This week I’ve been playing hide and seek. Clarity has been hiding; I’ve been seeking. To get from point A, to B, I’ve presented my dilemma to friends, to strangers, to doctors… and to myself. Thursday was circled in my diary as D-day #2. Not because I needed to make a definite decision by then, but I had appointments with my oncologist and surgical team. I was hoping by the end of the day I would know which way I wanted to go. I also threw in a good chat to a breast care nurse whose contact I’d been given. It was the first time I was reaching out to the support offered in the system. I now understand the importance of money raised through charities to keep these resources available. The McGrath Foundation have me as a sponsor for life.
I started to realise it wasn’t a matter of hearing the doctor’s recommendation – I already know this – it was about explaining my concerns with each treatment option. How radiation or surgery will affect me, as an individual. I understand they have standard recommendations depending on your tumour size and type, but what about how I will be affected, not just my cancer.
Let me explain…
There are a few things I feel haven’t been considered with the doctor’s recommendation. Of course, as I’ve said and believed all along, everyone is different. I may get through radiation and be completely fine… or I may not. My mindset is: surgery is only making external changes, radiation is making changes to me internally, changes that I may not necessarily see or know. That concerns me.
The two main concerns I have with radiation:
The main side effect of radiation is fatigue. Extreme fatigue: long lasting fatigue. Do the doctors know that I work as a flight attendant? Have they considered my job environment? A ‘healthy’ person working long haul will struggle with fatigue. Radiation is going exasperate that. It could take an extra 6 months recovery compared to surgery, to feel myself again.
Radiation can affect your lung capacity. These days the instruments have improved so the damage is usually very minimal, but they can’t guarantee anything. They advise at the start: “Radiation may cause scarring on part of your lung, but you’ve got two…” I remember when the words came out of my radiation oncologist’s mouth. As if losing part of your lung capacity was completely normal. Others may not mind… but I do! For someone who wants to get back to triathlons and training for Ironman, lung capacity is quite important. I’m part of a Facebook group: Young Pink Sisters. The other day I put up a post about my concerns regarding radiation. A woman responded by saying, “I continued to exercise at 80% through radiation…the radiation has done some damage to my lungs… I get a slight wheeze when doing cardio.” Do I want to have shortness of breath or a slight wheeze when doing cardio? Umm NO.
To one person these concerns may not be valid. This is where it becomes very personal. What’s important to me may not be important to another. For some women their breasts mean everything to them, they identify with them. Also, having the option to breastfeed in the future is of great importance. Neither concern me.
It’s a misconception that having both breasts removed improves your chances of the cancer NOT coming back. Studies prove that having a lumpectomy with radiation is just as effective as a double mastectomy. This is why, if you qualify for a lumpectomy, it’s the recommendation. And even if you have a double mastectomy, some breast tissue remains. The current statistic is that you have 1% chance of it coming back. I’ve heard too many stories of woman who have had radiation then it’s come back in the healthy side. I have 60+ years ahead of me; I would rather take the 1% option.
Also, if you have radiation, then have a recurrence, THEN need a mastectomy, the reconstruction is harder. Not impossible, but harder. They take tissue from another part of your body. Doctors explain this as if it’s completely fine to cut tissue out of another part of your body. This may not bother other people. They may get a tummy tuck along with new boobs. For me, it doesn’t sit well. I would like to think I don’t have enough fatty tissue around my stomach to make new boobs later. Maybe I do. Not to self: stop eating chocolate!
Another comment I’ve heard too many times: “If it comes back, you can have a mastectomy later.” If it comes back and I need a mastectomy later, I will have a major case of regret. Regret is a nasty headspace to be in, I don’t want to live with regret.
This is where deciding on a treatment that also helps maintain a healthy mindset becomes important. What decision will I feel comfortable living each day with? If I have radiation, will I be looking in the mirror wondering, did I make the right decision?
I wrote these thoughts and concerns down on paper and prepared for my day of appointments. Each time I thought about radiation or surgery, I feel more at ease with surgery. I knew it was important to remain open minded during these discussions and listen to their responses, not just hear what I wanted to hear.
And that is what I did. And everyone – my oncologist, breast care nurse and surgical team – all agreed that it was very valid for me to feel surgery was the better option. As my breast care nurse said, “You’re not refusing treatment, you’re just choosing the best option for you.” She actually joked that I should become a breast care nurse. I had done my research, knew the statistics, looked at both options from each viewpoint and understood the pros and cons of each.
I am now at peace with my decision. Radiation is cancelled. Next step is to meet with the plastics team to talk about reconstruction then book surgery.
The wait continues, but I feel healthy and strong… and happy.