natural news is mentioned here in a post by one of the science bloggers that I respect most:
http://scienceblogs.com/insolence/2008/12/the_spontaneous_regression_of_breast_can.php
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I enjoyed reading the disclaimer that is on the science blog linked in the above post:
"This is a personal web log, reflecting the sometimes prickly opinions of its author. Statements on this blog do not represent the opinions of anyone other than the author. They most definitely do not represent the opinions or position of the author's hospital, university, cancer institute, surgical practice, partners, or research colleagues. The information on this blog is intended for discussion and entertainment purposes only and not as recommendations about how to diagnose or treat illnesses. Any personal medical issues the reader may have should be referred to the reader's physician. If the reader freely chooses to follow the opinion of a pseudonymous blogger like the author (who has also not done a proper history or physical examination and whose credentials cannot be verified) over that of his or her own personal physician, it is the reader's decision alone, for which the reader must bear full responsibility."
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<chuckling> Not a bad disclaimer to be placed at the end of ALL our posts here too!
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I know that my BC was not caused by mammograms, as I was one of those people that never made time for them. I only had one when I was about 35 or so, and then put it off until a good friend bugged me so much I finally made the time and had one at age 50. Well, it found IDC and now I've had a lumpectomy and am going through chemo. If only I had had one earlier, I might have found the lump before it was 2.3 cm. and I wouldn't be going through chemo!
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I also don't think my breast cancer was caused by mammograms - but then I only had 2 or 3 before the one that got me diagnosed. I will continue to get them faithfully every year because, at least for me, the benefit far outweighs the very small risk that I might someday develop a breast cancer due the mammograms. The risk of radiation induced breast cancer from yearly mammograms is long term and that risk, however minimal, is cumulative. So it takes 15, 20 years and usually longer for someone to develop a breast cancer induced by the radiation from yearly mammograms - if ever.
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Deirdre, I'm sorry, I hope I didn't suggest at any point in any of my posts that I don't agree that there may be some risk associated with having a mammogram. I think I've said the opposite. It's radiation, so yup, there probably is some risk. But my belief from everything I've read is that the risk is very small and personally I feel that the benefit from mammograms outweighs the risks. But I wouldn't say that this is absolutely no risk.
My most recent response was simply addressing the points in the article for which you provided the link. In the few areas where I know the facts, the facts in the article clearly seemed to be wrong. That led me to believe that in all likelihood, the facts throughout the article were probably wrong. But I understand that this is one of many articles one can find on the internet and I wasn't suggesting that because I disagree with that article, I disagree will all of them and they are all wrong.
I have to admit I'm a little confused about your comment that you were "addressing the question here, not the question in a scientific arena". Isn't the whole question about mammogram risk one of science? Opinions are fine, but ultimately if anyone is going to say on a public discussion forum that mammograms are risky and perhaps should be avoided, I would hope that there is science behind it. As for the facts about DCIS being confusing, I couldn't agree more! There is a lot of different information about DCIS out there; my point was only that the author of that article was way out in left field to the point that few in medical science would agree with what he said.
In any case, I agree with you that we all have a right to interpret information as we see fit. And I firmly believe that we all must decide what's right for ourselves. I think this whole thread has been very interesting and I've learned a lot from it. My only concern is a fear that some of this discussion might lead someone to not have their mammogram, and that could lead to a missed diagnosed which in the end could lead to a more serious case of cancer. I enjoy many of the back and forth discussions that we have on this board, but I always keep in mind that there are many more viewers than commenters, and I'm always conscious of how we might be influencing some of these viewers.
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Oh.. just lost about 20 minutes of type.. I'll try to answer this in the morning Beesie, but please know that I respect and admire all of your input here and in the other threads.. Best
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Ok, I know this is ingorant, but I have a question that bugs me -- since radiation is known to cause cancer, why do they treat cancer with radiation? Somehow it seems odd...
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Jillisucat-
They don't know how else to treat it except to cut, burn and poison. I guess it is kind of like the sun. Your body needs the rays for Vit D but too much sunshine can cause cancer.
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For some breast cancers,we can do some other things besides cut, burn, and poison. For example, herceptin targets a gene that is multiplied too many times in some breast cancers. Tamoxifen, and other anti-hormonals, aren't 'poison', though I guess some people would regard any medication as poison.
But in breast cancer, they do try to minimize the exposure to the affected area, and they use specific energies of radiation.
With radiation, there is usually not an all-or-nothing effect curve. The dose and frequency are important. Age is important. (You want to avoid chest radiation to the breast buds at least in older children.) So there usually is some % of cells that might be killed, and some % of cells that might be mutated, and some % of cells that may not be immediately affected. Again, it is risk vs benefit. There are different energies of radiation that kill cells, and other energies of radiation that may not kill the cells but be more likely to mutate cells, and some energies that will probably do nothing. For example, they use ultrasound imaging (sound waves) even on unborn babies.
Ionizing radiation (which is of high enough energy to tear parts of molecules apart) tends to affect the fast growing cells more than the slower growing cells. That's because the most lethal way of killing cells is to affect their DNA and RNA, and these are in their greatest use when cells replicate and grow. Chemotherapy and radiation tend to hit the fast growing cells, so if your hair or gut is exposed to the treatment, they are more likely to die than other parts of your body. So they tend to be more effective in fast growing tissues/cancers than in slow growing tissues.
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Beesie, regarding your confusion about the "science" comment I made. It wasn't meant to imply that mammography was not a part of science, or that the risk of mammography had not been proven in science (or the benefits for that matter) only that Breastcancer.org's discussion board is made up of many people and it is designed to accommodate everyone's experience's.. I was suggesting that we shouldn't have to "cite" every comment on medicine or science that we make because this could lead to a situation where there would be very little room for people's experiences and voices. Science/medicine does not have an optimum way to address DCIS (yet) or most cancers for that matter and leaves many of us looking for hope and cure through other avenues, avenues that are actually accepted by the creators of Breastcancer.org such as alternative medicines. Some of the alternatives that are chosen by individuals here may not even meet scientific scrutiny today, but the hope is that in the future it will. I see a tendency here when someone suggests a different way to approach their breast cancer (outside of the today "standard of care") their suggestions are immediately discredited by and interpretation of some scientific research. That doesn't mean their approach is not a valid way to approach that individuals experience - only that it does not follow some protocol that may or may not be correct.
I know you have a concern not to mislead people, but so do I - that being said, I firmly believe (and this is starting to be credited by science) that an MRI can and ultimately will replace mammograms. And that belief (that I carried) about MRI's was started long before I ever had bc, so you see that is an example of something an individual held as true before science had proven it out and so it was valid to speak about in an open forum, but would immediately be tossed out of a scientific forum. Someone's suggestions (or experiences) here, might not fit the "standard of care" TODAY - you may see that same suggestion proven in science tomorrow.. So I don't want to discredit anyone's experiences and that allows for other's to see that there may be a different way to approach not just this situation but every situation. The more open we are the more possibilities we have.. and breast cancer needs a cure . We need everyone's experiences to lead us to that cure AS WELL as good scientific research.
If we just wanted the "standard of care" information and not a personal relationship about our experiences that is available through the data presented in other pieces of this site. So I am suggesting to open to all things until they prove to be dangerous or unnecessary, all things means science AND alternative methods.
And I have never suggested that testing be ignored or not done - only that instead of mammograms perhaps MRI's are a safer and an easier way to go.. I am also aware of the expense factors with MRI and how I see that expense decreasing with the increased use of MRI's.. I'm not sure this is clear but I hope you will ask me another question if it isn't.
Best -
"Breastcancer.org's discussion board is made up of many people and it is designed to accommodate everyone's experience's. I was suggesting that we shouldn't have to "cite" every comment on medicine or science that we make because this could lead to a situation where there would be very little room for people's experiences and voices."
I agree. The value of sharing our experiences is critical. By sharing our experience, we help others make it through the diagnostic process and breast cancer treatment. By sharing information about how we made our own treatment decisions, we help other women realize what's important or not important to them as they make their own treatment decisions. But where I think we have to be extremely cautious, where we start to cross the line, is when we stray into the area of medicine and start offering opinions and recommendations. I know there's a lot that's uncertain about the diagnosis and treatment of breast cancer but there are accepted treatment guidelines and standards. These may change in the future as new medical data becomes available but they are the best that medical science has today. I worry when I see women here recommending treatment that contradicts current medical practices. We're not doctors or medical researchers; who are we to advise someone to do something that is contrary to medical standards? I worry when I see treatment recommendations based on personal preferences. Why would anyone think that what was right for them is right for everyone (or even anyone) else? If someone has a choice of treatments, it's one thing to explain why you made the choice you did; it's something else all together to say "I did xyz and I can't imagine why anyone would do abcd." The first is sharing your experience; the second is offering a medical advice.
What it comes down to for me is that because this is a peer-to-peer discussion board, I think sharing our experiences can be very helpful but I don't think we should be offering medical advice. Whenever I see a post where someone is asking for medical advice, my approach is to provide a framework for making the decision (here are some of the things you would want to consider...), then I provide whatever medical data I can (scientific data, research studies, etc.) and then I direct the woman, facts in hand (and often a list of questions too), to her doctor.
As for questioning conventional medical wisdom, I think that's an interesting & educational thing to do. But personally I don't think these types of discussions have a place in forums where those who are going through the diagnostic process or those who are newly diagnosed are hanging out. In these forums, the risk of scaring someone or the risk of unintentionally influencing someone is too great.
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I went for my second thermogram today with a couple of friends. All I can say is that it was a very pleasant experience. We all were clear and there was no pain, no radiation exposure and no smashing. The doctor also did a much more thorough breast exam than my PS has ever done. He was immediately able to explain to us what he was looking for. He also showed us what a diseased breast would look like. He has been doing this for over 10 years so we felt very confident with his analysis. The only thing that bothered me is that a year later, my breast is still showing that it has not healed from radiation. It still shows hot spots. I have read many studies and they show that therms and mammos have the same rate of detection. They both are only as good as the doctor or tech reading them.
Beesie, I have the utmost respect for you and I always appreciate your research and opinions, but I think it is important that we all feel comfortable relating our experiences and opinions on any issue. I think that is what these boards are for. When I was first dx, I came here looking for people whose experiences were like mine, and who wanted to go a more natural route. I learned a lot from others, and this has given me the confidence that I have taken the path that is right for me. I would never try to convince anyone that they should follow the same path I have chosen, but I think it is important that people know there are alternatives for those who are afraid of some aspects of conventional medicine. That is why this thread exists. My doctor and I actually talked about this study (that mammos cause bc)today and he pointed out the many flaws. The truth is, most studies are funded by companies that have a vested interest in the outcome. Thermography is cheap. Hospitals have invested lots of money in mammography machinery and they make a lot of profit on them. They have no incentive to change. I just wish that those of us who choose alternatives would be more respected for our choices, just as I try to respect others who choose more traditional methods. No one has all the answers. We all need to be able to make these personal choices without being put down by those who disagree. I have learned so much from the other women here, and I hope that my experiences have helped others too. We are all in this together, even though all our situations and opinions may differ.
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Vivre, I need to do some research on thermogram's too - I only heard about them after my dx! You make a great point about the doc's and tech's being good at reading scans and x-rays.. By now you would thing they could be experts at reading them, since they (radiography + radiographic tests) have been with us for a long time! And yes most research today is funded by someone who has vested interest as apposed to true pure science (available in only very small doses now) .. So it certainly leave us vulnerable.. and our vulnerability is what makes us look for other answer IMO.
Beesie, I do understand that when patients are most vulnerable about your dx they can be influenced by what people here say and I try to be very careful with my responses - But that is the point of this portion of the site IMO. And I know you are very scientific oriented.. but if you think about the entire site (breastcancer.org) it does have places for the most recent science models, "standard of care" models and absolute complete explanation of "what will happen next" and "how to read the biopsy report" all incredibly important in making any decision, but the people come to this portion for reassurance that they will be OK but also if there are other models that perhaps the medical community might not bring up they want to hear them.. and let's not forget that there are complementary practioner's right on the board here so all is considered acceptable if it is that individual decision after looking at ALL the models..
Alternative medicine can be held up to a higher standard too and often it has been put through the same rigors as conventional medicine and yet the outcomes are not used within the models of "standard of care". I receive, for example, a newletter by doc's who recieve no compensation for their work either by the drug companies, supplement manuf. or other source of potential cures and I use that CAREFULLY when trying to balance this process (they often refer to research, data and models used in other countries that supports their position too).. But using all the information carefully is the way I reach a balance.
I completely appreciate your voice here as a reminder and a pointer back to those conventional medical models for someone who might have walked in without any info at all. Your posts are always clean and right on point (and kind I might add).. so it's always good to hear your voice!
Best
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vivre,
I was struggling with how to say what I was thinking and I think perhaps I wasn't clear in my earlier post.
I agree with you completely that everyone should feel comfortable in relating their experiences and opinions. You say "I would never try to convince anyone that they should follow the same path I have chosen, but I think it is important that people know there are alternatives for those who are afraid of some aspects of conventional medicine." and I couldn't agree more. For me, that comes under the heading of "sharing information about how we made our own treatment decisions" and this is something that I agree is extremely valuable. I also believe that "questioning conventional medical wisdom" is good and I applaud BC.org for including the "Alternate, Complementary and Holistic Treatment" and "Research, News and Study Results" forums on this board.
The point I was trying to make is that both parts of your sentence are equally important: "I would never try to convince anyone that they should follow the same path I have chosen" and "I think it is important that people know there are alternatives". My issue is that so often I see posts where someone is trying to convince others to follow the same path or where one option is presented as the only viable or sensible choice and all other options are denigrated.
Anyone who has read my posts over time should realize that to me what's most important is that every woman understand all the options available to her so that she can make the decision that is right for her, whatever that might be (conventional or non-conventional), without being pressured or influenced or made to feel bad about her choices. My concern is with posts that try to influence or scare women into a particular choice or suggest that one option is 'better' than another or that say "I can't see why anyone would choose abcd". I guess what it comes down to is that after almost 3 years on this board, I am overly-sensitized to this issue (and in truth, quite frustrated) because I've seen too many situations where someone is leaning towards one treatment option and others try to convince her to move to another option simply because it was their choice. And I've seen so many women come here who were happy with their decisions but who then start to worry or question themselves because of what someone said. Explaining what went into our own treatment decisions is helpful; pressure tactics and scare mongering is not.
But, as I said, this is Just My Opinion and I'm just one of the 42,000 equal members on this board so I know what my opinion counts for!
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I want to alter what I said about science a bit.. I do believe that there are scientists who want to do good science, true science.. but I believe they cannot find the funding to back them without the strings attached. Dr. Slamon was an example of an individual scientist/doctor who was frustrated with the drug company that allowed him to start the herceptin tests only to want to pull the plug when it was convenient for them - it wasn't cost effect and he/Dr. Slamon had to find his own financial backing for the research... when did this go so terribly wrong? Look how many lives that has saved!!!
Beesie, I don't see a great deal of what you call pressure tactics and scare mongering except in the medical community where I received my dx.. so I agree with you and certainly do not have any intention of pressuring anyone! I am just trying to put options out there that might not have been considered and these are based on my experiences as well as my fathers in this difficult path of breast cancer!
And I think you under estimate you opinion within this body of 42,000 - I think many, many of use value your opinion very much! You voice is of great value here!
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I just ran across the patient/public info website of the American College of Radiology and the Radiological Society of North America and thought of this thread. I see that the discussion has moved along to a more "meta" stage (discussing how we discuss...), but thought I'd post a link to the "Safety" page from that web site:
http://www.radiologyinfo.org/en/safety/index.cfm?pg=sfty_xray#5
Lots of interesting info about our exposure to ionizing radiation, but as you scross down, they compare the exposure from various x-ray procedures to the "natural-occuring background radiation exposure" we all experience. Apparently a mammogram's exposure is equal to what you would otherwise experience in three months.
HTH,
LisaAlissa
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