The Claytons Recovery

CLAYTONS RECOVERYMy parents were teetotallers in the main, that is until we managed to turn my father onto red wine in the latter years of his life – for the health benefits you understand. In my teen years I remember my dad bringing home all manner of non-alcoholic beverages and mixers in an ultimately futile bid to dissuade his daughters from hooking into the hard stuff for as long as possible. Claytons, the faux brown liquor that one could mix with ginger ale and pretend it was a scotch and dry, was one of these. Remember the TV ad with Jack Thompson? ‘Claytons. The drink you’re having when you’re not having a drink’. Four years down the track, it appears my recovery from breast cancer and its treatment is just like that. 

It’s always awkward when genuinely concerned family, friends, colleagues and even people I’ve just met, ask the question, ‘Are you better now?’ or ‘Are you in remission?’. I guess the answer to that is yes and no. By all accounts, I’m doing a Claytons – the recovery from cancer you’re having when you’re not having a recovery.

At the beginning of 2017 my wise family doctor told me that I ‘have form’ simply because I’ve already been diagnosed with and treated for cancer. As a result I have the privilege of remaining on the radars of several different medical practitioners for the next five to ten years. Well, a heck of a lot of monitoring’s gone on over the past twelve months, dear readers, which I’ve listed here for your convenience:

  • Two CT scans
  • One bone scan
  • One gastroscopy with biopsies of the oesophagus and stomach
  • One mammogram and ultrasound on the remaining breast
  • Four (maybe more, I can’t remember) sets of ‘normal’ blood tests tracking cancer marker levels, among other things
  • Two ‘special’ blood tests to track the CDH1 mutation, the major suspect in causing my cancer.

This doesn’t include several visits each to my GP and oncologist to get referrals for all this stuff, and the required annual visits to my breast surgeon and radiation oncologist.

As previously reported, all recent scans and biopsies have come up negative which, on the face of it, seems to support the notion that I’m an ex-cancer patient. However, the blood tests tell a different story.

In the past three years, I’ve had probably four or five ‘special’ genetic blood tests, designed to track a mutation called CDH1, a major player in the development of my lobular breast cancer. While the last test in May 2017 showed these levels to be very low, evidence of the mutation in my bloodstream has never dropped below the red ‘cancer line’ on the test results grid. According to the good folks at the genetics lab, technically speaking, that already classifies me as an actual cancer patient, not a Claytons one.

And then there’s the regular blood tests that I used to have every month but dropped back to every three months in 2017. The results of these tests are puzzlingly dichotomous. While things like liver enzymes, blood glucose, red and white cell counts are all within their normal ranges, the levels of cancer markers, notably CA 125 and CA 19.9, are running amok.

CA 125 is an indicator of ovarian cancer as well as inflammation in the alimentary canal, the reference range threshold for which is 36. My CA 125 levels have been rising in leaps all year, the last test putting me at roughly three times that.  This is despite going on a stomach acid reducing drug called Somac last November in a bid to address the effects of diagnosed reflux. Well, that’s just crap isn’t it?

CA 19.9 is a marker that’s indicated in pancreatic cancer as well as inflammation in the lining of the gut, stomach and other hard-to-see-and-get-at places. The reference threshold for this marker is 37 to 39 (depending on which lab you go to) and my levels are now registering in the mid-forties, well over the limit. Double crap.

Other cancer markers that we track – CA 15.3 (for breast cancer) and CEA Abbott (for general inflammation and other stuff I don’t recall) have also been rising with the former having just broken its banks and the latter hovering at its outer limit. Add to this the increasing discomfort I’ve experienced over the past 12 to 18 months in my upper digestive area (reflux, stomach pain and gall- bladdery symptoms) and one starts to feel a little disquiet about the whole scenario.

So, on the one hand we have scans and blood test results that say ‘move along, nothing to see here folks’ and on the other, we’ve got these raging CA markers and increasing digestive discomfort despite drug intervention. What the FEC is going on?

The first thing we need to remember is that I had a cancer that rejoices in the name of lobular.  Only 10 to 15 percent of people get this type of breast cancer.  It’s rarer and possibly undiagnosed in many because it’s a sneaky little bastard – slow-growing, stealthy, travels to unusual places, and, enjoys a hearty game of hide and seek. So, while all the traditional visual cancer tracking methods (like bone and CT scans) are coming up clear, that’s only because the errant cancer cells haven’t congregated in large enough numbers to form a growth that can be spotted.

Likewise with the stomach and oesophageal biopsies which also came up clear for cancer. This just means the badly behaved lobular cancer cells haven’t yet penetrated the walls of the stomach and oesophagus. They could be (and probably are) hovering just behind those walls, spreading in a sick Conga line along the outer linings – slimy surreptitious little shits that they are.

In the latter part of 2017 my oncologist was alarmed enough to present the curious case of Jennifer McDonald to the world expert in lobular cancers at an international breast cancer conference. In a nutshell, this expert’s best guess is that I am currently experiencing a relapse.  Two things were recommended the first of which was genetic testing to discover any influencing mutations. As you know, my oncologist sent me off these tests ages ago so we already know that CDH1 is the smoking gun in that department.

The second recommendation was scooting off for an abdominal MRI, vastly more effective than a CT scan at picking up very subtle changes in one’s innards. I had this scan last week and the results are in.  There’s an accumulation of fluid in the pelvic region that wasn’t present in the last CT scan, along with a thickening in the outer layer of a small bowel loop in my gut. The radiologist’s comments state that these things are suggestive of ‘metastatic disease’ which is, as yet, unconfirmed by any other test (like a biopsy) and clearly in the very early stages.

It may sound counter-intuitive but my reaction to the news that my cancer has returned is, in a word, relief. I’m glad they actually found something on a scan that helps explain my recent gut troubles and out of control CA markers. It also means that the expensive, non-Medicare or private health fund claimable MRI was worth surrendering my credit card PIN for.

So, in the immortal words of the West Wing’s President Jed Bartlett, ‘What’s next?’ Before I write another word, I must express my deep appreciation to my trusty oncologist who’s clearly no quitter. Despite evidence to the contrary and, more than likely, a few raised eyebrows from my other medical specialists, he’s always suspected there’s something untoward going on. Without ever being alarmist or reactionary with me, he has stayed on my case, tippy-toeing up behind this lobular sucker and lifting the rock it’s hiding under.  I couldn’t be more grateful that this particular medical practitioner is in my corner.

As we speak, the good doctor is coming up with a list of treatment options that will, no doubt, include a few suggestions divergent to conventional cancer treatment wisdom. I’m counting on it as, once again, I find myself at the bleeding edge of this Big Breast Adventure.

More from the trenches soon.

All the breast.

P.S. In my search for the original Jack Thompson Claytons TV advert I came across this outtake of a clearly impaired actor declaring that Claytons is the drink he has ‘when they won’t let me drink any more’. Quite.

 

Comments

  1. Susan says

    As always Jen wonderful to read your blog. You certainly are on a journey on which you have a fantastic group of people journeying with you. Always in my thoughts although we do not see each other often. Love and hugs my friend

  2. Jan van der Meer says

    Hi Jen. Sorry to hear that but as you know I am always the optimist. And you are amazing and sounds like your doctor is as well. So you’ll fix this I am sure I’ll be in touch directly to see what I can do to support you. Take care. Xxx

  3. kellee douglas says

    Well that is a roller-coaster ride – is it not. Beautifully written for all of us non medicals to grasp. You have my enduring respect, love and support.

  4. says

    What a beautifully crafted, informative piece of writing that provides an insight into what happens when you continue your fight against those invasive cancer cells, do the multiple tests and continue questioning the experts while maintaining an open mind about the possibilities. You are very lucky to have the oncologist on your side and is on guard with you.

    Win the war Jen – you have the spirit to do it!

    love, Marje

  5. Caroline Trotman says

    Dear Jen
    I’m sorry to hear this and will be thinking of you as you go through this next stage of treatment. If cancer could be killed by eloquent, informed writing you’d have seen this bastard off for sure. Love caroline

  6. Fleur Michael says

    Jenny, thank you for sharing with such clarity and honesty what you are going through. Your mindset and humour are truly inspirational. Lots of love Fleur x

  7. Ros Richardson says

    Thank you Jenny for your honest and compelling words, as always. Your determination and fighting spirit are so inspiring. I hate cancer having the upper hand, but know you and your doctors will kick its butt. Thinking of you.

  8. Julie McHenry says

    Hi Jen – You are so wise and brave, and thank-you for sharing. You are so willing to address these challenges ‘head-on’ and that is amazing. I’m deeply sorry to read the news, but grateful that you have such a tremendous ‘village’ of professionals and caring folks around you. Please remember Tim and I are part of that village and are sending our prayers and positive thoughts your way every day. You are a powerful warrior that we all admire!
    XO Love Julie

    • says

      Thanks to you, one and all, for your wonderful comments and extra-good vibes. I am so blessed to be surrounded by such fantastic people. All the breast! xx

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