Alternatives to Mammography
Comments
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Hi, aprilgirl1:
Did you say: "I also agree with you that it is sad that we simply don't know enough despite all the pinking - the dreaded pinking! "
Indeed, the pinkwashing is turning into a shameless circus, where friends are buying friends'esteem via pinking.
Sadly, no relationship whatsoever to the elusive cure.
But I am now fighting back whenever I receive the dreaded pink email:
I send back anti-pinking links, with this note from me at the bottom,
which I hope is perceived as nice, and helps me keep their friendship, without participating in the circus-pinkwashing:
".......I will make a $100 donation directed to any breast cancer survivor, or GRASSROOT, LOCAL charity of your choice."
See recent address from Fran Visco, President, National Breast Cancer Coalition Fund (NBCCF):
Message From
Fran ViscoMore Money Isn't Always the Answer
http://www.stopbreastcancer.org/
-------------------------------------------------------------------------------------------------------
Email message from Barbara Brenner, President, Breast Cancer Action (BCA), entitled: "What is pink, silly, and seen all over."
"........Some pink products are so ridiculous, it's hard to tell if they're real! Take a look at the images at right and then click here to tell us which one of them you think is the real deal." (clever and interesting little game from Breast Cancer Action)
On the bcaction website: http://thinkbeforeyoupink.org/
Barbara Brenner
......Indeed, there is even a PINK HANDGUN, THIS IS NOT a joke
October is over, but the feeling of too much pink is sure lingering.
If you're feeling exploited, irritated, and even a little angryabout the shameless "pink" marketing that happens during
Breast Cancer Awareness Month, join the club!
You've probably noticed some things
in the last month that made you wonder, "Are they really selling that to raise money for breast cancer?" Well, so have we.
Some pink products are so ridiculous,
it's hard to tell if they're real! Take a look at the images at right
and then click here to tell us which one of them you think is the real deal
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And thanks go to Vivre, for starting this very interesting, thought-provoking thread.
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Yasmin - thanks! Yes, I dread the pinking - can barely go to the local Safeway in October - surreally when I was going thru diagnosed last year.
I do appreciate the posts today discussing the variety of screening test. My whole reason for hopping on here is to hopefully commiserate that NO SCREENING prior to 50 is not the answer.
Back to pinking - I have received such strange "PINK" gifts - soap shaped like the pink ribbon (Pink soap of course), Pink gardening tools, and have seen dog food for the cure.....sigh.....also, isn't it strange that so much of the PINK food has high fructose corn syrup, and chemicals....my daughter always wants the PINK yoplait - vs. the healthy yogurt we buy - just because of the pink.
Back to subject - I hope that thermography, or other diagnostic tests will be approved along with mammograms - prior to age 50.
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Can anyone comment on the relatively new Breast Gamma Camera (also known as Breast Specific Gamma Imaging or BSGI) ??
I personally was totally betrayed by mammograms and ultrasound. Had a huge 5+cm tumor by the time we could feel it, this after years of religious mammograms, while that thing was growing away (makes me what to throw up!) I had very very dense breast tissue.
With dense tissue, you are already 5x more likely to get breast cancer, AND diagnostic imaging like mammograms and ultrasounds don't work weill on dense breast tissue.
Most women under 50, (per menopausal) have dense breast tissue.
I know Breast MRI is impervious to dense tissue (my tumor lit up like a light bulb) but it is very expensive, so won't be used as a screening technique, I understand.
How about this BSGI? Does anybody have the skinny on this?
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Spring, I thought someone on the motivation thread was a mammo tech. (PS from Canada, maybe?) Anyway, maybe she would know something, unless this is only available in the US. I never heard of it, but if it still involves radiation, I will not try it.
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Here is more on the BSGI. Looks like you get an IV of a radioactive tracing agent. Hmmm.
http://www.medicalnewstoday.com/articles/89265.php
About BSGI with the Dilon 6800 Gamma Camera
Breast-Specific Gamma Imaging (BSGI) performed with the Dilon 6800, is a molecular breast imaging technique that can see lesions independent of tissue density and discover very early stage cancers. BSGI serves as a complementary diagnostic adjunct procedure to mammography and ultrasound for difficult-to- diagnose patients. With BSGI, the patient receives a radioactive tracing agent that is absorbed by all the cells in the body. Cancerous cells in the breast, due to their increased rate of metabolic activity, absorb a greater amount of the tracing agent than normal, healthy cells and generally appear as "hot spots" on the BSGI image.
http://medimaging.net/?option=com_article&Itemid=294726378&cat=Nuclear Medicine
Breast-specific gamma imaging (BSGI) is a molecular breast imaging technique with comparable sensitivity to breast magnetic resonance imaging (MRI) for detecting breast carcinoma when used in presurgical planning for patients with known cancer diagnoses, and is considerably less expensive than MRI, according to recent findings.
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I'm not sure I like the idea of injecting all these dyes into our bodies either. It took for ever for me to get all the radioactive junk out of my breasts after my surgeries. I thought it was bruises, but I later found out my blue breast was the dye. Yuck!
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Hi Vivre and Spring,
Your friendly breast squisher here!
In Oct I went to a Mammography conference in which a highly respected U/S radiologist did most of the seminars, so the info I am going to give you comes from him. His name is Dr Sickles and sorry I can't remember exactly where he is from but I believe it was somewhere in California.
Anyway this is what we were told, please keep in mind I am not trying to sway your opinion on any of these modalities just tell you what we were told.
Gamma- Breast Specific Gamma camera- is 10-20% higher accuracy than plain gamma (uses a camera very similar to mammo machine)
-clinical effectiveness questioned at this time as they feel it is not anymore accurate than mammo and ultrasound together-keep in mind this is very early stages of use so not all info may be in yet
-hi radiation effective dosse it is the equivalent of 35 mammos- I recently posted I thought it was 10 but looked it up in my notes and yes 35!
-more expensive than mammo and ultrasound but cheaper than MRI
-fairly accurate for ILC (which is a bonus over mammo)
_-improved detection for lesion size, more accurate than ultrasound for tumor size
-gamma has not been tested in tumor size accuracy vs MRI tumor size accuracy
-does not catch calcifications
So that is the info we were given, you can take it for what it is worth. I think this technology will have its place but as for a screening tool, for me the radiation dose is way too high. It is not available everywhere either. If you are thinking of trying this modality though, try to make sure it has the breast specific gamma camera.
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pk0199, you took good notes at that conference!
otter
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pk199, Thanks for all the good information. Indeed, this high radiation would be WAY too much for me....
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I agree, that is *not* the answer if you are radiating 35x mammo!!!
I don't have any (or much) breast tissue left myself, but I have two daughters, They are 17 and 20. I WANT THIS FIGURED OUT!!! We can put men on the moon, and more, and we can't do this? I don't buy it!!
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Spring- Yes we put MEN on the moon. They will go to ends of the earth for MEN. But since this is a WOMEN's issue, it is gets lower priority.
Good info pk. Thanks for the insider research.
I still maintain that thermography is not given enough credence because it does not generate much income. It is sad, because the whole mammo controversy could be avoided if women got therms. Since they could start at a very early age, without worry of radiation exposure, they really could save lives. Also tumors could easily be watched, so overtreatment would be lessened. What we need is more techs trained to read thermographs.
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What I would like to see Vivre would be a combined study- women having a mammo & ultrasound then having a thermogram and see. I often wonder if the medical community dismisses therms because the medical community doesn't control them. So it brings up a big question for me being in the field, is this modality dismissed because the medical community makes no money on it and they are unable to control it completely?
When I first came to this forum I was "western Medicine" all the way. I am now seeing a few things a bit different now and question some of the one sided thinking, not sure why docs won't embrace the natural things a bit more, after all should care given be in the best interests for the patient.
Anyway, the other thing we learned at that conference is about MRIs is the gadolinium that they inject for contrast can be very hard on ones kidney's. The other rad who spoke is another highly respected ultrasound rad, didn't really like him, but anyway, he stated if women used MRI's as a screening test yearly, he figured most of them would have renal ca in about 20 yrs. Now I am not sure how valid that comment is as this particular rad thought ultrasound was the be all and end all of diagnostic tests and nothing else compared. I haven't spoken to any of our rads about the comment so unsure how true it is.
So it seems we have to choose very carefully which modality we would like to use for screening and weigh the pros and cons of each according to their accuracy rates and potential risk factors.
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Vivre, honey, stir away! I learn a lot from you and others here who chose to question and look at the status quo, a status quo that, considering all the costs invested, should and could be working better. I refused my latest mammo and was practically ejected from my surgeon's office. They were furious. I understand why too. But I want to do SonoCine ultrasound or thermography first--if it doesn't reveal enough detail, then I may mammo. But my tumor was completely invisible on mammo and that doesn't encourage me to do more smash and burn....
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I have spoken with two researchers who suspect that frequent mammography contributes to breast cancer rates. You cannot irradiate sensitive breast tissue for years and years and then assume it will not damage enough DNA to contribute to the rates of breast cancer. This particularly applies to the subset of patients whose breast tissue is sensitive to radiation. They would absolutely be better served through thermography, ultrasound, SonoCine ultrasound and or breast MRI; but mammo is the standard, commonly used, and that is not going to change in the near future. This is to the detriment of those of us whose tumors are radiographically occult, fast growing, and sensitive to accumulation of radiation. The danger for these cases is relying on mammo alone.
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PK-I am so with you! Why don't they ever do a triple blind? Why don't they ever take an inexpensive alternative and put it up against the money making traditional way with experienced techs. The only comparison study, mammo vs therm was done 20 years ago when techs were hardly trained to read therms, but had lots of experience reading mammos. Current stats show they have the same diagostic success with good techs. I just do not understand why there is such an argument for mammos when therms are safer, cheaper and painless. PK, I am having my 4th therm, next month. Remind me and I will send you all my pics and you can see how they have changed. I love the fact that my doctor sends them to me so I have copies and can refer to them or share them if I want.
MsBliss-Do we have the same surgeon? Maybe you came in after me, after I had already pissed him off or vice versa? I spent several hundreds of dollars with him for my 1 year follow up only to have him spend the whole time arguing with me for a mammo. He had not even bothered to look at the 2 therms I had sent him. He did not even notice how healthy I looked. He barely did an exam. My doctor who did the therm, did a very throrough exam, so at least I was not worried. Needless to say, I skipped the 2 year follow up and will not be back. He was a great surgeon, but I would never recommend him because of the way he treated me. I am a person, not a protocol, and I have a right to choose how I get tested. All the mammos in my 50's never saw my tumor until it was big enough for me to feel it. In fact I think they contributed to my bc. My mother and grandmothers never got it, and they never got mammos. My former doctor also sent me for a couple of chest xrays for pain that I was having. After tons of money spent on different tests, I went to a chiro who dx's condritis, treated me, and the pain is gone. I kept telling my other doctor that I knew it was not my heart or lungs and I think it was inflammation, but she still ran the tests(scans, stres tests, breathing tests, xrays, you name it), sometimes twice just to make sure. I wonder what they are teaching these people in med school sometimes. I kept telling her I had felt a muscle snap while playing volleyball, but she kept looking elsewhere. I think that modern medicine was a major contributor to my bc.
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Here is an article from the NY Times regarding the new mammo guidelines and how their recommendation is nothing new!
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Vivre--those who don't understand that this is a forum for alternative views and science will not be helpful here. Ignore them. They are missing the point. I, for one, am VERY GRATEFUL to you for bringing up the subject of thermography. My tumor was invisible on mammo and I need to cross monitor and I intend to use thermography as part of that monitoring. THANK YOU VIVRE.
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Interesting study Lucy. I always heard that once cancer cells hit oxygen they thrive if they are missed. I wonder if this is what is happening? It is easy to watch the progress of a tumor with themography. Wouldn't it be great if these early tumors were blasted with natural treatments like hormone balance, iodine, IV's of vit C, supplements, etc before surgery is tried, especially in younger women. Since the therms show changes in the vascular system, it should be very evident in a couple of months whether natural treatments work. It would be safer than having mammos and biopsies possibly disperse cancer cells.
I seem to remember hearing Dr. Love say months ago that she was rethinking mammos because of the radiation. It seems awfully suspicious to me that both these stories (mammos and paps)came out this week, just as the health care issue comes up for vote in the senate. I have this feeling that the obama admin knows they are losing support for it, and the support of women in general. What better way to win women back than to threaten their health and then come back and proclaim something to the effect that with national health care we will not allow these new standards. It smells very fishy to me. I think they took an older story and ran with it now as a diversion. It is all propaganda and the stupid press is eating right into Rhambo's hand by running with this story. I bet he is laughing his head off while he continues to pull all the puppet strings. They wanted to draw attention away from obama's total failure in China. Typical Alinsky tactics, create a diversion and never let a good crisis go to waste.
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Yasmin - I don't know that it is correct to assume that all aggressive tumors result in recurrence and subsequently death. I had an aggressive tumor. It was ER-/PR- HER2+. It was a little over one centimeter in size. It was discovered before it had the opportunity to spread to any lymphnodes and metastasize. I had the tumor removed and after going through 3 surgeries - came back with clear margins. (The third surgery was cleaning up some DCIS that was not completely removed the 2nd time around.)
I believe that I will survive this. I did not do chemo or radiation for various reasons. But, I have cut my risks substantially by exercising (up to 50% reduction according to my onc and Dr. Servan Shreiber), by reducing fat intake (up to 40% risk reduction for ER- tumors), no more wine or alcohol (40+% reduction in risk) and several other factors that I have eliminated or reduced substantially since diagnosis. I am on a rigorous plan of IV vitamin C and supplementation as well. I truly feel that if what I am doing will not help me, nothing will.
I realize that my tumor was more aggressive than most but not unconcurable (is that a word?) I will fight with all I have got! Don't write us aggressive girls off! We have a chance too!
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Dear Deni:
I apologize for being unclear: I never meant to say that all aggressive tumors will necessarily recur, and this statement is actually completely wrong; actually, it is now well-known that Triple Negative tumors that go 5 years without a recurrence will never recur.
Similarly, I do not mean to say that seemingly non-aggressive tumors will never ever recur.
What I meant to say is: a tumor that is not aggressive is simply not aggressive and there is no need to bombard those with powerful treatments that might be dangerous.
Of course, there are plenty of aggressive tumors that never recur, especially with the right mix of conventional treatments, life-style changes, and correct supplementation. I do feel Dr. Servan-Schreiber is absolutely right, here.
I am sorry I gave the impression of saying anything else.
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Yes, I have also read that the risk of recurrence drops substantially after the first 2 years and then completely after 5 years. So, yes, the key is for it not to recur in the short term!
When exactly do we start to measure these important milestones? Is it from the time of diagnosis or from the time of the end of your treatment (in my case, my last surgery). I am guessing you start to count from the end of your treatment as this is supposedly when you are "clear". But, I don't know for sure! Any ideas?
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Yaz, where did you find out that Triple Neg tumors that don't recur within 5 years never recur? I am not sure that is widely known. If that is true, I know one lady that would love to know it...
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a tumor that is not aggressive is simply not aggressive and there is no need to bombard those with powerful treatments that might be dangerous.
See, this is what I'm thinking re: my DCIS. I know that the standard of care is lumpectomy + radiation.
Well, I'm just not convinced about the radiation. I know the statistics about the recurrence rate being higher without rads. But how many of those studies showed the difference in recurrence rates between women who ate organic whole foods, not chemical "food products," began almost-daily exercise, etc.?
If I could see a study that shows that women who make important anti-cancer lifestyle changes still have significantly higher recurrence rates than women who get rads, then I'm more likely to be convinced.
Until then, I think radiation to blast away an area where only mid-grade stage 0 DCIS had been removed with clear margins, is overkill.
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Yaz-re your statement, "triple negative tumours that don't recurr within 5 years will never recurr", is simply not true-more of an urban myth.I'll grant that it is ununusual-but not impossible. I'm a member of another forum, where there are 2 triple negative members who have recurred after 5 years-one after 8, the other I think, after 7.
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Here are a couple of articles (there are many out there!) that talk about the higher risk of TN recurring within the first 5 years (with the most risk subsiding after 3 years). After 5 years, the risk of recurrence drops significantly and is not as high as the risk for ER+ cancers. But, the risk doesn't completely disappear for any type.
http://clincancerres.aacrjournals.org/content/13/15/4429.full
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How's this for fate....have just looked at my other forum-to find another triple neg at 5+ years has just posted that she now has mets. It's impossible to say with any cancer that it won't recurr-and even more so with such an aggressive type as triple negative.
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Perhaps it is a relative thing. ER+ tumors often recur many many years out. My ONC has mentioned this to me. That it is not as likely to recurr right away, but much later.
I'll tell you, not that any of us get to pick this crap. But if I had to pick, I'd much rather think that "gee, i made it 5 years, I'll probalby be fine now!" than, "Crap, it's 15 years and it could still happen".
The best antidote is to focus on a healthy lifestyle and PREVENTION. The more I keep my head in the "what can I do now" to stack the odds in my favor, the better it is!!!
Oh well. It is what it is.
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