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Is Telemedicine an Advantage for Low-Risk Breast Cancer Patients?

Is Telemedicine an Advantage for Low-Risk Breast Cancer Patients? from Patient Empowerment Network on Vimeo.

 For low-risk breast cancer patients, is telemedicine an advantage? Expert Dr. Regina Hamptonfrom Luminis Health Doctors Community Hospital shares her views on when telemedicine makes sense for low-risk patients and the benefits she’s seen for patients’ quality of life.

See More from the Breast Cancer TelemEDucation Resource Center

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Transcript:

Dr. Regina Hampton:

I think it helps to eliminate a lot of those in-person visits, which then means they can enjoy life. We want them to enjoy life after surviving their breast cancer diagnosis and treatment. So maybe they’re doing their televisit while they’re on vacation or while they’re out of the state, visiting with relatives. So it really allows them to be able to stay in tune and in touch with their healthcare providers, stay on top of their visits, but allow them the flexibility to continue to live life. I often tell patients, “Look, after we’ve treated you, we don’t want you in our offices all the time. We want you out there living life.” And if we can make that easier by doing a quick tele visit, especially if there’s not something serious going on, then I think that’s a great advantage. And I think as we move deeper and deeper into the telemedicine world, I think patients are going to appreciate that, and they’re going to actually demand it and say, “Well, you know, I’m doing fine, I just need you to look at my mammogram and us to have a quick discussion while on a cruise or while I’m on the beach in Hawaii enjoying some time with my family.” So, I think it’s opened up a new world, and it’s just going to get better and more easy, and I think patients are going to shift their brains to say, “You know, if I don’t have to be in an office somewhere, I’d rather be on a video or a phone visit.

Which Breast Cancer Patients Benefit Most From Telemedicine Visits?

Which Breast Cancer Patients Benefit Most From Telemedicine Visits? from Patient Empowerment Network on Vimeo.

Dr. Regina Hampton  from Luminis Health Doctors Community Hospital provides her perspective on care situations when patients can benefit the most from telemedicine – and when in-person visits can provide an advantage.

See More from the Breast Cancer TelemEDucation Resource Center

Related Resource:


Transcript:

Dr. Regina Hampton:

So, I think when we look at new patients, newly diagnosed, I think an in-person visit is certainly advantageous, I think people certainly want to meet their doctor in-person, what I found personally is after that initial visit, then we’ll convert the rest of the visits by telemedicine. As the patient is willing, if they want to come in, I’m happy to have them come in, where I think it’s really beneficial is in survivorship after the patient has gone through treatment, and she may still be following with her medical oncologist, because she’s on hormonal therapy. Or she may be on some form of chemotherapy, and maybe she wants for me to be able to take a look at her mammogram. Well, I can still do that because I can remotely access those films, and then we could do that television, and if she’s not expressing any concerns, then we can do that as a television, so this helps, especially for those patients in survivorship where they’re not going to three and four different doctors on a regular basis. They’re going to that one doctor, they’re getting that in-person visit, and then some of the other providers are part of the team can maybe move theirs to telemedicine visits, so again, I think it helps to keep patients with that connection to some of those without again, having the burden of taking time off of work, having to arrange childcare, they can do those other visits by telemedicine. And that’s something new that we weren’t doing pre-COVID, patients were having to come into the office and see every single provider for every six months for the first two to three years after their diagnosis, so I think that really has made it more convenient for the patients, and it’s really allowed us to really streamline our operations on the provider side, which then allows us to be able to serve more patients.  

Ten Things I Wish I Had Known When I was Diagnosed with Breast Cancer

As soon as the first golden leaves of autumn appear on the trees a feeling of sadness starts to descend over me. I’m catapulted back over the years to a late September day. A day that’s etched forever on my mind. The day I was diagnosed with breast cancer.

In the weeks that followed my diagnosis, I became enveloped in a sea of pink as Breast Cancer Awareness Month took place. But when October came to an end and the pink ribbon wearers disappeared, I was left wearing the everyday reality of the disease. Over a decade has passed since then and yet I still feel a sense of sadness when I think of that time and all I had yet to learn and go through. I can’t help wondering how much my experience might have been different if I had known then what I know now.

One thing I now know is that we owe it to those who come after us to share our hard-earned wisdom. So in that spirit, here are ten things I wish I had known back when I was a newly diagnosed patient.  I hope sharing these lessons may make the path towards recovery that little bit smoother for others who are new to this journey.

1. Everything in your life is about to change

Once you’ve been baptized in the fire of cancer your life as you knew it will be irrevocably changed. The apparent randomness of a cancer diagnosis can shake your sense of identity to its very core and afterwards nothing will ever feel certain again.   Cancer invades not only your body but every other area of your life, including your relationships, family life, friendships, finances, career, and even your sense of self. You may be surprised to find the people you thought you could count on disappear from your life. At the same time, you will be surprised to find support can also come from unexpected sources.

2. Online support is real

Among those unexpected sources will be the people you meet online. Online communities may be virtual but they are no less real in terms of support and advice. On Facebook and Twitter you can find patient communities which will be an invaluable source of information and support to you. Check out the #BCSM Twitter chat – a weekly chat for breast cancer patients and their caregivers.

3. You will feel fearful and anxious

One of the most common emotional and psychological responses to the experience of cancer is anxiety.  Cancer is a stressful experience and normal anxiety reactions present at different points along the cancer pathway. Anxiety is a natural human response that serves a biological purpose. It’s the body’s physical “fight or flight” (also known as the stress response) reaction to a perceived threat. You may experience a racing or pounding heart, tightness in the chest, shortness of breath, dizziness, headaches, upset tummy, sweating or tense muscles. All of these signs indicate that sympathetic arousal of your nervous system has been activated, preparing you to stand your ground and fight or take flight and run away from danger.

Try this coping tip. When we are fearful and anxious we tend to breathe more shallowly.  Shallow breathing, which doesn’t allow enough oxygen to enter our bodies, can make us even more anxious. Practice taking some slow deep abdominal breaths.  Deep abdominal breathing slows the heart down and lowers blood pressure. The advantage of focussing on the breath is that it is always there with us. We can turn to it anytime we are feeling anxious.

4. You are your own best health advocate

Although you may be reeling from the news of a cancer diagnosis, it’s important that you learn as much as you can about your diagnosis and what treatment options are available.  In this article, you will learn which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.

5. Your will experience brain fog

Cognitive impairment, to a lesser or greater degree, can affect you both during and after your treatment. You may have the feeling that your cognitive abilities are slower and less acute than before – almost as if your brain is shrouded in a fog. We call this the “chemobrain” effect and the effect may persist for months or even years after treatment ends.  A more formal term – post-cancer cognitive impairment (PCCI) – is used by researchers to describe a group of symptoms, which include slow mental processing, difficulty concentrating, organizing, and multitasking.

PCCI symptoms can also include:

  • memory loss – forgetting things that you normally remember
  • struggling to think of the right word for a familiar object
  • difficulty following the flow of a conversation
  • confusing dates and appointments
  • misplacing everyday objects like keys and glasses

It’s still not clear how many people with cancer get chemobrain or which drugs cause it. However, there are several things that you can do to help you cope with its symptoms. Read this article for more information.

6. You will experience bone-crushing tiredness

We all know what it’s like to feel tired – physically, mentally, and emotionally, but usually after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough.  You experience a persistent, whole-body exhaustion. Even after adequate sleep or rest, you will still feel tired and unable to do the normal, everyday activities you did before with ease.

A lot of cancer patients don’t report fatigue to their doctors because they think that nothing can be done for it. In fact, there are things that can be done to alleviate the debilitating effects of cancer-related fatigue.  If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you. Read How To Cope With Cancer-Related Fatigue for more tips and information.

7. You may be surprised by feelings of guilt

Cancer-related guilt is a complex emotion. You may feel guilty and worry that your lifestyle choices somehow contributed to a cancer diagnosis. If you learn that you carry the BRCA1/2 gene, you may feel guilty that you could pass this gene mutation on to your children.  Or you may feel guilty that your cancer was diagnosed at an earlier stage than a friend or family member who has a worse prognosis.  These feelings of guilt may surprise you, but it’s a perfectly normal reaction to a traumatic life event like cancer. Read How Do You Deal With Cancer Guilt to learn more about this topic.

8. You will feel pressured to stay in a positive frame of mind

I admit I caved in at the beginning to pressure to stay strong and positive when I was first diagnosed with breast cancer. I did it because it reassured the people around me.  While I accept that for some people maintaining a positive attitude is a valid coping mechanism, for myself and many others, the pressure to always show our sunny side is a denial of our pain, anger, grief, and suffering. I now believe by promoting this attitude in the face of cancer, we create unfair expectations and deprive patients of an outlet for their darker fears. This is my personal viewpoint, and it’s one that I don’t expect everyone to share. However, I mention it here so that those who are newly diagnosed don’t feel they have to always present a smiling face to the world. It really is ok to express your fears, your sadness, your anger, and your grief too.

9. You will need time to grieve

While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part of the experience. Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.

Coping with the losses associated with cancer is challenging.  Grief brings many emotions with it. Patients, as well as caregivers and family members, may go through emotions of anger, denial, and sadness.  While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life.   

10. Cancer doesn’t end when treatment does

I wish I had been better prepared for how I would feel when cancer treatment ended. I just assumed I would pick up where I had left off and get on with my life as if cancer was no more than a blip. I wish someone had told me that cancer doesn’t end when treatment does.    Sometimes, there can be a code of silence surrounding the aftermath of cancer treatment.  There is an expectation that when you walk out of hospital on that last day of treatment, your cancer story has ended. But in many ways it’s only just beginning.

I now know that cancer is more complicated than simply being disease free and that a physical cure doesn’t mark the end of the healing process. Adapting to changes in energy and activity levels, adjusting to altered relationships at work and in your personal relationships, coming to terms with a changed body image, and managing pain and treatment side effects are some of the things you will face in the post-treatment phase of recovery. Be compassionate and gentle with yourself as you move through this stage of your cancer journey. Don’t judge yourself or feel pressured by others to try to hurry this stage along.

Wrapping Up

Being diagnosed with cancer is a life-changing event. You will go through many emotions and experiences throughout the roller-coaster ride of diagnosis, treatment, and beyond. Each person will experience it in their own way. While there’s no right or wrong way to go through the experience, it’s important that you don’t ever feel as if you have to go through it alone. Reach out at each step of the way and find someone who understands what you are going through and can offer you the support you need.

Patient Profiles: Breast Cancer Part III

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

Patient Profiles: Breast Cancer Part I

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