breast cancer patient Archives

Tag Archive for: breast cancer patient

Triple-Negative Breast Cancer: Sharon’s Clinical Trial Profile

August 30, 2021/in BC CT Profiles, BC CT Profiles, BC Newly Diagnosed, BC Treatment & Clinical Trials, BC Video ND, BC Video TC, Breast Cancer, Breast Cancer Programs, Patient Stories, Women Patient Stories /by Kara Rayburn

Triple-Negative Breast Cancer: Sharon’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Breast cancer patient Sharon was diagnosed with triple-negative invasive lobular carcinoma after she found a lump after working out. Watch as she shares her breast cancer journey through two stages along with treatment – and what she learned and experienced with clinical trials and her advice to other patients. In Sharon’s words, “I do think that patients should be given all of their options upfront. I don’t think that clinical trials should be the last resort.”

Transcript:

Sharon:

I found a lump after I had been working out. I kind of blew it off, I thought it was a muscle strain. I kind of went about two to three weeks just icing it. I asked my mom a couple of questions like, “Hey, have you ever had this type of pain?” She’s not an avid exercise individual, so she had no clue what I was talking about. It had become unbearable. My right breast, it became swollen. It was extremely swollen, red, very, very firm, and I knew that I needed to go into the doctor to see what was happening. So I visited my PCP, from there, I was told to get a mammogram, it was authorized. After that, I needed to have the tissue sampled to determine what the problem was. So, I received the phone call at work, and it was very disturbing, very distraught, I had found out that I was triple-negative breast cancer stage III at the time. From there, I immediately went into chemotherapy that included 16 sessions of chemotherapy followed by a right mastectomy. I opted for reconstruction. At the time of reconstruction, we went in and decided that we would do an expander, and that lasted about six weeks. Then I developed a staph infection, so the expander needed to be removed, so that was before I had a chance to receive my post-mastectomy scans.

So there was a large time frame which I was not having chemotherapy, and I had not received my scans. I was diagnosed in May of 2020 with stage IV. The cancer had metastasized to my liver, spine, and bones. Then the new care plan was to be placed back on chemotherapy, a different regimen, something a little bit stronger, since triple-negative is one of the strongest types of breast cancer.

I felt like I did not have any additional options. I had tried what my oncologist deemed to be the most effective chemotherapy at the time. I was doing research in terms of holistic healing, different I guess, vitamins, fruits and vegetables, or changing my eating habits, removing sugar. So all of the life hacks that you kind of Google yourself which is something people should not do, so I tried that approach. And my oncologist said, “We might need to look into clinical trials.” It was definitely something that I did not hear throughout the initial process, which was kind of a bummer that that information wasn’t provided. I definitely think that my decision-making process would have been a little different had I known about them. So, we had tried all of the chemo therapies that we could, all the targeted therapies, and I am triple-negative, so none of my receptors allowed me to do the oral chemo or any of the hormone therapy. So I couldn’t do that. And so the option they tried for chemotherapy that was being tested was given, was provided, and I did a little bit of research on my own. I asked around in different support groups that I attend to see if anyone had heard of this trial drug. And from there, I decided that since the other options were not going to work with the type of cancer that I had then the clinical trial might have been the next best option.

I just recently celebrated one full year of living with stage IV… And I guess that’s a big to-do, because the scary stats online, they say that once your cancer has metastasized, you typically have 12 to 18 months of life expectancy. So, I’m passing that mark, I’m doing well. I am currently on a new chemotherapy regimen, and I have chemotherapy two to three times a month with a couple of breaks in between. I’m definitely a breast cancer advocate. I like to share my story to encourage others. I know it can be very overwhelming to kind of live with this disease every day, along with the anxieties that come with it.

I was not familiar with clinical trials, I have had three oncologists, and I did not hear about them until my third oncologist, which is very scary. I do think that patients should be given all of their options up front. I don’t think that clinical trials should be the last resort. I think that patients should have…kind of be empowered to make the decision as for them, and the option for clinical trials should be shared. They should be a part of the care plan if the patient decides that it’s the best thing for them. I decided that it was best for me because there were not many…there were limited options available for me. And I think that had I been given the information earlier, I would have done some additional research to see what other people have been doing and are doing in terms of research, especially as it relates to clinical trials. One of the questions that I asked during the initial process was, “Were there other women of color on this particular trial, and have they seen success?” And unfortunately, I was the first person in my area on the clinical trial that was a person of color, so I had not known about them previously.

It was beneficial for me to be a part of the trial. The trial was not a success for me, but I did read research where the trial drug actually worked for others.

I would advise for patients to ask doctors for the information and do additional research on their own, it’s okay to seek guidance. It is also okay for patients to search for support groups, ask within the support groups if these clinical trials have been done in other areas. If the clinical trial has seen success, if there are women of color on those clinical trials, it is important to know as much as you can about the drug. Patients should ask, “What are the side effects? What is the efficacy of the drug? How is the data from the drug used? Is your information going to remain anonymous?” There are a number of reasons patients should advocate for themselves as well as doing their own research, although your nurse practitioner or oncologist may go through the documentation with you, that it’s a lot to process at the time, you should ask for time to review the documents with your family or whoever helps you make decisions, I would also advise patients not to feel pressure to sign the waiver or the information packet the same day. Definitely take some time to read it, do your own research, ask other people who have been on the trial or ask other patients who have been in your shoes previously. I spoke with a number of women who hadn’t completed the clinical trial that I completed, but they had worked on clinical trials in the past.

They shared with me the side effects that they experienced as well as some of the remedies that they use to counteract those side effects. They also share with me their experience with their oncologist or with their care team. So I had a very, very helpful care team. They walked through the release waiver with me. I also spent some time with my family, spent some time with my religious leader, as well as some of my breast cancer buddies, is what I like to call them, to make sure that I was making decisions for me, opposed to being pressured to sign on the same day that you received the release. And then lastly, I would just say really meditate and ask yourself, “Is this something that needs to be done, or is this something that needs to be added to my care plan to make sure that I have the best quality of life?”

I would just like to let everyone know that clinical trials are not approved drugs, but with the help of other women of color who have been left out previously, we can… Or we can ensure that other women of color who are battling cancer and have a better chance. So I joined a clinical trial to make sure that I can help someone who will experience the same exact situation, and hopefully there will be additional drugs created or approved within the next 10 years to help someone else. Being stage IV is more than a notion, but I’m excited that I’m a part of history. So that clinical trial that I participated in did not work for me, but the information that was gathered would hopefully help them improve the drug.

Triple-Negative Breast Cancer: Stacy’s Clinical Trial Profile

August 4, 2021/in BC CT Profiles, BC CT Profiles, BC Newly Diagnosed, BC Treatment & Clinical Trials, BC Video ND, BC Video TC, Breast Cancer, Breast Cancer Programs, Patient Stories, Women Patient Stories /by Kara Rayburn

Triple-Negative Breast Cancer: Stacy’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Triple-negative breast cancer patient Stacy was diagnosed by a breast cancer surgeon she works with. Watch as she shares her journey through diagnosis, her decision to join a clinical trial, her experience with treatment, and her current feelings about clinical trials.

Transcript:

Stacy:

I was diagnosed by a medical provider that I work for, she’s a breast surgeon, and once I was diagnosed, because I’m in the environment of breast surgeons and breast multi-discipline providers, my care was probably handled a little differently. So, I was referred to an oncologist who then introduced me to the clinical, the breast clinical trial that was available. I actually didn’t have a lot of questions except for will it help others? And he said it would, it’s for triple-negative diagnosed patients. The trial is an additional drug that helps with the triple-negative, and it has been provided by the FDA. So, because of that, I was willing to do it. My only pushback was that the treatment was every week compared to it being every two weeks or three weeks. The first phase…for me was…I had no problems with it. Actually, after treatment, I was up for 48 hours, which allowed me to do a lot of things – house work, part-time job, working remotely, it just afforded me things that I would not be able to do for being tired.

I always have had my screens, and I’ve had diagnostic mammograms and they always came back normal, so negative. And this particular time, I had Dr. Hampton to just look at it, it just felt like a cyst. I wasn’t really concerned with it. So Dr. Hampton did look at it, we thought initially that it was a cyst and not infected, but two weeks later that what felt soft then became very hard and round, oval-shaped. I was just…in two weeks, it was already hard. So I said, okay, so I had her to look at it again, and from there she said, You need to have this worked up.” And then from there, I went and had another diagnostic mammogram, and the next day I was scheduled for a biopsy by the top radiologist. And he said, “Stacy, I think that you need to have an MRI.”

Right, and so I had an MRI, had a CAT scan, all that was done within two weeks, and they tell me that I had cancer. Dr. Hampton…this is kind of funny because the staff scheduled my appointment, as I am the manager of the breast center. They scheduled my appointment. I met with her, and she let me know that I was triple-negative and that it would require chemo as well as radiation and surgery. The following week, I was scheduled for chemo.

Once I spoke with the oncologist, he said he employed me to look up the trial, and it would be beneficial to others. I initially was not that excited about the trial, I reached out to others who were triple-negative here in our office to ask and what they thought about it. One of the patients/friend, she already knew of the trials, she gave me three different trials that were going on right now. And one of them happened to be the one that he suggested that I should participate in, and she just basically said we would be helping…that I will be helping others to participate in it. So I thought about it for about two or three days, and then I decided to participate in it. Now initially, I wasn’t so keen on it, but after hearing about helping others and that it was mostly, I was told that it was almost like a miracle, medicine that helped triple-negative. And I decided to do it.

During my trial, the lump that I felt once I started on a trial treatment in three weeks, the lump was gone. And each week it wasn’t completely, but it reduced itself in three weeks. And as I continue with the treatment, we couldn’t feel it. I had my provider that I was seeing, the oncologist, and each week it was almost like it was gone, it was totally amazing because prior to that, it probably…it felt like the size of maybe a large, grape, but it just in three weeks, it was totally a big difference. So, I know that the trial is good. It has to be because in three weeks or something that I’m thinking probably grew in six weeks, whereas I was able to feel it, I couldn’t feel it anymore, and that three to four, it was gone.

So prior to being diagnosed, there were a multitude of things that I did not know. Working for a breast surgeon, where we see those patients and then becoming one of those diagnosed patients are totally two different things. What I thought I knew, it became apparent that I didn’t know, and there were things like the metallic taste that you have in your mouth, you can no longer use metals, anything, utensils…you have to use plasticware. The neuropathy that you feel in your hands, it’s hard to pick up anything that’s metal, the feeling just kind of goes through your hand, that means keys, that’s a door knob, you just have to kind of suck it up and do what you have to. The tiredness, but they don’t let you know that you’ll feel exhausted. That’s totally different from tired. So once you’re diagnosed, you have to see a multitude of providers, specialists, you have imaging that’s done, and the team that I have had done most of that for me, so I have a great support team.

Life today is, I have my up and down days, for the most part, my days are good. Once I have my treatment, my first phase went so well, I wasn’t tired. I was still doing things that I normally do with the exception that I had gained a lot of weight. So my second trial started about four weeks ago, and it hit me very hard, I was so exhausted, I have never in my life been that exhausted, that…taking two steps, and I felt like I had ran a marathon. With me being so independent and knowing or wanting to be around my team, I forced myself to come into work, and the second trial also brought on bone pain, muscle pain, headaches, and again, I was just totally exhausted from it.

What you have experienced or endured at the time, during a clinical trial and expressing it, it can only help the next person. But, in essence, I think the clinical trial is not in that only to help someone else, but it’s also to help you…I think the knowledge of just knowing that you’re a part of something that could be enhanced or approved or just help you with your health is a plus. So, working with a breast surgeon and working with multi-discipline providers that’s on the team, oncology radiology, technologist, and seeing the impact that it has on patients, I wanted to participate in the trial because again, I knew that it would help people. So just being a part of that environment definitely impacted my decision in participating in the trial. With the scientific studies that they have out there with the trial, it can only make the research for us better.

Patient Profile: A Follow Up with Meredith Cronin

January 2, 2019/in Patient Stories, PEN Blog, Women Patient Stories /by Jennifer Lessinger

Meredith Cronin

Breast Cancer

You may remember Meredith Cronin from our three-part breast cancer series in October. She shared her experience of being diagnosed with and treated for breast cancer seven years ago at the age of 37. She had three young children at the time and remembered being grateful that she was so busy with her family that she didn’t have time to become weighed down by her illness. “Attitude is everything,” she told us. Meredith wanted as much time as possible with her family so she did everything she could to combat the cancer and make sure it wouldn’t come back. She had a double mastectomy, she did chemotherapy and radiation, and she got a second opinion from a research hospital. When her treatments wrapped up, her doctors told her they didn’t expect her back. She was cancer free.

Coincidentally, the same week Meredith shared her story, she had surgery to investigate a lump she’d found under her arm. The lump was malignant. Her cancer came back. Needless to say, her doctors were all very surprised. The lump was in a tricky area near blood vessels, nerves, and scar tissue. She had a second surgery to make sure the margins were clean and then she began, what will ultimately be, 30 radiation treatments. The radiation is precautionary and preventive. “The doctor says I’m cancer free at this time,” she says, but Meredith and her doctors want to be sure the cancer is gone for good this time and doesn’t come back again. She goes for treatment every day and twice on Fridays so she can have it finished by the end of this month.

Despite the intense radiation, Meredith says she is feeling good. She doesn’t have a lot of fatigue and her skin is holding up. Her two youngest children have even been able to come to treatments with her. She says it helps them to see that she’s okay so they feel better about what’s going on. Her recurrence was pretty upsetting for all of them, but they’ve been able to keep a positive perspective. She says her husband summed it up pretty well when he said, “The short term sucks, but the long term looks good.” And, so far the kids all seem to be focusing on the long term and supporting their mom. “They like to wear their pink,” says Meredith.

Much like her first round with cancer, Meredith is being thorough and aggressive in her treatments. In addition to radiation, she is eating well and working out every day. This week, she is going to a research hospital for a second opinion on whether or not she should add more therapies to her current treatment. “The second opinion is more about doing chemo or if they have another suggestion,” says Meredith. Her doctors now aren’t recommending chemotherapy due to the risks associated with it. Long term effects of chemotherapy can include lung, heart and kidney problems as well as the risk of developing a second cancer.

Meredith has also started taking injections to force menopause as another preventive step. Once in menopause, she’s able to take a more effective medication than the one she has been taking. She says she doesn’t know what to expect from menopause, but she’s willing to do whatever she has to in order to keep the cancer from coming back. She’ll do the injections until maybe spring 2019 when she’ll have a hysterectomy and possibly an oophorectomy, where both ovaries are removed. That’s always been part of her preventive plan someday. “I’ve been putting it off for years,” she says. “I’m kind of kicking myself now.”

Vigilance about staying on top of your health is the message that Meredith most wants to share. Even when you’ve been told you’re cancer free, you have to check out every lump, every change that comes along. “Stay on top of it. Keep following up with it,” she says. Meredith says she’s learned that even though her cancer is gone, she still has a lot to do to make sure it stays that way. She’s cancer free, but not necessarily free from cancer. “I’m just going to keep doing what needs to be done,” she says.

You can find the three part series on breast cancer featuring Meredith and five other women on the Patient Empowerment Network blog: Part I, Part II, and Part III.

Jennifer Lessinger

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.

Patient Profiles: Breast Cancer Part III

October 26, 2018/in BC Blog ND, BC Blog T, BC Blog TC, BC Blog WN, BC Blog WPS, Breast Cancer, Patient Stories, PEN Blog, Women Patient Stories /by Jennifer Lessinger

This is the last installment in our three-part series profiling breast cancer survivors. In Part II, the women gave insight into the importance of their mental health and their own attitude as critical components of care. They also shared some of the ways in which they coped with cancer. Today, the women talk about the possibility of recurrence. So, we pick up with the final stage of Shannon’s preventive measures. Based on her history, she knows her cancer can come back, but she wanted to do everything she could to prevent it.

Shannon’s treatment didn’t stop at reconstruction. She opted to have an oophorectomy, which meant she had her ovaries and fallopian tubes removed. Remember, her moms’s cancer had returned and been terminal, so Shannon wanted to take every preventive measure she could. “My fear and my worry is that hers came back 16 years later and she died at 65. If the same thing happened to me, I would die before I’m 60,” says Shannon. Her breast cancer diagnosis meant she was at higher risk for female cancers and she wanted to do whatever she could to have as much time as she could. “I’m relatively young,” she says. “I wanted to give myself as long as I could.” In order to have the procedure, Shannon had to take medication that would put her into menopause and the side effects that came with menopause affect her quality of life, so she says she goes back and forth on whether or not she would do the oophorectomy, if she had it to do all over again.

Although she did have melanoma a couple of years ago, Tina has been 27 years without recurrence of breast cancer. “I didn’t really feel safe until five years out,” she says, but adds that you never really know if it’s coming back, and that you should always be vigilant about checking for lumps. There is a risk of late recurrence, i.e. breast cancer that comes back more than five years after diagnosis and treatment, and it is more likely if it was later stage when first diagnosed, and if the cancer was HR positive.

Like Tina, Betty also had a second cancer. Her colon cancer was discovered in 2009 and her doctor estimated that it had been growing for ten years, but because of where it was growing in relation to the colon wall, the tumor was able to be cleanly removed and no treatment was required. Because her breast cancer was ductal and not in the tissue, and her doctor was able to get very clean margins, Betty says she doesn’t worry about it returning. “I’m more afraid of the colon cancer returning,” she says.

Diana has been nine years without recurrence, but she says, “My guard is always up.” Maybe it’s because her mother and grandmother both had breast cancer, and, despite being BRCA negative, she believes her cancer is hereditary. Shannon feels the same way and says she believes 100 percent that her cancer is genetic. The genetic testing available is limited compared to the number of genes in the human body so, Shannon says, “There’s a long way to go.” And, while it’s early for Shannon to think about recurrence, she can’t help but consider it. “I don’t want to spend every day thinking about cancer. I don’t want that to be my life,” she says, “but it is in the back of my head.” Not knowing how the cancer might come back makes Shannon especially uneasy because she doesn’t have a plan for it.

When Meredith finished treatment, her doctor said he didn’t expect to see her back for recurrence. The odds were in her favor that she would remain cancer free. Meredith, like Betty, says she got the best cancer to get if you’re going to get cancer, but unlike the other ladies, Meredith was not expecting to get cancer. She didn’t have the same family history. Her only red flag was that she had an aunt that had ovarian cancer and she thought maybe her grandmother had breast cancer when she was 90. Meredith was young, she had three small children, and breast cancer was not on her mind. In fact, she was so sure she didn’t have it, that she took her 18-month-old daughter with her when she got the results from her lumpectomy. But, Meredith, who is also BRCA negative, did have cancer, and while her cancer was ductal, it was bigger than it should have been, and there was also a spot on her other breast that needed to be watched. Wanting to be proactive Meredith opted for a double mastectomy with reconstruction. She also had chemotherapy, because the cancer was found in a lymph node, and she lost all her hair. While she possibly could have gone without radiation, she opted for it. Again, she wanted to be aggressive and as proactive in her treatment as possible. She wanted to make sure her cancer was gone.

About a month ago, Meredith found another lump under her arm. She had a scan that was all clear except for the spot where the lump is located. She and her doctors are hoping it is just scar tissue, but she’ll have a lumpectomy this week and then she’ll wait for the biopsy results, which she is guessing will take several days. “The waiting is the worst,” she says. Liz, as a caregiver, felt the same way about waiting, “The worst part of all of it was waiting for the results.”

Tina, who also had young children at diagnosis, recalls that she just wanted to live long enough to raise her children. She says she found it difficult to accept the idea that she might die before her kids were grown. That thought is clearly on Meredith’s mind as well. “I remember saying, ‘Just give me five more years,’ and now it’s been seven years, and I’m saying, ‘Just give me seven more years,’ but no amount of time is enough,” she says. You can hear in her voice that she’s trying to be brave, and she says, “Hopefully, it will all be fine,” but it’s scary because, even though Meredith got the best cancer you can get if you’re going to get cancer, it is still cancer.

Anxious to hear Meredith’s results? We are, too, and as soon as she gets her results, she’s promised to follow up with us. We’re hoping for good news, and we will let you know as soon as we can.

Sources:

https://www.breastcancer.org/symptoms/understand_bc/statistics

https://www.breastcancer.org/symptoms/diagnosis/hormone_status

https://www.breastcancer.org/research-news/20080813

http://www.who.int/cancer/events/breast_cancer_month/en/

https://www.cancer.gov/types/breast

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2

Jennifer Lessinger

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.

Patient Profiles: Breast Cancer Part II

October 24, 2018/in BC Blog ND, BC Blog T, BC Blog TC, BC Blog WN, BC Blog WPS, Breast Cancer, Patient Stories, PEN Blog, Women Patient Stories /by Jennifer Lessinger

In the first part of of this three-part series, you were introduced to Betty, her daughter, Liz, Shannon, Tina, and Diana. You learned that women who are diagnosed with breast cancer are not really all that surprised to get a diagnosis. They are often expecting it. Having breasts is a risk factor, and women have breasts. In today’s installment, you’ll meet Meredith. She wasn’t expecting to get breast cancer. But, before we meet her, we’ll pick up where we left off in part one: the matter of hair loss and chemotherapy.

Whether or not a survivor lost her hair during cancer treatment, it’s one of the first things she says about her experience. Shannon even lost her eyelashes and they never came back. She says she knows it’s a little thing, but it still bothers her. Betty, didn’t lose her hair. Like a growing number of women, she did not have to have chemotherapy. She says avoiding chemo made a huge difference in her experience. At the time, Betty was receiving treatment at a research hospital, and there was a test available to her that would determine how beneficial chemotherapy would be in treating her cancer. She was told that if she scored between a one and a 19, she would not need chemotherapy. Betty scored an 18. While she had to pay for the costly test out of pocket and wait for insurance to reimburse her, she says it was worth it. “It was so helpful,” she says. “Because of what chemo does to your body, you don’t want it unless you need it.” Side effects from chemotherapy can include anemia, diarrhea, fatigue, fertility issues, hair changes/loss, memory loss, neuropathy, menopause and menopausal symptoms, mouth and throat sores, nausea, vaginal dryness, vomiting, bone loss/osteoporosis, heart problems, and vision problems. The test Betty had is now being more widely used and, as you may have read on the Patient Empowerment Network blog in the June Notable News here, researchers have learned that 70 percent of women don’t need chemotherapy when they have the most common type of early-stage breast cancer, with low and moderate risk of recurrence. The test looks at cells from a tumor biopsy to determine what is known as a patient’s recurrence score. Patients are scored between zero and 100, with zero being the lowest risk of recurrence. Researchers now know that women who score less than 25 do not necessarily need chemotherapy.

Betty also did not need to have a mastectomy. She had a lumpectomy followed by intraoperative radiation therapy, a 30-minute procedure that involves surgically placing a ball of radiation in the spot where the tumor had been. The procedure meant that Betty only had to have a single radiation treatment, and it helps reduce the side effects of radiation. Betty was eligible for that form of radiation in part because of the size of her breasts. She says she told the doctor, “I’ve been lugging around these big things my entire life and they are finally paying off.”

The intraoperative radiation was another benefit of being at a research hospital. At the time of Betty’s treatment, the procedure wasn’t being widely used and wasn’t available through her local doctors. Receiving treatment at a research hospital also made a difference in Diana’s care. She recalls going in to her local doctor’s office for her test results, and no one in the office would make eye contact with her. Then, when the doctor came in to see her, he told her she had breast cancer, that he wanted to treat it right away, that he’d see her next Tuesday, and then he left the room. Diana says she was left there shaking. “He has a heart, but he didn’t show it,” says Diana, who then went to a research hospital for a second opinion. Her new doctor was much better, she says, and adds that the shoulder of his lab coat was always dirty from the smudge of make up left behind after his patients hugged him.

The importance of good doctors that you are comfortable with seemed to be one of the critical components of care to all the women.They all talked about how much they liked and appreciated their doctors. “A really good physician realizes psychological and spiritual care are just as important,” says Tina, who sought the services of a psychologist after her treatment. She was struggling with anxiety and depression and found that the counseling really helped her to work through her emotions about having cancer, which emphasizes another, perhaps the largest, critical component of care during treatment: emotional and mental support and health. Diana says she found support online and emphasized the importance of staying positive through treatment. “Count your positives,” she says. “That is the key.” Along the same line, Betty says, “The number one thing is attitude.” Actually, she and Liz say “attitude” in unison, and Betty adds, “I think attitude is a big piece of it.” Meredith Cronin who was diagnosed at age 37, says “Attitude is everything.” Meredith, who had three children under the age of six when she was diagnosed, says she understands how easily you could get depressed as a cancer patient. “I always say that I felt blessed that I was young and so busy that I didn’t have time to be depressed.”

Shannon, who was accused of being negative because of her detailed planning to get breast cancer before she actually had breast cancer, says she wasn’t negative; she was realistic and it was that take on it and her preparation and planning that helped her maintain emotional balance.“It didn’t affect me emotionally as much as I think it would have,” she says. Shannon coped through research and attention to details, and she describes her experience in the kind of detail that makes you think she’d just had it done yesterday rather than three years ago. Betty used a different method of coping and says she’s been able to let a lot of the experience go. “I don’t dwell in that place,” she says. She and Liz also found a lot of humor in the experience. The clickity-clack of someone’s shoes, Betty’s preoccupation with cutting out recipes from a magazine, or the ridiculousness of what must have been an excruciating procedure, were all fodder for coping. It’s not that Betty doesn’t take cancer seriously, but she was better able to cope with the diagnosis by finding humor in the situation. “We laughed through our tears,” she says. Liz says that early on in the experience, they imagined the worst possible scenario, which made handling what really happened more doable. The ways of coping with cancer are as varied and vast as are the treatment options.

Next time, in Part III, recurrence.

Sources:

https://www.breastcancer.org/symptoms/understand_bc/statistics

https://www.breastcancer.org/symptoms/diagnosis/hormone_status

https://www.breastcancer.org/research-news/20080813

http://www.who.int/cancer/events/breast_cancer_month/en/

https://www.cancer.gov/types/breast

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2

Jennifer Lessinger

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.

Patient Profiles: Breast Cancer Part I

October 16, 2018/in BC Blog ND, BC Blog T, BC Blog TC, BC Newly Diagnosed, BC Testing, BC Treatment & Clinical Trials, Breast Cancer, Patient Stories, PEN Blog, Women Patient Stories /by Jennifer Lessinger

Female breast cancer awareness, with its pink ribbons, and Save the Ta-tas t-shirts, and fundraising 5Ks, sweeps into October each year with the same prevalence as pumpkins. No other cancer has managed to garner as much support, attention, or money. But, even without the pink campaigns, the prevalence of breast cancer is not a secret. An estimated one in eight women is diagnosed in our country, and there are about 1.38 million new cases worldwide each year. You’d be hard-pressed to find someone who doesn’t know a breast cancer survivor. This month, in a three-part series, Patient Empowerment Network is taking a closer look at five survivor stories and one caregiver. These women represent the more than 3.1 million women in the United States who have a history of breast cancer. In today’s installment, you’ll be introduced to five of the six women, and you’ll learn that getting a breast cancer diagnosis wasn’t really a surprise to any of them.

Breast cancer survivors are interlaced through all of our lives, and there is something very endearing about how openly willing they are to share their stories. They freely talk about their diagnosis and treatment, but more than that, they talk about their darkest moments alone in the hospital, or their need for counseling after treatment. They discuss the lengths they will go to endure invasive treatment that may prolong their lives, and they share their prayers to live long enough to see their children grown. They are so deeply candid that it’s as if they are inviting you to be a guest for the day in their exclusive club.

Only it’s a club you don’t really want to be a part of, says Betty Abbott, who was diagnosed five years ago. She was 72 at the time, and her cancer was ductal and non-invasive. She says it’s the kind you want to get if you’re going to get it. But, is there really a kind of cancer any woman wants to get? While the death rates for breast cancer have been decreasing since 1989 thanks to increased awareness, early detection, and advances in treatment, breast cancer is still the second leading cause of cancer deaths in women in the United States, second only to lung cancer. In 2018, approximately 40,920 women are expected to die from breast cancer.

Cancer is cancer, no matter the stage, the type, or the form. “That’s the thing about breast cancer…it’s still cancer,” says Liz Abbott. She’s Betty’s daughter. The two are very close, and Liz was with Betty every step of the way through diagnosis and treatment. Liz hasn’t had breast cancer…yet, but she fully expects to get it. She knows the statistics. Even though less than 15 percent of people who get diagnosed with breast cancer have a relative diagnosed with it, a woman’s chance of getting breast cancer nearly doubles if a first degree relative (a mother, sister, daughter) has had it. So many women get breast cancer, so many families of women, that for some women it’s no longer if they will get it, it’s when. Since her mom’s diagnosis, “our new realities are very different,” says Liz, who can’t help but worry if breast cancer is her own daughter’s path as well.

It was the path for Shannon Knudsen, who was diagnosed three years ago, when she was 43. Like Liz, Shannon was very close with her mother and walked with her through diagnosis and treatment of breast cancer. Shannon’s grandmother and great grandmother had breast cancer as well. So, for Shannon, breast cancer was never an if. “I never thought I wasn’t going to get it,” she says. “It was always a matter of when.” So Shannon wasn’t surprised by the diagnosis, but she says she was angry. You see, while she was prepared and had a plan, cancer still managed to throw her what she calls “an interesting little twist”.

Since she watched what her mom went through, being diagnosed at 49 with recurrence as leukemia 16 years later that was ultimately terminal, Shannon was diligent about staying on top of cancer research, and as soon as she learned that genetic testing was available, she looked into having it done. She was absolutely positive that her family carried the BRCA gene mutation. The BRCA1 and BRCA2 genes produce proteins that help repair damaged DNA cells. When either of the genes has a mutation and the genes don’t produce the protein or function correctly, DNA cells are more likely to develop changes that can lead to cancer. There are specific mutations of the genes that increase the risk of female breast and ovarian cancers. People who have inherited the mutations, which can come from the mother or the father, are more likely to develop breast and ovarian cancers at younger ages.

As soon as Shannon’s insurance covered the testing, she had it done. Fully expecting a positive result, Shannon was prepared to have a preemptive double mastectomy with reconstruction. But, Shannon’s results were negative. She doesn’t carry the BRCA 1 or BRCA 2 mutations.“I was shocked,” says Shannon, and she feels like the results gave her a little false security. That’s where the anger came in, because in August 2015, when her mammogram and subsequent 3D testing showed a black and jagged spot of concern, she knew that meant she was bound for chemotherapy, and that was something she had always planned to avoid by having preventive surgery. “I was 100 percent prepared to do that, and it didn’t work out that way,” says Shannon. Cancer, as it often does, had other plans.

Cancer had other plans for Tina Donahue as well. “It was a really, really difficult time in our lives,” says Tina of her diagnosis in 1991. It’s not that Tina wasn’t expecting to get a diagnosis at some point. She also had a family history of the disease, her maternal aunt died from breast cancer, and Tina was a nurse so she had a keen understanding of her risk, but when she was diagnosed at 44, she had just been promoted to an executive vice president position at work, and she had three young sons. She was also in school to get her MBA. Cancer was not part of her plan, and she thought she was going to have to quit school when she was diagnosed. However, thanks to the support of the other women in her study group, Tina didn’t have to quit school. She says the women rallied around her, told her not to quit and helped her, encouraged her, and tutored her through.

When it came to treatment, Tina and Shannon, though diagnosed more than 20 years apart, had very similar methods. “I just wanted to hit it as aggressively as I could and give myself as much life as I could,” says Shannon. She told her surgical oncologist that hers would be the easiest consultation ever. She had done the research, she knew the risks, she knew exactly what treatment she wanted. Tina, who also wanted to treat her cancer aggressively says she told her doctors, “Give me everything you’ve got.” Both women had a double mastectomy and reconstruction with silicone implants. Tina says her implants lasted 23 years before she noticed they started getting folds in them, which was a sign that both implants, though contained, had burst, and she had to have them redone. Shannon’s implants are a newer technology called gummy bear implants and are designed so that they won’t burst. Tina says the silicone felt and looked more natural, and Shannon says that was important to her as well. Tina also says that if she hadn’t been a nurse who had seen a lot of recurrence in women who had had a single mastectomy, and if she hadn’t been witness to her aunt’s experience, she may not have opted for the double mastectomy.

Diana Geiser did not opt for the double mastectomy, but now says she wishes she had. Diagnosed at age 50, Diana says she struggled with the decision at the time and remembers feeling like she wanted to keep part of herself. “Now I wish I’d done both,” she says explaining that one of the draw backs is that her natural breast gets bigger or smaller with weight fluctuations, but her reconstructed breast does not.

Regardless, all three women had four rounds of chemotherapy. They all had clear lymph nodes, and were hormone-receptor-negative (HR negative), meaning that it was likely that hormonal therapies wouldn’t work for them. Tina, still wanting to treat her cancer aggressively, says she wanted to kill everything and had low dose chemotherapy. She lost some of her hair, but not all of it. For Shannon and Diana, the pathology reports came back showing their tumors were aggressive, Shannon’s highly so, making chemotherapy necessary. They both lost all of their hair, which is something that must be incredibly pertinent to breast cancer survivors, because whether they did or they didn’t lose it, they all tell you about their hair.

Next time, in Part II, meet Meredith.

Sources:

https://www.breastcancer.org/symptoms/understand_bc/statistics

https://www.breastcancer.org/symptoms/diagnosis/hormone_status

https://www.breastcancer.org/research-news/20080813

http://www.who.int/cancer/events/breast_cancer_month/en/

https://www.cancer.gov/types/breast

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#q2

Jennifer Lessinger

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.

My Breast Cancer Story

August 28, 2018/in BC Newly Diagnosed, BC Video ND, BC Video WPS, BC Whole Patient Support, Breast Cancer, Empowered Patient, Patient Stories, PEN Blog /by Janet Maker

I was diagnosed with breast cancer in 2011. It was found by accident on a chest x-ray, and I was shocked. There was no history of breast cancer in my family, and I never thought it could happen to me.

Cancer patients are supposed to be upbeat; we are supposed to relax and trust that our doctors will provide the best possible care. I had never had a serious illness before, so I was naïve about what to expect from the medical establishment. I wanted to feel that I was safe and in good hands, and that I could simply follow my doctors’ advice. Unfortunately, that was not my experience.

Our physicians are usually our primary source of information, but the fact is that medicine in the USA is a business. Physicians are paid for their time, so unless a patient is a family member or a VIP, most physicians will not allot a patient any more time than the number of minutes that is the “standard of care.” Some doctors are more caring than others, but the for-profit system that we have in the United States rewards oncologists financially if they squeeze in as many patients as possible. A surgical oncologist will want to do surgery; a medical oncologist will want to do chemotherapy; a radiation oncologist will want to do radiation. This is what they know and what they are paid to do; and most oncologists want to get on with it as quickly as possible.

What they will usually not do is spend extra time consulting with specialists and/or looking in the medical literature for newer and better ways to treat their patients. They will generally not become knowledgeable about any kind of treatment outside their specialty, such as nutrition or any type of complementary medicine. I suspect that most oncologists would be willing to spend the time if they were paid, but insurance in the United States will usually not reimburse for these kinds of activities. In fact, the extra time that an oncologist would have to spend would actually cause them to lose income.

It seemed to me they just wanted me to follow their program, but I knew from even a very quick survey of the literature, that cancer decisions are not easy and simple. The treatment is often unsuccessful, and the side effects can be life threatening. Every patient’s case is different, so the “one-size-fits-all” approach on which traditional cancer treatment is based may not be the best way to proceed. Every year 40,000 women in the United States die of breast cancer after getting the standard of care. I did not want to be one of those statistics.

Because I have an academic background, it was natural for me to jump in and do a lot of research. I went to books, journals, and the Internet. I also got a huge amount of help from other patients. I told lots of people that I had breast cancer, and I gave them permission to tell anyone they wanted. My thought was that the more people they told, the fewer I would have to tell. But I had a huge side benefit—because breast cancer is so common, lots of former patients offered advice and support. I also joined a local breast cancer support group and an online support group at breastcancer.org. These patients were incredibly valuable to me. They referred me to doctors, including an integrative oncologist; they told me how to save my hair through chemotherapy; they told me about a program to reduce side effects through fasting; I was able to avoid neuropathy, mouth sores, and much more.

As of now, I have no evidence of breast cancer, but I am at high risk for recurrence or metastasis, so I am not able to simply return to the life I had before. Conventional cancer care offers periodic tests to see whether the cancer has returned, but it does not offer anything beyond hormone therapy to prevent the cancer from returning. The problem is that if it returns it will likely no longer be curable. I had to go outside of conventional oncology, where I found a lot of evidence that changing one’s “terrain” can keep the cancer dormant. Working with an integrative oncologist, I follow a program of diet, supplements, exercise, mental/spiritual practices, and avoidance of environmental carcinogens.

I learned a great deal from my cancer experience that most people don’t know, and I wanted to share my experience. I wrote a book that I hope will help other patients take charge of their care, to help them make the best medical decisions and to stay in remission afterward.

Janet Maker

Janet Maker, Ph.D., is author of The Thinking Woman’s Guide to Breast Cancer: Take Charge of Your Recovery and Remission, winner of 10 book awards. It is a comprehensive guide for women seeking to understand the range of options for breast cancer care, providing resources and information they need to make the best decisions about their own treatment and the best ways to stay in remission.

She holds a Ph.D. in Educational Psychology from University of Southern California, a M.S. in Social Work from Columbia University, and a B.A. in English from University of California, Los Angeles. She is retired from a career as a professor and author of textbooks in the field of College Reading, and she credits her background in academic training in helping her do research for this book. She loves traveling, dancing, food, blues music, Spanish, and the outdoors.

twgbreastcancer.com/

Patient Profile: Dana Oakes

October 11, 2017/in Patient Stories, PEN Blog, Women Patient Stories /by Jennifer Lessinger

Dana Oakes

Breast Cancer

Her diagnosis came in October 2011 during a routine mammogram. She says that when the technician came in for more pictures she knew immediately she had cancer. A biopsy confirmed malignancy and without any “debate or deliberation” Dana Oakes opted for a double mastectomy. Her surgery was scheduled for the next month. “I didn’t have a lot of of fear,” she recalls. “I said let’s get it out and get rid of it.” Oakes wasn’t interested in letting cancer get the best of her. After all, she had only recently recovered from a decade-long, debilitating battle with Lyme disease.

“It totally disabled me for many years,” she says of the Lyme disease that forced her to spend up to 20 hours a day in bed and go from full-time to part-time employment. Lyme brought with it other ailments that included burning pain in her hips, pain in her joints, profound fatigue, and flu-like symptoms. She describes the treatment and recovery as intense and says that, in a lot of ways, she feels that her chemo and cancer treatment were easier.

“I feel like I sailed through,” she says of her cancer treatment which did not leave her bedridden as her Lyme disease had. She credits an oncology team who made it as easy as possible and her husband Don who utilized the Family Medical Leave Act so he could be by her side every step of the way. But, it wasn’t all smooth sailing for Oakes. “With every doctor visit my prognosis seemed to get worse,” she says. “I was 62 years old and I had a fifty fifty chance.” Her treatment was aggressive. A month after her surgery she began chemotherapy which continued through April of 2012. She began radiation two months later, but there were several complications along the way.

Within weeks of recovering from her initial surgery she had to have an emergency appendectomy and she learned that, due to her Lyme disease, she would not be a candidate for breast reconstruction. Then during chemotherapy she got phlebitis and had to have a port put in. She also had to skip a week of chemo because her white blood cell count was too low. In addition, a heart issue developed due to side effects from one of her medications and she developed neuropathy which caused a stinging feeling in her ankles and calves that she equates to being attacked by yellow jacket wasps.

Fortunately, her heart issue was resolved within a year and, although it seems to be permanent, her neuropathy is controlled by medication. Oakes says she doesn’t miss her breasts at all and found an added bonus in that her cancer treatment may have also tackled any residual Lyme disease. “I found the chemo came as close to finally knocking it out as anything else,” she says.

This year, Oakes has graduated to seeing her oncologist only once a year, she has had no recurrence, and she lives with no evidence of disease, or NED. “I prefer to not say I’m cancer free because we never know,” she says. “But I like NED. I like him a lot.”

Jennifer Lessinger

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.

Mapping the Patient Information Journey

May 23, 2017/in Marie Ennis-O'Connor, PEN Blog /by Marie Ennis-O'Connor

Patients need appropriate information tailored to their specific needs at each step of the care pathway. This should begin on the day of diagnosis and continue on through treatment and long term self-management. Your healthcare journey is a continuum and your information needs change as you move along the patient pathway. When you are first diagnosed, you will have many questions, fears, and concerns. Having answers to your questions can help you understand your diagnosis better and feel more in control about your treatment decisions. How much information you want is up to you. Some patients feel overwhelmed by too much information at this stage. Others say they didn’t receive enough information. While information upon first diagnosis is vitally important, we may be in shock and in a heightened emotional state which makes it difficult to fully comprehend all the information we receive at the beginning.

Several years ago, when I raised the question on my blog of whether you can have too much information, Dr Deana Attai, Assistant Clinical Professor of Surgery at UCLA Health, pointed out that “it can be difficult to navigate all the information and options that are available”. Dr Attai recommends you “take your time, get organized, and if possible, bring a trusted friend or family member to appointments with you. If that is not an option, ask if you can record the consultation – that way you can focus just on listening, and go back and review the whole conversation later. Slowly sort through the information, do some research, and ask more questions if needed before you make a decision on treatment.”

Patients make the best decisions when armed with the right information. Research has shown that access to the right information at the right time delivered in the right way leads to an increase in a patient’s desire and ability to have a more active role in decision-making. Shared decision-making (SDM) is the conversation that happens between a patient and physician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. Decision aids that are based on research evidence are designed to show information about different options and help patients reach an informed choice. There are a number of tools available to support the SDM process such as information sheets, DVDs, interactive websites, cates plots or options grids. A 2012 Cochrane review found that patients who use decision aids improve their knowledge of their treatment options, have more accurate expectations of the potential benefits and risks, reach choices that accord with their values, and more actively participate in decision making. It’s important that the information you receive is tailored to your age and specific needs. When I was diagnosed with breast cancer, the information I was given wasn’t tailored to my needs as a young woman with breast cancer. The information was aimed at a much older patient demographic and didn’t reflect the impact that breast cancer would have on me as a young woman living with the disease.

As you move along the patient journey and better understand your illness, you may want higher levels of information. However, you may find the information healthcare professionals provide has not keep pace with your increased needs. This is the point where many patients turn online to seek more information. While the Internet can be a useful source of health information, it’s important to know how to critically evaluate the information you find online. This previous article, How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News has many helpful tips and resources to guide you. Always discuss what you find online with your doctor and ask them to put the information into context for your particular situation.

Increasingly patients are turning to their peers online, using social media to seek out the experiences of other patients to help guide their healthcare decision making. Reading information in a brochure doesn’t compare to the ability to interact and ask questions in a social networking site. US Department of Health and Human Services Chief Technology Officer, Susannah Fox, has labelled this trend as “peer-to-peer health care”. She observed how “people living with chronic diseases (and their caregivers) are especially likely to say they look online for peer advice. They are pioneering new ways of pursuing health by banding together and sharing knowledge”. This model of seeking and sharing information online has given rise to a new breed of expert patient – the ePatient. Dr Tom Ferguson who coined the term used it to describe patients who are “smart, motivated and experienced with an impressive and up-to-date knowledge of the best resources, centres, treatments, research, and specialists for their conditions.”

Once the initial diagnosis stage has passed, and you are moving through and beyond treatment, your information needs will also include every-day coping tips and long-term strategies to manage your care. This is where peer-to-peer support is particularly helpful. Research conducted by the Pew Research Center shows that one in five Internet users have gone online to find others who might have health concerns similar to theirs. That percentage is even higher – one in four – among those living with chronic disease, or caring for someone with a disease. Not surprisingly, doctors remain the first choice for an accurate medical diagnosis. But the number of patients saying they turn to their friends, family and other patients for day-to-day advice, and emotional support is higher. Dr Ferguson observed “when it comes to aspects of illness that some clinicians may consider secondary – such as practical coping tips or the psychological and social aspects of living with the condition – some experienced (ePatients) can provide other patients with particularly helpful advice.”

Apart from social networks hosted by patient advocacy groups, medical facilities, and health sites, patients are blogging about their experiences, sharing stories of coping with diagnoses and dealing with their diseases on a daily basis. On Facebook, which continues to be the number one social networking site, groups can be private or public places where users share coping tips, ask questions and find a sense of connection. While Facebook groups and pages are useful resources for patients, Twitter takes the healthcare conversation to another level. Here you have a greater mix of patients, physicians, healthcare professionals, and medical researchers, all coming together in one virtual space to discuss healthcare matters. Use #hashtags to search for health-related information and join Twitter chats related to your health condition. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. I use Twitter as my personal learning network, a real time information resource in which I am globally connected with patient peers and health professionals.

It has been over a decade since I was first diagnosed with breast cancer. Today as I look back on how far the journey has taken me, I can chart my progress towards becoming a patient advocate through the quality of the information I received along the way. My progress was advanced step-by-step by learning more about my disease initially from doctors, then through Internet searches and patient peers online. Now I have become the person sharing my experience to help others along the pathway. And I am not alone. By sharing your journey too, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis or learning how to cope with an illness, its treatment, and long-term care. As advocates, I believe it’s part of our job to make sure that all patients receive timely, accurate and understandable information to help guide decision-making. We have a wealth of hard-won wisdom and information to share, so let’s share generously with others who are just starting out on their own patient journeys.

Ask yourself who can you help today?

Marie Ennis-O'Connor

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.

hcsmmonitor.com/

Six Lessons Learned From Breast Cancer

October 19, 2015/in BC Blog ND, BC Blog WN, BC Newly Diagnosed, BC What's Next, Breast Cancer, Marie Ennis-O'Connor, PEN Blog /by Marie Ennis-O'Connor

“The period of greatest gain in knowledge and experience is the most difficult period in one’s life.” — Dalai Lama

Writing in Oncology Times, radiation oncologist, Matthew Katz MD, described cancer as an illness of transformation. “Biologically” he wrote, “it represents a change in growth and homeostasis. Metaphorically, a cancer diagnosis can transform how you see yourself and the way you experience life afterward.” When the dust settles after the cancer storm has passed, it is not uncommon for patients to reappraise their lives. Cancer forces us to slow down and look at what really matters. Caught up in the routines of daily living, it is easy to avoid doing this; but cancer stops us in our tracks and pushes us to the edge of what is familiar. With cancer there is no hiding place; its sharp glare strips away pretence and artifice, revealing the true nature of our lives and relationships.

Cancer is an invitation to take stock and re-examine your life, to discover ways of leading a more meaningful and fulfilling life. Richard G. Tedeschi, PhD, professor of psychology at the University of North Carolina Charlotte, reports five common growth outcomes from interviews he conducted with trauma survivors.

A deepened appreciation of life.
Enhanced relationships with others.
An appreciation for personal strength and endurance.
Setting out on new pathways or pursuing new interests and opportunities.
Spiritual growth and development.

As part of breast cancer awareness month, I extended an invitation to six women to share what they have learned from their personal experience of breast cancer. Their answers to the question, “what did cancer teach you?” reflect the themes identified by Dr Tedeschi. The women’s experiences span a trajectory of breast cancer from recent diagnosis and active treatment, to several years’ post-treatment.

Elizabeth McKenzie, a licensed psychologist who lives in Seattle, WA, was diagnosed with breast cancer in 2012. She learned to appreciate the value of stillness and find healing in solitary pursuits.

“When I was diagnosed with cancer in 2012, I knew that I had just been enrolled in a crash course with countless learning objectives. Some of the lessons, however, have been unexpected.

I learned to appreciate stillness, the silence in life. I am an extroverted person. I work as a child/adolescent psychologist. I am married. I am a mother. I am a daughter and a sister. I have many friends. Before cancer, I thought that the foundation of my life was largely my connection with others. The time I was forced to be alone to heal from many surgeries for my own health, led to my pursuing other solitary pursuits, mindfulness meditation, nature photography, personal writing, and exercise.

Over time, I have learned that my individual experience was also part of that foundation; to have time alone to live in mindful stillness is a basic need for my mental and physical health, one that I had long neglected. In working on this solitary foundation, I have also strengthened my connection with others. I am now giving serious consideration to attending a residential mindfulness retreat, one that would require that I be silent, except for counseling with teachers, for 3-7 days. That is something that in the past, I would have considered myself neither able to do nor willing to give myself that kind of time. Today, I feel emotionally and physically ready for the experience of being by myself, with myself, surrounded by nature, for days on end. This gives me sense of peaceful willingness, a gentle hopefulness, in a life full of uncertainty.”

Becky Hogue, a PhD Candidate (Education) at the University of Ottawa, was diagnosed with breast cancer in 2014. Becky wanted to share a cautionary tale so others could learn from her hard-earned experience.

“When I think back about one thing that I’ve learned, it is that treatments change over time but advice is full of ‘old wives tales’ which are often based upon older treatments. This was never more poignant than during my last round of AC chemotherapy. Throughout AC chemo, I had been suffering from nausea. I knew from support group that people who tolerated it well only had nausea for three to five days. I had nausea for at least eight days. Given I was on a 13-day cycle, this meant more days with nausea then without. Now, my nausea was never really bad. When I complained to my oncologist, he asked me “when was the last time you threw up?” Never. My nausea was never that bad, it just lingered.

The folks at support group (especially those a year or so ahead of me) would talk about different nausea meds. The meds I was on were not the meds that everyone was talking about. I found myself wondering if I should be on different meds? In my mind, a change of meds would mean less nausea. I would tolerate the chemotherapy side effects so much better.

What I didn’t realize was that these different nausea meds were the old school meds. The meds my oncologist had me on were the new ones. People in support groups, and some of the older chemo nurses, were not familiar with the new meds. The recommendations I was getting about ‘what works’ were ‘old wives tales’, and I bought into them instead of trusting my oncologist.

For my last bout of AC chemo, I tried a different combination of anti-nausea meds. My oncologist was away, so his nurse practitioner changed my meds (in part because I asked for it). I’m sure that if my oncologist was there, he would have explained that I was on the new meds, but also that they were doing their job. I didn’t know the other option was the older option. I didn’t realize that the folk lore about the effectiveness was in part just because it was the older meds. The new meds had not been around long enough to be part of the lore. With the change my nausea was no better, but the side effects of the meds were much worse. I ended up with terrible mouth sores (so bad I needed liquid morphine to manage the pain). One of my biggest regrets regarding my treatment was that I changed anti-nausea meds for the last cycle of AC chemo. I had forgotten my own advice. I had forgotten who I had decided to trust (my oncologist), and let the ‘lore’ effect my treatment.

This tale is meant to be a cautionary one. Not so much about seeking advice, but about remembering that people who have followed this path before you did so at a different time. The treatment options (and side effect management options) available to you today may not be the same ones that were available for someone else a year ago. Although older treatments may work, chances are the newer ones are better. Before changing treatment plans based upon what you are hearing on the net or in support groups, ask yourself ‘is this an old tale’? And finally, decide who you are going to trust, and trust them.”

Audrey Birt, a two-time breast cancer survivor, focussed on lessons of courage, connection and resilience.

“Cancer taught me I’m more resilient than I would have believed, it helped make me braver. It also taught me that life cannot be controlled. This made me more able to live in the moment and for the moment and that’s probably not so good for my bank balance but it’s great for my life balance in a way. It taught me to reengage with writing through my blog and in a funny way it changed my life and connection to others. But it also taught me my fragility and that’s a lesson I’m still learning, one day at a time!”

Author of From Zero to Mastectomy, Jackie Fox, has written of how breast cancer “gave me part of myself back”.

“One of the obvious benefits of cancer is reconnecting with friends and family, but old loves like art and music may reappear in your life as well. In my case, I started writing poetry again. I hadn’t written or published anything for nearly 20 years and I really thought that part of my life was over. I’m so grateful to have it back and I hope I never lose it again.”

Liz O’Riordan was diagnosed with breast cancer in July 2015. From her unique perspective as a consultant breast surgeon, she is learning what it’s like to be a patient from the other side.

“Being a patient in my own speciality has opened my eyes to a lot of little things that could be changed to improve patient care. I learned that the language of cancer is completely different for a patient compared to a doctor. I have been made acutely aware that some of the phrases I’ve used in clinic when breaking bad news, that I’ve heard others say, or come up with myself, now make me cringe. A lot of women get recalled from screening with tiny low grade cancers (<1cm), and I’ve said “If you’re going to get breast cancer, this is a good one to have”, or “You’re lucky that we caught it early”. All of these phrases were said with good intentions, to try and reassure the women that they were unlikely to die of their cancer, and would not need chemo. And most women are still in shock, so I never see them truly react to what I have just said. But no cancer is a good one to have, and no-one is lucky to get cancer. I will pay close attention to what I say to patients in the future.”

The final lesson is one of authenticity and integrity, something Eileen Rosenbloom who was diagnosed with breast cancer in June 2010, believes cancer cannot take away.

“Although I often felt like cancer was a thief that had taken everything from me, being so ill also created an opportunity to see what it could never take — the very essence that is me. Sometimes I’d look at my eyes in the mirror and think: There I am, right there. I’m still me. It felt empowering to realize no matter how dark things got, I still had control over some part of myself. My very essence remained intact, even if stripped down to a raw version without any frills.”

Whatever place you are at with a diagnosis of breast cancer, there are lessons to be learned. These will be unique to you; but you can also learn from those who have walked this path before you. Reach out to them, and lean on their experience to help make the way a little smoother for your own journey.

Marie Ennis-O'Connor

hcsmmonitor.com/

A Patient’s Perspective on Clinical Trials

September 30, 2015/in PEN Blog /by PEN Editorial Staff

(Editor’s Note: This article is in two parts. This is Part 2 (go here to read Part 1) and consists of an interview of Celine Delaloye, a professional working at a pharmaceutical company and an HER2 breast cancer-positive patient. The interview is conducted by the “Indomitable” Christine Bienvenu, breast cancer patient, avid patient advocate and board member of the Patient Empowerment Foundation, our sister organization under development in Europe. And please, don’t be concerned that this is an interview with a European patient. You will be surprised to see that the issues, thoughts, concerns of patients and doctors are the same. These issues are worldwide!)

As a professional working in a pharma company, Céline Delaloye (28) is no stranger to clinical trials. Here, she discusses her personal experience as an HER2 breast cancer-positive patient.

Interview With Celine Delaloye

Christine Bienvenu (CB): How did you learn about the clinical trial you are part of, and what convinced you to enroll in it?

Céline Delaloye (CD): It was thanks to working for a pharmaceutical company that I first heard about the clinical trial, and given my job, I’m well aware of how difficult it is to enroll in trials – let alone get accepted. As a professional, I’ve drafted many a quality of life questionnaire for clinical trials, and my professional insights really helped me when I, all of a sudden, was a patient myself.

My oncologist explained to me what a Phase II randomized study was, with the “random” part meaning that I couldn’t choose which group I’d be part of. Again, thanks to my professional background, I already knew a lot and didn’t need further convincing. But for my husband, it was really important to get a second opinion. Luckily, the oncologist we met with spoke very highly of the clinical trial, boosting our confidence about it being the best possible treatment available.

CB: Because of your job, you’ve seen how difficult it can be for patients to meet Phase II clinical trial eligibility criteria. Does that make you feel fortunate about access to the clinical trials, or frustrated that more patients can’t benefit – or did you even think about that at all?

CD: Like you said, I knew from my professional background what I was up against. My husband, though, was afraid I’d be used as a “guinea pig”. And it’s when I heard those words – “guinea pig” – that it struck me how the words “clinical trial” can really scare people. They’re in the dark about the details; to them, it’s like some kind of experimentation.

I honestly feel very fortunate that I was accepted into the clinical trial because I had the “luck” – if you want to call it that – of meeting all the criteria. I’m proud and happy to be part of a clinical trial. But I’m fully aware of the fact that not everyone has the same opportunity.

CB: How did you feel when you were accepted: Happy or apprehensive? What were your hopes and fears when you enrolled in the clinical trial?

CD: Initially, I was really happy in the sense that there was no doubt at all about my meeting all the acceptance criteria for the trial. I was excited. Scared. A bit of everything. My professional experience pushed me to learn as much as I could about the clinical trial.

To be honest, though, as a patient, I just needed to understand every aspect of it. But when I started reading all the documentation related to the study, its possible side effects and outcomes, I became more apprehensive: Which ones would I have? When I started the first cycle, though, I realized that we’re all unique in how we react. Just because potential side effects were listed didn’t mean that I’d have them. Two treatments in, I saw that I wasn’t experiencing every side effect, and felt more reassured about continuing the treatment with confidence.

And oh my goodness, the paperwork! I found it completely overwhelming, to be honest. But I just took it one step at a time. That’s the only thing you can do, really.

CB: Be honest, how hectic were the logistics of being part of a clinical trial?

CD: As a professional, I hadn’t had to deal with the emotional component of being part of a clinical trial. As patient, I did. As a patient, at intellectual level, I needed to understand all of the protocol tests associated with clinical trials to feel reassured and feel confident about continuing.

To be honest, I was never discouraged by the number of appointments related to the clinical trial. Sure, logistically, I needed to make sure my baby and husband were okay, but I have an amazing network of family and friends who have supported me throughout. At no time have I wanted to stop treatments: I’m more of the mindset of, “The faster we start, the faster the results”, right?!

CB: How supportive was your medical team in helping you deal with logistics?

CD: They were amazing, across the board – seriously. All the oncologists and nurses were so accommodative of and flexible with my schedule, needs and requests. They really made my life so much easier. Keeping up the busy pace of appointments was never an issue.

CB: Based on your experience, what would you tell anyone considering enrolling in a clinical trial?

CD: As both a professional and a patient, I’d encourage others to look into clinical trials, gather extensive information, ask their oncologist questions, and go for it. In my mind, it’s the best thing that can happen, treatment-wise. But I know how difficult it can be for so many, given just how stringent the acceptance criteria are. And for me, that’s a problem. Get out there, don’t sit back. Be proactive! Learn everything you can… Talk to your doctor: in my view, as patients, we’re a crucial part of the team!

CB: As a patient, do you feel information about clinical trials could be more available or easily accessible?

CD: Personally, I think every patient should be informed of any study, regardless of eligibility or where they are being treated. It is both the patient’s and the doctor’s responsibility to learn about clinical trials. When you are first diagnosed, your world crumbles. But information is knowledge and power… It’s so important. In my view, all hospitals – university and private – should be part of raising awareness in patient circles about clinical trials by hosting regular information sessions. If patients had easier access to information on clinical trials, I think they’d be naturally more inclined to look into their eligibility.

Another aspect that I think is often overlooked – but very important – is this: If a patient isn’t accepted into a clinical trial, what support networks are available for them? They have just as many hopes as the rest of us and shouldn’t be left behind. I was just lucky enough that I qualified fully for the clinical trial, so this deep disappointment wasn’t ever anything I had to deal with. I feel very lucky in that respect. But I do wonder about the support network for those patients who don’t qualify.

CB: Any parting thoughts?

CD: As a patient, it’s important to remember that when you accept to be part of a clinical trial, you also have every right to back out – at any time. It’s also important to know that if the disease progresses, a patient runs the risk of being removed from the study. I also firmly believe in the patient being proactive and informed every step of the way.

The National Cancer Institute’s (NCI) “10 step guide on how to find a cancer treatment trial” helps patients better understand what clinical trials are all about, how to talk to their doctors, and know what questions to ask, visit: http://www.cancer.gov/about-cancer/treatment/clinical-trials/search/trial-guide?cid=tw_NCIMain_nci_Clinical+Trials_sf39211784

Breast Cancer Survivor – Exploring alternative treatments and clinical trials

August 20, 2015/in Partners, Women Patient Stories /by PEN Editorial Staff

Diary Entry

To all my breast cancer sisters….as I found out when diagnosed with breast cancer in January 2012, we’re all part of a big sorority. My cancer was found from my yearly mammogram. I couldn’t feel any lump and neither could my doctor. Before making this too long let me just state the steps of my journey: my prayers became very specific to this news; I went back for an ultrasound – definitely found something suspicious; next met with surgeon, she ordered an MRI & amp, biopsy; result was a stage 1, invasive ductal carcinoma (scary sounding); surgery was recommended, also was told I now had a team of doctors I would be seeing (radiologist, medical oncologist and nurse navigator).

That’s the short story if you want to stop now that’s OK. However, I do want to mention the two newer medical treatments I was able to utilize after surgery – Savi catheter implant for radiation (1 week of treatments vs the normal 5-6 weeks of radiation) and Oncotype.DX test to determine if I would really benefit from chemotherapy. There’s lots of information available on both of these treatments, and of course discuss them with your doctor. From my experience I would recommend both of them if the pathology results are such that you meet the requirements for these treatments.

So the process began, I had at least a 1″ stack of papers to read on breast cancer treatments, types of surgeries, chemo, radiation, etc. At first I didn’t want to read any of it but after a few days I started digging in since I would have to make decisions particularly regarding what type of surgery – lumpectomy or mastectomy, pros & cons on both. I had about two weeks to make up my mind – I read, read, read & prayed, prayed, prayed (my husband was my partner in all my decisions as well). My choice was for a lumpectomy (called breast conserving surgery)based on the small size of my cancer & the location, and the fact that if after surgery the results showed it was in the lymph nodes I could have a mastectomy.

There’s no doubt that all of a sudden our life was focused on the doctor’s visits, education, patience and keeping down the anxiety while waiting for the day of surgery. The day of surgery finally came, prior to the actual surgery I had to have two procedures done; two wires implanted (with ultrasound guidance to help pinpoint the cancerous area for the surgeon, and a shot of dye injected in the breast which allows for the surgeon to pinpoint the sentinel lymph nodes (the first ones that would show if the cancer was on the move). The surgery went well and I went home that same evening to wait for the pathology reports which took two days. I was very anxious, of course, for that next appointment wondering what the report would show and knowing my next steps in treatment would be determined by those results. I was Blessed! I had no cancer cells in the lymph nodes and the margins around the cancer were clear. The surgeon had put in a temporary spacer during surgery hoping that I would be a candidate for the Savi catheter. My results did meet the requirements, so during this appointment she took out the spacer and inserted the Savi catheter. This meant then that I would see the Radiologist the next day and the radiation treatments would take place the following week – Monday thru Friday, twice a day, and that would be all the radiation treatments I would have.

It was almost two weeks after finishing radiation that we met with the Medical Oncologist and again, I was BLESSED, the test (Oncotype.DX) showed that I would not benefit from traditional chemotherapy. The doctor did want me to take a 1mg pill daily (his recommendation for me was Arimidex – one of several chemo drugs available) for 5 years. There are possible side effects with all drugs and you can switch to one of the other drugs if needed – everybody is different and you have to work with your doctor to determine what is best for YOU!

I have made this a very long entry, but I wanted to put this down for my own record of this cancer journey, and if the information is helpful to anyone else I would be very happy. I would welcome any questions regarding any part of this journey – diagnosis, treatment, surgery, post-surgery decisions, etc.

My final thoughts would have to be that the most important part of this journey was the deep gratitude I have for my husband (a great caregiver and partner throughout this entire 3 month trial), my children, son & daughter in-law, my grandchildren and all the prayer partners whose prayer support was so strongly felt and deeply appreciated. I was never alone, the Lord was always with me!

I would love to offer my support to any one facing or already on their breast cancer journey!

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Tag Archive for: breast cancer patient

Transcript:

Transcript:

Interview With Celine Delaloye

Diary Entry

CONNECT WITH US