The ‘accidental patient’

PROVIDENCE – Remember the old Monty Python sketches that included the tagline, “Nobody expects the Spanish Inquisition”? Monty knew the truth: Bad things can sneak up on you, anytime and anywhere.

I’ve thought about that line many times during the last three months; before June 6, I defined myself as a wife, mother, daughter, friend and development professional. Since June 6, I have added “breast cancer patient” to that definition.

Cancer wasn’t even on my radar. My immediate family included no relatives with any cancer; there was, however, some history of cancer among more distant relatives, including a great-grandmother, great-aunt and cousin.

So, when I felt a lump in my breast last February, my doctor assured me that it was just dense tissue and that we would monitor it.  In May, another doctor said that, if it would make me feel better, she would send me for a mammogram. The mammogram proved my doctors correct: The lump on my right breast was nothing, but they saw something suspicious on the left. That was on a Friday; on the following Tuesday, I had a biopsy. On Thursday, I was diagnosed with invasive ductal carcinoma, the most common form of breast cancer. I turned 39 one week later.

Immediately after receiving the diagnosis, I entered what I call the “pincushion phase,” with more scans and tests than you can imagine. One doctor described this phase as beginning with all questions and no answers and slowly, but surely, getting more answers.

I have triple negative breast cancer (TNBC), meaning that the tumor does not respond to any hormones. Ten to 20 percent of all diagnosed breast cancers are TNBC, but it is more common in people who are diagnosed before age 40.  The good news is that those with TNBC don’t need hormone replacement therapy after treatment. The bad news is that the only treatment proven to work is chemotherapy.

I had genetic testing done to see if I carried the BRCA1 or 2 genetic mutation, one that actress Angelina Jolie, who had a prophylactic double mastectomy, carries.

Links between a diagnosis before age 40, TNBC and carrying the gene exist, and I learned that I do carry a BRCA1 mutation.

Being BRCA positive puts individuals at a higher risk for breast, ovarian, pancreatic and prostate cancer (the latter is the only cancer I don’t need to worry about).

Women with a BRCA mutation have an 87 percent chance of developing breast cancer during their lifetime, compared to women in the general population, who have an eight percent likelihood.  Those with the BRCA mutation who haven’t tested positive for cancer should be monitored carefully so any cancer could be detected sooner. Although a family history of cancer is a risk factor, anyone – with or without any family history – can be diagnosed with cancer.

As the mother of two young children, knowing the risk of a recurrence of cancer was most important to me. The genetics specialists explained that I had a 27 percent chance of getting breast cancer again in the next five years and a 64 percent chance by age 70.  That specter hanging over my shoulder has made many treatment and surgical decisions easier.

At present, I am receiving chemotherapy. I just finished my first four cycles of chemo and these were the ones with the worst side effects: hair loss, extreme fatigue and chemo brain – a state of complete fogginess and forgetfulness. Then, I’ll have a respite of a few weeks before starting a 12-week cycle of another chemotherapy drug.  Later, I will have surgery.

My family and friends have been incredibly supportive and our children are handling things as well as kids can handle something like this. I am fortunate to have fabulous doctors, nurses and counselors at The Miriam Hospital.

I believe that knowledge is power; while I would have preferred to put my head in the sand and not acknowledge that women my age get cancer, here I am!

In the last few years, several of my friends were diagnosed with breast cancer and most did not have a family history. It is important to be aware of your family history and changes in your body – take charge of your health.

The next few months will bring twists and turns, but I know I will come out of this stronger and with a different attitude.

As my daughter, age 8, said to me at the beginning of this journey, “This sucks, but you will be fine.”

That sums it up for me.

Sara Masri (smasri1@cox.net) lives in Providence.

Tips and techniques for the cancer patient and those who love him … or her

By Sara Masri

Special to The Jewish Voice

• If you do not ask for help, none will come.

I don’t like asking for help, but desperate times call for desperate measures. One friend coordinated a meal delivery calendar; thanks to generous friends and family, I have not cooked a meal in six weeks. Other friends have brought groceries or gotten me out of the house for walks.  You just have to ask.

• Even if you have nothing to say, say something.

Talking to someone with cancer can be difficult. What do you say to someone who has cancer? Saying something is better than pretending the situation is not happening.  I read every card, email and text I receive; they are my lifeline. One friend sends me an “XO” text almost daily, another sends funny emails and a cousin sends me a fact-of-the-day that always makes me laugh.

“I am thinking of you and I am there for you” is better than ignoring the problem.

• Get over the guilt.

When I was first diagnosed, I felt guilty that I was bringing this nightmare onto my family. Was I ruining my kids’ childhood? Would I get through all the difficult conversations that no parent should ever have to endure? I did not ask for this and, with a great support system, we will come out of this stronger.  We reached out to everyone who surrounds our kids every day (teachers, camp counselors, parents of their friends) to make sure the kids would have their support and understanding. The Miriam has a great program where children of a certain age can meet the doctors and other kids going through this, as well.  This all helps.

• Maintain a positive attitude and find the humor in it all.

My bi-monthly informational emails to friends and family now include some humor. I joked, for example, that the required steroid treatments will end my Major League Baseball career!  Many people tell me that they laugh – and cry – when they read about my “adventures through cancer.” Although I am pragmatic, I have to be as positive as possible. As a hospital social worker explained, you do not need to be incessantly happy, you just have to be able to get past the sadness. So, while I may cry on the lemons, I will eventually make lemonade.

Sara Masri (smasri1@cox.net) lives in Providence.