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.


Cervical Cancer Declining, but HPV-Related Cancers of Anus and Throat Increasing

“Although cervical cancer is declining, human papillomavirus (HPV)-related cancers of the base of the tongue and tonsils (oropharynx) as well as anal canal cancers are increasing, according to a population-based study in Alberta, Canada, in CMAJ Open.

“Human papillomavirus, long linked to cervical cancer, is estimated to cause 5.2% of all cancers worldwide; a link to cancers of the oropharynx and anal cancer has been recently confirmed.

“The study, which includes cancers diagnosed over the last 35 years (between 1975 and Dec. 31, 2009) from the Alberta Cancer Registry, looked at trends in HPV-related cancers. During the study period, 8120 HPV-associated cancers were diagnosed in the province, of which 56% were cervical cancers and 18% oropharyngeal cancers. Although the highest number of cases was seen in the older age groups (55-64 and 65-74 years), the greatest percentage increase in oropharyngeal cancers over this period was seen in those in the < 45-years-old group among men. Anal cancer in women doubled, from 0.7 to 1.5 per 100 000 people. The highest increase in women was in those under age 45 years.

” ‘The increases in the incidence of oropharyngeal cancer among younger men and of anal cancer among younger women are disturbing, because there are no screening programs for early detection of these cancers,’ says Dr. Lorraine Shack, Assistant Professor, Department of Oncology, Cumming School of Medicine, University of Calgary, Alberta, with coauthors.”


AstraZeneca Widens Cancer Immunotherapy Net with Advaxis Trial

The gist: Cancer treatments called immunotherapies, which boost a patient’s own immune system to fight cancer, are currently a very active focus of research for drug companies. Two drug companies have now decided to collaborate and combine their two immunotherapy drugs to see how well they work for people with HPV-associated cervical cancer or head and neck cancer. The two companies will jointly run a clinical trial with volunteer patients to test the combination treatment, in the hope that the combo will work better than either drug alone. The drugs being combined are MEDI4736 and ADXS-HPV.

“AstraZeneca is casting its net wider in the hot cancer immunotherapy field through a clinical trial collaboration with U.S. biotech firm Advaxis that will test drugs from both companies in combination.

“Britain-based AstraZeneca – the target of an unsuccessful $118 billion takeover bid by Pfizer earlier this year – is banking on widespread use of its immunotherapy drugs, which boost the body’s immune system, to fight a range of tumours.

“Under the deal with Advaxis, its so-called anti-PD-L1 drug MEDI4736 will be evaluated in a Phase I/II clinical study together with the U.S. company’s cancer vaccine ADXS-HPV in patients with human papillomavirus (HPV)-associated cervical cancer and HPV-associated head and neck cancer.”


A Negative HPV Test May Predict Lower Cervical Cancer Risk than a Negative Pap

“In the US, cotesting for human papilloma virus (HPV) and Pap testing for cervical cancer every 5 years for women aged 30-65 years is now recommended. However, HPV testing alone may provide better reassurance against cervical cancer than Pap testing alone and similar reassurance to cotesting, according to a study published July 18 in the Journal of the National Cancer Institute.”In a comparison of the three strategies, Julia C. Gage, Ph.D., M.P.H., of the Division of Cancer Epidemiology and Genetics, National Cancer Institute, Bethesda, MD, and colleagues analyzed data from the Kaiser Permanente Northern California (KPNC) large integrated health delivery system, which screened women age 30-64 since 2003 with both HPV and Pap testing. Data were available through 2012, and over 1 million women were screened at approximately 3-year intervals, with a mean follow-up time of 4.36 years. For each testing strategy, they estimated the cumulative risk of cervical cancer after a negative test result.

“The researchers found that the 3-year cancer risks after a negative HPV-alone test result were lower than those for a Pap-alone negative result. In addition, the 3-year cancer risks after a negative HPV-alone test result were similar to the 5-year cancer risk for a co-test negative result. Gage et al. write ‘In conclusion, we find that primary HPV testing every 3 years might provide as much, if not more, reassurance against precancer and cancer, compared to primary Pap testing every 3 years and cotesting every 5 years.’ However, the authors note that a screening program based on only one or the other test alone, rather than a cotesting program like that at KPNC, might give somewhat different estimates. They urge studies of screening programs in different health-care settings and populations to identify the optimal screening strategy and interval.”


Preclinical Study Suggests HPV Eradicated by AHCC Supplement

“Treating cervical cancer cells with AHCC led to the eradication of HPV, human papillomavirus, as well as a decrease in the rate of tumor growth in-vitro and in-vivo, in research presented at the Society of Gynecological Oncology 45th Annual Meeting on Women’s Cancer in Tampa, Florida. The study was led by Dr. Judith A. Smith, Pharm.D., at the University of Texas Health Science Center (UTHealth) Medical School at Houston.

“In the study cervical cancer cells were treated with AHCC and incubated for 72 hours with sampling every 24 hours. The study was then repeated in two orthotopic mouse models, one HPV positive and other HPV negative control. The HPV expression was eradicated with once daily AHCC dosing for 90 days with durable response after 30 day observation off treatment. Dr. Smith then repeated the study to confirm findings and added sampling for correlative testing of immune markers to determine the mechanism by which AHCC eradicates the HPV virus.

“These data suggest AHCC can eliminate HPV infections and may have a role in the prevention of HPV-related cancers. A confirmatory pilot study in HPV+ women is underway at UTHealth Women’s Center.

” ‘The results of this study were very encouraging,’ said Dr. Smith, Associate Professor at the UTHealth Medical School. ‘This study, initiated in 2008, shows that by itself AHCC has the potential to treat the HPV infection,’ she said. Smith’s previous study evaluated AHCC integration with common chemotherapy agents used for the treatment of ovarian cancer, to screen for potential drug interactions and improvement in activity.”


High-Risk Human Papillomavirus-Positive Lung Cancer: Molecular Evidence for a Pattern of Pulmonary Metastasis

hrHPV presence in a tumor with primary presentation in the lungs signifies pulmonary metastasis from a primary hrHPV-positive cancer elsewhere in the body. In this study, no support was found for an attribution of hrHPV infection to the development of primary lung cancer.


High-Risk Human Papillomavirus-Positive Lung Cancer: Molecular Evidence for a Pattern of Pulmonary Metastasis

Infection with high-risk types of human papillomavirus (hrHPV) is associated with cervical, anogenital, and oropharyngeal cancers. Since a causal contribution of hrHPV infection to lung cancer (LC) is still a matter of debate, a comprehensive study was performed to delineate hrHPV involvement in LC.

hrHPV presence in a tumor with primary presentation in the lungs signifies pulmonary metastasis from a primary hrHPV-positive cancer elsewhere in the body. No support was found for an attribution of hrHPV infection to the development of primary LC.


Some lung cancers linked to common virus

A common virus known to cause cervical and head and neck cancers may also trigger some cases of lung cancer, according to new research presented by Fox Chase Cancer Center at the AACR Annual Meeting 2013 on Wednesday, April 10. Examining tissue samples from lung cancer patients, the researchers found that nearly 6% showed signs they may have been driven by a strain of human papillomavirus (HPV) known to cause cancer.