Carrie Lee, Survivor, Sarcoma Breast Cancer profile picture

Carrie Lee, Survivor, Sarcoma Breast Cancer

I am here for Friends and Networking

About Me

I was diagnosed earlier this year with a very rare form of breast cancer, called "Malignant Phyllodes", "CystoSarcoma Phyllodes", "a malignant phyllodes tumor." (If you have breast cancer, you have probably never heard of it before.) This is actually a form of sarcoma (connective tissue cancer) that happens to form in the breast. Aside from surgeries, there are no long term treatment options, as chemotherapy & radiation therapy do not work. Doctors have no clue what causes it, (but I have a few theories of my own...oh why am I not a millionaire with a labratory & tons of scientists working for me!?)Phyllodes tumors grow F'ing fast. My tumor grew from practically nothing to 8+ cm (the size of a small grapefruit) in one short month. I had NO IDEA that I had cancer, & was assured repeatedly by all of the "free mammogram" clinics that, "I was too young for breast cancer," & "TOO YOUNG for their screening programs." Because of this, & because of the size of my tumor, I actually thought that my breasts were simply getting bigger! (HOORAY, I thought!! :) "No more feeling bad about having such small boobies ever again!" Well... not so lucky after all. I had to undergo an emergency partial mastectomy to remove the cancer that had actually grown up & into my chest wall, pushing my own breast up higher. Had to have a second surgery later to remove some of my own breast tissue. THERE IS NO BREAST CANCER RESEARCH OR FUNDING GOING FOR MY TYPE OF BREAST CANCER AT ALL!!! :( I am looking for friends of all kinds to help me raise awareness to help find a cure! I am also trying to help ALL YOUNG WOMEN WHO ARE DIAGNOSED WITH CANCER UNDER THE AGE OF 40, especially without health insurance! There are many of us... My doctor first tried to send me home with a round of anti-biotics, thinking all that I had was a simple infection called Mastitis. NOT TRUE!Currently I have many chronic symptoms that are unexplained & untreatable by my "doctors" such as low WBC, low RBC, low neutrophils, shortness of breath, bone pain, severe fatigue, anemia, weight loss, nausea, swollen abdomen, hyperactive ovarian syndrome, chronic ovarian cysts, high estrogen levels, high adrenal levels, slow healing, & new vascular problems. My anemia is not the cause of my symptoms according to my oncologist, there is something else that is serious, but unexplainable, due to the lack of research on the way phyllodes transmits & presents itself. WTF!? The only thing that has helped with the nausea is medical marijuana, which I only use through a vaporizer & only need one little puff. The only things that makes me feel better are raw vegetable juicing & pharmacutical grade products, from trusted companies like Metagenics & Xymogen. I have something whacked out tripping my immune system & constantly wrecking my adrenal hormones, which I believe are what feeds phyllodes tumors to grow. I also am a clairvoyant, I talk to animals & spirit guides in my dreams (yes, this all started on its own! not from my overactive imagination), & I believe 100% in faeries, elves, natural medicine & healing herbs, stars, planets, souls, eyes, & truth. I was born on October 13th, 1980, "the day of the tough cookie" (ha! I'll say!) My background is French & Cherokee Indian, & growing up I always loved & related to movies like Steel Magnolias & Terms of Endearment, which I find really strange now given my current circumstance! I used to be very shy, would not really speak to people, etc. Now all I can think about is talking before Congress & helping as many other people & animals as I can through my voice. I wish I could feel better physically, & I wish I was running my empire of goodness & cures already! Please cherish every moment. I have lived my life this way for awhile, a lot longer than the "big C".... please use your powers for good, not for stagnation & disconnection from the universe. Our mother Earth is in trouble, please honor her & THINK about your individual impact not only on her, but to your own cells within your body. LOVE LOVE LOVE to you all, Carrie Lee My WWII veteran hero/best friend went skydiving w/ me!

My Interests

"It seems that butterflies have a rough time of their transition from caterpillars. These li'l caterpillars weave weave weave weave and end up with a cocoon all around them, in which they're able to physically transform into a butterfly. Now that's a lot of work all by itself, but the interesting part comes next: they have to get out of the cocoon. The butterfly in the cocoon has to really struggle to get out of that thing. Now, let's say you're walking through a field, and you see this cocoon. It's pretty obvious there's a butterfly in there, struggling to get out. Humanitarian that you are, you bend down and very gently open the cocoon to free the butterfly. Good deed? Nope. It seems that Nature in her wisdom has decided that the butterfly needs the struggle: the struggle itself triggers some sort of chemical process in the butterfly that allows it to live once it's out. If you free a struggling butterfly from its cocoon, you're signing it's death warrant."

I'd like to meet:

Anyone who wants to read about phyllodes tumors with me/help other girls going through similar things/whisk me away to other lands where they have different treatments for curing cancer. *CystoSarcoma Phyllodes (CSP) is a rare tumor that occurs almost exclusively in the female breast. Its name is derived from the Greek words "sarcoma", meaning fleshy tumor, and "phyllo," meaning leaf. Grossly, the tumor displays characteristics of a large Malignant Sarcoma, takes on a leaflike appearance when sectioned, and displays epithelial cystlike spaces when viewed histologically (hence the name).Pathophysiology: Phyllodes tumor is the most commonly occurring nonepithelial neoplasm of the breast but represents only about 1% of tumors in the breast. It has a sharply demarcated smooth texture and is typically freely movable. It is a relatively large tumor, and the average size is 5 cm. However, lesions more than 30 cm in size have been reported. Patients typically present with a firm, mobile, well-circumscribed, nontender breast mass. A small mass may rapidly increase in size in the few weeks before the patient seeks medical attention. Rarely do tumors involve the nipple-areola complex or ulcerate to the skin. Patients with metastases may present with symptoms such as dyspnea (shortness of breath), fatigue, and bone pain.Mortality/Morbidity: About 70% of phyllodes tumors are benign and about 30% are malignant. The benign tumors, although they will not metastasize, do have a tendency to grow aggressively and recur locally. The malignant tumors metastasize hematogenously similar to other Sarcomas. Unfortunately, the pathologic appearance does not always predict the clinical behavior, so there is always some uncertainty about the classification of some cases, as even the benign form can recur as a fully malignant tumor later on down the road, and/or metastasize.Recurrent malignant tumors seem to be more aggressive than the original tumor. There have been cases of a woman having a phyllodes tumor removed, then later on developing distant metastases, such as in the lungs, liver, heart, jaw bone, uterus, thyroid, pancreas, etc. The lungs are the most common metastatic site, followed by the skeleton, heart, and liver. Symptoms from metastatic involvement may arise from a few months to as late as 12 years after initial therapy. Malignant metastatic phyllodes tumors carry a grave prognosis. No cures for systemic metastases exist. Lab Studies: No specific hematologic tumor markers or other blood tests can be used to diagnose CSP.Histologic Findings: All CSP tumors contain a stromal component that can vary significantly in histologic appearance from one tumor to another. In general, benign CSP lesions demonstrate markedly increased numbers of regular fusiform fibroblasts in the stroma. Occasionally, highly anaplastic cells with myxoid changes are observed. A high degree of cellular atypia with increased stromal cellularity and increased mitotic count are nearly always observed in the malignant form of CSP. Ultrastructurally, nucleoli may reveal a coarsely meshed nucleolonema and abundant cisternae in the endoplasmic reticulum in both benign and malignant forms.Surgical Care: In most cases, perform wide local excision with a rim of normal tissue. The lesion should not be "shelled out" as might be done with a fibroadenoma, or the recurrence rate will be unacceptably high.If the tumor-to-breast ratio is sufficiently high to preclude a satisfactory cosmetic result by segmental excision, total mastectomy, with or without reconstruction, is an alternative.There is no proven role for adjuvant chemotherapy or radiation therapy. Response to chemotherapy and radiotherapy for recurrences and metastases has been poor, and no success with hormonal manipulation has been documented.Further Outpatient Care:Although specific guidelines regarding follow-up care for CSP are limited because of the rarity of these lesions, regular, long-term follow-up care should be performed to detect possible local recurrences. Anyone who doesn't run away when the $hit hits the fan My 7 year old dog/son, Ollie the pitbull. He's stronger & more sensitive than any other human-being I have ever met... and he smelled my breast cancer WAY before I did! Started sleeping with his head right across my chest (WEIRD) the entire time the tumor was in there. Then, the day of my surgery, he mysteriously jumped & broke his toe. So Ollie had emergency surgery the same day I did, and got to lay bandaged up with me in bed for the week, instead of being quarantined upstairs with the dog gate up. It is my hope that the horrible abuse & twisted discrimination of these amazing dogs will come to an end soon. A few of the famous people who are proud pitbull owners include: Alicia Silverstone, Micheal J. Fox, Rachel Ray, Shannon Elizabeth, Paul Sorvino, Brad Pitt, Steve Irwin (R.I.P.), The Little Rascals "Petey", Helen Keller (who lost her hearing & sight at 1 year old) owned & loved pitbulls & german shepherds. I do not own Ollie for power or for status. I love Ollie, and that's all it takes to make a good dog. Ollie loves me, and that's all it takes to make a persons soul COMPLETE. :) :)

Music:



td

Books:

Strips you right to the CORE of who you truly are....

Heroes:

"You are loving... when your own pain does not blind you to the pain of others.""A friend is someone, who upon seeing another friend in immense pain, would rather be the one experiencing the pain than to have to watch their friend suffer." -- Anon. www.youngsurvival.org"Walking with a friend in the dark is better than walking alone in the light." -- Helen Keller me, Bridget, & Court continuing the YSC conference by high-tailing it to a DC nightclub! Boing Boing! Vroom Vroom!! Annie, Stefanie, Courtney, Bridget, Jeanna, Mimi, Amy, Carrie, Liberty, Megan, Amira, Selena, Jen, Liz, Kimberly, Kris, Nancy, Stena, Brenda, Lauren, Amy, AnaMaria, Sharon, Bonita, Christina, Cindy, The singer Saroya (rest in peace), and all of my other warrior sisters & friends & family. What is Breast Cancer????Breast cancer develops when abnormal breast cells begin to grow out of control. When a group of these cells band together, they form a mass called a tumor. Benign tumors do not spread and are usually not harmful. Malignant tumors, however, spread from their sources and can grow into life-threatening cancers. When malignant cells leave the breast and invade other parts of the body — a process called metastasis — the chance of successfully treating the disease is greatly diminished. The majority of breast cancers occur in women, but men can also develop the disease. Still, breast cancer occurs almost entirely in women, and factors relating to the female body are known to affect breast cancer risk. Recent scientific studies suggest that ovarian hormones play a role in the development of breast cancer. Estrogen, a hormone produced in the ovaries, induces the sex-related changes in women's bodies, including the growth of breast cells. Elevated estrogen levels have been linked to breast cancer risk. This association is partly based on evidence that women who develop breast cancer generally have higher levels of estrogen circulating in their bloodstream than do women without breast cancer. Future studies will assess the degree to which behaviors proven to decrease the body's production of estrogen protect against breast cancer, such as eating a low-fat diet and exercising on a regular basis. Knowing about the type of cells found in breast tissue is important for understanding the differences among various types of breast cancer. The female breast is comprised of the following types of cells: Lobules: milk-producing glands; Ducts: tube-like structures that connect lobules and the nipple; Stroma: fatty tissue and ligaments that cover the ducts, lobules, blood vessels and lymphatic vessels (passageways that carry fluid containing immune cells and waste products.) Most breast lumps are benign tumors caused by changes in cysts (fluid-filled sacs found in the breast). The formation of scar tissue around sacs can form lumps, which may result in swelling of the breast, but are often not cancerous. TYPES OF BREAST CANCER: Breast cancers are often described in terms of the tissues in which they develop and the degree to which the tumors have spread. Almost all breast cancers are classified as adenocarcinomas, tumors that begin in glandular tissue.
Obispo - Ce Qu'On Voit, Allée Rimbaud
Uploaded by shrekounette Breast adenocarcinomas generally originate either in ducts (ductal carcinomas,) or in lobules (lobular carcinomas.) NON-INVASIVE BREAST CANCERS: The most common noninvasive breast cancers are ductal carcinomas in situ. In situ is a term used to describe tumors that have not spread outside their original locations. Ductal carcinomas in situ are confined to the breast ducts. Almost all women diagnosed with this nonmalignant stage of breast cancer can be cured. Lobular carcinoma in situ is not usually technically classified as a breast cancer. This early grade of tumor involves abnormal cells that do not penetrate through the walls of the lobules. Although these growths are not life-threatening, women who have them are at a greater risk of developing breast cancer in another part of the same breast or in the other breast.INVASIVE BREAST CANCERS: Approximately 80 percent of invasive breast cancers are invasive ductal carcinomas, tumors that have spread from the duct to the surrounding fatty tissue.Invasive lobular carcinomas, which start in the milk-producing glands and spread to other tissue, account for 10 to 15 percent of invasive breast cancers. These cancers are more difficult to detect using mammograms than ductal carcinomas. Five percent of invasive breast cancers are medullary carcinomas, which are characterized by a distinct boundary marked by immune cells and by larger-sized cancer cells. The chance of survival associated with medullary carcinomas is higher than for other invasive breast cancers. Other types of invasive breast cancer that occur less frequently include tubular carcinomas, inflammatory breast cancer, mucinous carcinoma (formed by mucus-producing cells,) Paget's disease of the nipple, and phyllodes tumor (made of the breast's connective tissue.) In 2005, approximately 212,930 cases of invasive breast cancer and 58,490 new cases of noninvasive breast cancer were estimated to be diagnosed in women. 40,410 women were expected to die from breast cancer in 2005.About 1,690 cases of breast cancer diagnoses in men and 460 male breast cancer deaths were expected in 2005. After increasing an average of 4 percent per year in the 1980s, breast cancer rates appear to be leveling off among white women. Breast cancer mortality rates declined between the years of 1990 and 1997, with the most dramatic drops for both white and black women. Over 75 percent of women diagnosed with breast cancer are age 50 or older. Between 5 and 10 percent of breast cancers are inherited, and breast-cancer-susceptibility genes can be inherited from either parent. The majority of women who develop breast cancer — around 80 percent — do not have a sister or mother with breast cancer. With the exception of skin cancer, breast cancer is the most common cancer among women. 97.5 percent of women who are diagnosed with breast cancer in an early stage survive at least five years. Among American women ages 30 to 69, black women have the highest breast cancer mortality rates. For women ages 70 and over, mortality rates are highest among white women. The adrenal glands convert other hormones into estrogen that is then stored in fat cells. The more fat cells — the greater amounts of estrogen, which is a major factor in post-menopausal breast cancer. Limit alcohol consumption, as regular consumption of even a few drinks per week is associated with an increased risk of breast cancer in women. Women at high risk of breast cancer may want to consider not drinking any alcohol. If you do drink alcohol, do so in moderation. Studies have shown that post-menopausal women who drink less than one drink a day can increase the risk of dying of breast cancer up to 30 percent, compared to non-drinkers. Women who are pre-menopausal should not dismiss the link between alcohol and breast cancer — alcohol intake is a strong risk factor for the disease. Chemoprevention Tamoxifen, an anti-estrogen medication that appears to block estrogen's effect on breast tissue, has been used for several years to reduce the risk of recurrence in localized breast cancer and as a treatment for advanced breast cancer. Studies have also show that women at high risk for breast cancer are less likely to develop the disease if they take tamoxifen. It is the only approved breast cancer chemopreventive and is prescribed for women at high-risk. If you have several breast cancer risk factors and are interested in learning more about chemoprevention, speak with your health care professional. Risk, medical history and age are important topics to discuss when considering chemopreventive agents. Raloxifene is another estrogen-blocker that has been shown to have protective effects against breast cancer. Scientists are currently conducting clinical trials to compare the effectiveness of raloxifene and tamoxifen in preventing breast cancer. Raloxifene is still being studied and is not yet recommended for use in reducing breast cancer unless you are participating in the clinical trials. Aromatase inhibitors, drugs that block the production of small amounts of estrogen that post-menopausal women normally make, are also being studied as breast cancer preventative agents for post-menopausal women. New studies are also underway using other drugs, including studies that have found that women who take aspirin or non-steroidal anti-inflammatory drugs, such as ibuprofen, have a lower risk of breast cancer. Healthy women with very high breast cancer risk may elect to have both breasts surgically removed in hopes of drastically lowering their chances of developing breast cancer. Women with the BRCA1 or BRCA2 genetic mutations (genetic testing is now available), previous history of breast cancer, strong family history or a history of lobular breast carcinoma might consider this type of operation after receiving a cancer risk assessment and educational counseling from their health care professional.


One day I hope that cancer, & all of the beautiful souls who are surrounded by it, will have an ending like this:
I know I am definitely trying to get to everybody to save them with all that I am!!(Did I mention I love horses!??) Please check out my other profile: "Tempered Beauty" to find out what you can do to help them..... :) :) "Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light." -Albert Schweitzer

My Blog

You are what you eat (natural foods) + Carolyne ranting

Interestingly enough, I recently began admiring red chard after being washed to the sunlight through the window.    The brilliant leaf pattern felt like some sort of ancient akashic rec...
Posted by Carrie Lee, Survivor, Sarcoma Breast Cancer on Wed, 09 Jan 2008 12:56:00 PST

My Latest Battle (a collection of journal entries from way back when.....)

December 22, 2006this new year there is a blazing battle & it’s about to rage.   First of all, the horses.   I have united my spirit with saving them, and will not close ...
Posted by Carrie Lee, Survivor, Sarcoma Breast Cancer on Fri, 21 Mar 2008 11:07:00 PST

IF YOU LIVE IN THE STATE OF MARYLAND, PLEASE READ THIS!!

Hello friends in Maryland!  I was asked by the American Cancer Society today to speak publicly before the Maryland General Assembly/Senate/Congressional committee TO TELL THEM MY STORY as a...
Posted by Carrie Lee, Survivor, Sarcoma Breast Cancer on Thu, 25 Oct 2007 08:55:00 PST

talk about busting out of your cocoon

Julius Fleischman, (my 84-year old, legally blind, WWII hero, long time family friend/mentor, "anything for a chuckle", fellow dog lover, & whom I believe was the inspiration for the movie "Secondhand...
Posted by Carrie Lee, Survivor, Sarcoma Breast Cancer on Sat, 26 May 2007 09:56:00 PST

Young Women w/ BC article w/ Bridget, Courtney, & Carolyne by Melanie Akeley (first draft)

Thank you so much for writing this Melanie!  *Carolyne Melanie Akeley 05-02-07 Breast Cancer   Breast Cancer Under 40? Try Under 25 The average woman in her early twenties is somewhere in be...
Posted by Carrie Lee, Survivor, Sarcoma Breast Cancer on Thu, 03 May 2007 05:04:00 PST

a phyllodes tumor, what the hell is this

Phyllodes TumorName  l  Define  l  Risk  l  Detect  l  Treatment  l  Stage/Grade  l  Followup  l  Mets/Recur  l  Link.. ...
Posted by Carrie Lee, Survivor, Sarcoma Breast Cancer on Sat, 17 Mar 2007 12:24:00 PST