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Breast Cancer Before 40: How Can I Preserve My Fertility?

Breast Cancer Before 40: How Can I Preserve My Fertility? from Patient Empowerment Network on Vimeo.

Dr. Stephanie Valente discusses fertility preservation in breast cancer patients under the age of 40 and the potential for pregnancy following treatment.

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert here.

Related Program:

Breast Cancer Before 40: What You Should Know


Transcript:

Dr. Stephanie Valente:

So, another issue that is really important for young women is discussing fertility preservation. And this really needs to happen at the time of their diagnosis. So, we know that the cytotoxic agents that we can give females just through chemotherapy can decrease the ovary and the ability for these women to have menstrual periods after chemotherapy. So, the ability for them to get pregnant naturally.

As well as some of the medications. So, somebody who has a breast cancer that is estrogen positive, the recommendation is for these women to be on hormone suppressant medicine for five to 10 years after their breast cancer diagnosis and treatment, therefore not being able to be pregnant while on these medications. So, talking with young women when they get diagnosed about their family planning and their fertility options up front before they have surgery or chemotherapy is really beneficial.

And whether or not they need to see a fertility preservation specialist. If they want to consider IVF. Or if they have a gene, looking at genetic testing for their future offspring. So, these are all conversations that really need to happen before these women begin chemotherapy if they need it.

And the good thing is that at the young women’s clinic, these fertility specialists are embedded in the clinic. So, they are able to get an appointment with them right away. And a lot of times if these women do want to undergo fertility preservation, that can happen within 10 days of seeing the specialist. So, it really doesn’t delay their care. And we do know that it is safe even with the breast cancer diagnosis.

The other thing is that we do offer a medicine which is a GRNH agonist which will kind of essentially shut down the ovaries during chemotherapy to help protect them so that when a young woman is done with chemotherapy, it helps the ovary kind of get back to normal a little bit sooner.

So, it sounds good in theory. Unfortunately, it’s not something that is covered by insurance companies right now. And so, fertility preservation is expensive. And so, the good thing is there are a lot of groups that put together packages and stuff for these young women to be able to afford it. But it is pretty pricey. So, for those that can afford it, it is a great option. And a lot of them do take advantage of it. I think there are a lot of misconceptions about it. Number one is that patients don’t really know if it’s safe.

Number two, they are scared about their overall diagnosis and a potential delay and 10 days might make some of them afraid that doing that is a good option. Another thing is when these women come in with a diagnosis of breast cancer, they see a surgeon, a medical oncologist, a radiation oncologist, a plastic surgeon.

And so a lot of times an extra appointment at that point in time is just really overwhelming for these women. So, our goal is to kind of refocus and say, “Hey, the good news is that with our modern therapies you’re going to be here for a long time. So, let’s plan for the future now so that in the future you’ve got options.”

Breast Cancer Before 40: What You Should Know

Breast Cancer Before 40: What You Should Know from Patient Empowerment Network on Vimeo.

Dr. Stephanie Valente reviews key information for women under the age of 40 with breast cancer, including risk, treatment approaches and the role of genetic testing.

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert here.

Related Program:

Breast Cancer Before 40: How Can I Preserve My Fertility?


Transcript:

Sure. So, when we talk about breast cancer in young women, usually we are referring to women under the age of 40. And the prevalence for breast cancer in general is one out of eight women. For women under the age of 40, it’s about a seven percent incidence of breast cancer. So, it’s about a seven percent incidence in the general population in the United States. So, that’s about 12,500 women per year are diagnosed under the age of 40 with breast cancer.

So, the prevalence has pretty much been the same over the years. We used to think that women diagnosed at a younger age had a more aggressive breast cancer. But the more we look at things, the more we realize that women under the age of 40 usually are diagnosed at a later stage because it’s not something that somebody in their 20s or 30s is thinking that a breast lump equates to cancer. So, these women unfortunately present at a later stage.

Many times, it’s because they are pregnant, breastfeeding or just not having any family history where the first thing they think of when they get a lump is that they actually have breast cancer.

So, the first thing is women under the age of 40 usually present at a later stage, meaning that they have larger cancers, and the cancers because they are larger have had more time to spread to the lymph nodes. So, these women they don’t necessarily have more aggressive breast cancers than older women, it’s just that it’s found at a later stage.

So, the treatment options are the same for young women with breast cancer. So, depending on the size of the tumor and the size of her breast, women are given the option for a lumpectomy which usually is follow by radiation versus a mastectomy. And studies have shown that either surgical choice is a good option for women. And that one surgery doesn’t make a young woman, or an older woman live any longer.

That the survival for breast cancer is based on stage not the choice of surgery that they pick.

So, one of the first things is that women under the age of 50 – the average age for breast cancer in the United States is between 64 and 68.

So, if you are under the age of 50 or under the age of 40 there’s a higher chance that maybe these women carry a gene that would increase the risk of getting breast cancer. And so nowadays, we test over 21 genes. But these genes can increase their risk of getting breast cancer not only in the breast they have the breast cancer in, but in their other breast as well. It also increases the risk for other types of cancers such as ovarian cancer. And they could potentially pass this gene on to their kids.

So, sometimes women – and this is the great thing about academic medicine. Everything is changing so quickly with the modern research. So, a lot of times a woman who is triple negative, which is an estrogen receptor negative breast cancer.

If they are genetic positive for the BRCA gene, they qualify for certain medications or chemotherapy that we know targets specifically that type of cancer and their gene. So, that’s why it is important for some of these women to get genetic testing to see if the certain chemotherapy regimens or medicines that we have would benefit their type of cancer.

So, one of the things for any woman diagnosed with breast cancer at a young age is to offer those women genetic testing. And sometimes it can be a relief or sometimes it can be very challenging for these women to think, “Oh my gosh. I have this gene. I’m at increased risk for more cancers.” And that potentially they could pass that on to their children.

So, having the women who come in meet with a genetics counselor to go over the risks. And the reality is that of all the women under the age of 50 that test for the gene, only 10 percent actually carry the gene.

So, the good thing is that 90 percent most likely don’t have the gene. But it still is an anxiety provoking thing for these women to go through.

Another thing is that these women a lot of times are younger. So, they have either two things – young children to take care of which is extremely difficult to mange an already stressful motherhood. You throw in a diagnosis of cancer, whether or not there is a dad involved or a father that needs to help out with these kids. A lot of times their families need to help out. So, we have a psych oncologist that’s part of our team. And it’s really great. How do you tell your kids you have cancer? And how do you manage kind of day-to-day life with going through this? So, that’s another great program that is offered. And importantly for a woman who doesn’t have children but maybe desires to have children or even to have more children than the ones that she has,
looking at fertility options for young women is huge.

So, we know that some of the chemotherapy that we give breast cancer patients decreases their ability to have children in the future. So, the chemotherapy can shut down the ovaries. So, sometimes women – and this is the great thing about academic
medicine. Everything is changing so quickly with the modern research. So, a lot of times a woman who is triple negative, which is an estrogen receptor negative breast cancer.

If they are genetic positive for the BRCA gene, they qualify for certain medications or chemotherapy that we know targets specifically that type of cancer and their gene. So, that’s why it is important for some of these women to get genetic testing to see if the certain chemotherapy regimens or medicines that we have would benefit their type of cancer.

So, the one thing is that I tell these women that breast cancer takes a good year between chemotherapy if they need it, surgery, radiation of they need it and the whole process of recovery. That is really takes a good solid year before they are kind of done going to their doctor’s appointments. But the reality is that for an early stage breast cancer, studies have show for young women the overall survival is over 92 percent. So, I say, “This is going to be a tough year. We are going to get through this together. And the good thing is that you are going to be alive in five, 10, 15, 20 years. And so, our goal is to get you the best quality of life not only now but in the future.”

As far as hope for young women with breast cancer, things are changing so fast. The medicine that’s out there – we’re doing these studies where women are getting chemotherapy and by the time they get to surgery about 40 to 60 percent of the tissue that I take out has no residual cancer. That’s phenomenal. That means that the medications that these women are getting are working really well for their cancer. And so, the hope is that in 10 years I don’t have a job because the medicine that they are getting works so well that the cancer can be removed without needing surgery. And so, I think in our lifetime we will find either a cure or a complete resolution of breast cancer.

Notable News July 2019

So much for the dog days of Summer. July was a super active Notable News month full of information. There are risks and recalls to be aware of, along with some very encouraging news about exciting new research and treatments. So, while you may not want to hear that you should probably consider getting a colonoscopy ASAP, you’ll be relieved to learn that some cancers may have much less invasive diagnostic tools on the horizon. Oh, and there are a couple links to some really interesting (although alarming) longer reads; just in case you’re embracing the dog days, and need some reading material, this summer.

Increased Cancer Risk

Colon cancer is on the rise for people younger than 50, reports cbsnews.com. The rate has increased over the past decade from 10 percent of all cases to about 12 percent. While there is no concrete explanation as to why colon cancer is increasing among the younger age group, one possibility is that it is linked to modern diets and the gut microbiome. Conversely, colon cancer rates are declining among those 50 and older, largely because of colonoscopy screenings which detect polyps before they become cancerous. Find out more below.

Breast implants that have been linked to cancer are being recalled, according to nytimes.com. The textured implants were banned in Europe late last year and are now being recalled in the United States by the Food and Drug Administration (FDA). The implants are linked to anaplastic large-cell lymphoma. It is a rare cancer of the immune system that develops in the tissue around the implant. Removing the implant and scar tissue around it is effective in curing the cancer in most cases, but if it is not found early it can spread and be deadly. Symptoms are swelling and fluid around the implant, and patients should have symptoms checked by their doctor. More information about the implants can be found below.

There is a link between radioactive iodine (RAI) treatment and cancer deaths, says cancer.gov. RAI has been commonly used to treat hyperthyroidism since the 1940s. An association between the dose of RAI treatment and long-term risk of death from cancers, including breast cancer, has been found in a study led by researchers at the National Cancer Institute. More research is needed to better understand the risks and the benefits of the treatments, but in the meantime, the information will help patients discuss hyperthyroid treatment options with their doctors. More information about the research can be found below.

Treatment and Detection

Immunotherapy may work in treating brain cancer, says medicalxpress.com. Researchers have found a way to make the CAR T immune therapy more effective against glioblastoma, the most common and most deadly form of brain cancer. Previous research showed that not all of the tumors could be targeted by the T cells. So, in order to more strategically target the tumors, researchers used a bi-specific T-cell engager, or “BiTE”, that makes it possible for CAR T cancer-killing cells to be sent to specific targets, making the treatment more effective. Learn more about the complicated, but promising, process below.

There may be a better, non-invasive way to detect bladder cancer, reports medicalnewstoday.com. Researchers in Spain have proposed using electronic tongues. The devices can detect or “taste” soluble compounds by using software and sensors. The tongues, used to analyze food, water, wine, and explosives, can also be used to detect diseases by testing samples of biofluid. Using the tongues to test urine samples could be an easy and inexpensive way to detect bladder cancer in the early stages. Learn more about the proposed tongue testing below.

Researchers may have found a new way to treat ovarian cancer, according to medicalnewstoday.com. Researchers have identified an enzyme known as IDH1 that encourages the growth of high-grade serous ovarian cancer, the most common form of ovarian cancer. The cancer is difficult to detect in early stages and hard to treat because it often develops a resistance to chemotherapy. Researchers found that when they blocked the IDH1 enzyme, the cancer cells were unable to divide and grow. The research also suggests that blocking the enzyme works on the cancer cells that have spread to other parts of the body as well as where the cancer originated. More information about this encouraging research can be found below.

Cancer-Causing Toxins

If you’ve never heard of ethylene oxide, you might want to consider reading the article ‘Residents Unaware of Cancer-Causing Toxins in Air’ from webmd.com. Ethylene oxide is an invisible chemical with no noticeable odor. It is used to sterilize medical equipment and make antifreeze, and it is on the EPA’s list of chemicals that definitely cause cancer. It is also an airborne toxin in areas that have been flagged as high-cancer risk, but many of the residents of those areas have no idea they are being exposed.

Another article worth reading this month can be found at huffpost.com. A new plastics plant is planning to come to an area in the middle of Louisiana’s “Cancer Alley”, and the residents, tired of cancer-causing chemical pollutants, are fighting back. Read about their path to empowerment below.


Resource Links:

cbsnews.com

Colon Cancer Study Finds Colon Cancer Rates Rising for Patients Under 50

nytimes.com

Breast Implants Linked to Rare Cancer Are Recalled Worldwide

cancer.gov

NCI study finds long-term increased risk of cancer death following common treatment for hyperthyroidism

medicalxpress.com

Immune therapy takes a ‘BiTE’ out of brain cancer

medicalnewstoday.com

‘Electronic tongues’ may help diagnose early stage bladder cancer

Could targeting this enzyme halt ovarian cancer?

webmd.com

Residents Unaware of Cancer-Causing Toxin in Air

huffpost.com

A Community In America’s ‘Cancer Alley’ Fights For Its Life Against A Plastics Plant

Notable News – June 2019

It’s official! The nation’s cancer mortality rate continues to decline, says cancer.gov. The finding was revealed in this year’s annual report regarding the status of cancer in the country. The report shows that cancer death rates have continued to decline in men, women, and children from 1999 to 2016. Specifically, lung, bladder, and larynx cancers are decreasing, which is attributed to the decline in tobacco use. Conversely, cancers related to obesity are increasing. The highest overall cancer incidence rates occurred in black men and white women. The lowest rates were among Asian/Pacific Islander men and women. In addition, researchers looked specifically at cancer trends among those aged 20 to 49. In this group women had higher cancer and death rates than men, which is the opposite of the data among all age groups. Breast cancer, thyroid cancer, and melanoma were identified as the most common cancers on the rise among 20 to 49 year old women. The report, published last month in the Journal of the National Cancer Institute, is put together by the National Cancer Institute (NCI), the Centers for Disease Control and Prevention (CDC), the American Cancer Society (ACS), and the North American Association of Central Registries (NAACCR). Find more detailed information about the annual report here.

The decline in cancer deaths just may have a lot to do with the amazing strides being made in understanding cancer and its risk factors, ways to diagnose it, and ways to treat it. Researchers at Yale have made a discovery about how metastasis, the spread of cancer, occurs on the molecular level that could lead to new ways of treating cancer, reports medicalexpress.com. While the study focused on renal cancer, understanding metastasis on the molecular level could lead to new testing and treatment for all types of cancer. Find more information about the study and the metastasis process here.

It’s important to know if you are at risk for certain cancers and having children through IVF may be one of them, reports thesun.co.uk. A 21-year study analyzing over 600,000 Danish women suggests that women who have had children using IVF are more likely to develop breast cancer. In addition, women who had their first child through IVF when they were 40 or older, were 65 percent more likely to develop breast cancer than women of the same age who conceived naturally. The drugs given to women during IVF to stimulate the ovaries may be the culprit. They increase levels of estrogen, a known factor in the occurrence of breast cancer. Make sure you are staying on top of your breast cancer screenings if you had children using IVF, and learn more about the study here.

Also reported by thesun.co.uk, is good news about early detection, specifically for prostate cancer. Scientists have developed a simple urine test that could show signs of prostate cancer five years early. The test, which could be available in as few as five years, looks for changes in specific genes. If the changes are noted, further testing is done. The process would mean that some men would not have to have invasive testing procedures and others would know of their prostate cancer risk earlier. Learn more about the promising new test here.

Finally, of interest this month is an article by theatlantic.com regarding the two technologies that are changing the future of cancer treatment, and the way in which oncologists are looking at treating the disease. The article points to immunotherapy and CAR T-cell therapy as kindler, gentler approaches to cancer treatment. Chemotherapy, which is the most successful treatment to date, as the article points out, can make the treatment process brutal. Oncologists are turning to the new therapies to treat cancer without the harsh side effects that come with chemo. The article is a quick read and it provides hope for anyone who is or may be affected by cancer. That means all of us. Check it out here.

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.

Notable News: October 2018

How tall are you? Do you eat breakfast cereal? What’s your blood pressure? Oh, and, moms, how old were you when you had babies? The answers to these questions just might be an indicator of your cancer risk. Sounds strange, doesn’t it? Well, if October’s Notable News teaches us anything, it’s that strange is not so unusual, especially when it comes to cancer risks.

The mysterious workings of the human body continue to offer up surprises, and appropriately enough for October, the latest surprise is about breast cancer, according to medicalexpress.com. For some time, scientists have known that women who have babies before the age of 30 have a reduced risk of getting breast cancer later in life, but now they know the specific week in which the risk reduction occurs. Women who have babies after 34 weeks averaged a 13.6 percent lower risk of developing breast cancer than did women who had no children. The risk reduction if the pregnancy ended just one week earlier was only 2.4 percent. Researchers don’t yet know what magic happens in the 34th week, but they do know that women must be under the age of 30 to benefit from it. More information can be found here.

While we’re on the subject of breast cancer, let’s talk about men because they get breast cancer, too. As Patient Empowerment Network blogger and breast cancer survivor Marie Ennis-O’Connor noted in her October 19 post, Beyond Pink: The Other Side of Breast Cancer Awareness and Lessons We’ve Learned From Each Other, breast cancer is not gender specific. While men make up less than one percent of all breast cancer occurrences, says breastcancer.org, an estimated 2,550 men in the United States have been or will be diagnosed this year. And because men are not routinely screened for breast cancer, they tend to be diagnosed when the disease is more advanced; therefore, it’s important for men to know the risk factors, which can be found here. While breast cancer awareness still focuses mainly on women, more attention is beginning to shift toward men, even making it’s way to primetime television. The series premiere of the new ABC drama A Million Little Things introduces a main male character who is a breast cancer survivor. More information about symptoms, diagnosis, and treatment of breast cancer in men can be found here. Please, take the time to find out if you, or the men you love, have any of the risk factors.

There’s a new risk factor to be mindful of…your height. That’s right. Your height. As reported by the guardian.com, the taller people among us are more likely to get cancer simply because they have more cells in their bodies. More cells means more opportunity for mutation. Apparently, it’s true for dogs, too. Bigger dogs, bigger risks. In humans, height seemed to cause an increased risk for 18 out of 23 cancers, including melanoma, which had a stronger link to height than researchers expected. Since there’s not much you can do about your height, researchers suggest that you focus on other risk factors instead, by maintaining a healthy weight and not smoking. Learn more about how height affects your cancer risk here.

You might want to consider breakfast cereal, too, reports freep.com. There is a chemical called glyphosate, the active ingredient in the weed killer, Roundup, that is showing up in products that are made with “conventionally grown” oats, which includes a lot of breakfast cereals. The International Agency for Research on Cancer says glyphosate is probably carcinogenic for humans, but Monsanto, the maker of Roundup, maintains the product is safe. While some experts say the information isn’t cause for hysteria, it is a good idea to pay attention to where your food comes from and what might be affecting it. You can find more about the glyphosate content in foods and which foods are affected here. It’s best to stay informed about the potential risks and use your best judgement.

The same holds true for those of you taking blood pressure medication. medicalexpress.com reports that some blood pressure medications might be linked to an increased lung cancer risk. The drugs are angiotensin converting enzyme inhibitor drugs (ACEIs), and the risk is elevated for people using the medication for five years or more. Overall, the risk is low, but is notable because of how widely ACEIs are prescribed. ACEIs are very effective at treating blood pressure and, if patients have concerns about any potential cancer risks, they should consider the risks and benefits with their doctors. There is still a lot more to be learned about ACEIs and their connection to lung cancer. You can find out more here.

Whether you’re a tall person who eats breakfast and has high blood pressure or you have some other strange cancer risk, the main thing to remember when it comes to risk factors is to stay informed, because when you have knowledge, you are empowered and that’s what it’s all about.

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 II

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

Patient Profiles: Breast Cancer Part I

Female breast cancer awareness, with it’s 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

My Breast Cancer Story

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.

Notable News: June 2018

There’s a little something for everyone in the news this month. Immunotherapy looks promising for men; lung cancer does not. More women can forego chemo, and African Americans and Latinos have a new warning sign. Preventable cancers are on the rise, but your amount of alcohol consumption might help you change that. There’s a lot of news this month, and it’s all right here so you can pay attention and stay empowered.

Speaking of paying attention, African Americans and Latinos have a new pancreatic cancer warning sign. Recent findings show late-onset diabetes, after age 50, is an early sign of pancreatic cancer in African Americans and Latinos, according to this report from accessatlanta.com. The link between diabetes and pancreatic cancer is still unclear, but the study showed that African Americans were three times as likely to get pancreatic cancer after developing diabetes, and Latinos were four times as likely. While pancreatic cancer is rare, you should discuss your risk with your doctor should you get a late-onset diabetes diagnosis.

Another new report offers good news for women. New evidence shows that many women with breast cancer can forego chemotherapy as part of their treatment, reports washingtonpost.com. Findings from the federally sponsored, largest ever breast cancer trial indicate that women who have the most common type of early-stage breast cancer, with low and moderate risk of recurrence, don’t require chemo after surgery and won’t be subject to the often harmful side effects. The study previously showed that women with low-risk of recurrence didn’t need chemotherapy, but there was some question about those with moderate risk. After further study of patients with moderate risk, researchers determined that those who did not undergo chemo did as well as those who did. The type of cancer studied is hormone-driven, has not spread to the lymph nodes, and does not contain the HER2 protein. The findings affect more than 85,000 women per year and are expected to change the way early-stage breast cancer is treated. More information can be found here.

There’s also good news for some men. An early stage trial that was presented at the annual meeting of the American Society of Clinical Oncology finds that immunotherapy looks promising as a treatment for some prostate cancer patients, reports bbc.com. Unfortunately, the treatment doesn’t work for the majority of patients, with only 10 to 15 percent of patients having any response to the treatment. Researchers are hoping to determine which patients are most likely to respond. More information can be found here.

However, worldwide the news is not quite as positive. Lifestyle cancers are on the rise and increased prevention is needed, reports sciencedaily.com. Lung, colorectal, and skin cancers have all increased worldwide over the past ten years while other cancers have decreased, according to the Global Burden of Diseases (GBD) study in which researchers analyzed 29 cancers and then reported their findings based on age and sex for 195 countries and territories. Lung and colorectal cancers are the leading causes of cancer deaths worldwide despite the fact that they can be preventable with such things as dietary changes and reduction in tobacco usage. The GBD also found that the United States was the third leading country in new cases of cancer per 100,000 people in 2016. Australia and New Zealand were the first and second respectively. Syria was the lowest in both new cases of cancer and cancer deaths per 100,000 in 2016. The country with the highest rate of cancer deaths per 100,000 in 2016 was Mongolia. Here you can find the full list of cancers analyzed in the GBD and where they are most likely to occur worldwide.

In other lifestyle news, your alcohol intake may be affecting your health. Less alcohol means less cancer or death, reports livescience.com. A new study reveals that light alcohol drinkers (fewer than seven glasses per week) had a lower risk of cancer and death than those who drank more alcohol or no alcohol at all. The study combines the risks of cancer and death from other causes whereas most studies pertaining to cancer risk and alcohol don’t factor in various causes of death. The combination of the two addresses the role of alcohol in overall health. More about whether or not you should put down your wine glass can be found here.

Finally, those cancers pertaining to lifestyle are often likely to come with stigmas attached to them. While most people believe lung cancer is preventable and caused by smoking, forbes.com contributor Bonnie J. Addario offers a different perspective about the stigma of lung cancer and how it has hindered research. Smoking is not the only cause of lung cancer, Addario points out. In fact, she states, 70 percent of lung cancer patients have long-since quit smoking or never smoked at all. Lung cancer, as we learned above, is the leading cause of cancer death worldwide, and Addario notes it is the leading cause of cancer death for both men and women in the United States. Perhaps it’s time we look at lung cancer differently, as Addario advocates here. It’s worth the read.

 

Notable News

All cancer, on a very basic level, is the same. It is the uncontrolled growth of cells. However, each type of cancer varies greatly and that is why early detection and individualized treatment is so important for patient health and survival. Fortunately, research breakthroughs come along every day that help pave the way to successful, individualized treatment.

A breakthrough in breast cancer research has come from an unlikely place, reports al.com. For his winning science fair project, high school senior Kenneth Jiao researched breast cancer and made a discovery that may help stop the spread of the disease to other organs. Through his research, Kenneth discovered that the CHD7 gene and it’s molecular processes may prevent metastasis. Kenneth’s project was inspired by a breast cancer scare his mother had a couple of years ago. His mother’s tumor turned out to be benign, but the worry and fear Kenneth felt during that time motivated him to look for ways to prevent the disease. Kenneth earned a $3,000 scholarship for his win and is moving on to the final round of competition in Washington, D.C. where he could end up winning $100,000 in scholarship money. You can learn more about Kenneth and his science fair experience here.

Researchers may have found an easier way to find successful, individualized cancer treatment by experimenting on tiny replicas of unhealthy cancer cells called tumoroids, reports economist.com. The tumoroids, which were developed from the cells of eight liver cancer patients, are unique in that they contain only cancerous cells. Traditionally cultured cells are often mixed with healthy cells, which can affect the results of the genetic analysis. Along with gaining a better understanding of the cancerous cells, the research team is using the tumoroids to test anti-cancer drugs. The hope is that, eventually, replicas will be made of individual patients’ cells which will then be examined and tested to determine personalized treatment options. Find more information about the tumoroid research, here.

About 70 percent of women diagnosed with the most frequently occurring type of ovarian cancer are diagnosed with an advanced stage of the disease, but according to cancer.gov new research may help to change that. A new study reveals that the most common ovarian cancer, known as HGSOC, may begin as lesions in the fallopian tubes several years before the start of ovarian cancer, which means there is a potential for early detection. The new study supports and expands on a study done ten years ago that identified fallopian tube lesions in women with the BRCA1 or BRCA2 mutations. The evidence now shows that HGSOC originates from the fallopian tube lesions whether the BRCA mutations are present or not. Not all ovarian cancers originate from the fallopian tube lesions and more research needs to be done, but there is hope for the possibility of early diagnosis and prevention. More details about the study and further research can be found here.

There are thousands of species of bacteria that live in and on our bodies and the ones living in our stomach, our stomach microbiome, may be a major factor in the risk of tumor development, according to new research reported by worldwidecancerresearch.org. The study shows a link between the microbial diversity of the stomach and varying health conditions — some cancerous and some not — and while many factors are involved in gastric cancer development, the study shows that the stomach microbiome may be one of those factors. Understanding and being able to change stomach bacteria may one day lead to the prevention or treatment of stomach cancer. Learn more about the exciting microbiome discovery here.

Check back next month for more exciting breakthroughs and in the meantime, keep up with the latest at PEN here.

Fact or Fiction: 10 Common Breast Cancer Myths Busted

October is Breast Cancer Awareness Month, and while many of us may think there is already plenty of awareness of breast cancer these days, it’s quite surprising how many myths exist alongside the facts.  Some breast cancer myths still continue despite a lack of evidence. A survey found that agreement with the phrase: “It seems like everything causes cancer” is on the increase. The danger is that when people believe this, confusion and misinformation about risk factors also increase. This can lead to unnecessary worry and can even hinder good prevention and treatment decisions.  So let’s untangle the facts from the fiction by busting ten of the most common myths which persist about breast cancer.

 

Myth #1: Finding a lump in your breast means you have breast cancer

Fact: Most breast lumps are caused by benign (noncancerous) changes, cysts, or other conditions.

Breast tissue is changing all the time because of fluctuating hormone levels, especially during times of menstruation and breastfeeding. It’s important to be aware of how your breasts normally look and feel, and know what changes to look for.

Take Action: While most breast lumps will not turn out to be cancer, lumps that feel harder or different from the rest of the breast (or the other breast), or change over time, should always be checked by your doctor.

 

Myth #2: Feeling pain in your breast is a symptom of breast cancer

Fact: Most breast cancers do not cause pain in the breast (although some do).

Many women experience breast pain or discomfort in the week leading up to their period. The pain usually goes away after menstruation.  Other breast conditions, such as mastitis (an infection of the tissue of the breast that occurs most frequently during breastfeeding), may cause a more sudden pain.

Take Action: If you have breast pain that is severe or persists and is not related to the menstrual cycle, you should be checked by your doctor.

 

Myth #3: Breast cancer is a hereditary disease

Fact: Only 5% to 10% of breast cancers are thought to be hereditary. The other 90% are largely due lifestyle and environmental factors. 

The risk in a person believing this myth is that they might think there is nothing they can do to prevent breast cancer if it is already in their family. Genetic testing can help you understand your inherited risk and allow you to make choices about your future care.
Some high-risk women also choose to have a prophylactic mastectomy to decrease their risk.

Take Action:  Cancer is a complex group of diseases with many possible causes, including lifestyle factors such as smoking, diet, and physical activity. Lower your risk of developing breast cancer by maintaining a healthy weight, exercising regularly, and limiting the amount of alcohol you drink.

 

Myth #4: Only women get breast cancer

Fact: While the incidence of breast cancer in women is significantly higher than in men, men can get breast cancer.

Many people don’t think of men as having breasts. In fact both men and women have breast tissue, although men have much smaller amounts than women. According to the National Breast Cancer Foundation, men carry a higher mortality than women do, primarily because awareness among men is less and they are less likely to assume a lump is breast cancer, which can cause a delay in seeking treatment.

Take Action:  Know the signs of male breast cancer. Symptoms include a hard lump underneath the nipple and areola and color change in the surrounding area.

 

Myth #5: Breast cancer only occurs in post-menopausal women

Fact: While it is true that the older a woman is, the higher her breast cancer risk becomes, breast cancer does occur in younger women.

Although breast cancer in young women is rare, more than 250,000 women living in the United States today were diagnosed with it under age 40[1]. In young women, breast cancer tends to be diagnosed in its later stages and be more aggressive. Young women also have a higher mortality rate and higher risk of metastatic recurrence (return of breast cancer in areas beyond the breast).

There is no effective breast cancer screening tool yet for women under 40, most of whom have dense breast tissue that prevents routine mammograms from being a useful screening tool.

Take Action:  Being breast aware is very important. Become familiar with how your  breasts normally look and feel and, if you notice a change, you should see your doctor as soon as possible.

 

Myth #6: Wearing an underwire bra causes breast cancer  

Fact: Claims that underwire bras cause breast cancer have been widely debunked as unscientific.

According to the myth, wearing your bra every night or for too long daily prevents your pores from being able to breathe. Sweat accumulates and toxins build up which are believed to cause breast cancer. Another version of this myth is that wearing a bra which is too tight or sleeping in your bra can cause breast cancer. The American Cancer Society (ACS) states “we do not know of any epidemiologic studies published in scientific journals that suggest bras directly contribute to breast cancer.”

 

Myth #7: Deodorants can cause breast cancer

Fact: There is no evidence to back the claims that deodorants and antiperspirants cause cancer.

People sometimes worry about whether chemicals in common products such as cosmetics or toiletries could cause cancer, but there is no good scientific evidence to show that these products affect the risk of cancer. According to Breastcancer.org, even the strongest antiperspirant doesn’t block all perspiration in the armpit. Most cancer-causing substances are removed by the kidneys and released through urine or processed by the liver. Toxins are cleared by lymph nodes and not by the sweat glands.

Take Action: If you still have concerns about the link between antiperspirants and breast cancer, see the NCI fact sheet on Antiperspirants/Deodorants and Breast Cancer for more information.

 

Myth #8: Breast cancer is a single disease

Fact: Breast cancer is not one disease, but a complex group of different types of tumours.

Until quite recently, breast cancer was thought of as one disease, so everybody got much the same treatment, which led to overtreatment for some patients.  We now know that at a molecular level tumors act and respond to treatments differently.  Researchers have to date classified breast cancer into 10 different subtypes.  Having a more detailed system of tumor categories can help tailor treatment to individual patients and predict women’s survival more accurately.

 

Myth #9:  Stress causes cancer

Fact:  The scientific evidence that stress causes cancer is not conclusive.

Despite studies which show weak evidence of an association between stressful events and a diagnosis of cancer, many people still hold the belief that stress is a factor in causing cancer. It’s unrealistic to think we can avoid stress completely. Everyone feels stressed at some point in their lives. But long periods of stress can cause mental health problems such as anxiety and depression and can contribute to physical health problems such as high blood pressure, heart disease, and ulcers. It makes sense then to get our stress levels under control.

Take Action: Adopt healthier coping mechanisms, such as learning stress-management techniques, taking the time to eat healthily and exercising more.

 

Myth #10:  Mammograms cause breast cancer

Fact: While mammograms do involve radiation exposure, the dose used is extremely low.

A mammogram (an x-ray of the breast) currently remains the gold standard for the early detection of breast cancer. Mammograms can detect lumps well before they can be felt, and the earlier that lumps are caught, the better one’s chances for survival. While it’s true that radiation is used in mammography, the amount is so small that any associated risks are tiny when compared to the benefits.

Take Action: According to the National Cancer Institute, the standard recommendation is an annual mammographic screening for women beginning at age 40. Base your decision on your physician’s recommendation and be sure to discuss any remaining questions or concerns you may have with your physician.

To wrap up, certain myths about breast cancer, though inaccurate, can nevertheless seem to make sense when we hear them repeated often enough.  While some risk factors for breast cancer are out of our control, knowing and understanding our risks will help us make the best choices possible for ourselves and our loved ones.

[1] Young Survival Coalition statistics on breast cancer in younger women.

 


For information on galactocele, please check out the blog What is a Galactocele, and What Can I Do About It? and 12 Breast Cancer Myths And Facts You Should Be Aware Of

Patient Profile: Dana Oakes

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.”

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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