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A Cancerversary Reflection

This blog was originally published by I Had Cancer.com on July 23, 2019, by Catherine, here.

This month marks the five year anniversary of my first cancer diagnosis, and three years since my stage IV diagnosis. Statistics say that I’m at the upper limit of my predicted survival (2-3 years), so it looks like I’m bucking the trend. I have a strange mixture of emotions. On one hand I feel like celebrating, but on the other hand I feel quite drained – emotionally and physically. It’s hard work living with cancer.

I’m tired of traveling to Manchester every three weeks for treatment. I’m sick of feeling guilty when I eat a dessert or drink one too many glasses of wine. I’ve had enough of slathering on cream to try to keep the skin on my hands and feet from cracking. I’m fed up with scans, blood tests, cannulas, and putting up with the indignity of being poked and prodded by strangers. What I wouldn’t give for just a few months of freedom from the shackles and restraints that my cancer diagnosis entails.

Recent years have seen a huge rise in cancer life expectancy. Medical advances in immunotherapy, genetic profiling, artificial intelligence and advanced imaging are just a few of the areas that are significantly impacting that survival rate. It is now estimated that 2.5 million people in the UK alone are living with cancer and over 15 million in the US.

Despite this growing population, there is so little awareness and understanding of advanced-stage cancer and its emotional and physical burden. I’ve lost count of the number of times I’ve been asked when my treatment will be finished. When I explain that I’ll be on treatment forever, people look shocked and embarrassed. There is a general perception that cancer is something you have, and if you’ve caught it early and fight hard enough, you beat it. Versions of this story are churned out with every awareness campaign, accompanied by coloured ribbons and sponsored runs.

I’m not saying that we should stop these campaigns – it is important to highlight the symptoms of cancer and encourage people to be vigilant – but society needs to become aware of the daily challenges people living with cancer face in our attempt to live a ‘normal’ life.

Most of us will be on treatment forever – treatment that often comes with debilitating side effects. Many of us are unable to work, or are struggling through pain and fatigue to hold down a job so that we can afford to feed and clothe our children. Normal life plays second fiddle to the endless cycle of medical appointments. And every single one of us has a constant mental battle to overcome the fear of an uncertain future.

I’m exceptionally grateful that, five years on from my original diagnosis, I’m still here and relatively healthy. But it is exhausting having to keep conjuring up the inner strength to overcome the physical and emotional daily challenges of a cancer diagnosis for such a long period of time.

Sorry for the moan, it’s quite out of character. I’m usually a proud person, preferring to keep my struggles and insecurities private, but I feel quite strongly that there is simply not enough understanding or practical support for the millions of people in this country and around the world in my position.

Globally we are making huge advances in our ability to kill off errant cancer cells, but we have long neglected the wider emotional, physical and financial needs of the people whose lives we’re extending.

I long for a time when society has a better appreciation of the challenges cancer survivors face and can start creating an environment that better supports the needs of our growing population.

Patient Profile: A Follow Up with Meredith Cronin

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 blogPart IPart II, and Part III.

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

Living with Breast Cancer – A Patient’s Treatment Diary

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 diagnosis is important. Connecting you to those who can relate and provide support is what we do.


Today I turn 42….not up for celebrating at all…but grateful for the loving and warm messages from friends and loved ones around the world and from home. Grateful hubby and my mom are here with me.

Had a bout of feeling sick this morning and had to cancel my appointments. Feeling better now…hope it was just nerves and nothing else…as need to be STRONG and ready for Round 2 chemo this Saturday.
I think it should be better this time as I know what to expect in some of the side effects from Round 1 and feeling physically stronger and wounds are healing better.

I’m newly married – 1+ years. Diagnosed with breast cancer end of May and underwent a right Apr TD BCmastectomy multifocal tumor, with removal of 21 lymph nodes. I had an immediate reconstruction with TRAM flap procedure on June 13 and started AC chemo July 26. 12 weeks – every 3 weeks cycle. 6 months of chemo in total: AC and Taxol + Herceptin (weekly for 12 weeks after AC). Then Radiation daily for 5 weeks + 5 years of Hormone Therapy. My sister found this site for me as she realized that I have had limited contact with support groups here in Hong Kong due to limited English speaking groups. I am from Canada, lived in Dubai the last 5 years where I had met my hubby and we moved to Hong Kong a year ago.

I have been thriving on the words of those who can relate to my experience, well wishes and positive outlook! I just had a Reiki, Osteopath session and physiotherapy today. Needed it! Think my nerves are a bit shot….thinking I wasn’t nervous but likely am in anticipation of my next doctor’s appointment and review of how I am doing. I’ve found meditating helps a great deal and my Reiki master suggested I meditate for a few minutes every day for 21 days….This continues to be a journey for myself and self-healing.

Fast forward a few months….

I have finally finished CHEMO!! YAY! And have now started Herceptin every 3 weeks for 8 more months and Tamoxifen for 5 years. Radiotherapy started today and it will be daily for 5 weeks. Was quite stressful…and arms got numb and sore.

Life is closer to normal that it has been for quite some time and I’m able to travel and enjoy a few pleasures. My visit to Phuket was good and much needed quality time with hubby. Last week I was at the Farm – San Benito in the Philippines for a wellness program. So good for my body and healing.  I’m officially a survivor and I hope to share with you, learn about your experiences, your advices, tips and laughter! Love and light

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An Ounce of Prevention is Worth a Pound of Cure

An ounce of prevention is worth a pound of cure. It creates a sense of awareness and provides a window of opportunity for you. Sometimes it is a matter of accountability and sometimes it is about breaking old patterns.

When my father was diagnosed with heart disease many years ago, we started eating and cooking differently. That didn’t change my dad’s ways and he ultimately died of heart disease at 62 years old. I remember he used to eat and drink things that weren’t good for him and joke about it with me and then say: “Don’t tell mommy.” That was his choice. I made a different choice long before his passing to eat healthier. If I did eat things that weren’t healthy, my body sent signals to me that these foods weren’t acceptable to me anymore.

When my mom was in treatment for ovarian cancer I found myself in Medical Libraries looking for clinical trials that would save her. When she passed it was a catalyst for me to look into prevention for my own health. I went for genetic testing at NYU Medical Center. While I don’t carry the gene for breast cancer, I have to be cautious because of the history of cancer in my family. I diligently pursued my annual gynecologist exams and additional ovary scans and blood work. Additionally, I followed up with my 6-12 month mammograms.

The result of my taking my own action on proactivity toward prevention was a diagnosis of stage 1 invasive lobular breast cancer. To take it a step further, I was originally advised by my breast surgeon to only have one breast removed. I followed my intuition and chose a double mastectomy and that resulted in even more prevention. When my surgery was completed, I was told that the other breast was pre-cancerous. If I hadn’t been my own best advocate, I would have found myself in the same shoes at another time.

Since I was diagnosed at an early stage my Oncotype couldn’t justify chemo treatment either way, but I remain on Tamoxifen therapy for probably another seven years.

I have also been discussing ovary obliteration with my oncologist and another specialist because of my lineage of cancer. In all likelihood, I will have my ovaries removed sometime this year.

When I finished treatment for breast cancer and had reconstruction surgeries, I thought to myself: “Now what? Hmmm, I have focused for a year and a half on my breasts, now it’s time to get back to the taking care of my other body parts and I got back on schedule with my dentist, gynecologist and internist all in the name of self-care and prevention as I lead my busy life balancing career, family, fun and connection with others. I knew that if I didn’t exercise extreme self-care, I would be much good to others.

About a week ago, I am finished up 4 and 5 of Moh’s surgeries to remove skin cancers from my body. In order practice prevention, we have to know our bodies, face fear and get checked out.

In some cases, I do know that even prevention is not a cure, because my mother was one who religiously (not in a hypochondria mode) went to all of her doctors’ appointments, pap smears, etc., and still she was diagnosed with late stage ovarian cancer. The bottom line is prevention cannot hurt us like lacking in self-love will.

So….., what can YOU do to take an active part in your health? What does practicing prevention look like to you? It could be something as simple as changing your diet or scheduling doctor’s appointments that we hesitate to make because we are always caring for someone else. It could also be taking care of yourself in terms of mind and spirit and working on stress reduction? In what ways can you reduce stress and overload in your life?

This blog is being shared to create awareness and remove fear. Know your body! You are the only one who does. Practice prevention and self-care. Put yourself first so that you can be around to care for others. That is my message and my gift to you on this beautiful day!

If you need help in this area or any other area of your cancer experience, reach out to me gina@newbeginningswithgina.com or visit my website: www.newbeginningswithgina.com.

I look forward to hearing from you!

Xo Gina