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Kathy's Story

It all started in February 2001 when my primary physician talked me into having my first (baseline) mammogram as part of a routine checkup. I had no symptoms and never felt a need to have the test, but I agreed anyway. Within 2 days of having the mammogram, I got a call from the radiologist that I needed to come back in for another test. The following day I went back in for a diagnostic mammogram, and an ultrasound. The radiologist said I had microcalcifications in my right breast and something that looked like a benign tumor in my left breast. He recommended I have a biopsy. I was referred to a surgeon, who I saw the following week.

The surgeon recommended that I have bilateral surgical biopsy combined with lumpectomy. I agreed to this and it was scheduled for the following week. I am an optimistic person and was confident that it would not be cancer. The surgery was not too bad. The procedure prior to surgery was 'interesting' to say the least. It's called a "needle loc". It is a means of locating the tumor site by mammogram and then inserting a hollow needle with a wire in the center into the tumor. The needle is then removed and the wire remains, so that the surgeon knows where to begin removing tissue. Needle loc is done without anesthesia, and the entire process takes more than half an hour for each breast. You must keep your breast in the mammogram machine the entire time, while a radiologist readjusts the needle until it reaches the proper position. I have a high pain tolerance so I didn't find it to be terribly unbearable, but some people have great difficulty with it. I did bleed a lot during the procedure and also during surgery, largely because I take a daily aspirin and only stopped a week earlier, when my surgery was scheduled. Normally this is not a bloody procedure.

After I woke up from surgery, I was given a shot of Demerol and within an hour, released to go home with a prescription for Percocet. I felt fine, only took a few of the pain pills, and in a few days I went on a canoe trip down the Weekie Wachee River. A few days after that, I went back for the test results. Cancer. Infiltrating Ductal Carcinoma. The left breast tumor was not malignant, but the right breast tumor was. More bad news. It's important to get clean margins of 10 mm, and my lab results indicate that I did not have clean margins. So I would have to have another lumpectomy on the right side. Also, the surgeon said I would need some radiation afterward. And on top of that, he would need to remove the sentinel lymph node to see if the cancer had spread beyond the breast. He assured me that he believed I was diagnosed in the very early stages of cancer and that I would be fine. He also sent my biopsy off for more detailed tests, to determine things like ER and PR status, and S-Phase and a lot of other things I didn't understand at the time.

I was scheduled for the second surgery the following week. Just prior to surgery, I had a procedure called lymph node mapping. This takes more than an hour. It involves having radioactive dye injected into the previous incision site. In my case, there were 6 injections. Apparently these are generally pretty painful because I was not told much about this ahead of time, but as they began to break the news to me of what was about to happen, several orderlies and other assistants gathered around the bed where I was and prepared to hold me down. Not a situation you want to be in. But again, I didn't find it to be anything I couldn't deal with. In fact, the radiologist who was injecting the dye was the same one who did my needle loc two weeks before. He was a kind, gentle man, who kept apologizing to me every time he stuck a needle in me. And honestly, after the first two, I didn't really feel them because I was somewhat numb at the incision site. After the injections, I was taken to a waiting room and told to massage the injections site to help the dye circulate to the nodes. In a while I was taken to nuclear medicine, where a special camera took pictures of me. The technician told me that it's like an x-ray except safer because the radioactive dye is in me, not in the machine. (That's not comforting) She said that they take pictures frequently for over an hour, and look to see if any of my lymph nodes show up on it. The sentinel node will show up, and that's ok, but any other nodes that show up on this test indicates cancer in the nodes. After more than an hour had passed, no additional nodes had appeared, and I was taken to surgery, relieved that only one lymph node would be removed for biopsy.

I woke up from surgery in somewhat more pain this time, and although I went home within the hour, I found it necessary to take pain pills more often and longer. I believe the removal of the lymph node was more invasive and more difficult to recover from. Let's just say I was not up to any canoe trips for a few weeks.

The following week, I went back to the surgeon's office for the results. He began by saying, "Good news", it's not in the lymph nodes. Then he loaded my boat with bad news. My lab results were in. First off, he didn't get clean margins again. But he didn't think he needed to operate a second time. He said he would release me, to go on to a radiologist for radiation, which he said would be a minimum of 5 days a week for 5 weeks. And he also was going to refer me to an oncologist to discuss hormone and chemotherapy. Even though my cancer had not yet spread to the lymph nodes, it was an aggressive form of the disease. The lab results showed that it was ER+ and that was good. It means that my cancer is estrogen fed, and I could be helped by taking Tamoxifen, which blocks estrogen from feeding the cancer cells. My cancer was PR-. I haven't found out much about that, one way or another. My S-Phase was very high. He said that was not good, as it indicated a rapidly dividing cancer. The test also showed aneuploidy. That has something to do with how abnormal the DNA of the cancer cells are. Ploidy is a preferable result. My cancer cells are high grade and comedo type. And then there was the HER2 status. It was strong positive (+3). I knew nothing about that at the time, but I was soon to learn a great deal of its significance. The lab report gave my prognosis as poor. Apparently HER2+ indicates that cancer is chemotherapy resistant. It is a test for growth hormones on your cancer cells. A strong positive result is very bad. Like I said, I am an optimist, and I always believe I will be among the survivors, even if the odds are bad. In the case of HER2, I've read reports that suggest some very grim statistics. 20% to 30% of breast cancer is HER2+. One study says that the chance of surviving 3 years with HER2+ breast cancer is 30% if diagnosed in stage 1. Since the HER2 antibody has only been recently discovered and studied for a relatively short period of time, information is limited. But many researchers are convinced that HER2 status is one way to determine which cancer patients will survive and which will not. Herceptin was developed for HER2+ patients who have not responded to previous standard chemotherapy. It is only used as a last resort because the risk of heart damage from its use, combined with Adriamycin is substantial. I already have mitral valve prolapse. I didn't care for the odds. In my extremely limited research, I've met several people with HER2+ cancer who have tried conventional medicine with no success. I made a determination for myself, that radiation and chemotherapy were not a path I cared to take.

I started looking at alternative treatments as soon as I was diagnosed. I was familiar with the Hoxsey Clinic, having known some, including my father, who have been treated successfully for cancer there. But, knowing how aggressive my breast cancer was, I decided to compare it to other clinics before making any final decision. I bought Gerson's book, and I knew that his regimen was not something I could live with. A friend suggested another clinic she went to in San Diego. It involved 10 days of IV treatments and then some other things that just did not appeal to me. Some other clinics seemed similar to Hoxsey. It seems that every where I looked, I found 2 common treatments. Tonic like the Hoxsey tonic, and coffee enemas like Gerson uses extensively. I finally decided to go to the Hoxsey clinic. After all, it is the original clinic that developed the tonic everyone now tries to copy.

Although I will say that I considered going through with the radiation for a fleeting moment, I soon made a firm decision to skip all further conventional treatment. I went to Mexico, to the Bio-Medical Center (Hoxsey Clinic) at the end of March 2001. You go through a series of blood tests, urinalysis, x-rays and a physical exam by one of about 4 doctors on staff. Then all doctors confer together about all cases, and determine what treatment will be recommended. Later that day you meet with your doctor for a second time, where he prescribes your medicine and advises you on your diet program. (In some extreme cases, you may need to stay in the area for up to 10 days, but 99% of the patients are done by early afternoon.) I flew home, the next day and began my treatment on April 1, 2001.

I was prescribed Tamoxifen. The side effects were instantaneous. Major hot flashes. In my case, they did not last long. Now I occasionally have hot flashes, but nothing life altering. I also had tonic 4 times a day and numerous other pills 3 times a day. My diet is two-fold: First, it's a healthy diet, eliminating toxic food, and getting lots of nutrition instead. Therefore, no bleached sugar, or bleached flour is permitted. Fish at least once a week. Nothing from a can, limited salt intake, and only sea salt. Fresh vegetables preferred over frozen. Red meat once a week. No pork. Limited dairy products. Grape juice with no sugar added. Two cups diluted grape juice with 2 cups of spring water every day. It's a vital part of the cleansing process. Second, I cannot eat anything that will neutralize the herbal tonic that is the primary part of my treatment. That means no tomatoes, vinegar or alcohol. Not even in trace amounts. Also, because I have estrogen receptive cancer, no soy.

Additionally, I was told to rest. No exercise that would bring me to a sweat, and to limit use of my right arm (because the cancer is in the right breast) And my doctor gave me a long talk about the importance of relaxing and eliminating stress in my life.

The diet part took some getting used to. I had to keep a chart on my refrigerator to keep track of all the pills. But the first 3 months went by quickly and it was time for my checkup.

I flew back to San Diego, and went back to the clinic. They decided not to do x-rays again, since I just had them 3 months earlier. Urinalysis showed a slight bladder infection, and I was given an herbal prescription for that. Blood tests were good, but I was told I needed to return again in 3 months. I was given a refresher course in the importance of getting rid of stress. I'm a type A personality, so I was not sure I could control it. (One side point. I had discovered something called IP6 at the local GNC store. The kid behind the counter told me it was good for cancer, so I added it to my regimen around the same time I started on the Hoxsey treatment. During this checkup, I mentioned it to my doctor. She told me that I absolutely should not be taking it, as it is counterproductive to my other treatments. I did not realize that it was feeding my estrogen positive cancer. So I stopped taking it after 3 months, and am careful not to take anything else without first asking. Who knows how far I set myself back by taking IP6). Editor's Note: We have since learned that the Gerson Clinic feels that IP6 does not feed estrogen positive cancer. Additionally, IP6 has proven itself in breast cancer studies: Inositol hexaphosphate (IP6) inhibits key events of cancer metastasis: I. In vitro studies of adhesion, migration and invasion of MDA-MB 231 human breast cancer cells.

The second 3 months of treatment were quite eventful. My primary physician scheduled me for a mammogram in August. Being the optimist that I am, I expected it to show nothing. Within two days, the radiologist reported to my primary care physician here in Florida that, among other things, he saw a tumor that appeared slightly more advanced than my last mammogram. (That was disconcerting since I know I had a tumor removed) My primary doctor called me and told me the cancer was in two places now and spreading rapidly. She faxed me a copy of my report, and it was very confusing, because it seemed to say that I had 2 suspicious places in my left breast, and one place in my right breast. It unnerved me, to say the least, since I'd been on the Hoxsey treatment for almost 5 months. And I guess what really shook me up was the fact that during my exam in Mexico at the end of June, I asked if she could feel a tumor. She could not. So I was left with a dilemma. Did the doctor in Mexico miss it or did it grow rapidly in the last 7 weeks prior to the mammogram?

My Florida doctor then referred me to the [conventional] Cancer Center in Tampa [name withheld to protect the innocent and the guilty and not get sued]. I agreed to go because I wanted a second opinion about the x-ray results. I waited for 6 weeks for the Cancer Center appointment. In the meantime, I called Hoxsey clinic with the mammogram report and they made a few adjustments in my treatment regimen. I must admit that I was not feeling well at the time, kind of tired and run down. So in addition to the changes in my Hoxsey regimen, I also bought a colema board. After cleansing the colon thoroughly, I took a page out of Gerson's book and began occasional organic coffee enemas. By the time I went to [conventional] Cancer Center, I was feeling great. I picked up my entire file of mammograms to take with me to the appointment. And of course I looked at them. I saw what did appear to me to be a slight area of microcalcifications on the right side, and this was the area circled by the radiologist. And on the left side, two areas circled. One that was apparent on my baseline mammogram, and had then been dismissed as not suspicious. And a second one that had appeared since then.

The day of the appointment, after filling out an extensive medical history form, the nurse took one look at my list of vitamins and herbs, and said, "the doctor will take you off of most of this 'stuff'". That didn't set well with me. Then the doctor (a surgeon) came in. He glanced at my most recent x-rays, but didn't bother to look at any earlier films, for comparison. He did a physical exam and then told me the tumor was very large and aggressive and we needed to do something about it right away. He recommended a lumpectomy and radiation and said I needed to talk with an oncologist about chemotherapy.

I actually was there to ask about mastectomy procedures, to determine what type of reconstruction processes were available to me. I still had no intentions of taking radiation or chemo. And though I had complete faith in the alternative treatment I'd chosen, I knew I had to be realistic. And because alternative treatments take time, and also since my cancer was an aggressive type, I thought it best to at least be open to the possibility that I may be wise to have as much of the cancer surgically removed in order to buy time for my immune system to get ahead of the disease.

So when he recommended lumpectomy, I was stunned. I'm thinking to myself, I have an aggressive tumor, so fast growing that it's rarely found in stage I, and yet, after 6 months, it's still small enough that I'm a candidate for lumpectomy. I asked the doctor about mastectomy. He was professional, and as he replied to me, I sensed he was a bit irritated, but working hard to maintain a non-emotional tone. He described mastectomy with reconstruction that involved skin salvaging, tissue expanders and implants, and takes about 3 months. After he finished, I told him that I'd been reading about the TRAM flap procedure, which I believed was preferable. He said it required a 5 day hospital stay, and he didn't do that kind of surgery but would refer me to someone else if that's what I wanted. (This did not do much to endear me to him)

I then told him that I was not comfortable with radiation treatment, and had not made up my mind about mastectomy either. He made a remark like, "well you have to do something." In all fairness, I did not tell him I had selected alternative treatment. I wanted information from him, not to be judged.

I wanted to know how fast the tumor was growing. I asked him how large it was. He said he wasn't sure. I asked him how large it appeared from my mammogram. He said he couldn't tell anything from the mammogram, because it just looked like scar tissue from my last surgery. So I asked him how large it felt from the physical exam. He said he couldn't feel it. So, how could he say that it was very large and aggressive, if he couldn't see it or feel it? I came to realize that conclusion was based on the fact that I was diagnosed with an aggressive form of breast cancer in February, and I didn't have radiation, and he apparently assumed that nothing else would work to control or reduce the tumor growth. Now, I know that I can't feel the tumor, but I'm not a doctor. Yet I have been examined by numerous doctors. None of them can feel a tumor that the mammogram supposedly shows as being close to the outer surface of the right breast. That tells me what the truth really is.

I asked the surgeon what success rate his recommended treatment of radiation and chemotherapy had with my kind of cancer. He appeared annoyed with the question, and only replied that statistics do not tell us how I will react so I shouldn't worry about them. Moments later he was telling me that doctors in this country do not do lumpectomy without following up with radiation because statistics show that cancer comes back more often without radiation. So I surmise that he can use statistics to prove his points, but I am not allowed to call on statistics to back up my position. And finally, after my trying to ask him more informed questions about my type of cancer, specifically HER2+, he said, "There are a lot of people here who know a lot about cancer, and trust me, they all know more about it than you do."

I wanted to reply: "But it's my life and my body, so it's my opinion that matters and it's my decision to make" but I didn't. I got dressed and left, and hopped on a plane to California, went over the border and went through Hoxsey for my checkup on November 1, 2001.

There were 12 patients that day and I believe 8 of them were being treated for breast cancer. One was a new patient, most were diagnosed with more advanced breast cancer than I was. One of the patients was a gentleman from Australia who learned about Hoxsey treatment from the internet. And though I don't know what kind of cancer he had, he is doing very well, and said it saved his life. I do not know the HER2 status of any of the other patients. But I know that my test results were excellent and I'm happy to say that I didn't get a lecture on stress reduction and I don't have to go back for 6 months. Anyway among other things, at Hoxsey they test your blood for something called CA tumor markers. Last time my 'score' was 13. and they told me they check it to make sure it stays at least the same and hopefully goes lower each visit. Well this time my 'score' was zero. Nothing from my exam suggests that I have any tumor activity going on. And again, the doctor cannot feel the tumor.

So the next time I see my primary care physician here in Florida, I will thank her for her concern. She has agreed to monitor me here in the states, and support my decision to use alternative treatment for my cancer, even though she makes it clear she does not agree with my choice. I respect her for that. But I will have to insist she does not to refer me anywhere else for any more tests. I'm finished paying out hard-earned money to pompous doctors who do not respect my decision and go even further to insult my intelligence.

One final note. I don't presume to make life and death decisions for anyone else. Conventional treatment is not right for me. Hoxsey is. But I acknowledge it's not for everyone. If anyone is considering going to Hoxsey, I would like to add the convenience factor. I am able to go alone to the clinic. I fly from Florida to San Diego, take a cab from the airport to a hotel. I call a man named Dennis who has a business of transporting patients from a selected few hotels in San Diego to the clinic and back. Dennis picks me up at 8 AM the following day, takes me to the clinic, brings me back when I'm finished. I take a cab from the hotel back to the airport the next day. I don't have to rent a car. I don't have to worry about finding my way around, back and forth across the border. It takes the stress out of the whole episode. If anyone would like more information about it, you can email me at i12liv4evr@aol.com.


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