Super ASK Patient: Marilou Shares Her Experience as a Young Woman with Advanced Cervical Cancer


 
Marilou Gougeon received a diagnosis of early stage cervical cancer in November of 2012. By 2015, her cancer had progressed to stage 4, and in 2016 she reached out to ASK Cancer Commons for guidance on what to do next. Here, she shares her unique perspective on cancer and how it has impacted her life, as well as her thoughts on the difficulty faced by patients as they navigate cancer treatment.

 

Can you tell me a bit about yourself?

At 34 years old, when I was first diagnosed, I had a successful career in the Canadian federal government and a spouse with whom I wanted to have a biological child. Travelling abroad was at the center of our lives.

Now, I am 39 years old and I have incurable cervical cancer. I am not able to work anymore because of the treatment side effects, particularly chronic fatigue and anxiety. But I try to live the most normal life possible, within the limit of my “new normal” life.

My greatest passion is travelling. I have visited around 20 countries in five continents. I really feel that my heart is in Italy, and my soul in Japan. I am especially interested in almost everything related to Japan—the culture, people, craft, history, society, and more. I got married in a wonderful Japanese furisode (a style of kimono).

I always say that travelling is one of the therapies that has helped save my live. However, because of all the cancer treatments that I have received, I don’t have a lot of energy anymore, so I have adopted the “slow travel” concept and I really enjoy it.

Despite the diagnosis, I remain optimistic and I still have many dreams and plans for the future. And my greatest accomplishment would be to become the adoptive mom of a little angel from Vietnam. Because of my terminal status, we had to stop all our adoption plans, but we never know…

How were you first diagnosed with cervical cancer? Did you have any telltale signs or symptoms?

The first sign was that I had abnormal bleeding after sexual intercourse. I’d had normal Pap tests each year since my teenage years, but my most recent Pap test at the time did not detect my lesion; it was located too deeply in the endocervix.

At first, I was diagnosed with cervical cancer at the earliest stage, called “in situ,” caused by HPV 16. The gynecologist was convinced that a “simple” conization (surgery to remove a small amount of abnormal cervical tissue) would completely eliminate the small one-millimeter lesion, and that I would be cancer free. So at first, I was really not afraid or concerned. This little surgery is performed in a lot of women every day (my mother and sister-in-law have had it, and they both have been healthy for many years since).

How did your cancer progress, and what were your treatments?

In 2013, I received a radical trachelectomy, and in 2014 I received a radical hysterectomy, 35 rounds of external radiation, and six cisplatin treatments. In 2015, metastases were found on both of my lungs, and I was restaged to 4b. I received six carboplatin-taxol treatments from July to December of that year. In 2016, I had no evidence of disease (NED) until July, when a CT scan showed that a tiny nodule had been growing on my left lung. I contacted Cancer Commons in October of that year, just before receiving the results of the October scan. I wanted to receive professional advice to help me prepare a treatment plan, in case I needed to enter a clinical trial.

Marilou (middle) with her mom and aunt

How did you hear about Cancer Commons, and what were you hoping for when you reached out?

I heard about Cancer Commons while participating in a social media forum hosted by Inspire. One of the women on the forum had a good experience and suggested contacting Cancer Commons in order to receive professional guidance to navigate the complex world of clinical trials.

As a patient, I have encountered a lot of difficulties over the years. In general, oncologists don’t have time to keep themselves informed and really up to date about scientific developments, which now occur at a really fast pace. Also, oncologists are not well-informed about clinical trials being conducted at other cancer centers.

Given this situation, I understand that I should become my own advocate and become (and stay) well-informed about my illness and treatment possibilities. However, as a patient with no scientific background, I faced challenges: How could I be sure which drug molecules would be the best ones to try for my specific case, and which clinical trial should I choose? What are the latest scientific developments in cervical cancer?

Moreover, being French-Canadian, English is my second language, and it is sometimes difficult to truly understand the subtleties of some scientific articles.

These are some of the reasons why I decided to contact Cancer Commons. After having had a look at the website and the board of directors, I understood that Cancer Commons was serious and professional.

You received guidance from our chief scientist Emma Shtivelman. How has Emma helped you?

I always say that Emma was an angel that appeared in my life. Rapidly, I saw that her advice was professional and that her insights matched the latest publications, so I have developed very strong trust in her.

As a molecular and cellular biologist, she explained to me all the scientific facts that I didn’t understand. We discussed the latest publications about cervical cancer, immunotherapy, and targeted therapy. She helped me to determine which drug would be the best choice in my personal situation.

Moreover, what I appreciate the most about Emma is her human goodness and empathy. I have never felt I was just a case for her. She is really dedicated to the patient.

Also, knowing that Emma is there helps to relieve a lot of stress because patients often don’t have a lot of time with their oncologists, so a lot of questions are not always fully answered. With Emma, I know that I can reach her almost any time and she will have a professional answer to provide.

In a perfect world, I see Cancer Commons’ services as an integral part of a patient’s treatment plan. In every cancer center, patients should have access to a professional like Emma who can help them with those kinds of questions.

Where are you now in terms of treatment and prognosis?

Last spring, I was lucky to have the opportunity to receive stereotactic body radiation therapy (SBRT), which is a really precise radiotherapy, to treat the metastatic tumors on my lungs. My latest scan results were good; one tumor disappeared and the other ones are getting smaller. We will have more answers with my next scan in November. Except for some fatigue, the secondary side effects are nonexistent.

My oncologists really don’t know about my prognosis. It is really rare that a patient who is first diagnosed with “in situ” cervical cancer reaches a similar situation with distant metastasis. But if I consider the statistics, which predict about one year survival after metastasis, I have already beat them!

My next treatment will probably be through a clinical trial. Scientists know that with recurrent cervical cancer, traditional treatments stop working sooner or later. And doing too many chemotherapy treatments could diminish the chances of being accepted in some clinical trials, so I need to choose each treatment strategically.

How have you dealt with your side effects?

The major side effects for me are chronic fatigue and anxiety. I have been “lucky” since a lot of women who have received the same types of treatment have had more serious side effects; for example, bowel or bladder damage caused by radiation therapies. Luckily, that hasn’t happened in my case.

For anxiety, I have been treated by a wonderful psychologist and psychiatrist. Medication helps, but I also meditate and read literature about Buddhist philosophy. Strange to say but astrophysics and quantum physics theories make me think about my tiny place within the universe and help me to cope with my fear of death.

For chronic fatigue, I take medication used in the treatment of narcolepsy. It helps me to have a more “normal” afternoon. However, my energy level is still really low, so I need to adapt and plan my days as a result. Now, I appreciate every moment when I am doing an activity, and I try to sleep and rest a lot.

I have a completely different life compared to other people my age. I really think that with this kind of situation (major disease at a young age), adaptability is the key to keep a healthy mind.

Marilou with her husband

How else has cancer affected your life?

I enjoy every moment, at a slower pace. I have completely changed my lifestyle (no more “cult of being busy” and trying to meet society’s competitive standards). I place my family and my friends at the heart of my life. I try to develop more compassion—for others, but also toward myself. I have never been so close to my mother, and I have realized how good a person my husband is and how deeply I am in love with him. I have never been so happy!

You mentioned that you are involved in an online cervical cancer discussion forum. How has it helped you?

The Inspire forum has been a great resource in terms of sharing experiences with other cervical cancer patients. It is where I was first informed about the existence of clinical trials and Cancer Commons. I am also member of some open and closed Facebook groups (managed from the U.S., Canada, and Europe) for advanced cervical cancer patients.

I am looking into getting involved with an organization called Cervivor because they would like to promote clinical trials accessible to women with cervical cancer via their website. And I follow the top U.S. cancer centers and gynecological cancer organizations’ posts on social media.

On a daily basis, I read research results presented at international conferences, medical news, and the most recent scientific articles. Being involved in social media and reading a lot of scientific news has helped save my life; I am convinced of that.

What advice would you give to a woman who is newly diagnosed and is starting to consider various treatments, including clinical trials?

Over the years, I have spoken with a lot of cancer patients in Canada, Europe, and the U.S., and it seems that the same problems exist all over the world (for instance, knowledge and accessibility about new cancer treatments).

Cancer patients need to be involved in their own medical decisions. The time when doctors possessed the science and patients simply accepted that is now over. Today, I see oncologists as one source of information among many others (even if it is an important one). Additional information exists, it is available, and cancer patients need to understand that. And they need to understand that, even in a reputable cancer center, doctors are not all equal in terms of knowledge, competency, thinking out of the box, patient dedication, and more. Also, if needed, patients can look to other hospitals’ and cancer centers’ clinical trial options (inside or outside their city or province), in order to receive the best treatment.

Over the years, I have seen the worst and the better. Patients should never accept a negative answer or a decision they are not comfortable with. I have seen many cancer patients being told that there was nothing else that could be done for them with regular protocol treatments. However, those oncologists never mentioned clinical trial options. Only after patients have requested second and third opinions are they directed to a clinical trial, and these patients are still alive many months or years after their death sentence. Personally, I cannot accept or tolerate this difference between oncologists’ and cancer centers’ approach and vision.

People always mention that cancer is a battle. Personally, I don’t think that today it is the cancer itself which is a battle. The real battle is more the bureaucratic barriers, the costs of new cancer treatments, and obtaining the best treatment at the best time.

Is there anything else you’d like to spread the word about?

As a society, we need to begin a dialogue/debate about the cost of new molecular drugs. We also need to discuss the inequality in terms of treatment options between hospitals (a lot of statistics already exist on the topic of regional hospitals versus bigger cancer centers).

Patients need to be more informed about the real process behind clinical trials. We need to be informed of how hospitals, the government, and pharmaceutical companies collaborate, negotiate, and determine which treatments will be available where. We need to know why some centers only test some obscure molecules while other hospitals offer a wide variety of drug and clinical trial options. Patients also need to know which doctor or hospital is the best for their specific case. And, finally, in order to choose the best treatment center, patients need to be informed about hospitals’ strategies in terms of development, financing, and scientific research priorities.

Cancer Commons helps tremendously with this gap in knowledge, but much more work needs to be done to improve the system for patients.

***

Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver or Super Advocate. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.


Cancer-Related Depression

Excerpt:

“Being diagnosed with cancer is a stressful, life-changing event that can evoke feelings of fear, worry, sadness, and anger. Depression gives one feelings of hopelessness and helplessness, disinterest in previously enjoyable activities, and a consistently down and sad mood. Depression often interferes with one’s ability to work, sleep, eat, and enjoy life. Patients with cancer are especially at risk for depression because of the physical changes and limitations from symptoms and treatment as well as of the uncertainty their treatment holds on their lives.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


Hormone Therapy for Prostate Cancer Tied to Depression

Excerpt:

“Hormone therapy for prostate cancer may increase the risk for depression, a new analysis has found.

“Hormone therapy, or androgen deprivation therapy, a widely used prostate cancer treatment, aims to reduce levels of testosterone and other male hormones, which helps limit the spread of prostate cancer cells.

“From 1992 to 2006, researchers studied 78,552 prostate cancer patients older than 65, of whom 33,382 had hormone therapy.”

Go to full article.

Do you have questions about this story? Let us know in a comment below. If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our Ask Cancer Commons service.


Clinical Trial Reduces Stress of Cancer Caregivers

“Stem cell transplant is essential in the care of many blood cancers, but leaves patients requiring in-home care for months after. Frequently the role of caregiver falls to family or other committed members of the patient’s support network. Previous work shows dramatically increased stress in cancer caregivers, directly impacting the caregiver and indirectly impacting the cancer patient via reduced quality of care. A randomized control trial funded by the National Cancer Institute by members of the University of Colorado Cancer Center, published in the journal Bone Marrow Transplantation, demonstrates an intervention that successfully reduces the stress of caregivers in the context of cancer patients treated with stem cell transplantation.

” ‘The first 100 days after a stem cell transplant is a critical period for patients in which caregivers are called upon to deliver around-the-clock care, providing support for patients’ everyday needs and also patients’ emotional health. But who takes care of the caregivers?’ says Mark Laudenslager, PhD, investigator at the CU Cancer Center, director of the Behavioral and Endocrinology Laboratory at the CU School of Medicine, and the paper’s first author.”


Active Surveillance Avoids Urinary, Sexual Declines of Radical Prostatectomy

“Active surveillance and radical prostatectomy conferred similar mental health outcomes in patients with low-risk prostate cancer; however, the surgical procedure was linked to worse urinary and sexual outcomes, according to study results.

“ ‘It is important to consider health-related quality-of-life outcomes when deciding on an approach to minimize both the physical and psychological burden of the disease and its treatment,’ Jennifer Cullen, PhD, MPH, of the Center for Prostate Disease Research at the Department of Defense, and colleagues wrote. ‘To help patients weigh the costs and benefits of [prostate cancer] management strategies, studies that examine the impact of treatment choice on short-term and long-term [health-related quality of life] are warranted. Patients who are managed with [active surveillance] may be spared some of the decline in physical [health-related quality of life] compared with patients who receive definitive treatments, such as radical prostatectomy, but they could concomitantly suffer greater mental health declines because of the anxiety of delaying therapy.’ “

“Cullen and colleagues evaluated data from 389 patients with low-risk prostate cancer enrolled in the Center for Prostate Disease Research Multicenter National Database. Of the patients, 58.6% (n = 228) of patients underwent radical prostatectomy, whereas 19.8% (n = 77) received active surveillance. The remaining 84 patients selected other treatment options and were excluded.”


End of Life Planning Does Not Make Cancer Patients Hopeless or Anxious

“For a small group of advanced cancer patients, using an online tool for learning about end-of-life medical decisions and developing an advance directive document did not lead to psychological distress, according to a new study.

“ ‘One thing we noticed is that many patients with advanced cancer had not had these conversations,’ said lead author Dr. Michael J. Green of the humanities and medicine departments at Penn State College of Medicine in Hershey, Pennsylvania.

“ ‘When we talked to the oncologists about it, a response we heard again and again is, “it’s not appropriate at this time, it’s going to make them anxious, take away their hope”,’ Green told Reuters Health.

“He and his team set out to see if it was true that working through end of life planning took away cancer patients’ hope or raised their anxiety levels.

“They used an interactive decision aid with audio and video elements called ‘Making Your Wishes Known: Planning Your Medical Future, (MYWK) which is available online.”


Worse Anxiety/Depression Symptoms in Patients Adopting ‘Helper’ Role in Breast Cancer Internet Support Group

“In a study reported in the Journal of Clinical Oncology, Lepore et al found that patients assigned a helper role in a breast cancer Internet support group had worse anxiety/depression symptoms after completion of the intervention than those not assigned a helper role…

“In the study, 183 women diagnosed in the past 36 months with nonmetastatic breast cancer who reported elevated anxiety or depression were randomly assigned to a standard Internet support group condition (n = 95) or an enhanced prosocial condition (n = 88). Both conditions included professionally facilitated live 90-minute weekly chat sessions for 6 weeks and access to a discussion board…

“The investigators concluded: ‘Despite the successful manipulation of supportive behaviors, the [prosocial Internet support group] did not produce better mental health outcomes in distressed survivors of breast cancer relative to [a standard Internet support group]. The prosocial manipulation may have inadvertently constrained women from expressing their needs openly, and thus, they may not have had their needs fully met in the group.’ ”


Women with Breast Cancer Demonstrate Elevated Long-Term Risk for Depression

“Women with breast cancer demonstrate increased risk for depression several years after diagnosis, according to study results.

“Nis P. Suppli, MD, of the Danish Cancer Society Research Center in Copenhagen, Denmark, and colleagues used Danish national registries to obtain data on nearly 2 million women who had no diagnosis of cancer and no major psychiatric disorder.

“Researchers followed the cohort from 1998 to 2011 and tracked incidence of breast cancer diagnoses. They also monitored for two outcome measures, first hospital contact for depression and redeemed prescriptions for antidepressants.

“Suppli and colleagues identified 44,494 women diagnosed with breast cancer during the study period.

“During the first year after diagnosis, the rate ratio for first hospital contact for depression was 1.7 (95% CI, 1.41-2.05), and the ratio remained significantly elevated after 3 years of diagnosis. The rate ratio for redemption of prescriptions for antidepressants was 3.09 (95% CI, 2.95-3.22), and the ratio remained significantly elevated 8 years after diagnosis.”


One in Three People with Cancer Has Anxiety or Other Mental Health Challenges

“Researchers in Germany report that nearly a third of more than 2,100 patients with cancer interviewed at inpatient and outpatient care centers experienced a clinically meaningful level of mental or emotional distress that meets the strict diagnostic criteria for mental disorders including anxiety, depressive and adjustment disorders during the prior four weeks. The prevalence of these issues varied by cancer type. The highest prevalence was found among patients with breast cancer (42%) and head and neck cancer (41%), followed by malignant melanoma (39%). The lowest prevalence was seen among patients with prostate cancer (22%), stomach cancers (21%), and pancreatic cancer (20%). The study — the largest to date assessing the mental and emotional health of patients with cancer using a fully standardized, diagnostic face-to-face interview — is published in the October 6 issue of the Journal of Clinical Oncology.”