Recently, I stumbled across what I believe is the source of at least most of my health problems over the years, including the breast cancer that I developed. The sad part of this is that I have been in the care of many doctors all this time, none of whom seemed interested in tracking down the source of my troubles. Too bad I had to find this for myself on the web! But at least I have found it.
Before I tell you about this discovery, I would like to give you a brief overview of my ongoing health, not to bleed all over you, but so you can understand that my health has been no small matter for me, and that this discovery is significant, and one that you might want to take some time to investigate yourself.
Among my health problems over the years have been polycystic ovary syndrome and all its many accompanying symptoms (discussed elsewhere in this blog), fibrocystic breast disease, devastating chronic fatigue and other hypothyroid-like symptoms, (despite normal bloodwork, for the most part) irritable bowel syndrome, mitral valve prolapse and the resulting heart arrhythmias, and chronic upper respiratory infections, generally leading to secondary infections, including at least six bouts with pneumonia and many cases of bronchitis and sinusitis, illnesses sometimes occupying up to four months out of any given year. And needless to say, breast cancer was the heavy hitter of all the characters in my health scenario. I could go on, but you get the idea. I have spent many, many years dealing with health problems, including several surgeries and stays in the hospital -- my medical chart is about 5 inches thick. I'm sure it's not hard to imagine that I have hoped for some answers.
So now to the discovery. It's very simple, really, and inexpensive. In fact you may have some of this stuff sitting in your medicine cabinet right now. It is . . . .
iodine.
Hard to believe, right? But here are some important facts:
1. Iodine is the major building block of thyroid hormone. If there is a deficiency, then hypothyroid-like symptoms may appear, even if the thyroid gland is perfectly healthy. It just lacks the ingredients it needs to make hormones.
2. The current RDA for iodine (150mcg) was intended to prevent goiter and cretinism. An optimal daily requirement has not been intensively studied or established. Proponents believe it should be much higher.
3. Iodized salt is the only significant source of iodine for Americans who do not eat seafood on a regular basis, which with the mercury issue and increasing costs of seafood, is more common. For those also cutting back on salt, an iodine deficiency becomes more likely. Therefore, it is likely that most people in the U.S. are iodine deficient to some degree.
4. It is well-established that iodine deficiency is related to fibrocystic breast disease. Emerging science also strongly suggests that breast cancer for some women is caused, at least in part, by iodine deficiency. This is bolstered by the fact that Japanese women, who consume up to 13 mg per day of iodine in their diet, are much less likely than American women to develop breast cancer, and are, in fact, among the healthiest people in the world. (Keep in mind that 13 mg is nearly 100 times the U.S. RDA.) In any event, taking iodine regularly can certainly help protect you from breast cancer, and other female cancers, even if you are otherwise healthy.
5. Iodine resides in every cell of the body, proponents say in amounts up to 1,500 mg, with only about 3% of that held in the thyroid gland. In women, the breasts, ovaries, lungs, and uterus are also repositories for larger concentrations of iodine, and the bones and muscles to a lesser extent.
6. Until the advent of synthetic thyroid hormone therapy in the 1960s, doctors routinely used iodine to treat many thyroid problems. And, without blood tests to guide them, they simply treated until the patient felt well. Gee. What a concept.
7. It's hard to 'overdose' with iodine, because the body excretes any excess. I have experimented with dose for the last year, and I ended up around 25 mg daily as being the dose that gives me consistently good, productive days.
8. Women are more prone to develop health problems from a lack of iodine. You will see below that most of the health problems mentioned affect women the most.
Below is a list of possible symptoms. Although this is a breast cancer blog, I am including discussions of other health problems, because so many of us suffer from them.
PCOS There is pretty solid evidence that iodine deficiency is at the bottom of this condition for some women, OR that it causes symptoms that are mistaken for PCOS. The lack of ovulation, and therefore a lack of progesterone, in the typical PCOS woman sets her up for estrogen dominance, which can lead to cancers of several kinds, including breast cancer. This was likely the case for my cancer, according to my oncologist in NYC.
Hypothyroid-like symptoms: fatigue, depression, anxiety, weight gain, loss of libido, and memory issues. No doubt that iodine deficiency can be the cause of this, rather than overt thyroid disease.
Breast complaints, including fibrocystic breast disease and increased soreness in the breast around the time of menstruation. Iodine's ability to correct these problems is well-documented.
Breast cancer
Chronic fatigue issues, including fibromyalgia. Many doctors who are iodine proponents note that these diagnoses only came on the scene after routine iodine treatment for thyroid issues was abandoned in favor of synthetic hormone replacement, and after thyroid testing became the last word in treatment. Now doctors only treat patients for thyroid disease if they have obvious blood work problems, and they treat the patient until their blood test results are 'in normal range' rather than until the patient feels well, as was done before the advent of testing. For many who do not have thyroid disease, but rather a shortage of iodine, they may, in fact, experience chronic fatigue and other symptoms that may not be reflected in the blood work. Many of these poor souls are shunted off into the chronic fatigue category with no effective treatment, because they don't fall into the 'thyroid' category for treatment. Some doctors report excellent results with their chronic fatigue and fibromyalgia patients, using iodine. If you have a chronic fatigue issue and you've tried everything, it certainly can't hurt to try iodine!
Irritable Bowel Syndrome This is not generally found on iodine deficiency symptom lists, but I'm listing it here because three weeks into taking iodine, my 30-year case of IBS simply disappeared. I mean disappeared. I wasn't expecting that, and to be released from so many years of pain and discomfort is an added bonus.
Diabetes
High blood pressure
Heart arrhythmias
Impaired immunity to common viruses, and some lung diseases. Iodine can be a valuable tool in the treatment of COPD, in particular, because it induces apoptosis, or programmed cell death. This means that it discourages colonization of viruses and bacteria in the lung tissue (which is one property that makes it effective in the treatment of related cancers as well). It will also loosen and thin mucous secretions.
Slowed mental function, especially in children, and possibly ADD
Links to iodine deficiency and autism are being explored, as well as a relationship to migraine headaches
Looking at these symptoms, you can probably see why I found an iodine link to all my medical complaints worth exploring. And now I can say that since I have been supplementing with iodine, I
have not felt so well in a long time.
Unfortunately, the idea of iodine
supplementation has not yet reached the mainstream medical community, so
you may be on your own here, unless you have a good naturopath. Mainstream doctors are slow to adopt new ideas and treatments due to liability issues, and many will wait until longer-term results are available, to protect themselves. Understandable, but in the meantime, there are an awful lot of people out there suffering needlessly. After all my negative experiences with doctors, I have just gone ahead and treated myself, but I can't, of course, recommend this for anyone else. If you can find a like-minded doctor, you'll always be better off coordinating iodine supplementation with him. If, on the other hand, you decide to do the research yourself and give this a try, be reassured knowing that it's very difficult to take too much iodine, and there is really no downside to trying it. Will it help alleviate your symptoms, whatever they may be? I can't say, of course, but if you do try it and find good results, let me know!
There is so much more info out there on this subject, so I won't belabor it anymore here. Below are some sites to visit to educate yourself more.
breastcancerchoices.org has more information on this topic, and also has several worthwhile links regarding the relationship between iodine and the breast.
Here is an abstract for a study done on breast cancer, as related to iodine.
There are more out there, just a Google search away.
A long historical perspective on iodine
A primer on supplementing with iodine
The cheapest place to buy iodine pills on the web -- Iodoral is the most recommended, but NuFormulas is also good
Good luck, and I welcome your comments.
Friday, March 22
Saturday, March 16
The Future of Breast Reconstruction
If you're like me, after you read this, you'll wish your breast cancer could have waited just a few more years.
For decades, cutting chunks of fat out of other parts of the body and suturing them into place on the chest has been the gold standard of breast reconstruction after mastectomy. This was because attempts to simply inject fat cells into an area failed -- most of the fat cells would just die. In 1987, the American Society of Plastic and Reconstructive Surgeons determined that fat grafting for breast augmentation could make cancer detection more difficult, and several studies around that time reported severe complications with the procedure. So for many years, most doctors did not use fat grafting for any treatment on the breast.
As the years passed, fat grafting in small quantities was used for other applications, but with limited success due to the large percentage of fat cells that would die. A few years ago, Cytori Therapeutics developed a device that could safely extract fat cells without damaging them, and mix them homogenously with the stem cells found naturally in fat, in preparation to inject them into other areas of the body. A high rate of survival of fat cells was achieved with this method, which meant that larger amounts of fat could be grafted successfully. This paved the way for the use of fat grafting in breast augmentation.
Then some studies were done to verify the true danger of using fat grafting as a means of rebuilding the breast after mastectomy, with some success. The results of one of these studies can be found here. The process is longer, taking months, rather than one procedure. Layers of fat are laid down one at a time, starting at the chest wall and building outward over time. But the benefits are obvious -- no long incisions and subsequent scars at the donor site, only a series of small incisions made to facilitate the suctioning of fat. And believe me, this is huge. The abdominal (or other donor site) surgery is the most difficult part of a breast reconstruction, in terms of pain and recovery.
So there is a resurgence of interest in using fat grafting to rebuild the breast, and there is one doctor in Miami offering the procedure. I have not come across any others, but if you find any, please post them in the comments section.
With today's technology, your options are usually either lumpectomy and mastectomy. I had asked my reconstructive surgeon about a quadrantectomy, which is the removal of larger part of the breast than lumpectomy, but less than removing the entire breast. It was a procedure that he did not offer, due to how much it disfigured the breast. I also asked several surgeons that I consulted why they could not just take a smaller flap of fat to fill in the area after a quadrantectomy, but got no satisfactory answer from any of them. I was left presuming that it would be hard to tailor a fat flap to fit an oddly-shaped gap in the breast. So we're left with either having a lumpectomy that is not large enough to disfigure the breast too much, or a mastectomy with a mound-shaped flap of fat or other mound-shaped filler to rebuild the breast.
With fat grafting, another option that will undoubtedly open up for breast cancer patients is the ability to fill in odd gaps after lumpectomy or quadrantectomy. Doctors will be able to remove larger areas of the breast without concern, when they can simply inject fat into those oddly-shaped areas to fill them in. For those having lumpectomy, this could mean the ability to have a larger lumpectomy to achieve larger margins around the cancer. In borderline cases, (like mine was, where a lumpectomy large enough to get rid of the cancer would seriously disfigure the breast, indicating mastectomy instead) a quadrantectomy could be offered instead of mastectomy, possibly conserving enough breast tissue to retain the natural nipple and sensation in the breast. It's all my conjecture at this point, but who knows?
I have been told that, due to my PCOS, I am at greater risk to develop cancer in the other breast. If that happens, I may be able to take advantage of this new technology, and after all I have been through so far, I would certainly give it a try. But let's hope it doesn't come to that.
Wiki info about Cytori
Cytori's information about breast reconstruction using their procedure
About.com article outlining the procedure
Blue Cross analysis of fat grafting to the breast
Article about fat grafting for breast augmentation, but much of the info crosses over to breast reconstruction.
For decades, cutting chunks of fat out of other parts of the body and suturing them into place on the chest has been the gold standard of breast reconstruction after mastectomy. This was because attempts to simply inject fat cells into an area failed -- most of the fat cells would just die. In 1987, the American Society of Plastic and Reconstructive Surgeons determined that fat grafting for breast augmentation could make cancer detection more difficult, and several studies around that time reported severe complications with the procedure. So for many years, most doctors did not use fat grafting for any treatment on the breast.
As the years passed, fat grafting in small quantities was used for other applications, but with limited success due to the large percentage of fat cells that would die. A few years ago, Cytori Therapeutics developed a device that could safely extract fat cells without damaging them, and mix them homogenously with the stem cells found naturally in fat, in preparation to inject them into other areas of the body. A high rate of survival of fat cells was achieved with this method, which meant that larger amounts of fat could be grafted successfully. This paved the way for the use of fat grafting in breast augmentation.
Then some studies were done to verify the true danger of using fat grafting as a means of rebuilding the breast after mastectomy, with some success. The results of one of these studies can be found here. The process is longer, taking months, rather than one procedure. Layers of fat are laid down one at a time, starting at the chest wall and building outward over time. But the benefits are obvious -- no long incisions and subsequent scars at the donor site, only a series of small incisions made to facilitate the suctioning of fat. And believe me, this is huge. The abdominal (or other donor site) surgery is the most difficult part of a breast reconstruction, in terms of pain and recovery.
So there is a resurgence of interest in using fat grafting to rebuild the breast, and there is one doctor in Miami offering the procedure. I have not come across any others, but if you find any, please post them in the comments section.
With today's technology, your options are usually either lumpectomy and mastectomy. I had asked my reconstructive surgeon about a quadrantectomy, which is the removal of larger part of the breast than lumpectomy, but less than removing the entire breast. It was a procedure that he did not offer, due to how much it disfigured the breast. I also asked several surgeons that I consulted why they could not just take a smaller flap of fat to fill in the area after a quadrantectomy, but got no satisfactory answer from any of them. I was left presuming that it would be hard to tailor a fat flap to fit an oddly-shaped gap in the breast. So we're left with either having a lumpectomy that is not large enough to disfigure the breast too much, or a mastectomy with a mound-shaped flap of fat or other mound-shaped filler to rebuild the breast.
With fat grafting, another option that will undoubtedly open up for breast cancer patients is the ability to fill in odd gaps after lumpectomy or quadrantectomy. Doctors will be able to remove larger areas of the breast without concern, when they can simply inject fat into those oddly-shaped areas to fill them in. For those having lumpectomy, this could mean the ability to have a larger lumpectomy to achieve larger margins around the cancer. In borderline cases, (like mine was, where a lumpectomy large enough to get rid of the cancer would seriously disfigure the breast, indicating mastectomy instead) a quadrantectomy could be offered instead of mastectomy, possibly conserving enough breast tissue to retain the natural nipple and sensation in the breast. It's all my conjecture at this point, but who knows?
I have been told that, due to my PCOS, I am at greater risk to develop cancer in the other breast. If that happens, I may be able to take advantage of this new technology, and after all I have been through so far, I would certainly give it a try. But let's hope it doesn't come to that.
Wiki info about Cytori
Cytori's information about breast reconstruction using their procedure
About.com article outlining the procedure
Blue Cross analysis of fat grafting to the breast
Article about fat grafting for breast augmentation, but much of the info crosses over to breast reconstruction.
Newer Radiation Options
In 1999, researchers in Milan, Italy, started experimenting with a specialized radiation treatment on breast tissue during reconstruction surgery, to kill any potential cancer cells remaining. Radiation was focused directly on the area where cancerous tissue had just been removed. In particular, the tissue immediately under the nipple was targeted for this 'spot radiation' technique, because the nipple has long been considered a harbinger of cancer cells after mastectomy, which is why the nipple is routinely removed. The hope was that this radiation treatment would make it possible to safely retain the nipple in many cases. The technique was known as intraoperative radiotherapy, abbreviated as either ELIOT or IORT. The study concluded in 2007, and since then the technique, also known as TARGIT (targeted intraoperative radiotherapy), has been trialed in the U.S., and is emerging as a viable option to whole-breast radiation. Other parts of the breast are now 'spot irradiated' wherever a cancerous lesion has just been removed, not just the area under the nipple. In some cases, this radiation technique may mean avoiding a mastectomy.
Results have been good, with short-term survival rates roughly similar to whole-breast radiation. The technique will almost certainly become more widely offered, but it's still pretty new here in the U.S., and doctors are slow to get on the bandwagon, due to fear of litigation if long-term results are less favorable. Can't really blame them, but it means that the wheels grind excruciatingly slowly.
I wish I could give you a big list of cancer programs now offering this option, but Sloan Kettering is the only one I've been able to ferret out. They had already started using the technique before my own experience with breast cancer, and it seems they are still one of the few touting this as an option. You can always ask your oncologist -- he may have more information, and in any event, the more they see a demand, the more interest will be generated. And if you have the name of a provider offering this procedure, please add it to the comments section.
Basic Wiki info
General info link
A site that lists many links discussing this procedure
Sloan-Kettering info
More Sloan-Kettering info
Abstract referencing the original study in Milan
Results have been good, with short-term survival rates roughly similar to whole-breast radiation. The technique will almost certainly become more widely offered, but it's still pretty new here in the U.S., and doctors are slow to get on the bandwagon, due to fear of litigation if long-term results are less favorable. Can't really blame them, but it means that the wheels grind excruciatingly slowly.
I wish I could give you a big list of cancer programs now offering this option, but Sloan Kettering is the only one I've been able to ferret out. They had already started using the technique before my own experience with breast cancer, and it seems they are still one of the few touting this as an option. You can always ask your oncologist -- he may have more information, and in any event, the more they see a demand, the more interest will be generated. And if you have the name of a provider offering this procedure, please add it to the comments section.
Basic Wiki info
General info link
A site that lists many links discussing this procedure
Sloan-Kettering info
More Sloan-Kettering info
Abstract referencing the original study in Milan
Time to Finish
So now, several years later, I have finally gotten around to 'stage 2' of breast reconstruction. After the initial reconstruction, I was left with a large patch of belly skin on my left breast, scar tissue where my left nipple and areola had been, an off-center belly button, a 22-inch scar across my belly (that looked like Interstate 89 running through New Hampshire), and a very strange looking lopsided abdomen. I was not a happy camper.
It turns out that before I ever had cancer, I had a fairly large diastatis recti -- a separation between the two sections of the rectus abdomini muscles. This is fairly common, and had occurred during my three pregnancies, with the stretching of all those muscles, most notably with my last child, who weighed in at nearly 10 lbs. at birth. I was enormous, and looked like I was carrying twins.
The original reconstructive surgeon had assured me that he would be repairing any diastasis during the harvesting of fat (along with several other unkept promises he made), but this was apparently not done. The other issue with my belly, a possible side effect of the Diep flap procedure that I had not come across in all my research, is that many nerves that serve the abdominal muscles are cut during the harvesting of fat, even though the muscle, itself, is not touched. In a small percentage of women (my luck holding, naturally) this produces a weakening and prolapsing of the abdominal muscles. So between these two issues, I looked like I was nearly 'full-term'. Wearing normal pants has been impossible. Suspenders would probably have helped, but they are just not fashionable, ya know?
I contemplated returning to my original surgeon (Dr. Allen practice in NYC), and in fact I contacted them, and sent along a picture of my current scenario at their request. After three subsequent unreturned phone calls, I decided to go elsewhere, since I had not been happy with the first procedure anyway. I talked to my insurance company and they suggested Mass General in Boston, a hospital on my plan, and one that I already knew has a good breast cancer/reconstruction program. I looked on their site and chose Dr. Amy Colwell -- I liked her background and the fact that she had written a number of papers. She demonstrated an inquisitive mind, so I thought she might be just what I needed--and she was!
9 days ago, I went under her knife. She repaired the diastasis and put a mesh across my entire belly to bring everything into alignment again. She moved my belly button to center, and rebuilt it using stitches more on the inside of the folds, rather than around the outside of the belly button, which just doesn't look right or natural. She also resected my abdominal scar, making it into a nice 'U' shape about an inch lower than it had been. She removed as much of the patch on my left breast as she could and built me a new nipple using the scar tissue remaining on the breast. This tissue has gradually softened and some of it has reverted to normal nipple skin. So she worked with that skin, rather than using a skin flap, and we both agree that the result will look more natural. In the process, she made the breast a size smaller, in order to remove as much of the patch as she could -- nearly all of it went, with only a small strip left at the bottom of the breast. She performed liposuction on the right breast to make it match the new, smaller left one. She didn't want to do the lipo, as she feels this makes the breast flatter. But I persisted, telling her that I would prefer a slightly flatter breast to having scars on that breast, as well. We checked to see if the insurance would cover this part, which they did, and she did it for me.
Naturally, at this point I'm still in bandages, and have one drain still hanging from the abdominal scar, but I can already tell you that the result will be something I'll be happy with. Not perfect, of course, but I will feel more like myself. I had purposely gained 40 lbs. way back then to have enough belly fat to harvest, and only about 15 lbs. of this has come back off, to my continued annoyance. In the past I have always been able to take weight off relatively easily, and it has just been impossible for me this time. But I think I may have stumbled across the answer -- I am now supplementing iodine, and there is a whole lot of evidence that most of us are iodine deficient in the U.S., which prevents the thyroid from making thyroid hormone, making it difficult to lose weight. i will be writing more on this in my other blog, so check it out there.
I will likely post some before and after pictures, to show just how much can be done to make your final result acceptable after everything has gone wrong. I would like to say again that Dr. Robert Allen is an excellent surgeon and I loved his approach -- sympathetic, creative and friendly. Had I been in his care, I have no doubt that my result would have been better. But with cancer still in my breast, I felt I could not wait several months for him, and instead went to his partner, Dr. Joshua Levine. I was really quite unhappy with the result I got in his care, so I cannot recommend him. I felt that he tried to cram me into his canned method, and that would be the only thing he would do, regardless of what I wanted. He didn't listen to my concerns at all, and I always had the unsettling feeling that he was not giving me the whole story. And, needless to say, the results were unacceptable. I hate to badmouth anyone, but I'm also here to help those who are looking for information.
It turns out that before I ever had cancer, I had a fairly large diastatis recti -- a separation between the two sections of the rectus abdomini muscles. This is fairly common, and had occurred during my three pregnancies, with the stretching of all those muscles, most notably with my last child, who weighed in at nearly 10 lbs. at birth. I was enormous, and looked like I was carrying twins.
The original reconstructive surgeon had assured me that he would be repairing any diastasis during the harvesting of fat (along with several other unkept promises he made), but this was apparently not done. The other issue with my belly, a possible side effect of the Diep flap procedure that I had not come across in all my research, is that many nerves that serve the abdominal muscles are cut during the harvesting of fat, even though the muscle, itself, is not touched. In a small percentage of women (my luck holding, naturally) this produces a weakening and prolapsing of the abdominal muscles. So between these two issues, I looked like I was nearly 'full-term'. Wearing normal pants has been impossible. Suspenders would probably have helped, but they are just not fashionable, ya know?
I contemplated returning to my original surgeon (Dr. Allen practice in NYC), and in fact I contacted them, and sent along a picture of my current scenario at their request. After three subsequent unreturned phone calls, I decided to go elsewhere, since I had not been happy with the first procedure anyway. I talked to my insurance company and they suggested Mass General in Boston, a hospital on my plan, and one that I already knew has a good breast cancer/reconstruction program. I looked on their site and chose Dr. Amy Colwell -- I liked her background and the fact that she had written a number of papers. She demonstrated an inquisitive mind, so I thought she might be just what I needed--and she was!
9 days ago, I went under her knife. She repaired the diastasis and put a mesh across my entire belly to bring everything into alignment again. She moved my belly button to center, and rebuilt it using stitches more on the inside of the folds, rather than around the outside of the belly button, which just doesn't look right or natural. She also resected my abdominal scar, making it into a nice 'U' shape about an inch lower than it had been. She removed as much of the patch on my left breast as she could and built me a new nipple using the scar tissue remaining on the breast. This tissue has gradually softened and some of it has reverted to normal nipple skin. So she worked with that skin, rather than using a skin flap, and we both agree that the result will look more natural. In the process, she made the breast a size smaller, in order to remove as much of the patch as she could -- nearly all of it went, with only a small strip left at the bottom of the breast. She performed liposuction on the right breast to make it match the new, smaller left one. She didn't want to do the lipo, as she feels this makes the breast flatter. But I persisted, telling her that I would prefer a slightly flatter breast to having scars on that breast, as well. We checked to see if the insurance would cover this part, which they did, and she did it for me.
Naturally, at this point I'm still in bandages, and have one drain still hanging from the abdominal scar, but I can already tell you that the result will be something I'll be happy with. Not perfect, of course, but I will feel more like myself. I had purposely gained 40 lbs. way back then to have enough belly fat to harvest, and only about 15 lbs. of this has come back off, to my continued annoyance. In the past I have always been able to take weight off relatively easily, and it has just been impossible for me this time. But I think I may have stumbled across the answer -- I am now supplementing iodine, and there is a whole lot of evidence that most of us are iodine deficient in the U.S., which prevents the thyroid from making thyroid hormone, making it difficult to lose weight. i will be writing more on this in my other blog, so check it out there.
I will likely post some before and after pictures, to show just how much can be done to make your final result acceptable after everything has gone wrong. I would like to say again that Dr. Robert Allen is an excellent surgeon and I loved his approach -- sympathetic, creative and friendly. Had I been in his care, I have no doubt that my result would have been better. But with cancer still in my breast, I felt I could not wait several months for him, and instead went to his partner, Dr. Joshua Levine. I was really quite unhappy with the result I got in his care, so I cannot recommend him. I felt that he tried to cram me into his canned method, and that would be the only thing he would do, regardless of what I wanted. He didn't listen to my concerns at all, and I always had the unsettling feeling that he was not giving me the whole story. And, needless to say, the results were unacceptable. I hate to badmouth anyone, but I'm also here to help those who are looking for information.
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