Bobbi has cancer. This is her story:

It was 8 years ago that Bobbi’s life changed. She didn’t feel well, but couldn’t pinpoint why. Blood work was done, showing nothing abnormal. A high fever took her into the emergency department days later. Again, her blood work was normal, but a CT scan showed something odd with her liver, so off she went to see a specialist at a Toronto downtown hospital.

She was told she was perfectly fine, with some abnormalities in her liver, nothing specific, but otherwise perfectly healthy. Bobbi told the doctor, “but I am so tired all the time”, only to be told she was okay. “But weeks later, I received a call from the doctor, who said that there is an associate of mine who thinks there is something more to this, and we think you should come back in. I went back in for more tests, and then was told: Rest assured, you do not have cancer. Go home and enjoy Christmas. But days later they called me back in to do a biopsy, and this was when I was told I had ‘islet cell’ cancer!” Bobbi was told she had 3 months to live!

Immediately Bobbi went into emergency mode. Minutes after her diagnosis, she called her friend, and gave her a mission. “Find the best oncologist in the city who treats ‘islet’ tumours”. Within the hour she had a name. Dr. Lillian Siu of the BRAS Drug Development Program at the Princess Margaret Cancer Centre!

“The fact that I was terminally ill, with three months to live, freaked me out more than the actual label of ‘islet’ tumour”, says Bobbi.

“The fact that I was terminally ill, with three months to live, freaked me out more than the actual label of ‘islet’ tumour”, says Bobbi.

Days after her diagnosis, Bobbi was sitting across from Dr. Lillian Siu, who she describes as very warm and very caring. Dr. Siu told Bobbi her cancer is very rare, and is terminal. She went on to explain what an ‘islet’ tumour was: “Your tumour is called ‘pancreatic islet cell’ cancer. It is located in the back of the pancreas, and it is asleep. There is no point removing it surgically, as the primary tumor is in the pancreas, and it has already spread to involve almost 90% of your liver. We do not know how long the primary tumour has been there, but obviously it has had time to cause a great deal of damage. The only symptoms you have right now are fatigue. There is no other sign that pinpoints this cancer.”

Dr. Siu said that there was not really much that she could do. “As long as your tumour is asleep, we want to keep it asleep, because your time is very short.” Bobbi didn’t want to die, and asked Dr. Siu: “Please do something.”

Authors note: ‘Pancreatic islet cell’ cancer belongs to a group of cancers called ‘neuroendocrine tumors’, and Dr. Lillian Siu was the North American Chair of the Neuroendocrine Tumor Task Force. Bobbi was in good hands.

Part II

Not long after that, Dr. Siu called Bobbi into her office to say: “I think I’ve got a drug for you that we can try; it is a drug trial, and if your one of the lucky ones, you can live for five more years. If you are not one of the lucky ones, it is anywhere from zero to five.” Bobbi said: “OKAY. Let’s Go!”

Authors note: The BRAS Drug Development Program conducts early phase clinical trials, involving patients with advanced cancers, using new tools to identify their genetic ‘fingerprint’. To date over 5,000 patients have gone through the BRAS Drug Development Program!

Bobbi set goals for herself. She didn’t think to herself, why me, or why am I going to die? No, Bobbi thought about her daughter who she wanted to see grow up into a beautiful young woman. “So I started focusing on goals”, said Bobbi: “I would live until my daughter had her Bat Mitzvah; I would live until she graduated from Grade 8; I would live until she got into grade 9; I would live until she graduated from grade 12, and if everything was fine with me, I would get her into University!”

Bobbi set goals for herself. She didn’t think to herself, why me, or why am I going to die? No, Bobbi thought about her daughter who she wanted to see grow up into a beautiful young woman.

Bobbi chose not to tell her daughter that she had cancer, or that she was dying. No, Bobbi chose to live her life as normal as possible. “I had this idea, that if I kept my life as normal as possible, I would live on! I worked full time at the Bay Crest Centre for Geriatric Care. I worked with seniors and I loved my job. I worked with the Rabbi, and so I worked a lot of religious holidays, and it kept me busy. I found it helped to keep me psychologically safe as well. It was my therapy, in addition, to my therapy with the psychiatry department at PMCC. Dr. Siu was also a major source of support, along with my study nurse and her team.”

Bobbi sent her daughter to a psychiatrist, to help her deal with what was going on at home. She reacted by telling Bobbi: “Mom, I don’t need this therapy, I am perfectly okay.” Bobbi responded: “Yes honey, you are perfectly okay, but I am the one who is sick, and I worry about you reacting to me with the pain I have in my liver; or the fact that I am vomiting; or the fact that I have diarrhea; or the fact that I cannot eat the way I used to; and look my hair is falling out, and I am really embarrassed about that.” And she said: “Yes, I think you should get a wig!” From that moment on, when Bobbi went out of the house, she had to wear her wig, so as not to cause embarrassment to her daughter.

As for Bobbi’s husband, he was devastated by her prognosis, and was not handling her illness well. “My husband had great difficulty with my cancer, and he kind of withdrew from my daughter and me. We tried to get him support, which he did, and then it took him about a year and a half before he came emotionally back into the family. But my daughter noticed it, and I told her: “You know Daddy is having a hard time with me being sick.” And she said: “Yes, but Dad’s do that!” I have an incredible 14 year old!” Bobbi had a lot to cope with while trying to stay alive!

Part III

Bobbi wanted to create memories for her daughter, so she started a journal. In it she wrote: “You know by the time you read this, I will have passed away. It was my decision when you were small not to tell you I had cancer, and as a parent, I have a right to do this. When you read this, you may be in your teens, and you may be angry with me for not telling you, but you’re going to have to live with that. I could just as easily have been hit by a car, and you would suddenly be told that your Mommy died in the emergency room!”

In the 8 years she was never supposed to have, Bobbi and her family have created a lot of memories. “We went away this past January for two weeks”, said Bobbi. “We have gone on summer vacations; we did a lot of things together, and I would say to my daughter: You know, just think of the kind of day it was today, so when you are with your own kids, you will say, yes, I did that with my Mom, or I did that with my parents, and those are the kind of memories I want you to have. I didn’t want to overdo it, or over play it, but I felt it was important that she knew that we did a lot of things together. We have been doing that. This has been our life for the past 8 years.”

In the 8 years she was never supposed to have, Bobbi and her family have created a lot of memories.

Dr. Lillian Siu: “Bobbi has a cancer that has responded well to the treatment she received. It really is a credit to the advances in our field, and knowledge, which allow this to happen.”

Part IV

As Bobbi talked about the last years of living with cancer, she revealed the pain, the challenges, the victories, and her continued hope for life to come.

Bobbi continued her story: “Dr. Siu said that she knew me well enough, that I do not tolerate medications well, but because I was enrolled in a clinical trial, all patients have to start at the full medicating dose, even though Dr. Siu thought I would do very well on a lowered dose.” “And you know what? She was absolutely right! I’ve been on this low dose for almost a year. The results have been phenomenal. My tumours, both the primary and the ones in my liver, has shrunk 47%, which is  extraordinary! They would never have expected it. I mean, this is what they would expect at the highest dosage level. And they have achieved that with me!

So even if the drug is horrific to deal with, it’s a choice, and I would rather obviously have all the side effects, and be alive, than not be here to be with my family.”

So even if the drug is horrific to deal with, it’s a choice, and I would rather obviously have all the side effects, and be alive, than not be here to be with my family.

“During all of this, I think the tie to Dr. Siu, Dr. Miller, who is the psychiatrist I see here, and Jennifer my study nurse, it is just a really strong bond. A really strong triangle. I always felt support, no matter where I was. If I went down to Florida, if I went away to Europe, we always had a plan, so that I knew I could reach them at any time. I am always reassured. They let me live my life. I have no control over what is going on inside my body, and I can get sick tomorrow, and then my life is over. But I’ve been very fortunate that I’ve lived a good 8 years, and I’ve often thought, that when you hear the word cancer, it’s horrific, and then I think why did I have this kind of cancer, versus any other kind of cancer? But in hindsight, I think I am fortunate to have this kind of cancer, because it is asleep, and it has let me live a really good life. It has given me a healthier outlook. It has given me a much fuller life, because I look at life each day as wonderful!

It has been a good experience, even though it has been a scary one. And I really feel I’ve gotten through it because of Dr. Siu. I think that if I’ve had to have any kind of cancer, I am okay with having this rare islet cancer. Dr. Siu is one of the most foremost people on it. I know that if there is some other drug out there, she will find it for me. Dr. Siu said if I were lucky, I would have two years on this drug, and after that, something else would be found for me. I believe her. So my hope goes on.

Dr. Siu said if I were lucky, I would have two years on this drug, and after that, something else would be found for me. I believe her.

And I’ve often thought that I am unfortunate there is not enough research being done with this kind of cancer, but I know it is so rare, and there are so few people with this. I know I was lucky that I was diagnosed when I was, because I was relatively young, and I’ve always been healthy, and I think those are the two main factors in being able to get to the place that I am now. This is one of the positives about this illness, is that I came in at a time when I could be helped.

I’ve heard stories of people being on ten to twelve drug trials, and this is only my second, and it’s been remarkable, and in both cases I’ve had a positive outcome. The first drug trial, my tumours shrank, certainly not as much as they have now, and when the medications stopped working in the first trial, the tumours grew back. And so, as I have said, having 47% shrinkage is quite remarkable. Yes, two drug trials and this is where I am 8 years later. I am healthy and I am lucky.”

Thank you Bobbi.

Maggie Bras, 2013