The Creation of PINC and My Story - by Elizabeth Dill-Isgro

My name is Elizabeth Dill-Isgro. I am 35 years old and a three year breast cancer survivor.

On January 18, 2002, while taking a leisurely bath, I found a lump the size of a golf ball under my right breast.

No one in my family has had cancer, let alone breast cancer, so I thought maybe it was just a cyst. To be safe, I called my doctor and got an appointment that day. And then began the roller coaster ride.

First came the mammogram, then a breast biopsy and as each test went by, the tumor was growing in my breast. It had now gone from the size of a golf ball to the size of a baseball. On February 18, 2002, I was diagnosed with Breast Cancer. Each time I went to my surgeon I brought a friend, but on that day I went alone.

My doctor walked in the room and said *Oh you came alone today* and that was all she had to say. As she spoke I felt like I was having an out of body experience. I could hear this person talking to me saying things like cancer, surgery, mastectomy and chemotherapy, I felt like I would faint. I left the office, called my sisters and asked them to drive to my Mothers to tell her as I feared what the news might do to her and I did not want her to be alone. They scheduled me for a mastectomy the following week.

How could this be happening!! I was 32 years old, had a great job as General Manager of a Media Company, did some modelling on the side, jogged everyday to keep my slender figure and spent one hell of a lot of money on my long hair to get that beautiful Natural look. The hair that I spent close to $150.00 a month on that would soon lay in a pool of water in the drain in my shower.

After my surgery I was sent home with one breast, drains coming out of me where my breast once sat and a prescription to prevent infection. What about a prescription for sanity!!!! I lay for about a month in the fetal position asking the unanswerable question WHY ME!!! I was convinced I was going to die. I could not sleep and would call my mother, a friend or pretty much anyone I could find at 3 am in the morning in tears.

I remember one evening going to my closet and dresser, then proceeded to throw out every stick of clothing I had that showed any kind of femininity. All my bikinis, my sexy dresses, low cut shirts … one by one tossed away like my breast. Why did I need these? I was never going to be sexy again. I had one breast and cancer.

Then came shopping for a bra and prosthesis. This only laminated my theory that I could not be sexy again! I went to a store that sold bras and prosthesis for women who had undergone a mastectomy. They also sold bathing suits, so I thought I would pick one of those up while I was there also. If you have never been unfortunate enough to look for one of these items you will not know how absolutely ugly they are. Not just for what they stand for, but the actual look of them.

I tried to be cheerful as I combed through the bras they carried, however, all were pretty much the same. The straps were big, the material resembled the pattern and shine of the bras I always saw my grandmother wear and not one clue of anything sexy!!! So I picked the best of the worst and continued on to look for my new prosthesis, which turned out to be really easy, or so I thought. I asked the girl to show me what they had.

Depending on your financial situation you could have anything from something that resembled a sock, to the state of the art silicone prosthesis for $300.00. I was lucky to be able to afford the better one and so that is what I chose. The girl asked me what size my breast was, a 34B, so over she handed me my new breast and we popped it into the bra!! Seemed pretty easy, but I thought “this is going to take some getting used to”. It felt so heavy!!!! It was not until months later when I went to another store looking for a mastectomy bra, did I learn that it is not supposed to feel so heavy and ill fitting!!! The wonderful sales lady at the new store I went to explained to me that whomever I had bought the original from should have fitted me properly by measuring my shoulder and chest area. She gave me another bra and prosthesis to try on....what a difference. She told me that most stores are required to be trained to fit woman for these items and it is a shame that so many people are unaware of this. As a result, many women end up with such uncomfortable purchases. Although no bra or prosthesis will make you feel 100% naturally you...when fitted properly, it will at least give you the confidence you rightly deserve.

Next came the bathing suit!!! OH THE HORROR OF IT ALL!!! How could this be happening to me!! I was only 32 years old. But I have learned that the facts are that more and more woman under 40 are developing breast cancer. Have you ever seen a mastectomy bathing suit, argghhh!!! I believe they were designed in the Marilyn Monroe days as most are large loud prints, scooped higher towards the neck, and long in the torso almost as though having a small skirt at the bottom. Definitely not what I was looking for.

There are many women out there who have the figures and/or the confidence to wear a more revealing bathing suit, and I am one of those women. After I wallowed once again in self pity, I came up with a plan.

I went to a REGULAR bathing suit shop and found myself a couple of nice tankini bathing suits. You know the ones that are two-piece, but instead of your stringy bikini or revealing top, the top is more like a tank top. So I bought three and took them to a seamstress. I showed her the pocket in my mastectomy bra and asked her to sew one in each of the bathing suits. It was a chance, but I thought it might work. And it did work … it worked extremely well. I put in my prosthesis and no one could tell.

This led the way to more ideas. I went and bought tank tops that had shelf bras, so you had extra support under the bust and had pockets sewn in. Because the shelf helped hold up the prosthesis I was able to wear the tank tops with the small straps again and did not need to wear my big prosthesis bra. I had found a way to feel feminine again.

I was scheduled to meet with my oncologist, Dr. Zibdawi at Southlake Regional Health Center in Newmarket, Ontario in March, to determine my pathology and schedule chemotherapy. When I went to my appointment, I was informed that I had Stage 3 advanced breast cancer, estrogen positive, and the cancer had spread to my lymph nodes.

Dr. Zibdawi and Naz, the head of clinical trials, who has now become like a second Mother to me, suggested I participate in a clinical trial of chemotherapy that would mean 6 cycles of chemo. The hardest day was still yet to come. That was the day they scheduled me for x-rays, a bone scan and a liver ultrasound to determine if the cancer had spread anywhere else in my body. I could not stop crying the whole day … thinking the worst of course. My Doctors once again came to my rescue and called me before days end to let me know it had not spread into my body. The chemotherapy would begin soon.

The next battle was the hair loss. My sister cut my long hair shorter so when the hair started to fall out it would not be so traumatic. I can tell after the fact that the pieces that came out were shorter were no less traumatic!

Two weeks after my first treatment, it began. I was in the shower and began to notice strands of hair in the drain. I couldn’t help myself and started to pull at it … it just came out like it was not attached to anything. All of the sudden I was staring at this ball of my hair on the counter. I called a friend of mine and we got together to shave my head. It was kind of liberating … but it was so weird seeing myself bald.

I had already ordered my wig from a store in Toronto. I had found them in the yellow pages a few weeks before I lost my hair and went down to be fitted for a wig. I had decided to spend the money and get a real hair wig, which cost $1700. They tried a wig on me that had already been cut and styled. It was so soft, light and natural feeling I thought this will not be so bad. She told me it was the finest European hair and although it cost $2000.00 she would give it to me for $1700.00 They would also order me in a custom one, which would be then coloured and cut to match my hair. Perfect, I thought. I left her a $1000.00 deposit.

It was strange when I went to get pick it up. They put it on my head and it felt heavy and thick. I questioned her on this fact and she replied it just felt heavier because I was now bald. Made sense to me, I guess. She was the expert and this was my first wig. So they cut it according to the picture I showed them. After they were done, it looked nothing like the picture. The picture of me had long layers down to my shoulder … they cut it into a bob at my shoulder. I felt so sick from the chemotherapy and was so intimidated sitting in the salon with five other people having their wigs done around me...that when she said that it “looked great and it was just I had to get used to it”, I thought again, “okay, your the expert”...but it never did feel right. I ended up buying two more wigs because I hated that one so much.

When I called the store to tell her of my unhappiness with my wig...she replied the wig was fine and I was just angry because I had cancer. I could not believe it. Finally, one day, I took the time to call the greatest hair prosthesis company I have ever found … Continental Hair in downtown Toronto.

I spoke with the owner Michael and told him my problem. He told me to come down and they would see if they could fix my wig. When I got there he asked me what kind of hair it was, I said, “European”. He called a girl into the PRIVATE ROOM they do their consultations and cutting in and asked her what kind of hair my wig was. She said, “Asian hair”. I was shocked. Michael told me Asian hair is thicker and cost much less than European hair. He went on to tell me that this is not the first time this lady had done this either and he had other clients that had been shafted. I told her I was going to sue her...so he said let me see your receipt. He showed me how she does this...on my receipt for the deposit, she simply wrote -ONE - 100% HUMAN HAIR WIG - $1700. She did not actually specify what type of hair and therefore could get off the hook. It is unbelievable that anyone could do this to people when they are already going through such trauma.

Michael and his staff helped me and since then have become people I trust to send anyone else I know to...what a difference the right people make.

I was very lucky to have the excellent care of Dr. Zibdawi, Naz and the nurses in the cancer clinic at Southlake. Each time I came for chemo, they greeted me with smiling faces and hugs when tears could not be suppressed. They answered every question with heart felt sincerity and true interest in me, not only as a patient, but as a person. One day Naz came in the waiting room and found me crying. She took me across the hall and asked if she could help. I told her I was shopping the day before with my mother and saw another mother and her daughter out together giggling and laughing. I told her I could not understand why this was happening to me, why am I out shopping with my mother … weak with one breast and a wig. Each time I saw a girl my age enjoying life, I got angry. Naz asked me how I knew they had not had cancer. She said in a few years my hair will grow back, my strength will return and I would look just like them again. I realized she was right. When we look at someone, we really do not know what they have been through or are going through. I make it a point to try and be nice to everyone now, you never know that person you are opening the door for may be going through chemo and using their little bit of energy just to get out that day for air.

I was lucky enough to have an excellent support network. Each chemo I had my own Team. My family all came and took turns being with me as I sat for the four to five hours while being fed medication through intravenous. Not only did they help me though, they tried to help everyone. As my sisters and mothers would sit with me they would talk to these complete strangers who now suddenly shared this bond with us. We were members of a new club....The Cancer Club.

I am happy to say I finished my chemotherapy on July 10, 2002. The cancer was now in remission, gone but never forgotten.
Since then I have had another prophylactic mastectomy to reduce the risk of it returning in my other breast, a hysterectomy and oopherectomy to shut down the production of estrogen and breast reconstruction. I also had some lovely implants, we like to call the THE TWINS, put in. Not a size B, like my former breast, but I chose a size D … I say go big or go home.

I have found a new strength due to my cancer and am very open with people about my past. I am proud to be a breast cancer survivor and if telling my story can prompt another woman to be more diligent about self breast examination, I may be lucky enough to be helping save a life. And when you need some hope, I can tell you, it’s there. You just have to grab it.

One of the worst things of having cancer was thinking of all the things you have put off over the years. I had always wanted to travel, but kept putting it off. In the last three years I have been to Mexico four times, Las Vegas twice, Dominican Republic twice, Cuba, gone on a cruise and most recently went to Hawaii. Live your life for today, because you never know if there will be a tomorrow.

In addition to my hectic travel schedule, I have been working at trying to get PINC going.

PINC stands for the Personal Information Network on Cancer. From the experiences I had during my journey and seeing and learning about the things that I felt were missing and needed, I decided that I really wanted to help to try and make a difference. To fight back. And to help others in their fight.

I approached the President of the company I used to work for, Jim Payetta. He loved the idea of building a company that not only showed a profit, but compassion … and whose business it is to help people. PINC is the result.

Our goal is to raise awareness, educate, assist patients and raise funds. There is a community of people dedicated to educating and finding a cure for breast cancer. We are part of that community. We want to give people the support and resources they need to deal with this disease and make sure they have the information available to make the right decisions without have to endure some of the agony I did when searching for answers from so called TRUSTWORTHY people.

I have become involved.

I went in the CIBC Run For the Cure the last three years in a row and actually raised the most money for an individual in the Barrie Run the first year. Our community team raised the most amount of money in both the last two years.. I have also given many speeches at charity events and most recently assisted as a facilitator in my local Breast Cancer Support Group.

In March of 2002 I remember laying in bed sick from chemotherapy and looking out the window. It was snowing. I took in every moment of that snow fall … thinking maybe it would be the last I ever saw. The first time it snowed that December, I cried. I had made it. I had seen the snow again and so much more. I see everything brighter and with new perspective. Cancer took a breast, but gave me a life. I life I hadn’t planned.

Now, three years later, I have been diagnosed with a recurrence of breast cancer and must start treatments again. This time, I am not as scared. I know the days of uncertainty and depression will rear its ugly head again. But I also know that this time, I have no regrets. I was lucky enough this year to marry my Angel, Mario, who has taken care of me and loved me with a devotion I have never known.

Being that I have metastatic breast cancer, my disease is considered non-curable. But that was no matter to my Angel. He married me. And I know he is devoted to making my life as happy as we can, for as long as we can. None of us know what tomorrow brings.

I have lived my life to the fullest and will continue to do so everyday. That is what being a SURVIVOR is all about..

If one day you are the one that gets told “I’m sorry, it’s cancer”, go ahead … get mad. Get angry. Get scared. Then learn to take it as a new challenge and add CANCER SURVIVOR to your resume.

REFUSE TO LOSE!