Archive for the ‘Prognosis’ Category

The Cost of Surviving Cancer

Thursday, May 6th, 2010
Photo: geishaboy500, Flickr

Photo: geishaboy500, Flickr

Surviving cancer is a good thing. Really, it is. I mean, look at the alternative. Still, living on and on after a cancer diagnosis comes with a little bit of a price tag.

My personal bottom line: the potential for heart disease, maybe some additional cancers and increased cancer risk for some family members. No one can promise these curses will come to life, but no one says they won’t either. And that’s why I visited today with a very nice doctor at the forward-thinking Cancer Survivor Program at Shands Hospital, to learn all about what might face me, and what I can do about it all.

My heart. In the past five years, I’ve had three treatments with the power to compromise cardiac function. There’s that toxic Adriamycin chemo drug (four doses, two weeks apart, over eight weeks time), and the radiation that zapped the area directly over my heart (every day for six weeks), and then Herceptin — the potential life-saver that sailed through my veins every three weeks over the course of one whole year. The good news is that I’m probably out of the woods with Herceptin, it usually does its damage during treatment or shortly thereafter. But the chemo drug and the radiation, these still have time, and usually, adverse reactions occur eight to ten years after chemotherapy. Enter the echocardiogram. I’ll have one in three years to start monitoring my ticker. And I’ll keep exercising and (mostly) eating right to keep in good shape. (Today’s resting heart rate: 50.)

More cancers. Sometimes leukemia comes as a side effect of chemotherapy (ironic, isn’t it?), but I’m likely beyond the risky time frame for that one. Bladder cancer isn’t entirely out of the question, however, because one of my poisonous chemo drugs was processed through my bladder, and apparently, that’s not a great thing. Skin cancer, too. My risk is higher now. Perhaps the basal cell cancer I had removed from my left arm last year can be linked to this risk. Maybe it’s just a coincidence. I should pay attention to the left side of my body, though, says my doc, because that’s where another cancer might show up.

My kids. My kiddos — both boys — are not really at risk. Of course, they can get breast cancer, it’s just not very probable. And their kids, if they have girls, are not at higher risk, either, even though their grandma (me!) had the disease. Had I tested positive for BRCA, they would have been. But I didn’t, so they aren’t.

My sister’s two girls — no one knows for sure, but they probably will be fine. Same for my mom — the risk travels mostly from older to younger, not younger to older. My sister (sorry, Tracy!) is the one who gets the short end of the stick. My having had breast cancer ups her risk, which is why she gets a mammogram every year, and why she’s already had a baseline MRI.

Am I scared by the cost of surviving cancer? No. I have every reason to believe none of this will ever affect me. And if it does, worrying about it now won’t do me a bit of good. If anything, I’m just happy to be alive and thrilled that I had the chance to sit with a doctor five years after I wasn’t sure I’d survive at all.

Zac Smith Praying to Survive

Tuesday, March 30th, 2010

Second Opinions Matter

Friday, March 19th, 2010
Photo: cjc4454, Flickr

Photo: cjc4454, Flickr

My darkest hour arrived while I was cooped up in a hospital room with chemo-induced fever and other mystery symptoms. I was bald and bloated and beyond hope when a well-respected attending oncologist swung by my room with a crowd of med students and announced it could be another cancer causing my illness. Probably leukemia or lymphoma. A bone marrow biopsy would determine my fate, this doc told me, just before he casually strolled away from my despair and moved onto his next patient.

It wasn’t a biopsy that greeted me a few days later. It was a new doc, starting a new rotation.  A second cancer wasn’t even on his radar. Rather, he was convinced my dose-dense chemo (given every two weeks instead of three) was to blame. Nothing some heavy-duty meds couldn’t fix.

A few days later, I was home, healthy, and once again, hopeful.

That was five years ago, and it was not the first time I was misguided by a well-meaning doctor, which brings me to this very important medical conclusion:

Second opinions matter.

I’m living proof.

“Survivor” Jennifer Lyon Dies of Breast Cancer

Wednesday, January 20th, 2010
http://jennlyon.com/

http://jennlyon.com/

Former “Survivor” contestant Jennifer Lyon died on Tuesday night. Breast cancer. She was 37.

And this is exactly why I can work myself into a tizzy about the disease: because very young and otherwise healthy women die from it, and since I’ve had it, and there’s a chance it will come back, it’s pretty hard to not get all worked up about it. Mostly, I have hope, though, and I’m pretty sure I will survive for the long haul. I figure if I have more hope than worry, then life will be a whole lot more fun.

More about Jennifer: According to PEOPLE.com, the reality TV star, who placed fourth on “Survivor: Palau” in 2005 and passed away in her home in Oregon, was first diagnosed with stage-three breast cancer a few months after her “Survivor” season ended. She had a modified, radical bilateral mastectomy, then chemotherapy, then she took Tamoxifen. (Tamoxifen is a drug used to prevent recurrence for those who qualify for it. I don’t.)

Jennifer apparently found something suspicious in her right breast in the summer of 2004, but she chalked it up to scar tissue related to breast implants, and she let it go — for a long time.

Don’t do that, people! Don’t let anything go — if you find something, find a doctor. Right away. Then demand a mammogram, an ultrasound, an MRI — just don’t self-diagnose. The results can be tragic.

If you can remember just one thing about breast cancer, make it this: if caught early, this disease can be stopped. It doesn’t have to grow and spread and take over other organs. Small tumors can be removed, your body can be treated, and you can survive. Really, you can. So check your breasts (forget those who tell you self-exams are unnecessary and mammograms can wait) and report anything — anything — that just doesn’t feel right.

OK?

OK.

Flashback: December 2, 2004

Wednesday, December 2nd, 2009

On Thursday, December 2, I had a radioactive dye injected into my breast. The dye slowly collected in my main lymph node, the sentinel node. During surgery, this lymph node would be blue so the doctor could easily find it and biopsy it. The biopsy would give him clues about my other lymph nodes. For the rest of this day, I was very anxious about surgery. I didn’t know what kind of prognosis I would wake up to hear and whether or not I would still have my breast.

Flashback: November 29, 2004

Sunday, November 29th, 2009

SarahMcD ?, Flickr

SarahMcD ?, Flickr

On November 29, I met with a surgeon at Shands who prepared me for my first step: surgery. He said he would remove the lump and would determine whether or not my lymph nodes were cancerous. He would check all the margins around my breast to see if any surrounding tissue was affected and would identify all the defining factors of my cancer. If he found extensive cancer, he would have to remove my breast. I had to sign a form stating that my surgery was to be a lumpectomy but could turn into a mastectomy. My surgery was scheduled for Friday of this same week.

I hate tumors

Monday, October 6th, 2008

There’s nothing fair about the way it happened, the way Amy died just 15 months after a breast cancer diagnosis seemingly similar to mine. She heard the same string of chilling words—you have cancer—as I did, just months after a doctor hurled them at me, over the phone, a day before Thanksgiving. Both in our early 30s with husbands and small children, Amy and I felt like two peas in a pod, situated in what we believed were almost identical positions. We were both young, both with early stage breast cancer. We both knew our cancers, while caught early, were considered aggressive because of our age—young women tend to have aggressive forms of the disease—but we also knew we had a high likelihood of survival, about 93% for at least five years.

Amy and I had common hopes, fears, and worries, and on several occasions we cried tears we were sure flowed from the same well. We also shared an instant urge to reach others with our breast cancer stories. Amy welcomed local newspaper reporters into her world and allowed them to capture through words and photographs her most intimate cancer moments. I began authoring my own breast cancer blog and then ventured into the world of freelance writing. We both wanted to make our experiences matter. And judging by the flood of reaction we received from our combined efforts, it’s clear we did.

Amy and I shared victories—we both managed to escape the threat of lymph node involvement—and we shared cards and e-mails. Thank you for holding my hand through this journey—it would have been pretty lonely without you, Amy wrote in one e-mail.

Amy and I also shared care packages, family photos, even hats. If misery loves company, then Amy and I were in love. And in celebration of our love, we basked in the glory of our most important similarity—our cancers had not spread. This was key to our survival. Or so we thought.

A mutual friend—her high school buddy and my college roommate—matched Amy and me. Ericha was one of a few close friends who after my diagnosis offered to hop on a plane and come to my rescue in Florida. I never accepted her offer—I was sure I could handle cancer all on my own—and so she stayed in Ohio where Amy, also an Ohio girl, welcomed her assistance. It worked out well this way.

Ericha helped Amy as she recovered from surgery, reconstruction, chemotherapy, and countless physical and emotional twists. She watched Amy’s kids—ages four and one at the time—and cleaned her house and drove her to appointments and selflessly assumed some of the burden drowning this young wife and mother who continued working as a nurse while managing a life with cancer.

“I quit my job,” Amy told me just after she announced her cancer had returned. She said she should have quit after her first diagnosis. She should have taken better care of herself. She should have played with her children, spent time with her husband, given up the chore of work. She would do it right this time, she said. She would crush cancer. She was sure if it.

I wrote and published a post about Amy on The Cancer Blog just after she told me how cancer had shown up in her brain and lungs, just five months after her chemotherapy for breast cancer ended. I wrote about my shattered hope, my fear this would happen to me, my complete and total sadness. And then Amy left a comment on my post. She wrote:

Jacki, I am not giving up. I will beat this again. Don’t you give up yet. I have Luke and Ella and they alone are worth fighting for. Just everyone send me your prayers and positive vibes. Quoting the cancer crusade couple, “Setbacks are a chance to pause and review the lesson of life.”

Amy, the one staring down death—doctors said she had two to 12 months to live—was comforting me. Amy, with her spunk and spirit, convinced me she would annihilate this evil disease. I believed her.

Amy lived for only five weeks after she wrote these words. Ericha called me with the news of her death just as I was leaving my house one Saturday morning to run in a race. I stopped in my tracks when Ericha told me—Amy passed yesterday—and I felt nothing but shock and sorrow for the duration of the run I struggled to finish. I finished for Amy, though. If she could fight cancer—twice—then I could surely pound out a few miles in honor of a friend whose face I never did see.

Amy and I talked about meeting at the beach with our families one day after we’d survived cancer for a few years. We dreamed of going on the Oprah show and proudly announcing our survivorship. We talked about a lot in our short 15-month friendship. What we didn’t talk about was that our situations really were very different. Perhaps we weren’t aware of it at the time. Perhaps we subconsciously chose to find common ground in the midst of our harrowing journeys, to ignore the fact that we were not traveling the same path at all.

Amy had a family history of breast cancer. I did not. Just after Amy completed her chemotherapy, her mother was diagnosed with the same disease that now has affected four generations in her family. Additionally, Amy’s tumor was slightly larger than mine, she received a different chemotherapy protocol than I received, she was not eligible for a year-long drug treatment I accepted to keep cancer at bay and because she had chosen the radical route of removing both of her breasts—I had a lumpectomy—Amy was not a top candidate for the radiation therapy that zapped me five days per week for seven weeks. She wondered if she should have demanded this treatment. She wondered if it would have made a difference in her survival.

The final and perhaps most significant difference in our diseases is that while Amy’s cancer, like mine, had not spread to her lymph nodes, it had found a way to penetrate her bloodstream and was spreading in a secret, silent, and deadly fashion. My oncologist, who dried my tears when I sobbed about the unfairness of Amy’s death, said some young women have a very aggressive disease right away. Amy was one of these women. I, apparently, am not.

There’s nothing fair about the way it happened, how Amy died just 15 months after a breast cancer diagnosis I have now survived for almost four years, how Amy died so quickly and I didn’t, how there is no cure for this mysterious disease that strikes far too many women and some men too.

Amy’s husband sent me an e-mail just after she died. He wrote:

You were a great inspiration to Amy. Your quote ” Fight the Good Fight” was front and center on our fridge. Please don’t let this news get you down, Amy would want your chin up, would want you to keep fighting. Thanks for all your support.

My chin is up. I am fighting. And Amy—thank you for your support.

The learning never ends

Wednesday, January 12th, 2005

Some days I think I know all about my breast cancer. Then I read or hear something that prompts me to ask more questions. Today I learned that I am HER2/neu positive. That has something to do with the protein found in my lump. Because I am positive, I may have to take a drug called Herceptin to reduce my chances of recurrence. I also found out that I have a score of 7 on the Bloom Richardson scale. This refers to the features of the lump. A low score would indicate a not-so-odd lump and a high score might reveal a bizarre lump with aggressive tendencies. My score falls right in the middle. I also know now that my chest x-ray was normal (no spread of cancer to the chest) and so was my heart test.

Today I also talked to someone about genetic counseling. I shared all kinds of family information and will meet with a counselor in March. At this point I can elect to have blood tests to determine if I carry a gene for breast cancer. My mom and sister can also be tested to see if they carry the gene.

Tomorrow I will go learn about chemotherapy specifics and about the port placement. The port will be placed in my chest on Friday at 8:00 am. Then I will await chemo which will begin sometime next week.

Jacki Donaldson

The beginning

Tuesday, December 21st, 2004

My breasts have been a problem for a long time. For years, they were too big. I was a 34 DDD and hid them with tight fitting bras and under big shirts. So I had them reduced and lost 4 pounds of tissue. I am now a 34 C, which is much more manageable. But the surgery left me with scars, loss of sensitivity, and an inability to breastfeed my babies. This has not been a big deal to me, just life circumstances and I’ve adjusted to them. And now I’m on to another life circumstance with these problem breasts. I have breast cancer.

On November 16, 2004, I felt a lump in my left breast while taking a shower. I have always been aware of what my breasts feel like. I have a lot of dense tissue, so dense that the surgeon who performed my breast reduction had trouble separating the tissue to take some out and leave some in. My breasts always seem lumpy to me and I never knew if I’d be able to tell the difference between normal and abnormal tissue. Four years ago I had a mammogram because of something I felt. It all turned out fine. It was just the dense tissue. All of my annual GYN visits have revealed nothing abnormal. But I’ve always been aware and curious which is why I found something in the shower. I knew it was not normal. It was hard and felt like a small green pea. It moved around and for the first few days, I had a hard time locating it. Once I became obsessed with it, I could find it immediately.

I went to my OB/GYN on November 18. My doctor felt the lump but was confident it was nothing to worry about. It moved around easily, there was no discharge from my nipple, I did not feel any pain: all signs that it was benign. But it’s routine to get a mammogram for any mass so I got one the next day.

I was the youngest person waiting to get my mammogram, another sign that this lump was nothing serious because it is not common for young women to have breast cancer. Mammograms are not even recommended for women under the age of 40. I am 34.

The mammogram films looked OK, and the technician told me the doctor would talk to me but that she was not worried about anything. This was true but she did an ultrasound anyway to look further at the lump. She determined it was not a cyst, which is fairly common, and nothing serious. It could be a fibroma (a common growth that can be removed or left in place without harm) or it could be cancer. She said she wanted me to have the lump removed. She wanted it out and in a jar, she said. I asked her if it could be cancer and she said it could be.

On November 23, I had a biopsy. A large needle was placed in my breast and a piece of the lump was pulled out. The surgeon had a hard time getting a piece, however, because it moved around so much. He said this was a good sign, the movement. He sent the tissue to pathology and told me to call his office the next afternoon for the results.

The next day, November 24 and the day before Thanksgiving, my phone rang at 10:00 AM and the doctor who did the biopsy said the pathology report was back already. He said that unfortunately, cancer cells were found. He said I would need a lumpectomy (surgery to remove the lump), radiation, and possibly chemotherapy. He told me to buy a book called Dr. Susan Love’s Breast Book. I got the book that day.

Somehow, I made it though the Thanksgiving weekend, with my thoughts jumping from the hope that this would turn out OK to the fear that I would not see my boys grow up. My mind wandered and worried about surgery and what treatments I would have. I wondered if I could have more kids and whether or not I would lose my hair. I cried and lost sleep and was hopeful too. I learned a lot from reading my new book. I learned that many women do go on to have kids after cancer but I also learned that chemotherapy in young women could cause early menopause. I learned that I have an 85% survival rate and also that I will get tiny little tattoos surrounding my breast to aid in the proper delivery of radiation. These permanent tattoos will also alert any future doctors that my breast has had radiation because I can never have it again in that same area. The book helped me feel positive about this journey but it also helped me face reality.

On November 29, I met with a surgeon at Shands who prepared me for my first step: surgery. He said he would remove the lump and would determine whether or not my lymph nodes were cancerous. He would check all the margins around my breast to see if any surrounding tissue was affected and would identify all the defining factors of my cancer. If he found extensive cancer, he would have to remove my breast. I had to sign a form stating that my surgery was to be a lumpectomy but could turn into a mastectomy. My surgery was scheduled for Friday of this same week.

On Thursday, December 2, I had a radioactive dye injected into my breast. The dye slowly collected in my main lymph node, the sentinel node. During surgery, this lymph node would be blue so the doctor could easily find it and biopsy it. The biopsy would give him clues about my other lymph nodes. For the rest of this day, I was very anxious about surgery. I didn’t know what kind of prognosis I would wake up to hear and whether or not I would still have my breast.

lumpectomyI do have my breast. And I have a fairly good prognosis. My lump was removed and measured 1.1 cm, which is small. My lymph nodes were negative for cancer, although four were removed for biopsy purposes. My margins were clear, and there was no apparent spread of cancer. My cancer is considered stage 1. And that is good. I have two incisions, one in my armpit where lymph nodes were taken and one underneath it, on the side of my breast. They are both about 3.5 inches long. Besides a bad skin reaction to the tape I was bandaged with, everything went well. There are minor inconveniences right now. As my incisions heal and my skin tightens, it’s harder to lift my arm. So I have exercises I must do each day. Because of the missing lymph nodes, I may have trouble with swelling in my arm so I have to watch for that. I have not been able to shave my armpit since my surgery on December 3.

And now I await the next step in this battle. I will begin receiving chemotherapy in mid-January. This will last for three months. I will go for treatment four times, once every three weeks and will have a combination of drugs sent through my body via IV. The purpose of chemo is to kill rapidly growing cells, and cancer cells are rapidly growing. Unfortunately, all rapidly growing cells are killed, like hair cells and bone marrow cells. The chemo should kill any cancer cells that floated away from my breast, if any did. I don’t know how I will react to this process, as each person responds differently. At the very least, I hear I will be tired at times during each three-week time frame. I may also be tired from the radiation. This will begin three weeks after chemo ends.

I will receive radiation every day for 6 weeks. The purpose of radiation is to zap the actual area where the cancer was found to prevent it from recurring. Many women take a drug after chemo and radiation to prevent recurrences. The drug (usually tamoxifen) is taken for five years. My body will not respond to this type of drug due to negative estrogen receptors (if they are positive, the drug can be taken) so chemo and radiation will be my only two real treatments.

For now, I am trying to keep life simple. Joey and Danny help me do that. Joey knows I am frequently going to the doctor for a “boo-boo” I had in my “booby” and he has been very attentive. One day after a doctor appointment, he said, “Mommy, you need to go home and rest. I’ll bring you a banana.” He is almost four years old. Danny, at 19 months, does not seem to know anything is going on and it’s my hope that he never has any recollection of this path our lives are taking. I will never forget it, though, and that’s OK. I will take this experience and make it matter. A friend sent me a breast cancer bracelet inscribed with trust your journey. I do. I trust that I will be fine in the end. And I trust that I was given this fight so I can help others. That is why I have written this. I hope everyone who reads about my journey is affected in some way. Perhaps it will increase the amount of women who do self-exams. Maybe it will arm others with information to help loved ones who are affected by this common disease (about 1 in 8 women will get breast cancer at some time in their lives). Maybe it will spread hope. At the very least, writing helps me. And for now, that is enough.

Jacki Donaldson