You all know that one of the key storylines in Face the Sun revolves around Kathy being misdiagnosed because she's. "too young to get breast cancer."
Equally important to me is that it is the first feature film to look closely at breast cancer and its impact on families. Cancer doesn't strike in isolation. Everyone around the patient is impacted as well. And we want this story to highlight that.
Here'es where you come in. We want to know if the story we're telling is unique, or if the experience of Kathy Anderson mirrors that of other women around the world. We need you to tell us your stories. Please include things like; how old were you when you were first diagnosed? Did you discover it yourself? How did your doctor/the medical profession respond? How did your family and friends deal with the diagnosis? What types of treatments did you persue?
Please also add anything else that you think might be helpful in making sure this story is told the way it needs to be told -- with as much dignity and courage as the families who confront the illness everyday demonstrate. We owe them that.
Mike
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13 comments:
I live in Calgary, Alberta, Canada. I will say something about the first time I was treated, my doctor thought I was a hypochondriac because I went in about every two weeks saying I was nauseated. He wrote it off as pregnancy blues. He did however have me in the surgeon's office very quickly (3 days) and the surgeon had me in the hospital in 10 days. Then I had a biopsy(where they came after and told me it was nothing and then came back the next day and told me it was the rarest kind of breast cancer and that neither doctor had ever seen it before) and then 4 days later a partial mastectomy. Needless to say when the results came back, my doctor apologized and asked me if I would be willing to counsel young girls who had an early cancer diagnosis. I told him yes and have counseled or helped about 40 girls since then. So when it came up this time, he didn't even hesitate, he immediately gave me a referral for an ultrasound and mammy. That's where the hold up was. It took me three months to get in there. But when I did get in, the radiologist told me that nite that it was cancer. The next morning I called my doctor, he had me in at 10:00, got me into the surgeon by 11:00, who then got me into a great mammy place and they did a core biopsy by 2:30. Then it was off to the plastic surgeon at 4:00. All in ONE day! (the mammy place owed my doctor a favor!) Now I'm in a research group,(thank God) my drugs that I am required to take cost close to $8,000 a month, almost all covered due to the research group. There's a lot of costs that people aren't aware of. In April of last year, I went and got a prosthesis and that was $600.00. I cried that day because for the first time in 26 years, my boobs were the same size. Go ahead and post my story, if it gets one person to donate, it will be worth it. Please also encourage them to do self checks. That's why i'm alive today. Thanks again, Sue Hodgson
I am so happy to learn of the plans for a film on the emotional impact of breast cancer – on both the patient and the family and friends. I am also delighted to learn that it is a BC based initiative, hopefully with a wide base of support in other provinces and countries.
My doctor found a small lump in my right breast a little over five years ago. Since that time I have had five surgeries, three (out of the recommended six) rounds of chemotherapy, two full rounds of radiation, and three different medications. I go back to see my oncologist in less than a week at which time I plan to tell her that, unless she has a specific new diagnosis and treatment to recommend, I prefer that she just says “keep in touch – I’m here if something comes up.” At the time of my last appointment I was on the brink of a nervous breakdown and am now back on anti-depressants (having been off them for about six months) and feeling like my old self again.
I agree completely with the premise of the film – that the emotional drain of cancer is much worse than the physical. Did I really worry and stress myself into getting cancer by not being more firm about my wishes, my boundaries? Or was it something I ate, or didn’t eat, or drink, or breathe? Could I have prevented it or was it inevitable? I’ll never know. I certainly realize that “all our days are numbered but we just don’t know what that number is” and I’m trying to live my life as fully, fairly and honestly as I can, being aware of the need for the right mixture of sleep, exercise, proper food, and activities that bring joy. I hope I can keep this feeling and outlook for as long as I live. I certainly hope that will be many years after your film comes out. Please keep me on your contact list.
Barbara Clague
Vancouver, B.C.
I'm a 30 years old mother of 2, just 2 months after finishing treatment for breast cancer.I noticed a lump just after my daughter was born and went to my doctor. He sent me for an ultrasound and they said it was normal for breastfeeding mothers. 6 months later I went back and said that the lumps have definitely grown and there are more. Again another ultrasound and I was told that it was just hardened breastmilk. I insisted in seeing a specialist and by the time I finally saw her I had an 11 cm tumour. I had to stop breastfeeding cold turkey and I was in chemo within the same week. The tumour was too big too operate on so I had to shrink it.It was quite the whirlwind. They really rushed me in at that point.Chemo was truly the worst thing I've ever gone through in my life although it went relatively quickly now that I look back at it. After chemo I had both breasts removed (which I was glad to see them go, they caused me enough grief)it also turned out that I had cancer in both breasts. After the surgery they told me that I had 21 cancerous lymph knodes removed, so the chance that it had spread were quite high (80%). So they gave me a ct scan and found a lession on my spine that wasn't there in my last scan. My oncologist then told me it was stage 4 and that I would not be able to be cured from breast cancer. I asked her how long can someone live with bone mets and she said that the average person lives 2-3 years. The truth is, I didn't get mad about my mis-diagnosis untill that point. Would things be different if I started treatment 7 months earlier when I first noticed the lump? I cried for a couple of days and then something inside me changed. And I decided "If I really only do have a couple of years, I'm not going to waste them feeling sorry for myself, especially now since I feel healthy. I'll save it for when I'm not feeling well" And then I became, for the first time in my life, trully happy. Funny, how that happened.
Then a medical miracle happened. I was sent to a bone specialist for a clinical trial for a bone drug and he told me "I know they said that the lession is too small to biopsy but my radiologist thinks he may be able to do it and then you can be a part of this other study I have and we'll be able to see what treatment will be better for you." I said "Maybe the biopsy will come out negative". He said "It's nice you're being so positive but it's highly unlikely"
Well, they got the biopsy and It came back negative!!!! Life sure changes after an experience like that. I've never been happier, I've never loved my life so much. Now I finished my radiation and I've taken some controll over my body by changing to a strict macrobiotic diet and I feel really healthy, no one would ever know I was a cancer patient. And I intend to beat the odds and stick around for a long time!
Thank you for making a movie like this,
Danielle Lee
I know that technically, this is supposed to be for survivors, but my mother was diagnosed with breast cancer about two months ago. At first they said that they would be able to get all the cancer with a lumpectomy. Well then, a week later the doctor said that they would have to do a partial mastectomy to get rid of it. All the while, they were telling her that she wouldn't have to go through kemo. Well, the day of her mastectomy came and they decided to take a node out from her armpit and they told her that the discomfort and pain could be taken care of by tylenol or a generic over the counter pain killer. That was completely false. she was admitted to the hospital and was sent home the next day. She was fine for the first month, she made it through the first kemo without any problems. her blood count was good and we all thought that she was out of the woods. Well all of a sudden, last week, she comes down with a staf infection and was admitted to the hospital and was there for about 5 or 6 days. her doctors did absolutly nothing to make her somewhat comfortable. She finally walked out of the hospital and found a new plastic surgeon. The man is wonderful. he gave her everything she needed to get feeling better right away and she is doing wonderfully. well other than the fact that she can't have an implant put in anymore because of the other surgeon. but you know, she is still a whole woman. and a trooper. i don't know what i would do without my mother. If you don't post this story, that is fine. But I think it is a story that needs to be told. No matter what happens, it will be ok. I want every woman to know that getting a yearly is the best thing to do. i am young and after i found out about my mother, i went to my doctor and told her that i wanted one. It is something that needs to be done. Muriah Mikolajczak
I am in the States and was very excited to hear about your movie. I was diagnosed last year at the age of 35. The first doctor that I visited for a completely inverted nipple told me not to worry about it, cut my caffiene and take a vitamin! My gut told me something was wrong and three months later I went to another doctor and learned that I have Stage III lobular and ductal breast cancer. Since then I have been an advicate for young women (U40) to listen to their bodies because they know it better than anyone else. Hopefully, my life and story will help save another.
Ok Mike here is my story. I was 32 and a mom of 3. Kayla 12 who is autistic and has many many disabilities, Kristina 7, and my baby Aidan who was not even 2 at the time. It was June and we were finalizing our plans for Disney World. My husbands company was sending us because he had a job down there so we were all excited. I just happen to be talking on the phone with my best friend who was talking about self breast exams and how she always does them and for some reason it just prompted me to feel around just causually while I was on the phone with her. It was then I felt it. Upper left breast, soar, tender to the touch and pretty big. Thinking it was nothing I called my Doctor and of course they got me right in. She felt around and said yes there is something there but if its soar and not really a lump - its more like a mass than I wouldnt be to concerned. However, I am going to schedual you for a mam and an ultrasound. Go on your vacation and when you come back go to your appointment and we will take it from there.
We came home from a wonderful vacation. All expenses paid, kids were good we had a blast. I went to my mamagram a week later. I was called in so many times so that they could get closer and better images. It was so painful. I am not a small breasted girl so my dd's were going threw hell at this point. Next was the ultrasound, same thing the tech called the dr in and they looked and looked at it. Needless to say I was sent home still thinking it was just some sort of "mass". 1 Hour after I arrive home, my OBGYN calls. They want me to see a surgen. So I make the appt to see the surgen. He talks to my husband and myself about all sort of things it could be and how statistically he thought my age and because I have no family history that it prob wasnt cancer but he wanted to do a surgical biopsy take a bulk of tissue and that way we would know for sure. 4 days later July 3rd I am in the or having my biopsy. I knew then. I was under but not under enough not to hear the dr tell the nurse "look at all that white matter". I knew what that meant but still held out hope. I waited threw the july 4th holiday and called the following day not thinking the results would be in but I was anxious. No not yet the nurse said but she would cal me if they did. hours later the phone rings and its the Surgen. I am sorry - its cancer. I was frozen. I started to rock back an fourth like I used to as a child. Its cancer? Dr. Bently, I have 3 kids....what does this mean? I am only 32? My dad was just diagnosed in Feb with stomach cancer I cant possably have it too. I have to take care of my parents. I had just lost my uncle, my fathers brother, to cancer in June so cancer was like this dark cloud over us. Then I ask, what stage is it Dr Bently? a small pause..."it looks like a stage 3". We will know more when pathology comes back. Didnt take long. He was right. Stage 3 advanced invasive ductal carcinoma. grade 3+ which is the worst and also HER 2 positive. It was all such a nightmare. Next thing I know I am having PET scans, MRI's, CAT scans. chest x-rays, Bone scans and last? a Port-a-cath put in for Chemo. My oncologists plan of attack was to shrink the 7+ tumor down with 4 cycles of systemic chemo and have a lumpectomy with lymphnode dissection because 5 were suspicious than radiation to follow.We went to at least 3 different hospitals for opinions. We didnt doubt I had it, we just wanted to know how the other dr's would attack this cancer. 10 days after my diagnoses I was in for my first chemo. My poor children. They were scared. They new their grandfather had it, they new their uncle just died from it so they were so scared I was going to leave them. In the midst of all this I was told to see a genetics counsler to talk about weather or not to be tested for the BRCA 1 & 2 genes. We decided that yes it was a good Idea to find this out. Not just for me but for my children. I tested positive. I carry the BRCA 1 gene which makes my chances of reccurance higher not only for breast cancer but ovarian as well. When my 4 cycles were done, I went in for a double mastectomy with expanders put in for reconstruction. I have to say, our community was wonderful. They even threw us a benefit in february to raise money for me and my dad. they cooked for us and just really made us feel like they were all here for us. I grew up in this little town of plaistow NH so we are known to everyone. My Oncologist is wonderful and takes great care of me. after my mastectomy's, I had one problem after another with the expanders. My left side wasnt healing and I ended up with a horrible staph infection which landed me in the hospital for 6 days. 2 of which were in ICU. My poor kids had to watch as mommy was taking out to an ambulance and wisked off to the hospital because I was going into shock. My daughter Kayla, who has Autism has taken this very hard. It has effected her whole year. I hate to see her fall back so much after having come so far. My Kristina is ok, she is very needy and always wants my attention but at age 7 that is typical. My son thankfully hasnt got a clue. Just that the dd's that used to feed him are now gone along with my long hair. I have done pretty well with chemo. Nothing to horrible. The staph infection had me the most scared. I am still waiting for the rest of reconstruction which had to be put off because of the infection. I am now on this new drug Herceptin. I will need to be on this for at least a year they say. 3 of my nodes came back positive so there is no telling what might be hiding in my body. My best friends daughter and her dance class performed and dedicated a dance to me at this years recital. It was so beautiful. I have 1 or 2 pics on my page. Still havent figured out how to copy it onto myspace so people can watch it. it is so beautiful. there costumes have ribbons on them! I have been in awe over how the community has taking such an interest in us. My children had a special visit from santa this year and were given so many presents form all sorts of places. Church, Fire Department, Lions Club, the school my kids go to, the school my mom works at! It was amazing. Unfortunately my father passed away June 11th 2007. He was buried on his 62 birthday. His last 8 weeks were spent here in my house. This is the house I grew up in, the house he made for us so it was fitting to have him here for his last few weeks. It was the most profound experience in my life and the most emotionaly damaging. I love my dad and was so glad to be able to help take care of him but at the same time watching some one die of cancer when you have cancer is just awful. Now we are just trying to go on day by day. trying to take care of my kids and my mom. My husband has been wonderful. its been difficult for him. I have an awful body image and do not want to be touched. I am supposed to be in my prime. Like everything else though, we will get threw it. I have more information on my myspace page if your interested in learning more.
Thanks for reading! Emily Gelinas
Emjgelinas@comcast.net
myspace.com/emjvallettagelinas
my story
I Just had a baby on February 7,2006
Carson Tyler Healey
At my sixth week post part um appointment the Dr. found a lump about 2cm in size at the top of my left breast. She told me to have it checked some time that month but I have Four kids and worked full time and I put it off until August of 2006.
I went back to the Dr. and they set me up for a biopsy.
The dreaded word Cancer.
They called it pregnancy associated breast cancer.
IDC with Lymph vascular Invasions
ER-PR+HER2+ this is the hormones in my body that make my cancer grow.
TREATMENT :
I stated Chemo. October 12,2006 every 2 week for 16 weeks and herseptin for 1 year.
February 28,2007 I had my first lumpactomy
March 14,2007 I had to have a 2nd lumpectomy because the pathology report said I sill had some positive cells in two quadrants. Then another lumpectomy on March. 23,2007. Third times a charm and now my Pathology report is negative.
I will do radiation soon after I heal up from the hole that is still in my breast and that will be an everyday treatment for about six weeks. I still haven't done radiation I see him next week
Amanda
How old were you when you were first diagnosed?:
I was "officially" diagnosed at 27 (in November 2006); however, I first found my lump when I had just turned 26 (in April 2005).
Did you discover it yourself?:
Yes, I did, and to be honest, I rarely performed any self breast examination. I just happened to have my hand on my breast for whatever reason when I felt the lump. I remember I was sitting on the living room couch; my fiancee was nearby watching TV, and I asked him if he could feel it, and he confirmed there was indeed a lump.
How did your doctor/the medical profession respond?:
Well, I had no health insurance at the time (I didn't even have a doctor), so I had to go to the local "low income" clinic to get the lump looked at. They scheduled my appointment for almost a month after I called -- so it was late May/early June when I went in to meet a very nice female doctor. Despite her kind demeanor, she was definitely from the "you're too young to have cancer" school. In fact, that day I also asked her about a 'varicosity' on my leg, and she seemed much more concerned with that than with the breast lump. She said that my tumor was "probably a fibroadenoma." She did refer me for an ultrasound "just in case." However, for a variety of reasons (fear, lack of insurance, wanting to trust her diagnosis of a benign fibroadenoma) I pushed the referral to the back of my mind -- and put the paper away -- planning to go back to it later, if necessary.
Well, I managed to forget about the lump for awhile, but six months or so later I noticed that it seemed a little bigger. Around this time, I tried to call about getting that ultrasound, but my doctor also forgot to mention that the referral was only good for a month. I would have to go back to the doctor to get another referral. I probably should have done that then, but for almost a year I kept putting it off -- for a variety of reasons, including, again, fear, lack of money, plus I was honestly convinced that it was something benign. My lump fit all the characteristics of a fibroadenoma (it moved around easily under my skin, it sometimes hurt -- which I heard cancer DIDN'T). It did keep getting bigger and bigger, but researching online I discovered there was such thing as a "giant fibroadenoma" and I thought that was probably what I had.
Finally, in October of 2006, I called the clinic again -- at this point, the lump was very much VISIBLE (my skin had a purplish tint where the tumor was). The doctor was able to see me much sooner this time; and now she seemed MUCH more concerned, although she STILL said that her "gut feeling" told her it "wasn't cancer" because that was "so uncommon" in women my age. Still, she decided to skip the ultrasound and referred me for a biopsy. She also helped me get connected with a local program called Project Access, which helps people like me who don't have insurance.
Through Project Access, I connected with a local surgeon and on November 7, 2006, I went to see him for my biopsy. On this particular day, I was more concerned about the procedure itself than whatever results it might bring (I had a real fear of needles and had read horror stories about the "core biopsy"). I remember lying there, freaking out about the thought of a needle being jammed in my boob. The surgeon took one look at my lump and summoned his nurse -- he started asking her if I was too young to qualify for this "breast and cervical program" -- this scared me even more (why did I NEED such a program?!) I asked the surgeon, "What do you think this is?!" and he said point-blank, "I think it's a breast cancer." That scared me a little, but honestly I was still more concerned about how much the biopsy would hurt!
It actually turned out to be no big deal. By the end of the appointment, the surgeon had added that my lump could also be a (still serious, yet benign) Phyllodes Tumor. My sister was with me, and we left thinking optimistically, although I think a part of me knew by then that it was cancer.
Three days later, I went back to the surgeon's office and he confirmed the malignancy. I felt both panicked and disconnected from his diagnosis. It didn't seem quite realistic, it was more like watching some Lifetime movie. Anyway my surgeon was great about getting me connected with that Breast & Cervical Program (which in turn led me to DSHS/Medicaid). I just had to sign some papers, and so far they have paid for virtually all my treatment which is fortunate because my income is very ... meager.:-)
He also connected me with an oncologist -- on the very afternoon I was diagnosed, I found myself in the oncologist's office, discussing chemo and getting my blood drawn...
gotta take a break since I'm getting off work but I'll continue soon...
Tammy, Olympia, Wash.
Most doctors (since my diagnosis) don't say much about my age, although I get the occasional "You're so young!" For awhile, I was my (original) oncologists' youngest patient, but later I learned he was treating a 22 year old woman with breast cancer.
(I ended up switching oncologists in May.)
How did your family and friends deal with the diagnosis?:
I've been very lucky. Obviously most people were stunned, but I've been blessed with a LOT of support! Particularly from family members and from my fiancee -- my parents, two of my sisters, and my fiancee were all there with me when I was diagnosed. On the day they told me I had to have another biopsy to see if there was cancer in my other breast (fortunately, that turned out negative!) my fiancee was there holding my hand, and on the other side was my mother was rubbing my feet, and honestly I think there was so much love present in that room that I didn't feel the biopsy needle AT ALL!! Months later, on the day of my surgery, again I had both parents, my fiancee, two of my sisters, plus my fiancee's parents and his uncle all there with me.
Besides not having insurance, I don't have a car, so when my original oncologist put me on a schedule of chemo once per week and neupogen shots every day (meaning I had to be at the hospital EVERY day for a good three months) my fiancee and mother made sure I had a ride to all the appointments -- whether it was one of them, my aunt, my fiancee's parents and aunt and uncle, and family friends.
My other sister, who couldn't be there on my surgery or day of diagnosis, well, she started this thing she calls "Project Morale" where she writes to actors, musicians, etc. and tells them about my diagnosis and asks THEM to wish me well. The response has been great -- I've had calls from some of them, lots of email, cards and presents in the mail -- Walton Goggins from "The Shield" and one of the members of Erasure even sent flowers.:-)
As for friends, I'm actually one of those people who has a few close friends and many many acquaintances. Most people that I know wished me well -- some of them did the "let me know if you need anything" and then I never heard from them again thing, but no one I was particularly close to did that.
I'm definitely impressed by the community of breast cancer survivors right here on MySpace and meeting some of these women has helped a LOT, including a woman who just happens to live in my town (we met on MySpace but had chemo and shots together a few times)... she's one of the most inspiring survivors I've encountered and has been particularly helpful.
What types of treatments did you persue?:
I just kind of let my doctors decide that. For the most part my treatment has been fairly traditional, although a little unusual -- I had six months of weekly "neoadjuvant" chemo to shrink the tumor (three months of weekly low-dosage Adriamycin with daily Cytoxan pills, then three months of weekly Taxol). I questioned this treatment MANY times when I was in the middle of it, but in the end it proved successful .. I was able to have a lumpectomy in June rather than mastectomy. Also, the lower dosages meant I did not get nearly as sick as many women do (though I certainly felt 'off' my fair share, I was able to keep working through treatment).
After my lumpectomy, it was time for "adjuvant" chemo, which I'm currently in the middle of, and which I also get on a weekly basis (Vinorelbine, Methotrexate, and 5-fu). I have eight more sessions left, then finally I will start radiation. Because I'm Estrogen Positive, I will have to take Tamoxifen for five years after that.
By the way, I'm Her-2 negative. My stage (which oddly, I didn't find out until after my surgery) was IIB, and my grade was 1. My lymph nodes and margins were clear -- considering the size my tumor reached and the length of time it was inside me, I think I was pretty lucky in the long run!
Hope all of that helped. If it wasn't long enough ;)... feel free to ask anything else, and I also have (even more lengthy) blogs dating back to November on my profile.
Tammy
(p.s. I forgot to say, in regards to the treatment question, that part of me wants/wanted to try a more holistic approach, rather than standard treatment, but I'm also a little afraid of that -- that it won't work -- plus I'm a bit fearful that my fairly conservative family would freak out ... although in the end I have no doubt that if I really wanted to go that way I would, despite what others might think. I'm definitely not opposed to a mix of "standard" AND "holistic" treatment and might go that way if I can ever find out more solid information about the latter.)
Tammy, Olympia Wash.
My name is Pam Hart am a 6 year survivor of breast cancer, but more importantly, I am an activist in the battle to fight a disease that affects 1 in 8 women in America.
It was while relaxing with my cat during an evening in the winter of 2001 that I experienced severe, unexpected pain when my pet cat crawled up onto my chest for her regular head scratching. Earlier that month, I had received the results of a mammogram that had taken a month before the results of that mammogram were negative, leaving me what would turn out to be a false sense of security. At the advice of my doctor I made an appointment with a surgeon who recommended an immediate biopsy. It was then that I was informed that I had a massive tumor in my left breast that was flattened into the wall of my chest, making detection almost impossible*. The results of the biopsy would reveal the worst: the tumor was malignant. Because of the nature of my disease, I opted to undergo a radical, bi-lateral mastectomy and lymph node removal under my left arm. The surgery and biopsy of the actual mass would later reveal the seriousness of my disease: stage III breast cancer. With reconstruction immediately afterward.
After months of aggressive chemotherapy and radiation, I began the slow road to recovery that nearly every cancer survivor experiences intense pain, emotional turmoil, nausea, weakness, infection, baldness, edema, and more. But as the days, months and years would pass, every day represented a day of diminishing side effects, improved physical and emotional strength, and the hope of long-term survivorship.
Today, I continue my role as wife, mother of two children, as well as a team member of the City of Corona Relay for Life, and the owner/operator of a small business called FlutterbyCaps.com
Now that goes well beyond surviving that's FLOURISHING!
A portion of the proceeds from the sale of every FlutterbyCaps item is donated to the American Cancer Society to help fund research to defeat all types of cancer.
Thank you, and blessings to our survivor friends!
- Pam
*Although my mammogram failed to detect my cancer, I still encourage all women to undergo a mammogram with their regular check up - it could save your life.
Continue the fight and support cancer awareness!!
Pam, Corona, Cal.
When you are going through the cancer treatments and
struggles of being sick and tired, you think you are the only person in the
world that is going through this. Then one day you find that so many other
women that are experiencing the same thing you are and you dont feel so
alone.
I have been dealing with breast cancer my whole life. My Great-Great
Grandmother, Great Grandmother, Grandmother, Aunt, mom, and now myself, have
all had breast cancer.
Getting Breast Cancer was always in the back of my mind....I just never
thought it would be when I was 25. It was a very hard thing for me to deal
with. Not only was I pretty young, I had just gotten married, I had to get
both of my breasts removed, and there is a possibility that we will not be
able to have children. What a way to start a life together. I felt like a
cheated my husband. He didnt sign up for this. We were suppose to be happy
newlyweds, buying a house and starting a family, not this.
I worked the whole time I was getting treatments...Not because I wanted to,
because I had to. Your bills dont go away just because you have cancer. I
was so sick, but I kept pushing through. That was the dumbest thing I
could've done. I ended up in the hospital for a week, with tons of IV's
going into my body and a blood transfusion. It was tough but it was
probably the best thing that could've happened to me.
While I was laying in the hospital bed I realized my bills can wait. The
bill collector can come take me away, at least I will still be here for him
to take!! Then I started noticing how much money I have given to different
cancer foundations and never saw a penny of it stay in the community. I
have done walks in my hometown (Watertown South Dakota) in Minneapolis, and
in Chicago and have raised thousands of dollars for these events. Now that
I am struggling to pay my bills where is all of this money at?? Now dont
get me wrong... Most of these foundations give their money to research and
WE NEED THAT, but we also need to help the cancer patient. So I started
talking to my Chemo nurse and we decided to start a non profit organization
for Cancer patients in our area. It is called Codington County Cares. It
has been amazing!!! What we do is help with immediate issues, like paying
for prescriptions, getting them a gas card to get to their treatments,
utility bills, groceries, glasses for their kids if the parent is too sick
to work, and so on. We have helped so many people, I am so proud of this
accomplishment!! It has been a lot of work but it has all been worth it!!
Im sure you feel the same way about your project!!
I am all better now and I will be going to San Francisco at the end of the
month for reconstruction surgery!! I am very excited and very scared!! But
I am very stubborn and if I have made it this far, nothing can slow me
down!!
So, if you happen to think of me on Aug. 30th please say a little prayer for
me, I can always use an extra prayer!! Oh... by the way, I heard about you
from the hope 4 hooters myspace page. I am on their friends list if you
ever want to look me up!!
Please let me know if there is anything I can do for you to help get the
word out about your movie. I am so excited to see it!!!
Thanks again for all of your hard work!!
Tori Simon
Watertown SD
I am a 54 year old woman, whose mother had breast cancer and lived after early detection and a mastectomy, and grandmother died of breast cancer when I was a teenager. I have always been aware (and somewhat) worried that my time would come as well. I had a baseline mammogram at 35, and have had one each year since. Four times my films have been suspicious resulting in biopsies but always with good outcomes. Three months after my last mammogram my left nipple began to bleed profusely, and the fear of what this "probably" meant overwhelmed me. My mother's had been found due to bleeding from the nipple. I now was no stranger to cancer - as in March 2003 my husband of 36 years had been diagnosed with lymphocytic lymphoma, and has been undergoing chemo for 3 years. I made up my mind I too could live with cancer, and this time had a lumpectomy to remove a very large "mass". Prior to my surgery however, being the woman that I am, I wanted to make a 3 dimensional cast of my breasts to "remember" them by. My husband and I cast my chest in plaster, three days before my surgery. My dear friend Jan, took my cast to "decorate" it so I would have a lovely piece of art, that would hopefully lift my spirits as I awaited the results, to see if further surgery would be needed. I'm most happy to say that the pathology reports came back as benign, although both my doctor and my surgeon truly felt we were dealing with ductal carcinoma.
After my ordeal I started an organization in Tulsa called Breast Impressions. My original and continued goal of our group is to donate breast casting kits for free to any woman recently diagnosed with breast cancer who might want to make a "lasting memory" of her chest prior to surgery. But it's grown also into casting survivors, family members of those lost to or living with cancer, and now we turn those casts into beautiful art by local talented artists, and hold an auction to sell them and donate the funds to our local breast health programs.
I am sharing this story only to point out that no matter who you are, with or without family history, early detection is SO important! As we've cast women - young and old this year for our project, I have been amazed at how many women truly did NOT know how to do breast self exams. This has been a wonderful opportunity to educate younger women, and remind older women the importance of having their annual mammogram. Breast Cancer affects EVERYONE - not just the patient, but their family and friends and has an impact on society.
I applaud Mike and the makers of Face the Sun for bringing to focus the impact breast cancer has.
I actually had my first mammogram at the ripe old age of 18. It was very hard for me to get my first mammogram, the hospital didn't really think I was old enough to have one. You may be wondering why on earth I wanted to have a mammogram then in the first place, it is very strange I know. Well, my mother died from breast cancer at the very young age of 31 (I was 13). She was 27 when she was diagnosed and by that point, the cancer was so involved, not much could be done for her.
Well, I had my second mammogram at 20. I had a great primary care physician, and he was more than willing to order the mammogram for me. Just like the first and as expected, this mammogram was fine also.
In January or February of 1998 (I was 21), I found a lump in my right breast. I called my doctor and asked him to order me another mammogram. He did so. The technologist could feel the lump as well, but nothing showed up on the mammograms, so the Radiologist who was reading the films told me to have an ultrasound of the breast. Of course I did. During the ultrasound, the technologist would feel the lump and put the thing wand on it, but nothing ever showed up. Eventually, the lump disappeared.
In July 1998 (still 21), I was taking a shower and doing my monthly self breast exam (its very easy to do in the shower if you're all soapy) and I found another lump. I can't remember if it was in the same place or not, but it scared me of course. I called the doctor immediately. This time I saw him before he ordered another mammogram. He told me he was ordering a mammogram and an ultrasound for me and this time he didn't care if nothing showed up, I needed to see a surgeon.
I had the mammogram and ultrasound in early August 1998. Nothing showed up on the mammogram, but this time, there was a cyst on the ultrasound. Still, that's not a very significant finding and I was told to do it all again in six months. But I had an appointment with Dr. G, my surgeon.
I happened to know the surgeon that I was referred to. At the time I was working for the hospital that all of this was done in. I talked to him a little at work and told him that I would be seeing him in his office soon and told him why. At the office, he reviewed all my films, studies, and reports. He felt the cyst and gave me a choice. He told me that if I didn't have such a strong family history, that he would recommend just watching it to see what it did, but because of my mother, he would do a biopsy if that's what I wanted...it was!
I went to Short Stay Surgery on August 25, 1998, for my biopsy. Of course I don't remember anything about it, I was completely knocked out, but my family had talked with the doctor. He had told them that it didn't look very good, but that he wouldn't know definitely until the following day.
On August 26, 1998, I went about my day as usual. The two differences was this was my 22nd birthday and the pathology report would be back. By about 10:00 AM I was a nervous wreck and called the doctor myself, I had to know. I told the receptionist who I was and she told me to hold on. The doctor's nurse C came to the phone and I told her who I was and what I needed, she told me to hold on. There was a long pause, probably not nearly as long as I remember it being, but it was then that I knew. When the doctor got to the phone, he really didn't need to tell me, but he did anyway. It was malignant. The exact report said "infiltrating lobular carcinoma." He asked if I wanted to come to the office and I said no, not yet. I tried to stick out the day at the office, I'm kinda stubborn sometimes and I love my job, but the office manager told me I really needed to go home. When I got home, I called the doctor back, yes, I did want to come into the office, we had some plans to make.
In his office I cried of course. It had gotten me! There was no more worry of when the cancer would strike, it was here, and I was ready to fight it! Automatically, we knew I would be losing the right breast, the question was did I want to just biopsy the left breast or have it removed at the same time. I didn't hesitate one bit, I told the doctor I wanted them both removed, I didn't want to take the chance of the cancer coming back later on in the left breast. Surgery was planned for August 30, 1998, because he wanted to make sure I was ready, I wanted it done as soon as he could do it.
I took a long, hot bubble bath the night of August 29, 1998. I stared in the mirror at my naked breasts. I really don't know how to put into words what I was thinking that night, all I did was look at me; my appearance was going to change so drastically. I'd been pretty well endowed and it was going to all be gone. It was a sacrifice I was willing to make though.
The surgery was on August 30, 1998, as I've already noted. Again, I don't remember anything about it, out like a light again. I woke up in a hospital room this time though, this wasn't a short stay visit, I had to stay a couple nights this time. I don't remember what day the pathology came back, but the cancer was everywhere in the right breast, and it had gone to 10 of the 12 lymph nodes that had been removed on the right. The only good news we had was that the left breast had escaped the cancer, there was none found anywhere in it. Dr. G told me he would be sending an oncologist to see me, Dr. P. Dr. P came to visit me while I was still in the hospital to discuss treatment.
Dr. P discussed options of chemotherapy with me. She also told me that due to my age that stem cell transplant might be a very good procedure for me to go through. (Note: This was prior to research that came out stating that stem cell transplants were inconclusive with breast cancer.) I visited Duke University to discuss stem cell transplant at their facility, I really liked the doctors and nurses there so I decided that's where I would have that done (more on that in a bit). Dr. P and Dr. R (my doctor at Duke) decided on a course of 4 rounds of Adriamycin and Cytoxan chemotherapy at home and then I would go to Duke following my completion of that.
I got very lucky during those four rounds of chemo, I never vomited once! I was pretty nauseous most of the time, but I never got completely sick! Like a lot of people who go through chemotherapy, I lost my hair. I thought that I was going to get to keep it, it didn't fall out till about three weeks after first treatment. But the day it started coming out was probably the hardest day for me emotionally in all I've been through before then and after. I had never cared much for my hair prior to that, but I cried and cried the day it started falling out. I called my hair stylist from work and she told me to come in when I could and we'd shave my head. I finally got used to being bald, actually, it was pretty cool sometimes. It also taught me a lot about other people and what they think of your appearance. I knew who my friends were by who didn't mind being seen with me. Try dating when you're bald, that's tough let me tell you!!
I made it through all four rounds of chemo right before Christmas 1998 and my hair started growing back in. It would be January 1999, soon and that was when I would be going to Duke.
I don't know the exact date I got to Duke or any of the exact dates of what went on while I was there, but this is the best I can remember.
For the first week I was there, I was given shots on a daily basis so my body would start producing more stem cells. They were three shots into my belly, luckily that didn't hurt at all. I also had a Hickman catheter put into my chest. For those of you who don't know what that is, you're lucky! It is a tube that goes into your chest and into one of the main veins coming out of your heart, the good thing about this is you don't get stuck with needles all the time, the bad thing about this is germs.
My second week there, I was hooked up to a machine and for five days, my blood was taken out, filtered, divided into waste, stem cells and white blood cells, and red blood cells with the waste being discarded of course, the stem cells and white blood cells being frozen, and the red blood cells put back into my body. I had a couple days of freedom after this before I had to go into the hospital.
The hospital rooms for stem cell patients are different from other rooms in the Medical Center. They are designed to keep all germs out. Everything that could possibly be needed in a medical situation is in each room. A nurse sits outside of your window constantly while you're there monitoring you. No one except you can eat in your room or go to the bathroom in there. This was going to be my home for 4 or 5 days (I still don't remember) and they told me I wouldn't really know what was going on. I had two episodes that I remember and I am very glad those are the only two that I remember, otherwise I don't think I would have survived. You are given chemo for 3 or 4 days, pretty high doses. My family says I vomited constantly, like I said before, I don't remember. The 4th or 5th day, I was given BCNU, it's a very toxic chemo drug and my family wasn't even allowed to visit while it was being infused. I do remember one thing about that day, crying in the nurse's arms begging her to stop the infusion.
Recovery time in my opinion was slow, in Duke's opinion, I was a miracle child. Like I said before, I'm pretty stubborn and I don't like lying around sick. You go back to the bone marrow (stem cell) clinic on the first day after you get out of the hospital. It is on this day that you are reinfused with all those little cells that they took away from you a couple of weeks before. The interesting part about this is that the stuff that the cells are frozen in causes you to smell like oysters for days, my family couldn't stand to be around me I smelled so bad, but luckily, I couldn't smell it. I don't know how many days status post reinfusion it was before I went home, but it was very short compared to the other patients there.
I was told by Duke that I could return to work in six months, well, you know me, I was back in six weeks. I couldn't stand to be away. Granted I didn't work a full load for awhile, I was back and that helped me get better quicker I think.
The last portion of my treatment was yet to come. I had to have 6 1/2 weeks of radiation therapy. That was not too bad, I did really well until about the 6th week when my skin burned from the radiation. Still, it was very easy compared to everything I had already been through. Next step, RECONSTRUCTION!!!!
July 13, 1999, I went into surgery with no breasts and a chubby tummy. I came out of surgery with two lumps for breasts and the flattest abdomen I have ever seen! I had what was called a tram flap surgery in which the tissue or fat from the abdomen is used to construct breasts. The doctor still had to do some contouring and put the nipple on, but for the first time in nearly a year, I could fill out a blouse without having to use my fake ones. I was very proud the day I donated my breast prostheses, I hope that they help some woman feel better about herself, I know they did for me when I first got them. After several reconstruction surgeries, including the requirement for a saline implant, I finally have breasts.
Side effects of treatments have been difficult. At 24 I had to have both of my hips replaced, and my knees in the following two years. Luckily though, I’m still alive and fighting. Hopefully someone is inspired by my story.
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