Week 2 – First results and diagnosis

11 January 2017

A week ago today, I had my appointment to discuss the first part of my treatment plan for breast cancer.

In my last post, I described finding the lump and getting the news that I had breast cancer. From that point, 30 December until the appointment on 4 January, I hardly slept. It had been my great intention to work from home on the day but I couldn’t concentrate and the reality was there was little to do.  So, instead I tried to fill the hours until 4pm by shopping and getting my eyebrows shaped and tinted. As I hadn’t slept much since 30 December, I felt like a zombie.

I arrived early at the hospital early only not to be seen until almost 6pm. The staff at Kingston Hospital apologized for the delay more than once and even came to speak to me personally. It was hard to get angry because there is a nurse who is present at all your appointments, the same nurse always, and afterwards she takes you another room to further discuss you’ve just been told to ensure you’ve understood, she provides you with further information and she helps on the emotional front. As I wouldn’t like to be hurried out the door, I would not like for anyone else in this situation to be.

That appointment was in fact the first time I had been to the hospital where I saw people who were obviously suffering from cancer which was an awakening of sorts. In many ways it was good to observe them. They were chatting with their companions, reading and looking calm. It made me feel calm too as I thought, “they’re alright.”

In the intervening days, I had played with the idea that the biopsy results would tell another story than the one I heard on 30 December. Plenty of people had told me of stories where the doctors had got it wrong. Of course, I kept turning back to the expressions of pity every time I suggested that might be a possibility after they told me I had cancer. As the weekend and days past, I began to hope for a grade 1 cancer.  My tumour was 2.23 cm, but as I understood it, it wasn’t so much size that mattered.

When I finally met the surgeon, I found out it was a grade 2 cancer.  I liked the doctor a lot because she looked me in the eye the whole time she spoke to me, especially when she said things like, “it’s a good grade,” and “it’s very curable.” Even if it is so, the treatment is scary. She went on to show me the tumour from the mammogram and describe to me the various surgical options by drawing a number of pictures. There were a couple of options around a lumpectomy and a mastectomy. I couldn’t stomach the latter and one of the lumpectomy options would have involved fixing up the left breast too in order to make things even.

In the end I choose the lumpectomy that was the least invasive option and also the preference of the surgeon. She was reluctant to tell me her opinion, and I have theories on why. I insisted I wanted to know and I made the point that she’s been doing this for a couple of decades and this is my first brush with breast cancer and it makes a difference to me to know what she thinks is the best option.

Of course, she was then required to tell me all the things that might go wrong related to things being different when they get in there to what they appear on the imaging. So, while I think it is unlikely at the moment, I could end up losing my nipple or the whole breast.

Based on the imaging,  I have a tumour that is invasive but has not yet metastasized. There was no sign of lymph node involvement which is a great thing. When they remove the tumour they’ll take it with a margin of breast tissue around it. If those margins are clear it will confirm (I think) there has been no spread of the cancer (away from the tumour itself). During the surgery, they will also do what’s called a sentinel lymph node biopsy, which actually is actually a pretty cool medical procedure. They inject a harmless radioactive substance and a dye into me near the tumour. The very low level radioactive liquid guides their instruments to sentinel lymph node – the first port of call from the tumour to the lymph system – and the dye itself makes it unmistakable when then go in surgically.

I only read the materials they gave me on the 4th yesterday and then went on to Google and looked at photos from such procedures. It may seem a bit gory perhaps, but when even I could see a very blue lymph node around others that were not, I felt much better because the fluid seems to very clearly be directed to specific nodes. I might not get away with just having 1 or 2 removed, but I feel pretty confident they’ll biopsy the right ones.

What’s difficult in all of this is the complete lack of control. Unlike other sorts of conditions, I can’t do anything to fix it, such a change in diet or by losing weight and exercising more. I will never even get to know why I have this cancer. The most I can do is turn up and put my trust into others, and this is something I find hard to do.

I managed to hold myself together at the appointment very easily, but I realized afterwards that I might have to go against the grain of who I am and ask the doctor for a sleeping pill. After getting those and a couple of nights of some sleep (I still woke at 3am every morning), I stopped being an emotional wreck. This week I really feel myself, I’m happy to be back at work and grateful that it’s a busy and fun week for us. I work for an American study abroad programme and all new students have arrived with all their youthful enthusiasm and it is contagious!

Next week this will all get very real. I’ve been going through something like the stages of grieving, and it is not at all linear. I would say I am through the shock stage and while I don’t think I am in a stage of denial, I have certainly found a way to stand aside reality as though it were all theoretical. It’s difficult to explain.

On Monday, I have my pre-assessment at the hospital to make sure I am fit and ready for surgery. I have been to such a thing earlier in the year and it only took about a half hour to be weighed, measured, answer some questions and give some blood samples, but for this they told me to expect to be there for 2 hours. Perhaps there will be some more imaging. On Wednesday I have to go to the Nuclear Medicine unit/department/whatever to get the injections. The letter is a blur in my mind, but I think they already do some imagining there and then and I’m not sure if they give me the blue dye then or on the day of surgery which is on Thursday.

There is in fact some denial on my part because I keep suggesting that maybe a week off work is enough or that I could work from home right away and they keep shaking their heads saying 2 or 3 weeks. In my head I make my tumour small (2.23cm seems small) and getting 1-2 (or as many as 4) nodes removed a small affair. But if you read the information leaflets, it seems like a bit of a big deal in terms of pain, stiffness and the possibility of swelling. It can apparently badly affect mobility of the arm and I won’t be able to drive right away. I keep reading good (anecdotal) stories of women who’ve been through this and I don’t seem to find the stories I don’t want to know about. Perhaps this is my brand of denial.

I have been taken aback by the reading materials several times. The materials describe what things are and the treatment and on occasion you come upon the words  “your breast cancer” and each time it gives me pause.

My “breast cancer”?

It makes me feel like it is something I own, or something I grew and nurtured, when in my head I see it as an alien invasion.

At this very moment in time I feel calm and rather removed about next week. The things that dance around in my mind include the following:

  1. When I had back trouble a couple of years ago, the pain was horrible and nothing the doctors prescribed me did anything at all to stop that pain. Consequently, I am worried about being in a lot of pain after surgery.
  2. Having a deformed ugly breast. People keep telling me that it doesn’t matter – it only matters to get rid of the cancer. Yes, objectively this is true. I agree. These people are right. However, I am a human being with faults and emotions, and I don’t have the power in this situation to not care about the appearance of my post-op boob. Sorry, but I would prefer not to have an ugly or deformed chest. Perhaps it shouldn’t matter to me, but it does. Someone suggested that if I meet Mr Right, he won’t care. This never even entered my mind to be honest.
  3. I so completely focussed on a pathology report that will show clear margins on the tumour and confirm that there are no traces of cancer in the lymph nodes that I have not left space for alternatives. I can’t entertain other options, so I am potentially setting myself up for a bigger earthquake than the one I experienced on 30 December.
  4. People keep underlining that I will need help with the girls, the house, shopping, etc, and that it will take some time to get back to work. I haven’t been able to consider these things outside of a best case scenario.
  5. My experience of general anaesthetics isn’t good. I’ve experienced this twice in 2016 and it wasn’t awful and it was only for a very short time, but I felt like total crap for many days following.

I am looking forward to getting this thing out of my though and it will be a relief to finally know exactly (if that is really possible) what I am dealing with and what the actual treatment plan will be.

I know there are other women (and men) who have and have had it worse and got through aggressive treatment plans and are cancer-free now. People keep telling me these stories, I already know one such person, and it does add perspective and give comfort. I am lucky that I have breast cancer now – in the sense of today’s medical knowledge/advancements compared to 20 years ago. I feel very positive I’ll get through this.

When I know more about this I want to set a few goals or plan nice things. I’d like to take the girls on a trip somewhere beautiful, interesting and fun. I have my thoughts on Goa. Also, I’d like to plan a rowing goal, but that will need more time. I’d like to go back to Turin and actually do the race this time (it’s a 10k race for single scullers called the SilverSkiffs). I went once then couldn’t do the race due to injury. Those are nice things to focus on.

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