19. The Boob Decision - Preparing for Surgery
It was after my fourth chemo cycle that the thought of the impending surgery crept into my mind. It had always been there, but now it was getting closer. I knew the two options were a lumpectomy or mastectomy. What was going to happen? I just had to wait and see. From the beginning of the cancer path everything is taken out of your control. For me, as I’ve said before, I was rarely sick, so to go from that to full on medical treatment was a head wreck. It really shows you how adaptable you are.
I had no choice in any of this, everything was completely outside my control. As a person who likes to know what they’re doing, where they’re going, even what seat they’ll be sitting in, this was a huge adjustment. Even when I went into the treatment room I was showed where to sit. I didn’t mind any of this, because everything was done with my best interests in mind. I was treated so well and with such respect that nothing ever felt like a problem. In a situation that was completely out of my control, I still felt safe as the best decisions were being made for me and my circumstances.
Thinking of the surgery it wasn’t the operation so much, or even loosing a boob that worried me the most. I would say that I wasn’t that attached to my boobs, they were attached to me. While I was ok with the possibility losing a boob, I was still concerned about it and didn’t know the impact it could possibly have on me. But ultimately I thought I’d rather have no boob than risk recurrence.
I spoke to my oncologist about which option would be best to prevent recurrence. He said that whether it was a lumpectomy with radiotherapy, or mastectomy, the results and outcome were the same. He explained the surgeon would remove the bed of the tumour and if he had to remove more than a certain amount then he would have to do a mastectomy. He continued that biopsies of the lymph nodes would be carried out also. He told me if the lumps could safely be removed then that was what would be done followed by radiotherapy, which would take place daily over two weeks. My mind was spinning!
The meetings about surgery then began. I met my new consultant who was very approachable and easy to talk to. He explained the options. At first he talked about the possibility of there being a decision about lumpectomy and mastectomy. The option of a mastectomy also had the option of reconstruction by implant or reconstruction using tissue from the stomach. The latter required two operations, one in Derry to remove the tumour bed and another in Belfast for reconstruction. Again, completely inappropriately, I joked I could get two for the price of one; a boob job and a tummy tuck! Paschal knowing my humour laughed, the consultant and breast care nurse looked at each other and graciously chuckled. The consultant continued to provide information and based on my response said he thought I would go for the mastectomy and tissue reconstruction. But I told him, at that point, my decision was resting closer to mastectomy and remaining flat, with no reconstruction. This decision can only ever be a personal one. For me
· I was nearing 50 and while looking nice in clothes was still mattered it wasn’t as important to me as it once was.
· I didn’t want to go through two separate operations resulting in a longer recovery.
· I just wanted the cancer gone, the rest I didn’t really care about.
· As with all surgery I understood, with a mastectomy and reconstruction, there could be a greater chance of complication. I had been through enough and the thought of over complicating it further was just too much at that stage.
· Prosthetics seemed to work well, I was content with that option for clothing..
· As I’ve said my boobs are attached to me, I’m not that attached to them!
As part of the appointment I had a mammogram. After reviewing it the consultant saiddue to the size of the area to be removed, 4cm, he wasn’t sure there would be a choice. A mastectomy was usually recommended in cases like this. He explained that 10 years ago it would have been an automatic decision for mastectomy. However, he said he would discuss my case at their multi-disciplinary meeting to see if there was an option and we’d meet again. At that point we would also decide about reconstruction. I was told lumpectomy is equivalent to a mastectomy in terms of life expectancy and slightly better than a mastectomy in terms of recurrence.
I left that appointment convinced the outcome would be a mastectomy. I said as much to Paschal. He asked if that was what I heard the consultant saying, because he heard it differently. To him, the first part of the meeting seemed very balanced, 50/50 for each. But after the mammogram it seemed more likely to be a mastectomy, but still not definitive. I hadn’t really heard that. I went into the meeting with my head set on having a mastectomy because I wanted the cancer gone and I didn’t want it to come back. But listening to Paschal I realised I was a bit blinkered. I needed to give this more thought and be more balanced in my decision-making. This is the value of having someone with you at appointments. They can give their interpretation of what was said, which allows for more questions, and stop you from making anxiety-driven decisions.
After the meeting with the consultant I really didn’t know what to think. Would there be a choice, or wouldn’t there? Time would tell. You just go through the motions during cancer, things seem to become matter of fact. Should I have my boob cut off, or should I just have a bit of it cut out? Should I have tea or coffee? It sounds crude but that’s the reality. The way I saw it my boob didn’t have any serving function in my life. I didn’t need it to live or survive. Without it I would function just fine and there were always prosthetics. Although my thinking at the time was to remain flat, after speaking with the consultant I realised I wanted to find out more about reconstruction to help me make a more informed decision. Up until then I was basing my thoughts on anecdotal opinions from people who had never experienced cancer nor had breast surgery.
Until this point, although I could talk about cancer, I hadn’t really spoken to anyone who had actually been through it. I hadn’t spoken to anyone openly about their experience of surgery, be it a mastectomy or lumpectomy. But two days before my next meeting with my consultant I it was time to people who had been there. I left it so long to talk to people simply because I wasn’t ready and I couldn’t. Although I had been through chemo and knew what was happening, I wasn’t ready to truly face upto the reality of what was happening. Someone much cleverer than me could explain to you the whole theory of dissociation, something I was familiar with through work, but something that I was very aware I was doing to cope with what was going on. However, I had to face up to it at some stage and that time was now!
My little decision making helper!
I contacted friends, and family friends, who I knew had been through similar experiences. Every single person was willing to talk to me and everyone was open and honest about their experience. Some hadn’t had cancer themselves but carried the BRCA gene which increased the risk of them developing breast cancer, so they voluntarily had a preventative mastectomy. I learned so much from their bravery, arguably even more so than my own situation. I had no choice, but for them they had a choice, but perhaps, like me, they felt they didn’t.
Each conversation helped me understand the reasons behind different choices and slowly helped me make my own. From everyone I spoke to their lives had continued, and so it was evident to me there is life after cancer, and it goes on. One person talked to me about their experience contacting the Someone Like Me service provided by Breast Cancer Now, that I hadn’t heard of until that point. I was also reassured that I didn’t need to have my final decision made when I next met my consultant. Although I knew I couldn’t take forever to make my decision, I didn’t have to rush it either.
What struck me at that time, and in the most, when I spoke about having cancer, or talked about cancer, was how I managed my emotions and could cover up the fear I had. I did this by being matter of fact, saying things like there was no plan B, only plan A which was cancer had to go, it had no place in me. Also a lot of my conversations were over the phone which made it easier to hide. Although I also knew I couldn’t hide them forever. I’m an emotional person, but I knew I had to deal with the facts to get through one of the most difficult times of my life.
