Survivors who have used only alternative treatments
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Sheila - I am familiar with Ian Gawler - my husband has one of his books. I now understand that he is providing them with comfort not promising a cure.
Sue
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Sue, the "comfort" is the cure for some. The visualisations and other methods actually cause the cancers to regress. For some it has worked twice and there's no other logical explanation for that.
I just looked at the advertising blurb for the book, "Surviving Cancer" edited by Paul Kraus. Apparently there are 28 stories in the book but I am wary of any so-called cures from cancers that are not stage IV or deadly cancers and there is just one case that doesn't specifically say that stage IV had been diagnosed. These people reveal their full names and locations but may not want their medical details published for all to read. Several are clearly not very literate but that doesn't take away from their experience. I should add that the "hope" component has to be the type where you believe, no, you know that you can be healed. That's one thing that can't be measured. In the second link I see it's available at Amazon, there's even a Kindle version.
http://www.gawler.org/surviving-cancer/
And here's the full follow up medical report after Dr Gawler had his lung removed, containing his original medical details, X-rays, photo etc from 30 years earlier, written by his surgeon.
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So many posts excuse me if I miss some
So first yes due to being misdiagnosed with clogged ducts they perscribed me BC pills. A second lump grew and during the core biopsy I learned the first lump, after telling the dr it was a clogged duct, never was a clogged duct. This one was in-situ. No doctor would perscribe BC pills to a woman with BC due to the ER+ issues. That is why I was shocked someone responded that my bc must not be that big of a deal as they gave me bc pill and that no one commented on this post.On the meat issue if we fear estrogen so much that we actually take out ovaries in some cases why would you want to put any stubstance in our bodies to replace any amount of estrogen. We block it with drugs as they feel in necessary to have NO estrogen in the body. Just doesn't make sense to me. It is like saying stop smoking cigs but not also mention you might not want to sit around in a room full of smokers when you have lung cancer.
One things comes to mind without pulling out data on lung cancer so bare with me I will assume the data is correct and that there is a drop for the 1990's. Isn't that about the time americans started pulling away from smoking and banning it in public places. It was no longer cool and many seemed to stop. Now we still have smokers but the attitude about smoking has definitly shifted so I can' t help but wonder the impact of this alone has played a role in this decrease.
On the studies it just blows me away. At my doctor today I was told "it is illegal to treat cancer with anything other than the standard of care". So how do you suppose you do this study as you will be arrested. Now a patient can refuse treatment and ask for help. Secondly have you ever looked into the money it requires to do a clinical study. Many of these doctors make far less although it seems costly to us as we pay out of pocket but in the grand scheme they do make less. Some MD have switch over solely out of their desire to help patients. Then take a look at who is funding such studies. Here is an great example. I am in CA and we have a well know lab in Berkeley. Some may have heard of Lawernce Livermore Lab it's affiliate. They have section designated to BC. They are funded by the Department of Energy so no need to pick them apart totally govermental site. Read this article it will point out the flaws they are seeing. They also have great ones on errors with mammograms on the site. They point this out as they are trying to improve our current state. Notice at the end WHO is granting their funding. How does this impact what they are testing? Notice how financial benefits are taken into account on what they study. WWW.lbl.gov/Science-Articles/Archive/sabl/2007/Apr/bc.html
Are we shocked that they are testing Latibnib?? No must be a coincidence they are studing the drug whose maker is sponsoring their study. However I love this article as they are aware that not all treatments are right for each person and we need to indvidualize theapy more!!
Someone suggests that the changes represent progress which in some cases I would definitely agree but if you think a little deeper you will see what this also suggests. It will also lead one to believe that the current trend is never an absloute truth because if it were there would not be a need for change. So it would be silly for me say this will work when there is a very real possibility in a few years it won't be recommended anymore. It might say use what we have now but open your eyes to other possiblities as it isn't an absolute truth. Anotherwards we need to keep our eyes/minds open to the other possiblilities in life not just shut them out. It may be the best they offer now but that doesn't mean to stop looking for better. We should be learning from on another if we really want to learn about this. When there is a back and forth it implies right and wrong. I have more respect for someones opinion who has studied all sides from an open mind myself.
I am sorry but I do think we can do more. For each post here a letter could be written to ask say for studies in chemosenitivity testing. We can get thousands of women walking for 3 days at a whopping cost per person but we can't start say a petition for research in a few of the alternaive things. I just think that before snubbing a nose at chemo testing we should be asking more about it and asking why they can't test it. You still get chemo but it is tailored to the individual's tumor to make sure their tumor will respond. Why on earth couldn't IV vitamin C be tested at least to a person in therapy for it's benefits on repairing the patients body and stopping some of their pain. Let do a fundraiser for that but not pink..lol. But if your first response is to just discredit it due to stats rather than at least listen about it. I listen to all the standard data and post much of it. If you get stuck in one train of thought you will not grow weather that be to strengthen your own belief or possibly by educating your self you may find a new belif to add to you current ones. We should be demanding that standard care require reparing and reducing the the side effects of chemo and treating the patient like their pain matters! There should be a handbook on how to care for each side effect as we see all the women here with ideas who have helped others.
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Several in the book also admitted to using things like mistletoe, B17 and herbal mixtures. It's the substances (eg. B17) that are outlawed, not the practices (eg. meditation). These people were very proactive in their approach and that's another common factor in those who have had 'spontaneous remissions'. They didn't just throw the book at it, they then threw away the book and went beyond the recommendations. They were willing to try unproven methods because the alternative was death. They knew others had succeeded where there was no hope and then defied the odds themselves.
I'd like to reiterate what Nanay said, that we need to speak up, people are reluctant to admit they use herbs, acupuncture, Qigong, B17, spiritual healers, Gerson etc as there is so much disbelief and ridicule in society. I don't use any more than simple supplements and diet, but if faced with stage IV, would go all out with whatever I could afford and manage. I believe in using conventional to start and am open but skeptical of all treatments, alt or conventional. Doctors and law makers need to admit that they don't have the answers to mets and that making laws to stop people trying alternatives when there are no medical treatments left is immoral in the extreme.
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WOM, I assume the person who wrote about your bc pills may have thought you meant BC (breast cancer) pills, say tamoxifen, not birth control pills. BC, bc, very confusing. An alt therapist would have been put out of business or sued for that misdiagnosis, but the doctors are protected. Not a level playing field and we are the ones being hurt.
Edit, I was wrong, this was not the confusion. But it was still a misdiagnosis. What's the point of a 'standard of care' when doctors won't rule out cancer due to their bias that only older women get BC?
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I know Suzzane Somers had the misletoe. She is like 17 year clean after that a mast and rad. She is put through the ringer. Some of the substances you mention are legal here but for a doctor to say you should used these to treat your cancer is illegal. That is why they always have the disclamier. And before we go nuts on that remember Qtips even have to say not to put in your ear..lol
I believe frame of mind is big in the healing process myself.
Wow Sheila I hadnt thought of it as breast cancer pills as I am so used to them being referred to by name. Thanks. One center I looked up even started doing a good cell transplant. Once they do the chemo they pump you with the good cells to reestablish your immune system so you are left in such a weakened state. Some of their stuff is in clinical trials. I am just wondering if anyone knows of any trials being done on improving the recoveies/suffering for patients doing these treatments? The only side that seems focused on this is alternative. So very sad.
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"LtotheK- Just to clarify, US don't necessarily confirm what a mammo shows. They see different things. US can differentiate between cysts and masses. Mammos see calcifications and other things. Many, many women had clear mammos where their BC did not visualize. I was someone who was "mammo occult", had 14 clean mammos in 14 years. I found the lump myself and it was confirmed with US not mammo. I am now having mammo plus US every 6 months and MRI the other 6 months."
Thank you, DM. That is exactly what happened to me. I mean, exactly.
The power of mammography, which nothing else can detect at this time is the microcalcifications. But mammos can also pick up things that are tracked further with US. And US can pick up things on its own, especially in dense breasted patients like myself. But from what they explained to me, you wouldn't start with an ultrasound, or work with it in lieu of another screening mechanism. In general screening, I don't get the option to say, US only, please. If I did, I'd probably go for it. I think mammography is fairly useless in a patient like myself where the microcalcs showed nothing,and my tumor hung out in dense breast tissue like a white cow in a snowstorm.
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My tumor was missed by both a mammogram and an U/S. I believe in doing two forms of screening, for those of us who have had bc. I have an annual mammogram and an annual MRI (no radiation in an MRI).
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WOM: Interesting study from the Berkeley Lab. I am hoping this will be the future for us: testing the tumor cells before chemotherapy to determine the best treatment to choose. So far I have only heard of one person who had a chemosensitivity assay test, I guess it's still experimental.
So you are questioning the research being sponsored by the drug's maker, Glaxo. This study was also funded by the National Institues of Health. I would assume Berkeley Lab and the researchers are independent though. And I would hope the study would be reviewed by peers and the FDA, although the study isn't exactly recommending Lapatinib for anything, only reporting how some biomarkers responded to Lapatinib (Xeloda).
You are smart to question everything, though. But if we can't trust anyone, then how can we be treated? I trusted my doctors, although I did question most of what they told me. I did a lot of research also and argued with them over some things. But in the end, I believed that they were using everything they knew to treat me in the best way possible.
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hi MOC,
I agree, not only our ovaries produce estrogen. granted the adrenals produce them too... and I am glad you found a way to supress the adrenals from producing estrogen..in fact even stored fat in the belly helps with storing estrogen (this all the more reason you have to continue your marathon-- its good for the body)
I would say keep it up!
for us, its just not our way of working with our bodies, we try us much as possible work with the natural capacity of our bodies.
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MOC,
thanks for your thoughfulness. yes. I know you meant the ultrasound for the ovaries not for the breast.
but actually, we are going to do ultrasound for the breast and the ovaries. in fact, when my mother noticed the big lump on her breast last december 2009, she highly suspected it was cancerous. but we did not straigh away, went for a mammogram.
she went for an ultrasound for the breast first. why? at that point I was still totally ignorant about the dangers of radiation even small amounts (from xray and mammo). anyway, now am glad that the GP at Raffles Hospital (one of the premier hospitals in Singapore), actually chose ultrasound first for my mother (meaning he would not send every woman who have a lump in her breast-- to mammograms-- he is probably aware of the dangers of radiation--although he did not really say it-)
read her ultrasound report (dated 2 Jan 2010) here
http://nanaymiriam.wordpress.com/2010/02/22/diagnosis-januaryfeb-2010-dcis-stage-2-breast-cancer/
there were 6 lumps on her left breast and 4 lumps on her right breast. 1 out of 4 was described as highly suspicious because of very irregular margins and increased vascularity.
then they ordered the mammogram (only after realizing there are irregularly shaped lumps).. then the biopsy.
I believe they have done the right sequencing of diagnostic tests in this regard (ultrasound first, mammo and biopsy), and for that am truly grateful.
so for myself, last year I asked for ultrasound and thermography to examine my breasts as part of the usual Annual Check-up (either that or thermography)... and will continue doing so year after year..instead of constantly exposing myself to radiation (mammograms)
no matter how small the quantity is. this is precisely the reason why the US Preventive Services Task Force released a guideline to recommend mammo only for women who are older than 50 years old. again, this is just me, even the US preventive services task force, say that they are just providing guidelines-- but doctors are not legally obliged to follow their guidelines.. meaning even if your doctors do not follow these guidelines there will be no legal impacts. they probably have some level of influence to women like us.. but there is no legislative or commecial power that will help them to measure compliance to this guidelines-.
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aside from the genetic testing, U/S, thermography, I would also get myself tested for Hormonal Imbalance, Organic Acid Imbalance..
as the lumps actually starts with imbalances of some sort-- so better go directly to the root cause.
by the way MOC, I salute you for being a consistent marathoner. I have done a 5K and 10K run (Standard Chartered), at a very slow speed of 2km per 30 minutes.. my best time for a 10K is 2.5 hours.. so its not actually a run-- but fast walking
and even then-- am really slow. so I really salute you for your endurance.I thought on the 8km or 9km mark I wanted to give up.. the heat in Singapore is kind of overpowering at 10am in the morning..
Nike has started a night marathon, because most people find it hard to run in daylight.
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hi sheila,
we have also read about the work of Gawler.. among other alternative supporters as Gerson and Donald Kelly (a dentist who fought pancreatic cancer with pancreatic enzymes-- and have also helped)
thats why when you posted that study, (by a conventional doctor) that tumuor can be made dormant.. by enzymes.. it did not catch me by surprise because it has been what Gerson and Kelly has been talking about during their time (when they were still alive)..
I just hope that Gawler will also be widely known as Gerson and Kelly-- as he is closer to us here in Singapore.. its a shame that he has retired already..
Gawler is featured in a book called Cancer Healed Naturaly by Betty Khoo (Singaporean born, Australian citizen Cancer Survivor-- is how she calls herself)..
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wornoutmom -
Have you made a decision as to what course of tx, presumabley alternative, that you are going to do now? If you've read Dr. Block's Life Over Cancer book, there's many people who refused chemo, against his wishes, and went on strict diet and surgery (I think) and did quite well. Dr. Block will not force you to do anything you don't want to do.
This choice is completely up to you. I have not read through all 27 pages, so I'm not sure what you are leaning towards, but wondered after all these posts if you were closer to a decision?- Kim, Stage IV, triple +, done both CAM and conventional
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Radiant: I saw my onc to let her know I will be pursing an alternaive approch for the time being. I will be closely monitored via blood, mamogram, and MRI testing. I was also successful in gaining an oncotype test which is normally not given for Her2. Thank you ladies for informing me of this test. I told her I would feel better making a decision based on ME rather than lumping me into a huge group. I also will be given my cancer marker tests. Both test were only approved by me questioning them. Now like all tests we know they are not 100% but before I ever agree to such a serious treatment I want to have all my personal data on the table. I was also referred for the BRCA test. I will see how these come back to see how me as an individual person am looking at my odds. The more personal data the more I feel my decisions are based on ME. Now depending on my results I will base future descisons but do know that if chemo ever came to play I will pay out of pocket for chemo sensitivity. I would rather gamble with that than the random perscribing on my receptors. They test my tumor.
FYI your tumor is held for 9 years (I think that is the number) as my doctor tried to tell me that the tumor was out of my body and I kindly relayed this message and suddenly I was appoved tests she claimed couldn't be done prior to me letting her know I had this knowledge. My paths had errors and I demanded retests. And this is a place I want to get chemo from...lol Scary
She also confirmed my herceptin question . I was given 1 year as my recommendation and learned that the 1 year had no big science behind it. It just happened that since they chose that length in the studies the docs give the same date. She did say they tried 2 years but it showed no improvements. But no tests on less time. What baffles me is that they claim herceptin is not as effective without the chemos. Okay but the chemos are only 6 (if I recall correctly) treatments given in 3 week cycles with herceptin. Then the remaining Herceptin is given alone. So how effective are the remaining herceptin. I would not be surprised if the herceptin time is shortened in the future unless they don't do studies. Just hate to see over exposure to a drug if not beneficial. If they studied longer why not little by little studing shorter.
Lynn18 my concern with a company who has a finacial interest sponsoring drug research. It does not shock me they are starting the testing with a drug from the person who is giving the money to do the research. Why not start with working on the most effective drug or most prescribed as it will give the most people out there a benefit? If you see this happening in a random study it should tell you some of the data out there presented is not coming from an unbiased approach. Doesn't it make you wonder if they can identify this drugs makers then that drug may be perscribed more as they can test it, thus giving the company a financial gain. I know I would try the one they could test on first.
I am excited about the future but we have chemo sensitivity which does the same thing from alternative sources and have been put down for years. But chances are we'll wait years for this group to get to the point that already exists (wouldn't it be better to test a test that is already here) and then they will get credit the others were not given for the same thing. And no one will question that test because it came from a new source regardless if it is the same darn thing. Time is precious for cancer patients so why not also start with an established test and give credit where credit is do. Bring the existing test to B lab and go from there. Let those reasearcher see if there are holes if not we could go to clinical trials. Why waste time reinventing the wheel? Take the wheel and look for improvements.
I think there are several places that do chemosensitivity in US but I am only looking locally for myself shoud the event arise.
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WOM,
Certainly it is your body, and you will do what feels right for you regarding treatment. However, I wonder if you fully understand the implications of the decisions you are making. You said that your doc will monitor you with MRI, blood and mammo. But do you realize that if your Her 2+ cancer returns its more likely to be an incurable metastatic recurrence in your viscera, lung, liver or brain, than a potentially curable local recurrence? By the time one of the monitoring tests picks up a recurrence, it will likely be too late to cure. Just want to make sure you understand that effective treatment now gives the best chance for cure.
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Tumor marker tests are highly unreliable. They often spike for people who don't have mets (been there, done that) and there are plenty of women who have normal markers levels with mets. Its best used for women already diagnosed with mets to monitor response.
I
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I agree that everyone has a right to make the choice they will, but I'm with a couple of other posters here. I feel a responsibility to urge you to get two or three opinions, and get an opinion on naturopathic treatment from a naturopath (for instance, my naturopath might have supported no chemo for stage 1, but I'd love to know what she'd say for stage 3).
I respect individual decisions, but more opinions would be better in this case. I have a huge folder of all my tests and surgery results, and I take that binder with me to appointments.
I also think it's urgent to let readers know that there are windows of opportunity for treatment. Twelve weeks after surgery, I believe, is the window for chemotherapy.
Everything I've read indicates herceptin is one of the great breakthroughs in cancer treatment in history. The beauty of the Her2+ cancers is, after treatment, once you reach your five-year mark, it's quite possible that cancer will never return. Wow, that is wonderful. Wish that were the case with the ER+ cancers!
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I think WOM is an adult and has shown that she can think for herself and better than most. Interesting how no one ever tells a person who gets advice to do chemo to question it first when the evidence of its efficacy for breast cancer is suspect at best. We've been through all of this a million times (including the data mining). It gets rather tedious to see WOM treated like a child. I think she has her trillion opinions. This is her conclusion. In fact, if more people did their research, we might have more breakthroughs in cancer because more would have reached the stage at which they realize how woefully inadequate cancer treatment is. If 100 women with WOM's cancer profile really did their research the way she did, it is possible that they could reach 100 different decisions.
And I hope that readers (or lurkers) understand that is a support forum and that those of us who write are under no obligation to them but, rather, to ourselves and each other to offer support and ideas and friendship. I am not writing for posterity. Lurkers: you are adults, you are responsible for what you read, enter at your own risk, and NEVER TAKE MEDICAL ADVICE GIVEN OVER THE INTERNET - ESPECIALLY IN A SUPPORT FORUM FROM NON DOCTORS. At most, you might get some ideas for further inquiry.
Can we please leave WOM alone?
Herceptin is hailed as a panacea for some, but long-term data is lacking for obvious reasons, and it only works for some people. It is a ray of hope, but not a breakthrough. If she did try it, it might not work for her. It could kill her - and no one here can swear to the contrary. It might help her. No one here knows. I just don't understand what is so difficult to understand about the fact that since statistics cannot be applied to individual people, there is no knowing what would happen to WOM. One doesn't get 50 percent x reaction and 85 percent y effect. Leave it alone!
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WornOutMom: I would like to echo LtotheK here: considering the nature of your tumor, are you planning to get at least a second opinion? I think that's advisable for any breast cancer patient, including you.
I am integrative/alternative oriented, but I have been using the Cancer Treatment Centers of America: they offer the very best of the latest treatments, and at the same time, are COMPLETELY open to the use of homeopathy, naturopathic medicine, mind-body techniques, etc..., in conjunction with regular treatment.
Please get a second/third opinion if necessary. I know, it is not easy. It's a like a military obstacle course, trying to decide on the right treatment; but it will pay off later.
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There's been some skepticism about what actually cured Ian Gawler, a letter by his ex wife published in the Australian Medical Journal points out many errors and misinformation in Gawler's treatment. I can't paste the link, it's on www.mja.com.au
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orange I am curious where you are getting your data? Her2 is most likely for reoccurance true. In terms of distant metastisis the areas you mention are the areas of the body you mention are the areas most often to occur. So I see your points but would love to see data that her2 is more likely to be a distant occurnace as opposed to local. I honestly just cant find anything referrencing specific areas of occurance just reocurrance in general. Can you please post a website for me. I would appreciate adding this part to my studies 0
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Athena, Wornoutmom continues to be in dialogue with posters here. This is a public forum, and as I've said 100x, it doesn't belong to the original poster. It belongs to the internet, and all the women like myself who will come here to search for information. I'm sorry if I offend you, but I am a young survivor, and we are extremely vulnerable. If the original poster were a different age bracket, I would have backed off some time ago.
I thought I gave pretty cool advice: if you want to eschew the medical establishment, go to a reputable naturopath, and ask them how they'd deal with Stage 3. And I can't see a thing wrong with suggesting more opinions. Two at minimum. Young survivors deserve three, that's what I got.
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Well thanks for letting us know your decision. I can tell you feel that you are taking the right steps for you at this time.
Best of luck,
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Athena,
On what basis do you say: chemo's "efficacy for breast cancer is suspect at best."
Chemo has been studied on tens of thousands of breast cancer patients. The data is quite clear. For patients like wornoutmom, chemo would save the lives of 27 women out of 100. Do those lives mean nothing to you?
If every newly diagnosed Stage 3 breast cancer patient (there are over 10,000 such women each and every year) refused chemo, as you seem to be encouraging, there would be more than 2,000 avoidable breast cancer deaths each year. Does that mean nothing to you?
Would you really encourage all those women to avoid chemo so that they could, collectively, avoid the approximately 100 deaths that might be attributable to chemo side affects? 2,000+ die to spare 100. How does that make any sense at all?
The data for Herceptin would likely have a similar effect in terms of lives saved compared to lives lost.
You act as though statistics have no value or meaning to individual people, but those statistics represent real lives. Twenty-seven percent is 27 women out of a hundred. Twenty-seven women who are daughters, sisters, mothers, friends, aunts, etc. Twenty-seven women whose lives are treasured not only by themselves but by their loved ones. Don't you think each woman deserves the best chance at survival modern medicine can offer her, even if it cannot save us all?
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Wornoutmom,
In general, for all breast cancer, recurrence is more likely to be distant rather than local. The numbers are about 2 distant recurrences for each local one. (Another way to put it, about 1 out of three breast cancer recurrences is local only.) Also note that about 80 percent of those who recur locally go on to have distant recurrence.
One way to approximate your specific chance of recurring locally vs. distantly is to compare the relapse rate to the mortality rate at Adjuvant Online. For women like you (with your tumor stats, stage, etc.) 84 percent will relapse within 10 years with no chemo or hormonal treatment. But "only" 63 percent will die of cancer. The difference between 84 percent and 63 percent (21 percent) reflects those who relapsed locally and were successfully treated.
Keep in mind that Adjuvant does not consider Her status, and I believe Her2 positivity means a higher likelihood of relapse, sorry to say.
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LuvMyLab, Grace Gawler was mostly refuting her ex-husband's claim that the vegetarian diet helped, as she was cooking the meals and said he was eating meat. Ian Gawler is quite clear that he did so many things that it's impossible to know which ones on their own or in combination worked. He was convinced it was more about the meditation, visualisation and the faith he had after the Philippine healers and the blessing by Sai Baba, whereas she is now promoting some sort of massage, or laying on of hands, as learnt in the Philippines, so likes to think that was the main healer. It seems she is saying the hands on physical things, he says the belief in all those things. Mind over matter.
Grace Gawler was working at the retreat and promoting all the methods she is now refuting. They also had a very bitter divorce, and she has her own support clinic and promotes her own ideas. It's a shame she is still so angry, but I'm glad they are both working for the cause. Ian Gawler is still giving talks and other work, he's only retired from the retreat which was a full time job.
I've read both their books and appreciate the vast lifetime dedication they have both put into helping cancer patients, both as a couple and individually. I also appreciate that the Australian government has seen fit to encourage Dr. Gawler, his retreat and part time courses, and has awarded him an Australian medal.
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Here's a recent news article which offers some insight into why breast cancer is so unpredictable/stubborn. We're like snowflakes, no two are alike!
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Hi WOM,There were 4 large studies of Herceptin in the adjuvant setting: HERA, BCIRD006, NSABP B31 and NCCTG. NSABP and B-31 had similar patient populations and treatments and were combined into one analysis commonly referred to as the "Joint Analysis" It is in this study that I found the break out of locations of the recurrances. This was published in an article in I think JAMA or NEJM (can't remember which off the top of my head).I have the full text of the article at home (not there now) and am happy to send you a copy. However, I am having minor surgery tomorrow morning so will not be able to scan or copy it until I go back to work on Wednesday or Thursday. Tomorrow afternoon or Tuesday I will find the article and post the recurrences as found in the article and the exact reference. Since I don't think either publication is available without paying, if you pm me with your contact information, I will mail/email you a copy so you can verify the information for yourself.0
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WOM -
I don't think I made this clear in my previous post - the study lists the numbers and locations of all the recurrences. So you can add them up and easily calculate for yourself that most are distant.
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