Sadly, Heather passed away on June 15, 2014 at the age of 35. She was surrounded and loved by her husband and two beautiful children. She inspired so many and her smile could illuminate a whole room. Thank you, Heather, for passing into our lives and for encouraging us to live our lives to the fullest. We will miss you.

Heather’s profile was updated on April 11, 2012. Click here for the newer info.

Age: 33

Hometown: I was born and raised in Botwood, NL but now call Middle Sackville, NS my home.

What was/is your diagnosis? Epitheloid Sarcoma

What is/was your occupation? For over 10 years I have worked in the social service industry with a specific focus on youth and addictions. I currently work with homeless and at-risk youth at a street front drop-in centre in downtown Halifax, NS.

 

Your Cancer experience:

How did you find out you were sick? What led to your diagnosis?

In October of 2010 while at a routine doctor’s appointment for my then nine-month-old daughter, I asked my doctor to feel a lump in my right buttock cheek. It was not painful and my assumption was I must have bumped the area, although I could not recall doing so. My doctor diagnosed it as a lipoma (a fatty cyst) and said it was nothing to worry about.

As weeks passed the lump became more of a nuisance and sitting on hard surfaces proved difficult. It still did not cause much pain so I was not overly concerned. Over time however, the lump began to grow and cause discomfort. The area became discolored and would ache at the end of the day. I requested to have the lump removed and was referred to a general surgeon. The wait time was three months.

In the meantime I saw two other doctors at a walk-in clinic; the first went along with the original diagnosis, the second was more concerned and thought I should get an ultrasound.

By December of 2010 the lump was noticeable through my clothing and at the urging of my family I went to the ER to request an ultrasound. Once an ultrasound was performed, things progressed quickly. The images produced were described as “alarming.”  I was immediately referred to an orthopedic surgeon and an MRI was arranged.

The surgeon described the MRI as “nasty.”  Following the MRI, I was told a biopsy was necessary to confirm a diagnosis. On February 2, 2011 I underwent a biopsy surgery. My diagnosis was confirmed on February 7, 2011—a day I will never forget.

I had High Grade Pleomorphic Spindle Cell Sarcoma and arrangements were quickly made to have a complete excision of the tumor. The tumor was large and aggressive and we needed to rule out spread to my lungs. It was a lot to take in. I had a CT scan the same day. Thankfully the silver lining on what was my darkest day was that the tumor had not spread.

What year was it? What was your age at the time?

I received my diagnosis on February 7, 2011 at the age of 32.

In which hospital were you treated?

I was treated at the QEII Health Sciences Centre, Halifax, NS (specifically at the Halifax Infirmary and the NS Cancer Centre in the Dickson Centre).

What were your first thoughts when diagnosed?

I was shocked. I never thought for a moment the lump would be diagnosed as cancer—even following the “alarming” ultrasound and the “nasty” MRI. Even after the biopsy results came back faster than the surgeon’s secretary had ever seen. Even while my husband and I waited at the hospital five days after my biopsy to discuss the results. I was not worried. I was not scared. I really thought the lump would be benign and that it was just some strange cyst growing there. Looking back now perhaps I was in denial and this was my way of coping.

When the doctor told me that spread was possible I was petrified. I wasn’t even sick and couldn’t fathom how that was possible. The moment I was told that my cancer metastasizes to the lungs was my breaking point. All I could do was sob. I immediately became fearful for my future and for my family. Up until that day I was a young, healthy, active mom of two young kids (ages 13 months and four years) and cancer was not part of my plan.

How did your family react?  

My husband was present the day of diagnosis. He was visibly upset and found it hard to take in. He later told me he knew it was going to bad when we got called back so quickly following my biopsy. He has stood by me throughout my entire journey and continues to be a pillar of strength.

My children were too young to understand what was happening. My oldest simply believed mommy had a bad leg which doctors needed to fix. I was thankful we never had to get into the details with them. I was also thankful how grounded they kept me. Life never stops with small children and that helped in so many ways.

My parents and sister were shocked at what was happening. I think they took the news the hardest. I always tried to remain upbeat and optimistic in order to lessen the worry.

How did your friends react? Were you treated differently, or did things remain the same?

I have a wonderful circle of supportive friends. Initially I struggled with who to tell and how to do it. With so many social network sites, I did not want word to get to those most important to me through such a medium. Although people were shocked at the news, their support was amazing. Those close by visited, brought meals, flowers and thoughtful “feel-good” gifts. Those from afar sent many inspiring emails and words of encouragement.

Once the acute phase of my illness was over however, many stopped connecting regularly with me. Life never stops for anyone and I don’t expect it to, however, sometimes people fail to realize that the healing process is still ongoing and it involves far more than an initial surgery. I get comments all the time from folks saying how good I look and they assume everything is better. Many people have this idea that every cancer patient is frail and bald. This is unfortunate but I believe they simply do not know. I try to broaden peoples’ knowledge whenever possible so they can have a better understanding.

What did your treatment consist of?

I underwent two surgeries in February 2011, both within a few weeks of each another. The first was a biopsy on February 2. The second was a complete tumor excision on February 18. The second surgery involved a significant portion of tissue, fat and muscle (gluteus maximus) being removed. I now have a large indentation in my buttock cheek.

Once I healed from surgery and the final pathology report was complete I underwent radiation therapy. One of the margins of the surgery was small and doctors decided radiation treatment should follow. I completed 35 treatments, which took seven weeks and started in May 2011.

Fatigue was not a huge factor for me. However, my skin deteriorated badly, most notably two weeks post radiation, causing weeks of extreme discomfort to the point where any type of clothing caused pain.

Following my treatment, I attended weekly physiotherapy and manual lymphatic drainage massages (I now suffer from lymphedema in my right leg). This is ongoing. There are still limitations with my leg. Due to surgery and radiation, a large amount of scar tissue has built up causing my mobility to be altered. I experience pain in my lower back and pelvis as a result of moving differently. Bending over is difficult. Lifting my leg up to put on socks or trim my toenails is difficult. But I am told this will improve with time.

Most recently I underwent another surgery. In November 2011 I discovered a lump in my groin. Spread to lymph nodes is not common with my sarcoma type. However, an MRI of this lump was inconclusive and my surgeon wanted to err on the side of caution. On January 5, 2012 I had the lump removed. I am still awaiting biopsy results.

Emotionally I have held up well. I am a very positive, upbeat person by nature. I would say 95 per cent of the time I am OK. However, there are times when the enormity of the situation hits me and I become emotional. In these moments I worry about the future and if and when something might return. With each follow-up appointment there is anxiety about the outcome. But overall, I am confident I have beaten this disease.

What is your current medical status?

Currently I am cancer-free. I continue to be monitored every three months.

How is life different for you now post diagnosis?

A lot has changed over the past year. As clichéd as it may sound, I appreciate everything more. Every morning I wake up I am thankful to be alive. The love I have for my family is more enormous than I thought possible. I cherish every moment with my children (even the sleepless nights and tantrums!). I don’t take anything for granted.

Physically, there are definite changes. I was super active before all of this, especially with my kids. I cannot play tag with my children. I cannot take them to the swimming pool without help. I cannot run with my running buddies who are currently training for a half marathon. I cannot sit for long periods of time. Sleep positions are difficult. I no longer menstruate and may go into menopause early. I cannot wear tight fitting clothes (sweats are my new staple). But I am convinced that all of these things are temporary and before long I will enjoy everything again.

What is/was the toughest part of your challenge?

Finding folks I could relate to and who really understood what I was going through. Only once during the course of my treatment did I ever see anyone remotely close to my age. Patients at the cancer centre were much older. I always felt out of place and that everyone was looking at me. Most people assumed I had breast cancer.

Additionally, I sometimes find it difficult to be patient with recovery. There are days I wish I was back to my old self and as physically active as I once was. I also find it frustrating that many assume now that the acute phase is over that I am all better. They do not understand there are still so many pieces to my recovery, including endless hospital appointments.

And finally, being at home and not working is isolating and sometimes lonely. I have been off work since February 2011 due to my illness. I hope to get back to my job soon.

What was the best lesson you took away from your challenge?

You never know what life has in store for you and therefore must live each day to the fullest. Prior to my diagnosis I was a young, healthy, wife and mother who never thought about cancer. Once diagnosed, we decided to sell our home and move into a neighborhood with a large piece of land. This was something I had wanted to do for several years but didn’t. I wanted my children to have a place to run and play. I wanted a fire pit. I wanted a tire swing. Now we have all of these things because I have learned that life is just too short.

I have also learned that when it comes to your health, you have to be your own advocate. You know your own body best. You cannot settle taking a number and standing in line.

More practically speaking, I have also learned the importance of understanding your insurance coverage and considering health coverage on loans and mortgages.

What really motivates you?

Definitely my family and especially my children. I wanted to keep as much normalcy in our lives as possible and therefore did as much with the kids as my body could tolerate.

I have so much to teach my children and so many milestones yet to witness. I do not want to miss a moment.

What are your thoughts and feelings about your illness now?

I truly believe that I am a survivor and will remain cancer-free for the rest of my days. I also believe there was a bigger purpose for me receiving my diagnosis. I hope to continue to live each day with my new perspective and to offer support to those going through similar experiences.

What are some preventative measures people can take to lower their risk of having an experience like yours?

Advocate, advocate, advocate for yourself. If you don’t agree with what your doctor says, get another opinion. Don’t waste time. Trust your instincts.

Did you attend any support groups during your challenge?

No, but I did speak to a social worker at the Cancer Centre while I was undergoing radiation. I found it helpful as it provided a safe space to discuss my fears and frustrations, something I chose not to do much with my own family.

How are you connected with Young Adult Cancer Canada?

A social worker at the cancer centre advised me about this organization. She thought it might be helpful connecting with people my own age, as that was one of the frustrations I spoke with her about.

I hope that providing my story and getting involved I will be able to connect with people going through similar situations.

Are you interested in helping others facing cancer challenges?  If so please let us know how you can be contacted.

Absolutely YES. I would LOVE to get involved in any way possible. My career involves helping others, something I am passionate about doing. If my journey and experience can help others, then count me in!

Update

So much has changed since I wrote my profile in early January 2012. When it went live on the YACC site in early March I found it difficult to read. So much had changed in a matter of weeks. I was not cancer-free like I thought. Instead, I was preparing for a bilateral lung resection to remove three tumors that had surfaced in my lungs.

On January 24, 2012, I returned to my surgeon for a follow-up appointment following my January 5 groin surgery. I was positive and upbeat. It was almost three weeks since my surgery and I thought if this new lump was something bad, I would have been called back sooner. When the doctor came in and said, “the news is not good and not what you want to hear,” I fell apart. I could not believe what was happening. I cried. I shook. I swore. The cancer had metastasized to a lymph node and now I was dealing with spread, something far more concerning. I was told this was not a common place for my sarcoma to spread and that perhaps doctors had missed something in the original diagnosis.

My specimens (the buttock and groin) were sent to Nebraska and I was eventually told the tumors were characteristic of Epitheloid Sarcoma. I was referred to a medical oncologist and would need additional tests to determine if there was further spread.

On February 1 I had a CAT scan of my chest, abdomen and pelvis and the following day met with the oncologist. The oncologist delivered news that nearly brought me to my knees: the CAT scan showed three tumors in my lungs. I immediately broke down. I slumped over in my chair. I started to shake. I covered my face. I was absolutely petrified. I was told this cancer was rare and aggressive. In addition, I was told it does not respond to chemotherapy and therefore chemo could not cure me. Surgery was the only cure. The tumors were small and perhaps operable but I would need additional tests to rule out additional spread. If there was further spread surgery would likely not be performed and I would simply be managed with chemotherapy to keep the disease under control. A PET scan would be arranged and following that, a referral to a thoracic surgeon.

I thought receiving my diagnosis less than one year ago was my darkest day. This appointment trumped all of that. I felt like the world was crashing down around me. I felt like I had been punched in the stomach while I was already down. I felt like I was being given a death sentence. For the first time ever, I feared that I would die.

I don’t recall the exact events of the days leading up to the PET scan. What I do know is how absolutely petrified and helpless I felt. I thought about my death. I thought about some short-term wishes I had. I cried a lot. I found it hard to get out of bed. My positive, upbeat attitude disappeared. It was hard to keep focused and not allow my children to see me falling apart in front of their eyes. I did my best.

On February 13 I had a PET scan and a meeting with a thoracic surgeon. The scan showed no additional spread and the surgeon was confident he could remove the tumors. This was the best news I could have received.

A few days later I was given a surgery date of March 13. With little time to plan, I decided my family and I would take a much-needed vacation before the surgery. In six short days we planned our first ever trip to Disney World, a place I always dreamed of taking my children. We spent two magical weeks in Florida and it truly was the trip of a lifetime. It was so nice to be free from hospitals, appointments and worry. It was the best medicine for everyone.

On March 13, five days after returning from sunny Florida, I underwent a bilateral lung resection. Two of the three tumors were removed and by all accounts it was a success. I spent two nights in hospital and am currently at home recovering.

Physically I am doing very well. I am still quite sore but my lung capacity and breathing are not terribly affected. I am also happy to report that my mental health is much better. I have slowly regained my positive outlook and continue to hold on to the hope that all will be well. Beating this disease is my only option and I will stop at nothing to get there. I have far too much to live for. My third lung tumor and the lymph nodes in my groin will be monitored closely. I have another CAT scan in two weeks.

Although each scan and follow-up appointment is extremely stressful, I remind myself of something another cancer survivor I met through this organization told me. “Your fears are not your reality.”  This has become my new life mantra and I am learning to take this journey one step at a time. Cancer is a “watch and wait” kind of disease which can sometimes be tough. But while I watch and wait I’ll celebrate every moment, however big or small.