Chemo has been cancelled. WTAF?!

In the weirdest turn of events since events got weird, three days before having my PICC line put in and four days before starting chemo, having gone through the long arc of disbelief, rage and acceptance on having chemo INCLUDING CUTTING MY HAIR (yes, we can laugh, Honestly. This IS the cancer comedy after all) I’ve just been told I’m not having chemo (laughs maniacally).

“What the actual fuck?!” you metaphorically scream with your metaphorical head in your metaphorical, or perhaps even actual, hands ( I know you’re doing it , because that’s what I did). The short answer is it’s to do with the Clinical Trial I hadn’t bothered to mention, stuff I’d spared you all because… well, it’s detail you didn’t need to know, and we, including my cancer team, thought it all pointed in one big chemical direction. So here’s the long-ish answer

Cancer Maths.

Cancer treatment involves quite a bit of cancer maths. With primary breast cancer, treatment involves dealing with what’s IN YOU at that given moment, and then you’re looking at reducing the risk of of localised recurrence or metastases (secondaries). The data looks at 10-15 year return rates. Cancer maths at the medical end of the spectrum focuses on probability garnered from clinical trials and studies. It’s all data driven.

Cancer Blind Spots

I’ve mentioned that there are different grades of breast cancer but also cancers with different receptors which can determine treatment. For example, for a hormone receptive cancer, a cancer that grows with hormones, the treatment is hormone therapy. For high grade, fast growing tumours, chemo is really effective because it’s brilliant at hitting cells that sub-divide quickly. My particular type of Breast Cancer (low grade, hormone positive, HER2 negative) tends to get treated with hormone therapy AS WELL as  chemo, just for a belts and braces approach and in the absence of more more information about the genetic make up of the cancer and what it might do. Blind spots. That means, lots of women go through chemo even though it might not have a direct impact on reducing long term recurrence. Yah. Painful. Traumatic. Also, expensive.

The Future.

A t the cutting edge of diagnostics however, is personalised diagnostics and treatment based on the genetic make up of the particular tumour. Many diagnostic tools are already in place and the one that currently isn’t widely available on the NHS is Prosigna . This tool provides highly accurate and personalised predictions based on the genetic make up of the tumour.

A few weeks ago, I consented to have my data used in the Optima Trial which is gathering data to predict who might benefit from chemo. It was a randomised, double blind trial with 77% of people going straight to chemo and the rest being tested with Prosigna . The Prosigna tool tests the tumours, categorizes them further based on the gene assay. The tool helps determine who would most benefit from Chemo, based on robust data. Some of those tested would be referred for chemotherapy. Those who they predict wouldn’t benefit based on the analysis, would go to straight to hormone therapy.

Back to me..

It turns out I was randomised into the Prosigna arm of the trial and, upon further testing, it was decided that my best treatment plan involved going straight to hormone therapy. Meaning, chemotherapy was highly unlikely to have any benefit on the long term prevention of recurrance.

For me, having chemo is like using a blind bazooka to kill a really mean fuckin’ ant. And missing because the ant is under a rock somewhere over there, meanwhile obliterating everything in its wake, all the while hoping some shrapnel might hit said ant. In my case, long term hormone therapy, along with a good blast of targeted radiotherapy, is much more likely to prevent a recurrence.

Now, way back when, this exact outcome was determined to be extremely unlikely. Vanishingly remote. Even if I was randomised into Optima, there were characteristics of my cancer (chunky tumour, node positive, extra-capsular) that led the team to believe that I’d go straight to chemotherapy and that this was the best thing to do for me regardless. To de-risk the situation as much as possible. And so the course was set for chemo. Letters were received, a chemo schedule put in place. Holidays were cancelled. Hair was cut. I published several blogs to help me come to grips with it all. We cried, we processed, we dealt, we accepted. We braced ourselves. 

And so, here we are…

Needless to say, we are overjoyed but what I will also say is that we are kind of emotionally fried. I am writing this on the day we had the meeting with Oncy so the feelings are fresh and vibrating. We’ve been through the whole, “is it an admin error?”. Tom says it feels like we’ve just had a stay of execution.

Suddenly, our daughters don’t need to experience their mother going through chemo. I don’t have to watch my daughters and my husband watch me going through chemo. In one fell swoop, it’s all different.

I for one feel an overwhelming desire to stare at a blank wall until it sinks in. 


I need to talk about hair.

Yesterday was my first meeting with an oncologist and I am PISSED OFF major. I woke at 5.30am then eventually launched myself out of bed at 6.15 to stop the churning. Churning mainly about all the stupid things you’re going to say to try and make me feel better about some shitty news from yesterday. I know. There you were just lying in bed somewhere fast asleep and I was already angry at you for all things you haven’t even said yet. So look, here’s the deal. I’m going to unleash my rage at you, then tell you what to say, and then everything will be OK. Got it?

My Oncologist broke it to me yesterday that I am going to lose my hair.

DON’T say, “It’s OK, it’ll grow back” because this is me right now.

Fleabag, Season 2, Episode 5. Filmed on my phone in the downstairs loo at day break this morning. Lights off. I needed Fleabag to console me this morning.

I know I prepped for this meeting. Yesterday’s blog was all about me being OK with the chemo, but through all that mental and emotional prep,  there was just this little itty-bitty blind spot.

Hair.

I just thought I’d cold cap my way through this one. I was going to do cancer, sure, but I was going to do quick and easy cancer. Cancer for softies. Y’know, with nice tolerable, gentle chemo where I get to keep all my hair, and click my heels through summer like a smug cancer twat endlessly celebrating my not-terminal diagnosis and maybe just having a wee bit of time off work, to you know, convalesce with style, but otherwise winning.

With hair.

I don’t do crying at these Big Cancer Meetings.  But yesterday it all fell out of me.

“I’m so sorry”, I sobbed to the consultant after she’d broken the news, “I know it’s only hair”. She put her hands over mine across the desk (is it just me, or did she mist up a bit..?) .

“No.”, she said, “I understand. You have great hair” . (And how much do we love the Oncologist right now?).

And before you’ve even had time to scream “shut the fucking fuckity-fuck-fuck FUUCK OOFF” into the abyss, I was signing consent forms for this kind of chemo and that kind of chemo and weeping again and saying, “it’s just.. I’m 42 and I’ve only just worked out how to do my hair”.

And once more Fleabag, just to drive it home.

So. I am in pre-emptive mourning for my hair. Don’t console me. Don’t try and make me feel better about it.

Any “but it WILL grow ba…” will get a “ZIP IT”.

Don’t begin any sentence with “well at least…”.

But you can do this;

“Shit Shiv, not the hair! You have amazing hair. I’m gutted for you”

“Babes, I love you and I love your hair. I’m crying too right now”.

Celebrate my hair mournfully with me. Respectfully, for about 15 seconds, hands clasped, one eye on the clock.

And then let’s all start looking at interim comedy chemo cuts. I am not letting cancer take my hair. We’ve got to get there first.

It’s Scary Cancer Fact Friday!

So friends, I’ve got an Oncology meeting coming up so I’ve been mugging up all things cancer. Yay! I thought I’d share a few key scary cancer facts that I’ve learned since moving on over to this side of the cancer fence. Not to terrify myself, mind, or you for that matter (we can all do without unnecessary frights) but just for a healthy dose of realism in amongst all the gratitude as I go into  Phase Two of treatment  (the shitty phase involving hard drugs, but not the fun kind).

Also because, WOW, I’ve realised how little I knew about cancer before this. And, frankly, how little so many non-cancer people know too.

This is happening a lot, for example;

Friend: I guess you’ve given up sugar to starve your cancer?

Me: Fuck off and pass the damn cake.

And this;

Me: OmiGOD, did you know that if the primary breast cancer spreads to another part of your body it becomes secondary and THAT’S INCURABLE (actual horror face)?

Friend: That can’t be true.

Me: Fucking well is.

OK, so that’s the first horrific cancer fact out of the way but I’ll elaborate a bit more because, this, as well as the other has really helped me be kind of ok with the idea of doing chemo, a thought too horrific for me to even contemplate in the early days (ANYTHING BUT THE CHEMO!!).

1. Primary Cancer is curable, secondary cancer currently isn’t. Secondary cancer is when the cancer from the original site spreads to another part of the body., or metastasised.  All it takes is one tiny little cell to break away from the primary tumour, find its way into your blood stream or lymphatic system and then latch onto another organ and start growing. For breast cancer, the next go-tos are often the lung, liver, bone and brain.. Some secondary cancers are curable, but metastatic breast cancer isn’t.

2. It can take years for a cancerous tumour to grow to a detectable size.Some cancers are really aggressive and fast growing. Some are slow growing and it can take quite a while  for one cancerous cell to become a mass** that can be felt or detected on a scan or even to present symptoms you might think worth going to the GP about.. So that means, yes, for slower growing cancers (like mine) you could be blissfully unaware of cancer until such time that it decides it’s time to present itself to you. By which time, if you catch it early, it’s primary, if not, it’s a metastasised secondary. See the first point.

3. There is currently no test or scan to reliably detect Micrometastases in the blood stream or lymphatic system.*** Micrometastasis refers to the tiny cancer cells that have broken from the main tumour but not yet formed their own growth in another part of the body. In my case, cancer cells were detected in one of my sentinal lymph nodes following a sentinel node biopsy at the time of my mastectomy surgery. That means, the node was physically removed, cut open and examined in order to find the cells. These cells were not detected by all the presurgery ultrasound or MRI scans. And they were MACRO not even micro – but still just invisible cancer sittin’ there playin’ the long game.

4. Your immune system alone is not enough to kill cancer cells. Cancer wants to win at all costs. Markers vary greatly from cancer to cancer, and researchers are learning more and more about this, but the long and the short of it is that cancer has worked out ways to fool our own immune systems often by tricking our  immune T-cells into not recognising it as an enemy and therefore fighting it. Antioxidants aren’t going to touch that bastard. It also knows how to spread and how to hide.

5. Chemotherapy kills cancer cells, but not your other cells. Chemotherapy drugs, the treatment demon I’ve been a bit terrified of, stops those insidious cancer cells from growing and dividing and eventually they die. The drugs also affect the healthy cells in our body, but these eventually recover. The chemo is all about halting a recurrence.****

Call me a masochist, but this is me squaring up to cancer’s worst so I can stomach the treatment options. Also kind of handy for you guys to know before you wave your little cancer-curing tincture at me and suggest I try meditation to un-think my cancer into oblivion.  And this is coming from a kimchi-eating, green-juice guzzling, yoga-loving, occasionally-meditating turmeric-junkie who has consciously been re-populating her microbiome for the past year.

I am actually heartened by the kind of clinical trials being funded by charities such as Cancer Research into things like turmeric and asparagine, and it’s entirely possible that the future of medicine lies in a more holistic, integrated approach with traditional and functional medicine working together, but when the chips are down, I am going for treatment with clinical evidence on long-term prevention of metastatic breast cancer.  And if there isn’t a randomised double-blind clinical trial with evidence to support the new miracle cure, it ‘aint on the table.

In short, I’ll take the damn chemo thanks very much. Cake on the side.


REFERENCES:

** Professor Trish Greenalgh & Dr Liz O’Riordan, The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control, page 9.

**** Professor Trish Greenalgh & Dr Liz O’Riordan, The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control, page 132.

*** According to my team, there are clinical trials currently taking place involving methods of detecting cells for triple negative cancers but these aren’t widely available.

I have referenced Cancer Research or Macmillan for definitions that might be directly helpful to link to for this piece. I have also strongly drawn upon Greenhalgh and O’Riordan’s book The Complete Guide To BreastCancer: How to Feel Empowered and Take Control . It has been a key resource for pulling disparate information together which has been key in building the bigger picture and preparing for key stages of my treatment. Cancer treatment teams tend to drip-feed information which is aligned with the treatment process. This can help people cope and process difficult information in small chunks. If however, you are the type to know more and read ahead, then this is a great bedside bible.