For the first week back home, I was mentally adjusting to the “new me”. Caroline 2.0.
From the left collar bone to the top of my breast I felt nothing. If I touched my left side, I felt nothing. I would also get an occasional itch near the crease of my left armpit; but if I scratched it, I felt nothing. I wasn’t really sure what to do with “it”. This was now what I was going to be living with. I knew the nerve endings were going to grow back, but when? The sensations of numbness and tingling were all on my left side. All I wanted was the feeling to come back. It would come back right?
The pathology results
“I have good news.”
I was back with Katy. She’d received details on the pathology results.
“The tissue had four areas which had invasive cancer.” That’s good news?
“The largest of the four 8mm, which is much smaller than we thought.” Ok.
“So chemo may not be needed.” Ok.
“The cancer was also only in one lymph node, so we got it all.” Ok.
On the occasions that Katy had good news, I would take them as small wins in the grand scheme of things. There was a possibility that chemo wouldn’t be needed. Suzy had said chemo would definitely be required if the tissue size was 2cm, but we were dealing with 8mm. There could be gene tests done on the tissue to determine if reoccurrence and growth would be likely. This was good news; yet I chose not to get too excited until I’d spoken to Suzy.
Two days later, I was back in the Breastitute. I entered Katy’s room, and before I even sat down she started.
“I have bad news.” What? *How is today bad news, when the other day was good news?*
She’d received the full pathology report print out; and had it in hand.
“There was some pre-cancer found in the margin that was taken out of the sample.” Ok
“You’ll need another surgery.” WHAT?
Now for those not in the know; let me explain how tissue removal for a mastectomy is done. When you have tissue removed; the surgeon will remove an outer margin to the sample, so what is left behind is healthy. The margins can vary, but can be as small as a few millimetres; to a centimetre. The margins that were removed from my tissue were not fully healthy. Of course they weren’t!
“They found some pre-cancer near the nipple.” *silence*
I felt like I was hearing the news about needing a mastectomy all over again. I had barely looked at myself in the mirror, but was slowly adjusting to having the implant. It looked as close as it could to my real breast, so nobody would know; but the nipple?
I want you to do whatever you can to save it.
I started to cry. For the majority of the appointments I’d had with Katy, I was usually put together. Mainly because I was mentally prepared for what would be discussed. For this appointment, I was expecting to just get my dressing replaced; not be told I would need another surgery. This was the second occasion I was crying in her room.
I want you to get the rest out, but I want you to save the nipple.
Katy and I were in agreement on this. I trusted her. In her years of practice, she knew the emotional impact this had on women. If there was enough skin behind the area she would save it. If not, it would be removed. I switched to robot mode to process.
Katy started to go through the options of what would happen. Trimming off additional margins of fat near the skin. How she could reconstruct a nipple if it came to it.
This was not part of the plan. Removing another part of me was not part of the plan! How did this happen? Why was this happening? What could I do? Follow the experts Caroline. You follow the experts.
I was in the middle of fertility treatment. I had literally just started it. The plan was for me to recover from surgery, have the fertility treatment, then be ready for chemo (if it was still required). Now the surgery had to be squeezed in. By the time I got home, I felt the full weight of everything had hit me like a ton of bricks.
The chemo discussion
Suzy was based at the Leaders of Oncology Care (LOC) in Harley Street. It was the second time I was visiting her; and out of all the waiting rooms so far, the one at LOC was the grandest. High ceilings. A period fireplace. I was convinced you could fit my entire flat in the waiting room alone!
The wait this time around was longer than most. Jo was with me this time. I’d opted for no biscuits or tea. I’d debriefed on what had happened in the week. She could tell I was anxious. By the time I was in Suzy’s room I had switched to a state of calm.
Suzy had my details on a screen embedded into the top of the desk. No paper or pens in sight. For a split second I thought back to what it would be like if I had gone through this with the NHS. I scanned the room. It felt like I was in a stately home.
We went through the pathology report again. The details she went through were nothing unusual.
- I had 17 lymph nodes removed – If you’re as shocked as me, the average is between 15-25. The body has approximately 500
- One was positive with cancer
- As my cancer was oestrogen receptor positive, every time I would have my period, it could potentially target any existing cancer cells and cause them to grow
- I would need hormone therapy
- The gene tests for the results had only been done on post-menopausal women
- I was young
“A lot of the cancer was DCIS, I thought there would be a larger invasive portion.” Ok.
“You’ll remember I mentioned it before, but due to the positive lymph node, and your age…” *I knew where this is going*
“Do you want to proceed with chemo?” I didn’t realise it was an option. Tell me anyone that wants to have chemo.
“If we can do 6 months of treatment to reduce the chances of this reoccurring again, then that would make me more comfortable.” Then I will do chemo.
Never in a million years would I imagine myself having this conversation; but as Suzy was the expert, who was I to disagree with her input. I would be having adjuvant chemotherapy. We discussed the treatment plan; chemo would run over half a year. Half a year!
- Cycle one would be the EC drugs – Epirubicin and Cyclophosphamide. This would be one session every three weeks for three months
- Cycle two would be Paclitaxel. This would be one session every week for three months.
I’d need to have a portacath put in. I’d see a nutritionist; I would also be seeing a hair specialist. I would be trying cold cap – a padded frozen helmet that patients wear during treatment to numb the hair follicles and reduce chances of the hair falling out. Hair loss was my biggest fear.
“I think cold cap would work well on you due to your big head.” *Thanks Suzy*
Well I guess if there was ever a time my large head would help me out it would be now. Always a silver lining right?
I had a new plan. I would finish the fertility treatment. I would have the second surgery. I would start chemo. And at some point, I would get feeling back on my left side. That was my new plan. It wouldn’t change. And we would stick with this.
Hi Caroline, Romi told me about your blog earlier today and I’ve just beed reading through it now…. Man, you’re such a good writer. I don’t suppose that’s what you were going for, but you are. So honest and clear.
I got quite emotional reading this so far. And obviously I don’t know what to say. Everytime I think of you I hear “Don’t stop believing” playing in my head. Sending you love xxx Sarah (from HBi) xxx
Thank you for reading Sarah. I write how I feel, and hopefully it gives you an indication of where my head is at, but also the process of what has/is happening for updates.
I hope it helps anyone that may come across someone going through something similar, or even personally experience it themselves (god forbid)!
Hope you and the family are good. ❤️❤️❤️