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.


Super ASK Patient: Phil Kauffman Finds Peace in a Pragmatic Approach to Lung Cancer Treatment

In November of 2014, Phil Kauffman went to his primary care doctor with what he thought was a broken rib. The doctor advised him to let it heal on its own—a standard approach for such maladies.

Phil, a retired engineering consultant who lives near San Diego, California, with his wife (their two daughters are grown), went home and waited for his rib to heal, but the pain stuck around for months.

In March of 2015 his doctor ordered an X-ray, but instead of a broken rib, it revealed suspicious spots in Phil’s lung. A CT scan found five lesions characteristic of lung cancer. His rib pain was caused by pleural effusion (liquid) in his right lung, which was extracted, and an examination of that liquid confirmed a diagnosis of stage IV non-small cell lung cancer (NSCLC).

Phil remembers that during the first week after his diagnosis he was paralyzed with fear. His brother in law, a physician, helped him snap out of it, assuring him that his treatment options guaranteed a survival period of at least a few years or maybe more, and that cancer research was progressing at such a fast rate that the prospect of extending his lifetime beyond a couple of years was good. Continue reading…


Popular Prostate Cancer Therapy Is Short, Intense and Unproven

Excerpt:

“After learning he had early stage prostate cancer, Paul Kolnik knew he wanted that cancer destroyed immediately and with as little disruption as possible to his busy life as the New York City Ballet’s photographer.

“So Mr. Kolnik, 65, chose a type of radiation treatment that is raising some eyebrows in the prostate cancer field. It is more intense than standard radiation and takes much less time — five sessions over two weeks instead of 40 sessions over about two months or 28 sessions over five to six weeks.

“The newer therapy is surging in popularity, but no one knows whether it is as effective in curing prostate cancer, or how its side effects compare.”

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.


Updated Data on SBRT Radiation for NSCLC Lung Cancer Confirm Benefits of ‘One and Done’ Approach

Excerpt:

“New research led by a radiation oncologist at Roswell Park Cancer Institute indicates that less may be more when it comes to some forms of radiation therapy for cancer. In a presentation highlighted in a plenary session today at the Multidisciplinary Thoracic Cancers Symposium in San Francisco, California, Anurag Singh, MD, shared updated evidence that patients receiving stereotactic body radiation therapy (SBRT) as treatment for non-small cell lung cancer (NSCLC) benefit as much from a single fraction, or dose, of radiation as they would from the standard three-dose treatment schedule — and with significant advantages in terms of convenience for patients and caregivers.”

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.


SBRT Offers Prostate Cancer Patients High Cancer Control and Low Toxicity in Fewer Treatments

Excerpt:

“High dose stereotactic body radiotherapy (SBRT) for men newly-diagnosed with low- or intermediate-risk prostate cancer results in shorter treatment times, low severe toxicity and excellent cancer control rates, according to research presented today at the 58th Annual Meeting of the American Society for Radiation Oncology (ASTRO). The study is the first large, multi-institutional study of SBRT in prostate cancer with long-term follow-up.”

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 Lifeline service.


Research Shows 98 Percent Cure Rate for Prostate Cancer Using SBRT

Excerpt:

“A five-year study shows that Stereotactic Body Radiation Therapy (SBRT) to treat prostate cancer offers a higher cure rate than more traditional approaches, according to researchers at UT Southwestern Medical Center Harold C. Simmons Comprehensive Cancer Center.

“The study – the first trial to publish five-year results from SBRT  for prostate cancer – found a 98.6 percent cure rate with SBRT, a noninvasive form of radiation treatment that involves high-dose radiation beams entering the body through various angles and intersecting at the desired target. It is a state-of-the-art technology that allows for a concentrated dose to reach the tumor while limiting the radiation dose to surrounding healthy tissue.”

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.


Stereotactic Body Radiation Therapy plus Chemotherapy Improves Survival among Stage 4 Lung Cancer Patients

“A clinical trial that combined stereotactic body radiation therapy with a specific chemotherapy regimen more than doubled survival rates for certain stage 4 lung cancer patients, UT Southwestern Medical Center cancer researchers report.

“The combination of the chemotherapy regimen, erlotinib, with stereotactic body radiation therapy, known as SBRT, improved overall survival time to 20 months compared to historic 6- to 9-month survival times among erlotinib-only treated patients. The combination improved progression free survival – the time without the reappearance of cancer − from the historical two to four months to 14.7 months for similarly selected lung cancer patients.

” ‘Our approach dramatically changed the pattern of relapse. We saw a shift in failure from existing, local sites to new, distant sites,’ said senior author Dr. Robert Timmerman, Director of the Annette Simmons Stereotactic Treatment Center, and Vice Chairman of Radiation Oncology at UT Southwestern. ‘This shift resulted in a surprisingly long remission from the reappearance of cancer in treated patients.’ “


Stage IV NSCLC That Worsens during Chemo Could Be Treated with Erlotinib and SBRT

The gist: Stage IV non-small cell lung cancer (NSCLC) patients whose cancer worsened during platinum-based chemotherapy might benefit from treatment with the drug erlotinib and stereotactic body radiation (SBRT) therapy.

“Treatment with stereotactic body radiation therapy and erlotinib appeared highly effective in patients with metastatic stage IV non–small cell lung cancer who progressed on prior platinum-based chemotherapy, according to results of a single-arm phase 2 study.

“Patients with stage IV NSCLC who progress on first-line chemotherapy historically demonstrate poor survival outcomes, and they typically fail in original sites of gross disease, according to background information provided by researchers.

“Puneeth Iyengar, MD, PhD, assistant professor of radiation oncology at UT Southwestern Medical Center, and colleagues hypothesized that stereotactic body radiation therapy (SBRT) may help systemic agents delay relapse.

“Iyengar and colleagues evaluated PFS, OS and other outcomes among 24 patients (median age, 67 years) who underwent second- or later-line treatment with SBRT plus erlotinib (Tarceva; Genentech, Astellas).”


SBRT/Erlotinib Yield Big Improvements in Stage IV NSCLC

The gist: Stage IV non-small cell lung cancer (NSCLC) patients who receive stereotactic body radiation therapy (SBRT) along with the drug erlotinib may experience a longer amount of time before their cancer worsens. That was the conclusion of a recent clinical trial with 24 volunteer patients. In the trial, patients went for 14.7 months without their cancer worsening, compared to the historical rate of 2 to 4 months.

“A small trial yielded ‘dramatic’ results with high progression-free and overall survival using stereotactic body radiation therapy (SBRT) along with erlotinib for patients with stage IV non–small-cell lung cancer (NSCLC).

“ ‘Historically, drug therapy has failed to durably control gross visible tumors in most patients,’ said Robert Timmerman, MD, of the UT Southwestern Medical Center in Dallas, in an email. ‘In our new treatment paradigm, the SBRT, not the drugs, controls gross disease. Instead the drug is used to avoid the appearance of new tumors that would have otherwise progressed from microscopically hidden tumor.’

“The new trial was a single-arm, phase II study including 24 patients with a median age of 67 years. All patients had progressed through platinum-based chemotherapy, and the median follow-up was 11.6 months. Results were published online ahead of print on October 27 in the Journal of Clinical Oncology. After erlotinib treatment began for each patient, SBRT was delivered to all disease sites.

“The median progression-free survival was 14.7 months, and the median overall survival was 20.4 months. Though this trial had no comparator arm, these are substantially longer than historical studies of NSCLC patients who receive systemic therapy; typically progression-free survival and overall survival are 2 to 4 months and 6 to 9 months, respectively…

“ ‘The experience is exciting because the intervention seems to have dramatically changed the onset and pattern of failure,’ Timmerman said. ‘Our 14.7 month progression-free survival means that patients had an extended ‘holiday’ from progression during which they could get on with their lives and stop having to focus on finding yet another treatment.’ “