Surgery decision time
Updated: Jul 17, 2019
I ALMOST find it hard to believe it’s been close to six months since I was diagnosed with cancer. I never use to hope for time to go fast but this year I don’t mind. As quick as the last few months have gone, I still feel like there’s a long road ahead.
Since starting weekly treatment it’s almost like my life is on a merry go round and I’m just sitting on top spinning around and around waiting until I can hop off. Monday I go in for treatment, Tuesday to Friday I work normal hours, the weekend I pack as much as I can in and then on Monday it’s back into the treatment room. At the beginning when my treatment was every three weeks, I felt like I at least had a break for a couple of weeks despite not feeling well.
Now, it’s every Monday and I’m slowly counting down the number of treatments until number 12. Round one done, round three skipped and given the following week, round six, halfway done, round eight delayed due to side effects.
The side effects for me on this drug have been intense bone aches a couple of days after I've been given the drug. A hot bath seems to help the most. Around week six I noticed pins and needles in my feet and half way up my calves, it's slowly becoming more common - peripheral neuropathy. The tingling/numbness can become gradually worse as it builds up and eventually can become permanent. Round eight I told my doctor about the tingling lasting all week and a couple of my toes feeling numb which is why treatment was delayed a week.
On a positive, while my eye lashes and brows are continuing to disappear and I’m looking more and more like an alien, the hair on top of my head has started growing back. I never thought I’d be happy to see hair come back in certain places but the first time I noticed a hair growing I was in disbelief and so happy.
Once weekly treatment is finished; the next step will be surgery.
After round 3 of 12 of chemo, mum, dad, Nat and I jumped into the car for the six-hour trip down to Sydney for my appointment with the team at the Breast Cancer Institute at Westmead hospital. We stayed the night at Newcastle and made sure we were on the road again in time for my 11am appointment.
When we arrived, we found out there was going to be a long wait. The 8.30am appointments still hadn’t even been seen. As we sat in the waiting room, I began to feel freezing cold and my hips, femurs and knees started since chemo was only given the day before. I couldn’t stop moving from being uncomfortable and in pain.
Whenever I thought about how long we were going to be sitting there, I’d tear up, trying to hide it since there were so many people in the waiting room. I was tired, sore, cold and frustrated. A random lady insisted on lending her scarf to me since I couldn’t stop shivering then the receptionist brought me out a blanket. I’m not normally like this but with so much going on it was overwhelming.
“I’m seeing what I can do to get you fast tracked,” a lady in a nurse uniform came out from behind reception to tell me.
I recognised her from my last visit to Sydney, she placed a clip in my cancer and I remember her being really nice.
She made it happen too. Not too long after, I was called in, I felt bad for pushing in front of other people’s appointments.
The doctors told me their recommendation for surgery was a lumpectomy followed by radiation. This is good news. The fact that I’m even a candidate to have it done is a positive since I don’t carry the main breast cancer gene BRACA1 or 2 meaning it won’t be passed on to my one day kids.
The doctors had another feel of the lump and we all came to the conclusion that it has shrunk. It’s still there, but to find it is a struggle compared to finding it at the beginning.
The doctors then asked what I wanted, what my thoughts were for surgery. The whole time while going through those first hard rounds of chemo I convinced myself I just wanted both my breasts gone. I didn’t want any chance of ever having to go through this hell ever again. I was hoping the doctors were going to tell me it was recommended so I would have an easy answer for surgery but now I had a choice. For both options there are positives and negatives but the overall long-term survival percentages are the same.
What scared me about getting the lumpectomy was what if it came back? Would I ever be able to forgive myself for not just getting both off when I had the chance? A lumpectomy would also mean I would have to go through radiation. It would involve going into the cancer clinic five days a week for around four to six weeks. Yet the positive to this option would be getting to keep my own breasts and have a less invasive surgery with a shorter recovery time.
Now a double mastectomy might seem like a simple solution but it’s not as simple as a ‘boob job’. The way the doctors explained it to me was they would essentially scoop out the breast tissue followed with immediate reconstruction by placing implants in. I wouldn’t have any feeling in them at all, I’d never be able to breast-feed if I wanted to have kids and it would be a constant reminder of what I’ve been through. Recovery time for this surgery would be longer.
The other complication with a double mastectomy is the fact that I have pectus excavatum, a concave sternum. The surgeon said she wasn't sure how implants would sit because of it and if in surgery she decided it wouldn't work, she would put expanders in then fill it with fat from somewhere else on my body later down the track.
After this overwhelming information, mum, dad, Nat and I drove back to Coffs straight after. It was too much. For the next week I couldn’t even let myself think about the options. It was all just too much and such a whirlwind trip. I shoved the thoughts away somewhere in my head to think about at later stage.
A month later the surgeon came up to Coffs and I had another appointment.
“Have you thought about what you’d like done for surgery?” she asked.
The last four weeks I’d been swayed both ways. At first it was to have the double, then the lumpectomy, then I was even more confused. A visit to a psychologist at Westmead who specialised in this kind of decision and a chat to a specialist breast nurse swayed me towards the lumpectomy, which is what I told the surgeon.
A lumpectomy it is, followed by radiation. I’m scared with this decision, but I know I would be scared with a mastectomy decision too. Either way I would be but what made me think a lumpectomy is a good option is because they wouldn’t suggest it if the chances of getting it again were too high.
So the plan is to finish my 12 rounds of taxol chemo if the tingling/numbness doesn’t get too bad. If it does, they can stop treatment short of the 12 weeks. Next will be around a couple of weeks break before surgery then another few weeks break before starting radiation.
I feel like I’m trying to keep my head down low and place one foot in front of the other. It’s exhausting but I’m beyond lucky to have such amazing friends, family and people to work with who make every day better, bearable and memorable. The same goes for my heart horse Willow and crazy dogs Belle and Daisy.