Changing directions

When they say cancer is a rollercoaster, they are really not kidding. This week was definitely testament to that. On Thursday I finally met my oncologist, Dr S___. I instantly loved her, and I know that we are going to get on; she's my kind of lady. An older, Indian woman with a whole heap of experience, she has worked all over the world, run medical trials, presented at conferences and is a total cancer rockstar. And she has a no-nonsense, pragmatic attitude which suits me down to the ground. She talked me through some options but on Thursday they were still awaiting the results of the HER2 test which could potentially make a significant difference to my treatment plan.

As an aside, each time I visit anyone for a consultation at St Bart's, they write up the consultation outcomes and send them to my GP. I get a letter in the mail (yes, snailmail) which is a 'cc' of the letter which goes to my GP. The last one, from my surgeon, Miss L___, had contained a worrying line. It said 'I think cosmetically she would benefit from neoadjuvant chemotherapy'. Cosmetically? This is not high on my list of concerns! I care more about getting the best treatment and ridding my body of cancer than what my cleavage will look like post-surgery! Neoadjuvant means to receive treatment such as chemo before surgery rather than afterwards (which is called 'adjuvant'). I had googled this (of course) and read that chemo has the same effectiveness whether it's given before or after surgery, but it can make a difference to the surgical outcomes (for example, make the tumour smaller so less of my boob is removed).

Anyway, when I mentioned to Dr S___ that I really wasn't concerned about any 'cosmetic' outcomes she totally stopped in her tracks. Apparently if I am HER2 negative, I could have surgery and not even need chemo at all! This stunned me. My surgeon was making assumptions about me rather than giving me options. In the same way that she assumed I would want fertility treatment, she was assuming that I was concerned about what my cleavage looks like. (In case you haven't guessed yet, this made me kind of angry.) To have made a decision about my treatment which meant that I could have unnecessary chemo was astounding to me.

Anyway, we could not make the decision until the HER2 results were in, so Dr S___ immediately stopped my consultation. She said she would chase the results but that I should consider that I may be going into surgery next week rather than chemo, as she predicted I would be HER2 negative (apparently my tumour is so receptive to oestrogen and it's rare that these types of cancers are also HER2 positive).

I then went into work rather light on my feet for the rest of the day! There is a chance I might not need chemo after all! Gosh, what a glimmer of hope.

Sadly, the glimmer was shortlived. She called around 6pm and said that I am HER2 positive and so should definitely have chemo first. Oh, and could I come back at 9.30 the next morning! So Tanai and I were back at St Bart's early this morning to get the full picture. Apparently only 10% of cancers are both HER2 positive and receptive to oestrogen, so I guess I'm rather rare. Not sure how I feel about that as I'd rather be in the statistically predictable group, but there it is. So this morning Dr S___ gave me the full low-down on chemo and I signed a consent form so that they can progress with my treatment.

She explained some of the main side effects, and some of the regular tests I'll be getting over the coming months, and why. Also, in true project manager style, I'd written down lots of questions in my blue notebook, each with a space left for the answers, so we went through those too. Tanai and I have been doing quite a bit of research: each time I get a letter with the results of the consultation we google all the acronyms and write down any questions we have, so that we can go through them in our next visit. I imagine this will become quite a routine during my treatment. So here is a bit of a summary.

I will need to have a few more tests to check certain parts of my body that can be affected by the chemo. So I have to have an 'echo' test which is to check my heart, because the drugs can impact on my heart. They will keep checking this every 3 months and if my 'ejection fraction' goes down by more than 10% they will either reduce the dosage or pause/stop treatment. I also need a CT scan and a full body bone scan. The drugs I will be on can affect my bones, my liver, my kidneys, my blood, in rare cases chemo can cause cancer (ah, the irony!), nerve damage and, to top it all, it will probably bring on early menopause. Thank goodness it will also nuke my breast cancer, otherwise this is a ridiculous thing to sign up to by choice.

The more 'regular' side effects are that I will feel nauseous (Dr S___ prescribed me some kick-arse anti-nausea medication), tired, I will be more susceptible to catching viruses, I will probably lose my hair and I will probably lose my sense of taste (this makes me very sad, but thankfully it's only during treatment, not forever). For my birthday, the wonderful Rosser family in Sydney bought Tanai and I 'high tea' at the Ritz, so I've decided to save this as my treat when I'm all done with chemo and get my taste buds back. It's great to have something wonderful like that to look forward to.

When I told her that I was planning to continue going to work all the way through my treatment she was very pleased. She said she encourages all her patients to continue working, and she said if I feel as though I have the energy, I should continue to cycle into work too! She advised that if I do want to take the tube, I should avoid the rush hour, as it's likely I will catch any germs going around.

So, once we were all done, I trotted off to get my bloods done, got my appointments booked in for my CT and bone scans, and headed into work.

All in all, I'm quite glad we're still doing it this way round. Having chemo first does mean that the surgery is likely to be less invasive, as the tumour will be smaller. Also it means I get to have Pertuzumab, which has only been licenced since December 2016 and has fantastic effects. It increases the effectiveness of the other drugs and dramatically reduces the chances of the cancer returning. But this drug is only available to patients having chemo before surgery, not afterwards, so I'm very lucky to be having this.

Tomorrow I'm going shopping with a couple of girlfriends to buy some headscarves, and we are going to work out how to tie them somewhat stylishly by studying youtube videos, as I really want to be prepared for this. Should be fun!