Rare Cancer Stories
Treated for Thymic Carcinoma
“It's really helped me to reevaluate the direction I was going in life. I definitely slowed down. I only work three days a week now, which I feel is more in balance with my family life. Especially with two kids, which I never would have done before. I was a real, determined workhorse before. I would work every spare minute of the day. My career was very important to me, and after my illness I realized that your career is only a small portion of your life.”
Name: Jennifer Pastore
Initially misdiagnosed with stage 4 thymic carcinoma
Primary mediastinal B-cell lymphoma
Viral like symptoms
Shortness of breath
Table of Contents
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What were your first symptoms?
In October of 2013, I started having what seemed to be the symptoms of a viral infection, like a cough and cold. I was having pain in my chest. I was seeing my GP for that for quite a while and she diagnosed me with a few other things that she thought it was. At first she told me my bra was probably too tight and that was causing the pain, so I stopped wearing a bra.
Then she told me that maybe it was asthma and started me on an inhaler. That didn't do anything. Then she said it might be something called Silent GERD, which is like reflux but you don't have any burning or other symptoms, you just have a cough. So she started me on an acid reducer, and that did nothing. It actually made me unable to digest my food because it reduced my acid too much. So at that point when nothing was working, she sent me for a chest X-ray.
It was 10 x 10 cm, and it had pushed aside my diaphragm and my lungs. Shortly after I went for a CT. The preliminary diagnosis was that it was a lymphoma, but the pathology report came back, unfortunately, as a thymic carcinoma. I think they kind of present a little bit similarly, or undifferentiated, but it was a pathological error.
What was your diagnosis process like?
At the first visit with my GP, she said I probably have something called lymphoma, but they won't know for sure until they do a biopsy. At that point, my shortness of breath had gotten so severe that I could barely breathe.
I thought my air supply was going to be cut off. I think that's quite common with B-Cell lymphoma; the tumor gets so large that you get Superior Vena Cava Syndrome, which I had to a significant extent. The tumor was pushing on the Superior Vena Cava, and cutting off air supply so I was having extreme shortness of breath at that point. I ended up presenting to the ER, because they had booked my biopsy for the end of August, but I didn't think I was going to make it to the end of August. They said that I was probably right, because the tumor was getting so large.
When I presented to the ER, they ended up admitting me and doing the biopsy. I think because of my symptoms they rushed the pathology, and maybe that was part of the problem. They didn't run a full panel, and they didn't run a lymphoma panel at the time
How was your experience with the CT scan and biopsy?
The biopsy was kind of scary actually. I had scans before like MRIs and stuff so I was okay with the CT Scan. For the biopsy, because of the location of the tumor, they had to put in a really long needle through my rib cage to access it. I was at Princess Margaret Hospital in Toronto, which is a teaching hospital. I believe a fellow was doing the biopsy, and the doctor was monitoring from the other room.
When she first inserted the needle, because it was CT-guided Biopsy, she yelled out at her stop. I think she had gotten it in the wrong location. It was a bit disturbing, because it was the first time I'd had a biopsy. I guess mainly because of the location and the size of the needle, it was a scary experience.
What was your reaction to the first diagnosis?
The first oncologist I saw was the surgical oncologist and my experience with him was horrible. They always make you see the surgeon first here because surgical excision is one of the preferred treatments. I went in with my three year old daughter at the time, and I was by myself.
Not because they are inoperable, but because they are so terminal that they always end up coming back shortly after; they metastasize to the brain and the bones. Finding out that I wasn't a surgical candidate so quickly off the bat, and the way he presented the information, was very cold and unpromising. I had a little bit of a breakdown after my first meeting.
That same afternoon, I saw the radiation oncologist and I think I was just in shock. I was not responsive. I was in a state of shock because I wasn't able to communicate, and I wasn't processing what was happening because it all happened so fast.
When did they give you the correct diagnosis?
They didn't. I ended up going to Indiana because at the time they told me I had thymic carcinoma. It's a very rare cancer, so I found an expert in Indiana. I'm from Canada, so we traveled there in April of 2015, after my treatments were done in December of 2014. I was basically going there just to get an opinion on life-prolonging treatments or clinical trials because they had exhausted the treatment options for what they thought I had here at the time.
I actually got the correct diagnosis in May of 2015, after my treatments were already done.
Were you suspicious of your initial diagnosis?
I'm a Pharmacist, so I have some medical background. When I first presented in August of 2014, my husband and I had both researched it. We were almost 100% certain that I had PMBCL based on my clinical symptoms and the fact that my CT Scan had queried lymphoma. We had actually narrowed it down to the Primary B-Cell lymphoma because of my age, my sex, how I presented, and my clinical symptoms. We asked the oncologist, "Is there any ambiguity in the pathology? Is there any way that it could be lymphoma?" And he said, "No, the pathology report came back as this." I guess he kind of thought we were in denial because thymic carcinoma is a more serious cancer whereas lymphoma is typically curable, or at least this one is typically curable with the right treatment.
But I didn't get the immunotherapy.
Luckily it was an over-treatment. It was basically treating a more minor cancer, because I think the stage I had was PMBCL Stage 2. It had spread to a few lymph nodes, and the treatment would have been much less harsh. I got a significant amount of radiation and a platinum-based chemo.
What was your reaction to finding out about the misdiagnosis?
When I went to Indiana in April of 2015, they didn't know right away that it was a misdiagnosis. The doctors there said that I had gotten the correct treatment for thymic carcinoma, and that they wouldn't have treated it differently. In fact, they thought I got a more aggressive treatment than they would have given me. It took them a month to redo the pathology.
When I found out, it was funny. The doctor in Indiana, Dr. Loehre, called me while I was in the ER at the time because I had broken a rib. From the steroids, radiation, and some hormonal changes, I ended up breaking a rib. I didn't have a fall or anything - it just spontaneously broke, so they were trying to figure that out in the ER when I got the call. He was like, "I'm sorry to tell you but there's nothing I can do to help you because you don't have thymic carcinoma, you have lymphoma." And I just didn't understand what that meant. I thought I would have to do treatment all over again, and I was very confused. I couldn't really metabolize what was happening.
I think the first reaction once I kind of digested what had happened, was anger and confusion. I didn't understand how something like that could happen because I was at a world renowned cancer institute here in Toronto. Then I got a letter of apology from the pathologist, and that's when it kind of hit home, what had happened. I was angry for a long time I think. I met with the pathologist, and I underwent some therapy. I guess I realized that the anger wasn't really helping anybody; it was only hurting me, and what had happened couldn't be changed. I think I've let go of that anger over the years.
How did you break the news to your loved ones?
I remember when I told my husband, he thought that I had misunderstood. He couldn't believe something like that could happen. Even my oncologist at PMH said that they had to redo everything and not to panic, and they were in disbelief as well.
My medical oncologist said that the day we asked him if it could be lymphoma, and he told us "No", will haunt him for the rest of his life. He said if there is ever a question or ever an ambiguity in pathology again, he's going to change his practice and will ask that it will be redone, because of my case. The hospital actually changed the protocol on how they deal with these - they changed nine different protocols, because it wasn't just the pathological error. There were some administration errors that happened later on; for example, my file got archived before the pathologist had a chance to re-look at it and run extra panels.
So there were a lot of things that went wrong in my case. The hospital did actually change nine or ten protocols, where the pathologist now has to scan his badge before anything gets archived, and things like that.
I don't know, sometimes I think maybe that's the reason it happened. Maybe its saving a lot of other people that would have had the same thing happen to them if my case hadn't happened.
Was there anything you wish you had known?
I'm a pharmacist, so I was concerned with the treatment. Once I accepted the diagnosis they had given me, I was concerned about treatment and making sure I was getting the right chemo, the right drugs, and the right amount of radiation.
You always think to go for second opinions to make sure you are getting the correct treatment, or that there's no other treatment. But most people never think to get a second opinion on the actual diagnosis.
At the time, I thought Pathology was a science, whereas now I've discovered it's more of an art. It's basically how the pathologist is reading, or looking at your cells, and it's kind of a guess. Then they usually talk to other pathologists and they come up with the diagnosis and agree on it. But in my case, because it was August, the hematologist and other pathologists that would have conferred on my case, were on vacation or at conferences. There was actually one pathologist that reviewed my case, and that might have contributed to what happened as well. I wish I had known that I even had the opportunity to get a second opinion on the pathology. I didn't even realize that was an option. If I could do it again, that's probably what I would have done.
What was your treatment process?
The surgeon said I wasn't eligible for surgery because the tumor was too close to various nerves. They said that the surgery itself would be more dangerous, so surgery wasn't an option. I had the biopsy on August 7th, and the pathology results came back a week later on the 14th. Then I saw all the oncologists: the medical oncologist, the radiation oncologist, and the surgical oncologist. I started chemo on August 22nd, five days after I was diagnosed.
After you got your correct diagnosis, were you given additional treatment?
I really wanted the immunotherapy, which was the rituximab for me, as targeted B-cell therapy. I started seeing a new oncologist - because it's a blood cancer - a hematologist, and he thought that there was no additional benefit to doing any treatments. They hit my cancer with an atom bomb when all it needed was a zap. He said the radiation they gave me alone would have killed the lymphoma because lymphoma is very radiation sensitive.
He was certain that it was overly aggressive and that would have taken care of anything. If it came back, we could try the rituximab or a stem cell transplant; but until that time I was so depleted from the treatments they had already given me that he didn't think there was any additional benefit to having further treatment.
Were there any surprises during your treatment process?
I had this mindset that I wanted to avoid any kind of unnecessary intervention. They had offered me a port initially, and I thought, "No, no, I don't want any surgical devices in me," and I refused it until I lost venous access. I started getting a lot of vascular occlusions, and they could no longer get a vein.
They tried to insert a picc line, and two surgeons failed at that. I was black, and my arms were totally black and blue. They could not get access for a picc line. I ended up getting forced to get a port because I couldn't finish my chemo without it.
If I could go back, I definitely would have gotten a port on day one. Just a learning experience that you don't learn until you go through it or you know someone that's gone through it. People were advising me when I was getting the chemo - I had a lot of cancer patients coming up to me and saying, "Oh my god, why don't you get the port?" I was like, "No, no. I don't need the port. I'm fine."
The other thing was that they told me there was an over 90% chance that chemo would induce menopause, and my periods did stop. They didn't return after chemo ended, but six months after my chemo in June of 2015, I found out I was pregnant. At the time, I thought my periods had just stopped from the menopause. It was not menopause. It was a blessing and a curse. It was not a good pregnancy because I was so worried that the chemo and radiation would have caused some damage to the fetus.
It was a very scary time.
What was your chemotherapy regimen?
It was C-CAF, so cisplatin, cyclophosphamide, doxorubicin, and high-dose steroids. In my case, it's usually prednisone, but because the tumor was so large and causing so many symptoms, they started me on high-dose dexamethasone. The cycling of that was every three weeks, and my radiation started in November.
What was each week like during your chemotherapy cycles?
I think the worst symptom I had was fatigue. I'd get extremely tired and just have to drop wherever I was and sleep. That was something really unusual for me because I'm usually a very high-energy, adrenaline-based person that doesn't get tired.
I would be up all night. I'm probably one of the few chemo patients that ended up gaining weight. I think I gained about 40 pounds by the end because the steroids just caused a lot of metabolic side effects. I also got osteoporosis, unfortunately, from the steroids. That's why I broke that bone.
The aesthetic side effects were hard because I was only 34 at the time and a young mother. I started losing my hair about two to three weeks after my first chemo, so I ended up shaving my head on September 11. The steroids caused the typical moon face, so I kind of looked like a chipmunk. That's common because I think the steroids are a part of a lot of chemo regimens, unfortunately.
I was most afraid of nausea and vomiting, so because that was such a concern, I made sure that my oncologist had appropriate regimens on board to take care of that. I was on the Cadillac of anti-nauseants because that was my main fear. So that was actually okay. I guess in the movies they always show people throwing up and stuff like that, so that's what I envisioned chemo treatment to be, but I was actually okay with that.
How did you deal with the side effects?
A lot of sleep - I slept a lot. When I did have energy, I think I focused more on things that were important to me, like spending time with my daughter. At the time that I was diagnosed, we were undergoing a very stressful renovation which I'm actually convinced caused the cancer. It was a total tear down and rebuild, and we were living with my in-laws at the time. I'm a very Type A personality that likes to micromanage things and always be in control, and I was feeling a loss of control with the situation at the time. It wasn't going the way it was supposed to be going. I was depressed and more stressed than I've ever been in my life, and then I got the diagnosis.
Once you start talking to your peers and other people that have had cancer, you start to realize that a lot of people that are diagnosed, it's usually following some major stressful event in their life. I think there's something to that, to be honest. It's too much to be coincidental.
What was your radiation regimen?
I continued with the chemo while doing radiation, so they did it at the same time. They modified it a bit once I started the radiation. The radiation was 30 days, so November to December.
How was your experience with radiation?
Radiation gave me some pretty major burns that I still suffer from today, mainly because of the exit points. My neck was extremely burnt with second-degree burns. I just had skin falling off.
Other than the skin changes, the actual radiation itself was both better and worse than I thought. I think the unknown was more scary, and then after my first session I was like, "Oh, that wasn't so bad." But the effects of radiation typically start several weeks to months after you've had it, so while I was undergoing radiation, it wasn't so bad, aside from having to be there every day.
That was the only side effect besides the burns of radiation that really bothered me.
What were the side effects you experienced?
I had radiation-induced fibrosis, and it caused some pretty severe vascular occlusions. I believe it contributed to the fracture of my rib as well because the rib fracture happened kind of where the radiation was targeted, which probably weakened the rib that ended up breaking. The skin changes - I lost all my taste buds. I couldn't taste food for months and months afterwards. I got 60 gray of radiation to the mediastinum - I had changes in the breast tissue. They actually were going to give me a g-tube, but I refused it because they said that it would have burned my esophagus so bad I wouldn't be able to eat or drink. I refused that intervention because I just felt like the more interventions they did, the more medicalized things became, and the less control I had over things. I'm kind of glad I refused that intervention because I ended up not needing it.
A lot of the effects have not even come to pass because most of the radiation-induced side effects actually occur 10 to 20 years after the radiation. That's part of the reason I underwent the prophylactic mastectomy in March. I have a strong family history of breast cancer, and also all the radiation I got to my chest.
How was your experience with surgery?
Horrible. I had some complications on the mastectomy, unfortunately. I developed an autoimmune condition called pyoderma gangrenosum where your body attacks the surgical sites. I lost all the skin on my breast. What I had was a DIEP flap, so they did immediate reconstruction. But a few weeks after the mastectomy, I developed this autoimmune thing. I was in the hospital for 10 days, and they couldn't figure out what it was.
That's also been a horrible experience, but that's something that was out of everyone's control. It's a one in a million condition that can develop.
I'm still glad I had the mastectomy because I think I would have always worried about getting another cancer, and I'm trying to do whatever I can to not get cancer again because I don't know if I could go through what I went through again. Trying to do something prophylactic just didn't work out the way we had anticipated.
6. Family Life
How important is it to have caregivers?
100% important. So many times during treatment, I would have this guilt, because I would see people at their infusions or at their appointments alone, and I would say most of the time, I was never by myself. I had the support of my husband, my mother-in-law, my mother, and extended family members. I think that's very important, and I felt so bad for people that didn't have that support. I couldn't imagine going through it without the support, and the caregivers. I don't know if I would've gotten through it without my husband's support in particular.
How did cancer affect your relationship?
I think it actually made it stronger, but I know that's not always the case. I think it actually breaks a relationship, or makes it stronger. My husband and I met in high school, so we had already been together a significant amount of time before my diagnosis - almost half our lives. He's just been a rock, and he was more supportive than I could have imagined. I always say that I was just thankful that it happened to me, and not him or my daughter, because me I could handle, I could go through, but I don't think I would have been able to go through it if it was my child or someone I loved.
Do you have any advice for cancer patients about how to deal with the spouse during treatment?
Yeah, joining support groups. I think I discovered that too late. We have quite a few here. I guess it depends on where you are, but here we have a place called Gildas Club, which was started by Gilda Radner who died of ovarian cancer in the 80s. That offered caregiver support groups, which was very important, and helped my husband and my daughter.
There's another one called Well Springs. At the time, I was part of the Facebook group which was very helpful with things you just can't talk about with your caregiver or with your family, because they haven't gone through it, or they just can't understand, and just getting that support online from people that are undergoing the same treatments: where you can bounce ideas off, and what if you try for this, and what worked for you, and how did you deal with this side effect, etc.
There was so much happening, that I didn't start seeking that out almost until the end of my treatments, because when you're going through treatments you're just fighting to stay alive and get through it. But I wish someone would have told me how important that was, and maybe I would have asked for it sooner - it would have helped some things that I wouldn't have known what to expect.
Did you tell your daughter about the cancer and treatment?
We told her that I was sick, and Gildas Club was really helpful in that, because they're able to counsel children and explain things to them in a way that's appropriate for their age levels. I think the way they explained it to her at the time was through pictures. They drew pictures of the cells in your body, and they explained that everybody has good cells and bad cells and that sometimes the bad cells, which they displayed in the picture as black - and the good cells were blue - start to grow too fast, and they outnumber the good cells. That's why you need to treat them and that unfortunately, when you kill the bad cells, you also kill the good cells. Then they would explain to her that's why your mom is losing her hair, and that's why she's not feeling well, because we're trying to kill the bad cells.
It was kind of a rudimentary understanding, but it helped her realize that the reason those things were happening was because it was trying to get me better, which is hard for her to understand because I was feeling so sick from the treatment. It was a good way for them to kind of understand that the treatments were actually supposed to make you better in the long run.
If she was an infant or a baby, she just wouldn't remember it all. She was at an age which was an awkward age, because now she remembers the experience, but she was still too young to understand the extent of it.
What was it like raising a young child while being a young mother during treatment?
It goes back to the importance of having support people and caregivers. My in-laws, for example, took her on my chemo days so she never had to see me on chemo day feeling wretched and nauseous and in pain. She was sheltered from a lot of that because of family support, and we were able to get her out of the environment, which I think would have been hard if I would have been let's say a single mom, and she was totally reliant on me. My husband again, he was beside himself just dealing and taking care of me. That took a lot of pressure off of him as well, and allowed him to focus on me.
7. Quality of Life
What problems did you experience during treatment (hair loss, weight gain, etc.)?
I started losing my hair in chunks, so I ended up just shaving it. It probably took about a year before it started growing back to a point that was presentable.
I was off work for a year after my treatments to recover. I was pregnant six months later, so just supporting the pregnancy while going through all that was difficult.
What did you do to help you with the side effects (mouth wash, wigs, cold caps, etc.)?
They didn't think that the cold caps would be effective for me because of the high doses and types of chemo I was getting, so that was not offered to me. For the mouth sores, I ended up using Golden Milk, which is a turmeric-based treatment, and I believe that was the most beneficial thing. They gave me magic mouthwash and stuff like that, but none of that worked. I drank the Golden Milk three times a day, and I didn't get the esophageal burns that they thought I would get. It really helped with the mouth sores.
What was the worst experience during your treatment?
Probably mid-cycle, when I was doing chemo and radiation at the same time, because at that point the chemo was every day, as opposed to once and then three weeks off. While I was doing the radiation, I was doing a week of a 6 day stint, so I would do Monday to Friday and then Monday. It was five days during the week and then the Monday for chemo. For the first round of the that, I did it without a port, and it was horrible.
That was why they decided they had to get me the port, because I had such anxiety every day of them trying to access a vein.
Sometimes they would leave the needle in, but my vein access was becoming so poor that I really felt like I would give up at that point - around November of my treatments.
What got you through these tough times?
My daughter. I always tell my husband I love him, but I think I would have given up if it wasn't that desire just to keep fighting for her. It was a lot. I don't know if I would have fought so hard if I didn't have her. At the time, I always felt I had to stay alive for her.
Were there any moments you had to advocate for yourself?
Yeah. Everyday, starting from day one. From the misdiagnosis, I felt like it was a constant fight with the oncologists, and I remember once my radiation oncologist made this nasty comment to me. She said, “You know, I always thought engineers were the worst patients, but pharmacists are actually the worst,” because every time I went in for an appointment,
I think I was in that way a difficult patient, because maybe there's a lot of questions I was asking that there was no answer, but I think it's because deep down I just knew something was wrong.
I just never accepted the diagnosis, but when you're going through that you kind of just believe what people are telling you. I just felt like I was in denial, and that I wasn't accepting the diagnosis. Nothing felt right, but that might be an experience that I would've had regardless. It's hard to say, because I can't compare what it would have been like if I had the right diagnosis.
I question everything now. I don't take anything at face value, which is good and bad.
Did you consider fertility treatments?
They did ask me initially if I had any plans to have another child, which we did at the time. I actually had a miscarriage just before my diagnosis, so we were trying for a second. They told me that most likely I would go through menopause, and not be able to conceive in the future, and that there was not enough time to harvest eggs. I started chemo five days after my diagnosis, because the tumor was getting so large. They had to shrink it rapidly. I had the SPC, and it was starting to cut off my air supply essentially.
I didn't have a choice there. That was another devastating thought that we would never have another child. I always wanted my daughter to have a sibling, and especially after my diagnosis. I thought, God, if I die, she's not gonna have anyone. She'll just have her dad, and if something happens to him, she's alone. That was devastating.
Did you work through treatment?
No. I went after the day I had the CT scan that showed there was something going on, and at that point I couldn't work anyway. I work as a drug information pharmacist, so I was on the phone, and I had such a bad cough and shortness of breath that I couldn't even work, because I couldn't talk. I couldn't talk for more than 30 seconds without going into a coughing fit. I was functionally not able to work. Then, because of the side effects, the pain, and the broken rib and everything that happened after, I ended up taking a full year off, before going back.
How did you deal with the financial aspects of treatment?
Luckily, I'm in Canada and I work, so I had supplemental insurance. Financially, I don't think I was impacted as much as I would have been if I were in another country. I hear in the states, people have to mortgage their houses, and again, I can't imagine the financial implications of going through this on top of everything else. I feel a guilt and I always kind of used that as feeling grateful. I'm so grateful that if this had to happen to me, that it happened in Canada where I don't have to worry. At least in my case, the treatments were all covered under the provincial plan. There was very little out-of-pocket expense, and because I was working at the time, I had disability benefits through work. I was getting paid 50% of what my normal salary is, but it's better than nothing.
Can you describe the new normal following cancer?
In terms of my outlook on life, it hasn't changed me functionally. I haven't been left with any permanent disabilities or things that would impact my day to day living. But I think it has impacted my mindset and how I approach things.
Before, I was really type A. I'm still pretty type A, but I would get extremely stressed if things didn't go the way I expected them to. Now I am able to let go more. Not only because of my experience, but also health wise, I feel like I have to.
It's really helped me to reevaluate the direction I was going in life - I definitely slowed down. I only work three days a week now, which I feel is more in balance with my family life. Especially with two kids, which I never would have done before. I was a real, determined workhorse before. I would work every spare minute of the day. My career was very important to me, and after my illness I realized that your career is only a small portion of your life. Luckily I have the financial advantage to be able to do that. My husband works full time, so we're able to find a balance there, but I really pulled back with work.
I realize that every day is a gift that I wouldn't necessarily have if I didn't have the privilege of living in a country where I had access to the treatments and the medical interventions, even though they were incorrect. I'm still grateful. I'm still thankful, and feel like maybe it had to happen that way for a reason.
I hope that my case helped other people. It helps people that I tell every day, because they realize that maybe it is important to get a second opinion on methodology or on their diagnosis where nobody would have thought of that before. Maybe these change protocols that were made to the hospital I was treated at have helped additional people that I'll never know. I'm grateful for that, and grateful for the fact that I had access to any treatment that in my case was hopefully curative. Just trying to find gratitude even in the moments when I'm suffering or in pain, I think is something that I wouldn't have done before cancer.
What advice do you have for others in a similar situation?
It was always very hard for me to accept help from people, even when I was going through the cancer. I'd probably go in with a different mindset now, and be more accepting of people who want to help.
People that want to help you when you're sick are doing it out of love. I always felt they were doing it out of pity or obligation, and it was hard for me to accept that, but now I see that people were offering that as a form of love. Not allowing them to provide you with that help was actually hurtful to them, and hurt me because I couldn't accept that help.