“My Voice” by Sandra Miceli

Sandra Miceli - 'Survivor'

In March 2005, I fell at work and as a result, I needed knee surgery and I had really hurt my back. After a lot of x-rays and physio, it was decided that they couldn’t do anything for my back and that I had to learn to live with my pain. After a few months, I went back to ask my doctor to do more tests for my back as I couldn’t accept the fact that just a fall could do irreversible damage. I was sent for a bone scan for my back and in the scan they found some irregular activity in my right breast and it was suggested that I have a mammogram if I had not had one done recently.

Three years before this incident, at 45, I was sent for a routine first mammogram and the experience was so painful that when two years later I was to repeat that mammogram exam, again, as a routine test, as part of my yearly physical exam, I decided I was not going to go since I mistakenly thought that I was too young to have breast cancer and I had no family history so why was I doing all this? I remember my woman doctor scolding me for not wanting to do the mammogram and I remember her telling me, “Sandra, if you ever get breast cancer, don’t blame me”. Wow, little did she know how those words would soon come to haunt me and I never did remind her of those words, out of embarrassment for her.

At this time, one day as I had just come out of the shower and was blow-drying my hair with my arms up to hold the dryer close to my hair, I noticed a dimpling in my right breast. I put down my arm and the dimpling went away but when I put my arm up again, there it was. I checked for lumps as I always did and I didn’t feel anything so I remember thinking, so this is what it’s like for your body to get old! I was surprised that my breast was looking like that by the age of 48, after all, I do take care of myself, use good creams, colour my hair, use great facial creams and wear nice clothes and I always have nice makeup on. Thinking this was just old age, I never told my doctor. All I knew about breast cancer at that time was that you must feel for lumps once a month and I did do that.

Going back to the beginning of my story, if I had not had my accident and if I had not insisted on having more tests, I probably would have never found my cancer till it was too late. You see, my lump was so deep into my breast, they called it at eight O’clock position, that I would have been diagnosed at a later stage. Although I still suffer with a lot of pain for my back and I have never been able to return back to work, I honestly believe that that accident happened for a reason and it has saved my life.

After the bone scan, I was sent for a mammogram, then an ultrasound followed that. By this time, I knew to brace myself for what was to come. This was getting serious! Soon, a biopsy followed. At the same time, my doctor had scheduled me to see a surgeon but I needed the test results of the biopsy to see him. I was seeing my doctor for the regular blood test results from my physical exam and they still had not received my biopsy results. I was seeing the surgeon within  two days and I still had no test results so I called to reschedule my appointment with the surgeon and I was told that they had received the results and that I was still seeing the surgeon in two days time. I called back my doctor and asked her why she did not have the results and I was told the doctor would call me back. On that day, I knew the doctor only worked till 3 pm but she called me at home from her house, something she never does, so I knew it was not good. I remember it was 6pm and she said, Sandra, it’s cancer. At first I was silent for a long time, processing it all in I guess, and then I started to cry and I asked her if it could be a mistake.  Of course it wasn’t!

Before the diagnosis, I had asked myself why would the doctor make an appointment for me with the surgeon before the results were back and when I asked her secretary she lied not to worry me and said because it takes time to see a surgeon so it was better to book it and cancel it if we had to. I thought that was strange as I had had six different surgeries before and I never had to wait for more than a couple of weeks each time and within two weeks after seeing the surgeon, I was having the surgery, each time! In Canada, we go to surgery within two weeks! But I went along with whatever the secretary had told me.

Two days later, I went to see the surgeon and he told me that from the mammogram it looks like it was a small tumour and that I would not even have to have chemo. He explained both the lumpectomy and the mastectomy procedures and he said it was up to me to decide which way to go. He said that either way would give me the same high rate of survival but he said some women prefer to have the mastectomy because they were afraid of recurrence, . I then asked him if I were his wife or mother, what would he suggest? I did not have any knowledge to decide on such a huge decision! I remember him telling me that because I was still young, (48), and the tumour seems to be around one cm, he would suggest lumpectomy with radiation treatments. I was so scared even my husband could not console me and I cried in the doctor’s office and I asked a lot of questions. I apologized to him for keeping him with questions and he said he prefers to know where his patients are so that he knows where he stands and that I could take all the time to ask all my questions. I thought how generous he was being, given that he had an office full of people waiting to see him. He asked his secretary to book my surgery right away and he told her that he wanted the surgery done within two weeks and if need be, to move other patients because as he put it, he did not want me to wait, seeing how scared and upset I was. Sure enough, I left his office with a surgery date of exactly two weeks from that day! I hoped that that day would never come!

We went home and I read the book he gave me about breast cancer from cover to cover. I also called the Canadian Cancer Society to see if they had any pamphlets to read and I was surprised to receive a whole package by courier just two day later, with all kinds of information, including books. Wow! They had also connected me with another breast cancer survivor to talk to and ask her questions, to have her for support through my new journey.

I did a lot of crying and the day of the surgery came by. I remember my husband driving me to the hospital with me crying and not having slept one second the night before. I was so scared I was thinking of having my husband take me back home but then reality checked in and thought of how I would have to go through that intolerable, sleepless night again before surgery and so I went, crying all the way. I never cry but this day was different. I had never felt so scared in all my life, going into surgery and I prayed to my mum whom I had lost just seven months prior to all this, to pray to God to spare my life. I was scared for my twenty year old son not to have a mother.

I had my surgery and I was sent home the next day. I was surprised I was not in pain. A home-care nurse was assigned to come see me the following day and she came everyday for a while. When the pathology results came in after two weeks, I was told that the tumour was larger and it had three heads. My tumour was 3.2cm in all and the sentinel node was positive so I needed to go back to surgery within one month to take more lymph nodes out to see how much the cancer had spread! What? This must be a mistake I thought! This was a cruel joke to have me go through this again and so soon! My first surgery was November 30th, 2006 and my second surgery was scheduled for January 3rd, 2007. Some Christmas this was going to be!

I had my second surgery and again  I was sent home the following day, this time with a drain coming out of my breast. The same home care nurse used to come see me on a daily basis for two weeks to clean the wound and clear my drain.

By this time, the results from my second surgery came in and none of the twelve lymph nodes they removed were positive! But, because the sentinel node WAS positive, then I also had to have chemotherapy! I felt each time I went to see the surgeon, the news got worse! I was diagnosed with stage two breast cancer but it was slow growing. Some good news at last!

I was seeing the medical oncologist within days and he started me on chemo on January 25th. I was devastated when he explained about the hair loss, not that I had beautiful hair but being a woman, hair defines what we look like.

I was to have six cycles of chemo, once every three weeks. By the second cycle, my hair had started to fall out and when I thought I looked like Frankenstein’s daughter, I asked my husband to buzz it off. I was not expecting my huge reaction to this loss! When I looked at myself in the mirror, I finally looked like I had cancer and I sobbed!

Chemo treatments were very hard on me and with each cycle, I was so nauseated that I could not get out of bed for ten days each time and I could not eat anything but fresh fruit. I lost twenty pounds! When I was starting to feel better, after a few days I was scheduled to go back for another cycle. After the first cycle, I was scheduled to go in to have a picc line inserted inside my arm with a tube that went from the top of my heart all the way to my upper arm and with a valve-like thing that allowed the medical staff to take blood samples easily before each chemo treatment and I was given chemo through it as well, A picc line is inserted so that it makes it easier for treatments and it does not collapse your veins during chemo.

A picc line should mostly be uneventful, however, I must always be different!  From the moment they put it in, I felt my arm going numb and each time I complained about it to the home-care nurse and to the oncologist, they were not concerned. I was told it takes some time to get used to a foreign object and that I would soon get used to it. Weeks later, my arm was so heavy I couldn’t use it and I was in a lot of pain and it was swollen. An MRI showed that I had blood cloths and they had already started to break and travel so I had to start having daily blood thinning injections for a whole year!!!!! Just my luck I thought again! If I had not insisted again, the cloths could have killed me.

One month after my last chemo treatment, I started 21 sessions of radiation, 16 all over the breast and 5 booster ones, just where I had the tumour. That went mostly uneventful.

I have finished all my treatments in  August 2007. At the end of the treatments I went into a bit of a depression but I was told that was expected and normal but nothing major. After the treatments, the next step is to take medication for five years to reduce the amount of estrogen my body produces as my tumour was estrogen positive, this is good news. Medication will starve any future tumours from estrogen. I took Arimidex for one year and I was switched to Femara, another medication that does the same thing but recent tests had shown that Femara was showing better results for non recurrence. Both drugs have bad side effects and are very expensive and must be taken for the total of five years.  So I have chosen to trade in cancer recurrence to live with the bad side effects of major and frequent hot flashes, joint pain that keeps me awake at night till I am totally exhausted to fall asleep, and others.

I started this journey crying with each bad news at each doctor’s visit but I have grown so much through this cancer that as soon as I finished treatments, I joined a support group on the internet. Mostly are women from the US and of course I am Canadian but I was welcomed with open arms by the creator of the site, a survivor herself and fighting it for the second time,  and when she heard that I was going to start Peer Support Volunteer training with the Canadian Cancer Society, she embraced me and connected me with newly diagnosed women with breast cancer and some of these women were angry and scared and I feel their pain because I was there myself not long ago. Sadly, we lost the creator and other women and two days ago we also lost the creator’s sister and another woman, all young mothers in their early to mid forties and both had also lost their battle after their second fight.

Over this time, I have talked to a lot of women who have shared their experiences where doctors did not believe their concerns of lumps because they were too young and then their cancers spread or were diagnosed with a late stage of cancer which of course reduces your mortality rate and your chance of beating it . I made it a point to read some of the best books written about breast cancer because I was so ignorant about what to look for before my diagnosis in 2006 and I wanted to know all there was to know and to share it with others.

We are always told to do breast exams and to feel for lumps but I never felt mine! There are other clear indications to watch out for breast cancer, like dimpling, like I had and for the worst breast cancer you can have which is Inflammatory Breast Cancer where the breast would be red, hot and tender, with the skin turning like orange peel and the nipple could be inverted. The cancer is not a tumour in this case but calcifications all over the breast. In most cases, doctors diagnose this as a breast infection and try to treat it with antibiotics which of course does not help. By the time they diagnose it as cancer it is mostly diagnosed as stage four, These are all clear signs of breast cancer and yet, to this day, the only education about breast cancer is just to feel for lumps! And if I hear about one more woman who went to the doctor, usually older men doctors, and told they were too young to have breast cancer and not to worry about their lumps, I will scream bloody murder!

I feel that the reason I got breast cancer is to educate as much as I can about the different signs of breast cancer and not to give in to doctors who do not listen to the patient’s concerns. I was lucky to have a doctor, a woman doctor who took no chances and followed up and didn’t give up on me and my ignorance about mammograms and signs of breast cancer.   I am also sensitive to the newly diagnosed women because I know their fear and their pain, I was there too, not too long ago myself.

My prognosis is good, I am in remission for almost three and a half years since I was diagnosed in 2006 and I thank God everyday for my second chance. I have learnt not to sweat the small stuff, to have more empathy to the newly diagnosed and their families and to not complain about silly material things and never to complain about bad hair days! Yes, my hair did grow back, very curly at first and I never liked curly hair on me  but it has grown long and straighter like it was before. I will go the extra mile and out of my way to help anyone in need. I am a much better person for cancer!

This entry was posted on Monday, May 3rd, 2010 at 10:44 am and is filed under written word and tagged with Breast Cancer, IBC, inflammatory breast cancer, Sandra Miceli.