The waiting game

When you’re scared shit-less after finding out you have cancer, the last thing you want to hear is “just take one step at a time” or “time will tell” or “you’re going to be fine, wait and see.” I’m lucky I didn’t end up in the clink, because I swear to god, if one more person had of said that to me I would have snapped.

First self discovery:  my patience as a patient is pretty rubbish.

The waiting game was, and still is, the pits. Waiting for a treatment plan. Waiting for surgery to find out whether the cancer has spread. Waiting for another ultrasound in 2 weeks time to see if the small tumor that is still in my left breast has shrunk, or hopefully disappeared. Waiting to see whether I’d need a lumpectomy or mastectomy. Waiting to see if I need radiation. Waiting to find out if my little ovaries will fire up again. Waiting to see if I need endocrine therapy. Waiting to see what our future holds.

Another huge player in this waiting game were the results of my genetic testing which took 5 weeks to receive.

My Grandad had breast cancer. He concealed it for 4 years from my Nanna and family. Sadly the breast cancer metastasized to his bones, and he lost his life nearly 20 years ago. He was 72 yrs old. Was it fear and shame that prevented him from speaking out? Even today, breast cancer is seen as a ‘woman’s disease’ by many, simply due to limited awareness surrounding male breast cancer, so I can only imagine how unusual it must have seemed nearly two decades ago for him to discover he had a lump in his breast.

With this knowledge, I did some research and discovered that I wasn’t the only female in the paternal line to suffer from this common disease. My Grandad’s Aunt and also his niece (Dad’s cousin) unfortunately suffered, and lost their battle to the beast. So the idea of doing genetic testing to see whether I inherited this abnormality was a no -brainer.

The results arrived the week before Christmas.

Positive for the BRCA1 gene mutation.

Cheers, Santa. Awesome gift, Champ.

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Considering my family history, the results were kind of expected but despite a bit of relief to have an answer, it now meant I had another huge hurdle to consider: Double Mastectomy. Yep, I definitely cried a lot on the way home from the hospital. But after waiting, waiting, & waiting for all kinds of different answers, at least I finally had one. BRAC1 gene mutation at least gave me some direction as to what I needed to consider for surgery and what my risks are for possible future recurrence.

So you’re probably wondering what the hell BRCA1 is?

Every person, both male and female are born with BRCA1 and BRCA2 genes. They represent BReast CAncer genes which act as tumor suppressors by producing a protein that actually prevent cells from multiplying uncontrollably. However, It is when these genes show abnormalities or mutations that then raise concern as cells can divide and grow too quickly resulting in possible tumors. Mutated versions of these genes cannot stop abnormal growth, and that can lead to cancer. So in my case, my BRCA1 gene has a faulty or mutated code which obviously resulted in a tumor. Well, two tumors as the large one is out and just the small on remains.

What’s interesting is that only 5-10% of breast cancer cases are actually from BRCA1 or BRCA2 mutations. Even if you have a faulty BRCA gene it doesn’t automatically mean that you will develop breast cancer:

Simply having a proven gene abnormality does not necessarily mean that a woman will develop breast cancer, or that her cancer will be any worse than cancer that does not stem from an inherited genetic flaw.

— Marisa Weiss, M.D., president and founder, Breastcancer.org

However, in my case because I have the BRAC1 mutation, it puts me in a high risk category of 40-80% for recurrence and or developing a secondary tumor. It also increases my risk of other cancers developing over my lifetime. Exciting stuff hey. It also increases my chances of developing ovarian or fallopian tube cancer with a 20%–40% lifetime risk which means I will need to consider a hysterectomy at age 40.

These statistics frighten me. A lot. If I’m only 31 and have already developed not one, but two tumors, then the likelihood of developing  another tumor or cancer over my lifetime is bloody scary. Prior to undergoing the blood test for the genetic testing I met with a genetic counselor who very briefly outlined a few preventive options subject to my results. I had obviously already done some of my own reading and research about BRCA1 and BRCA2 and had decided that if I received POSITIVE reading for the faulty gene, then I’d almost be silly not to have a  double mastectomy with such high risk stats.

So that’s my decision. A double mastectomy. I squirm at the thought of anyone even coming near my boobs right now as I’m still protective of my scars from my first surgery and from the port-a cath procedure. How the hell am I going to be able to cope with my whole breast tissue removed? On a physical and emotion level, this poses as a very solid challenge. But then if I decide NOT to have this preventative surgery for recurrence which is highly likely, then how the hell would I sleep at night wondering whether another cancer has developed? Right now, 4am seems to be a busy time for me mentally with the 54,877 question commonly spinning around my mind waking me up and keeping me frustrated and tired.

Although I’m not ready to deal with the reality of a double mastectomy right now, I do anticipate my appointment with my breast surgeon in a few weeks in the hope that I might get a bit of timeline to focus on. Right now its’ so frustrating not knowing when my surgery will be or how long my recovery will be for? Will I have reconstruction at the same time? Or do I need to have double mastectomy, then radiation, and then months later reconstruction? Has my cancer spread to the lymph nodes? Do I need sentinal node taken out too?

Feb 6 can’t come around sooner. However if this diagnosis has taught me one thing it is not to wish my life away. So in the meantime, now that I’m feeling pretty normal again after my last round of chemo (4) which was the worst so far, I’m off the beach to pass the time with some sun & salt therapy.

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