264. When ‘progress’ is not a good thing

Unfortunately, in Cancerworld, ‘progress’ has two meanings: the obvious positive and congratulatory sense and the ‘moving forward’ sense, which again can be positive but, in a tumour’s case, is NOT.

I am in the interesting position of meriting both. My Triple Negative BC is not behaving as my oncologist would expect and he’s intrigued. I got the impression from Dr U yesterday that he hadn’t expected me to last for so long on my first treatment, the dreaded but blessed capecitabine (fresh delivery next Monday) and my cancer’s progress is not as clear to him as he would have expected. So, I’m making good progress.

BUT my markers continue to rise (my tumour marker is more than double now so, suddenly, he’s saying “It’s only a number” to prevent me panicking). My blood marker has continued to rise too, quite a clear upward trend but “still within the normal range”. He might as well be yelling “Don’t panic! Don’t panic!” like Jonesy. It’s just the upward trend that is causing concern. Then there’s the fact that skin mets are popping up here, there and everywhere, while the original ones are improving or sleeping contentedly. Progression? Unfortunately one of the new ones is different. Rather than being subcutaneous, this one is like a tiny open cold sore. It itches, it stings, it forms a blister and scabs but it’s so delicate that just wiping my face with a flannel sets it off again. AND of course it’s slap bang in the middle of my cheek. I’m not letting myself think of how it might ‘progress’. 

Then of course there’s the tumour with its 2mm progression (NOT a good thing).

So off we go again, another ‘urgent’ CT scan to see what’s going on elsewhere. It’s like he can’t believe that it hasn’t spread to other places (back to it not behaving like TNBC usually behaves). I hope he’s wrong and there continues to be no sign of spread elsewhere because, when that happens, it will be over to IV treatment, not something I view with pleasure. 

I joyfully dropped Prof U in it by telling Dr U of the chaos that followed my last appointment, with no bloods instructions on the system (so Wharfedale couldn’t take the samples till a registrar at St James’s put them on). Then there was no prescription and the pharmacist NEVER makes assumptions, so there was no chance of getting my chemo tablets delivered on time (fortunately I had some spare tablets which covered the doses I needed, from the rare occasions when I simply have been unable to swallow the bloody things). Then one of my samples wasn’t processed properly so I had to return to Wharfedale for a second lot of blood to be taken - but they had forgotten to mark it ‘fast-track’ so…even more delays. I can just see my oncologist calling in his mentor to give him a bollocking :) 

We’ve just have our Spikevax at Woodsley Road where they looked after me so well last time. Unfortunately it was Moderna or Moderna. So I am armed with paracetamol (chopped into pieces I can swallow) and praying there is no repeat of the last horrendous reaction to Moderna. My arm is burning a bit but it’s nothing much, touch wood. I GOT A STICKER! SUPERSTAR!! How old am I??  I also got my eyes tested for new reading glasses and the optometrist was the same one as in September 2020, the one who must have spotted something was wrong and advised me to get a referral to Ophthalmology. It may have taken months but, in a way, that man saved my life so it was good to be able to thank him. My left eye may need a few laser zaps (my right was done early 2018, in my ‘other’ life, the one not dominated by effing cancer). So a shoutout to Shazam Mahmoud, one of my lifesavers.

I note the Emmerdale storyline drew to a close with a peaceful suicide to end the misery of MTNBC. I do wish they’d taken the story in a different direction. Maybe I’ll write a different version on here.

263. Breast Cancer Awareness Month

Ugh! How I loathe those pink tutus and pink wigs but, if it gets people thinking about breast cancer, even maybe checking their boobs properly rather than that cursory feel, gently prod and all is A-OK, then maybe it’s a good thing. BECAUSE, caught early, it’s no big deal, Maybe surgery and some radiotherapy. I think my mum had minor surgery on both boobs when the specialist centre opened in Guildford in the 1970s (?) and nothing else. I know she was dead chuffed because her Xrays travelled all over the place (before computers!) for training purposes. The second time, she had a lumpectomy and then 15 radiotherapy session, followed by tamoxifen for 5 years. 

So her daughter gets it and, guess what, there is NO genetic link. It’s sheer coincidence that I got breast cancer.

It’s really good to see Secondary Breast Cancer or Stage 4 Breast Cancer being given a higher profile but it still falls short for people like me because we don’t really fit in. We are that awkward group whose breast cancer is Triple Negative, only a small percentage of total cases, unresponsive to most treatments and most common in women under 40, of African or Caribbean origin… erm, try telling my body that.

 I’ve included this logo because, if you peer closely, you’ll see at the top the name of the charity that is beginning to give a voice to solely women with secondary breast cancer, so distinct from primary and so misunderstood. Anyway, rather than offload about the consequences of my appointment with the prof, I thought I would focus on Stage 4 TNBC. It’s probably because I took part in a zoom session with a visiting speaker and found it most interesting.

First of all, rid your mind of the Emmerdale story. It’s not inaccurate, but nor is it accurate. The fact is that Metastatic Triple Negative breast cancer is a condition to be managed, not the death sentence Emmerdale would have one believe. Do I watch it? I record it and just watch the scenes that deal with Faith and her family and her illness! 

I’m not sure of the legality of this screenshot but my readership is so ad hoc, I don’t think it will be infringing copyright or privacy. So here are the basics. Since it doesn’t have the hormone receptors that lie at the root of most breast cancer treatments, those treatments are ruled out. What’s left is a limited range of both older and newer drugs, some manageable, some with vile side effects. I’m not talking about trivia like losing your hair and weeping over lost eyelashes (as I did; hair I wasn’t bothered by), I’m talking about losing control of your body, uncontrollable vomiting, uncontrollable diarrhoea, hospital admission, unidentified infections causing neutropoenia and sepsis. Not much fun.

But it’s sheer chance and good luck if they land on the right treatment and your cancer responds to it. In this respect I’ve been lucky so far. But we patients are always aware that being stable or, as in my case, having the cancer under control is transitory. Every extra cycle is a gift. The body is still working with the treatment. But things can change very quickly and suddenly your blood results are sending red flags everywhere and it’s time to change. It’s a recognised fact that TN cells move fast and aggressively. Surprisingly, most cancer cells can be quite sluggish and spread slowly but surely over a much longer period of time. I was told by Dr U that he wouldn’t want me to go more than a week without treatment, which suggests to me that he recognises my TN cells will replicate fast, given the chance.

What is metastasis? Why is Stage 4 TNBC referred to as metastatic breast cancer? Because that is its key feature. The breast cancer cells have found another home elsewhere in your body. they no longer need that breast that was lopped off and they’ve managed to bypass those infected lymph nodes that were removed. They lie in wait and then do what they are created to do - replicate in a new home. Often it’s the liver, the lungs, certain bones, particularly the spine and sternum. Hardly surprising no one really seems to know what to do about my poor medial canthus. So when Dr U shook his head at the question “Have I been lucky?’ he was thinking ahead. How on earth will this progress? And I do think about it but only in an objective way. Will my tumour continue to grow and in what direction? Will my TN cells migrate to another home (there’s nowhere where they’d be welcome)? Will I need a liver resection, cyberknife treatment to the brain, a steel rod in my spine? These are all treatments people in the support group have had. Again, it makes me feel that I HAVE been lucky, so far.

Each new treatment is a new challenge. Your body must learn to accommodate it, not resist. While that’s happening, that’s when the horrid side effects can hit. But each cancer, even TN breast cancer that accounts for maybe 15% of all breast cancers, is individual. Diagnose two women with MTNBC on the same day and they will go off on very different journeys. It all depends on what the TN cells reveal (different molecular sub-types). It’s not surprising that the delay between diagnosis and treatment is longer than with your bog standard bc!

Is MTNBC a death sentence? Obviously yes, but not instantly. If one rejects conventional treatment in favour of quality of life (and you must have one fantastic quality of life to go willingly towards death rather than give it a good try), death is going to come sooner. Most women don’t go for that option - they hope treatment will work - and they put themselves in the hands of a multi-disciplinary team (MDT) which will consider all the options they have to hand or they know are available elsewhere on a trial basis.

When I first heard about trials, I was appalled. The thought of risking your life with something untested seemed stupid to me. I now understand things better and, in fact, qualifying for a trial may give you access to state of the art treatment as the data the scientists need is precious and must be precise. Unfortunately, my TN sample has failed all the entry requirements for every trial (maybe the wrong type of mutation, the lack of a particular receptor, the wrong DNA) but I will now have access to Trodelvy, which I do qualify for. Shame the side effects seem so horrible!

The big question for people with MTNBC is where do you stop in that eternal search for the magic bullet? I know of women who have worked through a whole list of treatments, three months on this, four months on that, and have yet to find that right drug. It’s heartbreaking to read their experiences and makes me feel grateful for my good fortune so far. I know it won’t last and I’m geared up for that. I have in my mind a line that I know I won’t be able to cross (probably vomiting, possibly the knowledge that the next treatment isn’t working) and I’ll make the choice to stop active treatment and start palliative treatments that will make life easier but not prolong it. I don’t actively think about this, I certainly don’t think about death, but there’s been an awareness right from the start that I will have to draw a line somewhere. Convincing D that it’s right for me, even for us both, is not going to be easy!

So that’s a personal perspective on MTNBC, incomplete of course because I have the concentration span of a flea, but a very personal view. Hopefully none of you will get it but, if you do, believe me over Yorkshire TV. I’m managing and living with it - and I never had a great quality of life anyway so I’m not missing foreign holidays and boozy nights out with the girls or dreading leaving my family behind. Maybe that’s made it easier for me to accept and adapt to it? I just wish the new chef could actually get his head round the new pressure cooker and not expect me to eat raw sprouts and mushy sugar-snap peas! (I interrupted writing this to enjoy my Sunday roast with no meat because D won’t cook it and he can’t bear cooking with me in the kitchen - I get in his way, it seems.