“Joining a study increased my chances of a good outcome.”

Entrevista con Marina, paciente de cáncer de hígado

“Joining a study increased my chances of a good outcome.”

Check out the story of Marina, a woman diagnosed with liver cancer at the age of 35.

This is Marina, and she has been a cancer patient for two years. Before being diagnosed, she was a 35-year-old woman working long hours at a large company managing different work teams. When time allowed, she would go up to the mountains, and she also loved to travel.

Cancer shifted her priorities: to being happy and enjoying every moment, and not thinking about tomorrow.

She now finds joy in helping others, sharing the benefits of yoga, not just on a physical level, but also spiritually and emotionally. Walking on the beach, staring out at the sea, playing the piano, singing, walking her dog, enjoying nature, taking trips in the camper with her partner… the little things that make her feel good.

We will tell you her story in this interview.

 

  • What made you suspect you had a health problem? Did you have any symptoms?

Not one. I was, supposedly, a healthy person with healthy habits, and I didn’t have any symptoms, but something inside me told me to go for an annual physical, that I needed a check-up. And that’s how it all started, with a simple blood test.

 

She had no apparent symptoms. Maybe other patients notice that their health is failing long before diagnosis, but that wasn’t the case for me. If I really look at the situation, the only strange thing I noticed, shortly before the diagnosis was confirmed, was that I felt full after eating very little food.

  • Was there a history of cancer in your family?

At the time, that was one of the first things I wanted to find out to be able to explain why this was happening to me: to ME, a young person with healthy habits. I found out that my maternal grandfather, a person I have always admired, had received chemotherapy for a neck cancer caused by smoking, which was very common at the time. That didn’t justify my cancer, but it made me feel less alone knowing that he’d gone through something like what I was going through. I thought it was really strange that, at the age of 35, this was the first I had ever heard about it; at home we never talked about it before.

  • What specialist did you see? How was that visit?

The first visit was with my GP, she did my lab work and one of the first things she asked me was if I felt okay. My lab results showed a very inflamed liver, and, according to the doctor, this should have translated into extreme fatigue that I, strangely, did not have. So she thought the test results could be wrong and sent me for more, which yielded even worse numbers.

 

They speculated about whether it could be a virus, hepatitis or stone in my liver, but I started to feel like it was something rare or serious since nobody told me anything for certain and they referred me urgently to internal medicine.

  • What was the diagnosis?

The internal medicine doctor asked me to have an ultrasound. The results didn’t show anything that would explain the lab results, and then she told me that the worst – that it was a tumor – had been ruled out, but she asked me to get a CT and MRI scan of the bile duct area, an area that is apparently hard to see on an ultrasound. These tests revealed the diagnosis, which was later confirmed with a punch biopsy.

The diagnosis was that I had bile duct cancer, specifically cholangiocarcinoma. I had a tumor in the worst place ever, in terms of how complicated it would be to remove it. It is a rare type of cancer that usually occurs in people over the age of 50.

  • How did you feel when you were informed of the result?

It’s really hard to write, in a single paragraph, how you feel when you get that kind of news. You go through so many phases and do so very rapidly. Mostly you wonder how this could be happening to you. Cancer is something that we live with every day in the media and in life itself, but you never think that you will have to experience it firsthand. It’s a disease that takes you through so many emotional phases, unknown until that point in your life, and it makes you get to know yourself better, and even grow as a person.

  • What was the treatment like? Did you have a lot of side effects?

The liver surgeon at my private clinic was the one who gave me the news and the protocol to follow: he told me that, at that time, surgery for the tumor was not an option and that we were going to start chemotherapy to try to shrink the tumor 1 cm to be able to operate.

Physically, I handled it pretty well. The main side effects that I felt during that first contact with chemotherapy were headache on the day of the session, a rash on my back, tiredness, and little else.

Emotionally, as a patient you go through so many stages. However, I tried to work on this beforehand to be able to handle the sessions the best I could.

  • Were you able to have surgery when you finished the treatment? How was your recovery from surgery?

Well, at first, the treatment was not effective in reducing the size of the tumor, but by that point I had already sought out a second opinion in the public hospital and I knew I had options to have surgery even though the operation was going to be extremely complicated and risky. So after 5 months of chemotherapy, I decided to have surgery in the public hospital, because an operation of that caliber had to be performed in a tertiary referral hospital for my own safety.

Once I had the surgery, I was disease-free. But I had a lot of sequelae from the operation. I had several drains to my liver, or what was left of it. I made it through surgery, but the following 72 hours were crucial since they had removed 75% of my liver, the maximum permitted to not die. My recovery was very slow and incomplete. I had complications, which led to pleural effusions, fevers and so on. It all coincided with the pandemic and although they needed to operate on me a second time, there were no operating rooms available as they were all full with severe Covid-19 patients. That complicated my health condition and led to multiple complications the doctors tried to treat, knowing that my only option was to have surgery again.

I was hospitalized for about 6 months – completely isolated due to the pandemic – between the first operation, my complications, the second operation and my recovery for discharge.

Once I had my discharge form, I left the hospital, but my recovery was very slow; I felt discomfort when walking, when eating and I had a very swollen belly. I lost feeling somewhere in my torso because of the operations and I also lost muscle mass from lying in bed for so long, but I focused on doing yoga and walking. I was recovering step by step, and I am still working on it today.

  • When did you know you had relapsed? Was it thanks to the follow-up tests or because you weren’t feeling well?

Exactly one year after the first operation, the one that freed me of the disease.

My follow-up CT scan coincided with that date, and it showed a lesion that could apparently be consistent with a metastasis. A few weeks later, I was referred for an MRI scan, which revealed 2 lesions, confirming that it was cancer. I then had a PET/CT scan, and the results showed that there were 2 lesions plus suspicious activity outside of the organ.

Physically and emotionally I was fine, so I never would have suspected a relapse of the disease unless it was for the tests.

  • What was the oncologist’s proposal at that time?

The oncology department told me that the protocol was to start with the chemotherapy treatment, but that I should wait a few weeks to see if I could join a clinical study in the hospital as a subject. At that time, there were 3 studies being conducted for my type of cancer. Being a patient with previous chemotherapy already applied and a history of another cancer – Paget’s disease of the Breast, specifically – made it difficult for me to qualify to enter the studies, since the requirements are very specific and they do not usually look for patients with my profile. However, they found a study that I could enter. It was a study in which they were going to use the same chemotherapy I had before but that was ineffective in reducing the size of my tumor, but this time, it was going to be combined with an investigational immunotherapy drug.

  • How did you feel when they proposed you enter a clinical trial? Did you know what a clinical trial was at that point?

I was scared because of the uncertainty, but, at the same time, I felt relieved, hopeful. Entering a study increased my chances of having a good outcome, and in my case, I didn’t believe much in the chemotherapy, because I had already tried it and it only worked to slow the growth of the disease but did not shrink it.

 

I knew it was a process in which they tested a drug for potential approval, which generally consisted of 4 phases depending on the positive progress of the study but little else. I felt like I only knew the superficial details, and I had previously worked in a pharmaceutical company, but I was completely unaware of what it was like to enter a study as a patient. I felt completely ignorant at the time and blindly went towards what I thought could be an opportunity for me.

  • During the trial, did you feel calmer, more controlled than during chemotherapy?

During my time in the clinical study I felt like the laboratory tests were very comprehensive, and the nurses were very attentive to any symptoms that arose. I cannot say that I felt calmer – because I knew that it was possible that I was in the group of patients not lucky enough to be treated with the investigational drug even though they were in the study- but I did feel better monitored.

  • In your experience, what are the pros and cons of being in a clinical trial?

I think that in my case, it was an opportunity to access an investigational drug that might not be on the market for many years, it was successful in shrinking my tumors by 43%, even though later it proved to be too harmful for my liver after my surgery and they asked me to leave the study. Being part of a clinical study gives you the opportunity to benefit from that drug that might be your salvation, you just don’t know. You also don’t know if you are you going to be in that “control” group, but I think the chance to be able to access the drug is worth it, unless you think that it’s detrimental to your quality of life and/or general health. After all, we must always understand that it is a personal decision.

  • What advice would you give to a person who is in the process of entering a clinical trial?

When you start in a study, you are able to access drugs that might not be on the market for years and they might be beneficial for you and, depending on the situation, might be an opportunity and maybe even mean your survival. However, you must be well informed about the study, the phase it is in, the possible adverse effects and the expected results, and only then should you make the decision to participate or not.

 

If that patient is undecided, I would advise them to consider all possible scenarios and to speak with professionals or other patients who could give them a better perspective. And for the patient who doesn’t know how they are going to handle it, I would tell him that if there is one thing this disease teaches us, it’s to live in the present since we don’t know what the future will bring. So, it’s best to let go of any expectations on the outcome of the study, since it’s not guaranteed that we will benefit or even if it could hurt us, but it could be an opportunity, and that, sometimes, is enough. First of all, we must follow our intuition, since we know what we need, and of course, once the decision is made, we must be confident in it, since, at the end of the day, it is our health, and we have the right to decide.

 

Thanks for sharing your experience, Marina. We are certain it will be helpful to many others.

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