Targit B Radiotherapy Trial

Mum saw an article in the Mail Online about Kirsty Lang’s breast cancer and treatment, with a number of parallels with my situation.  The article also mentions my consultant, Professor Vaidya, and the clinical radiotherapy trials he has been involved with for many years.

 

This new radiotherapy treatment delivers a boost of radiotherapy whilst in the operating theatre at the time of the wide local excision (lumpectomy). The main benefit is that the number of weeks of radiotherapy required is then reduced, better for the patient and the NHS. There may also be an improvement in the reducing the risk of the cancer returning, but this is unproven for cases such as mine.

Back in January when I was diagnosed, my professor discussed the trial and any possible risks with me, asking if I would be willing to participate. I elected to be part of this Targit B trial. Unfortunately, I was then randomly selected to be part of the control group – in other words I’ll get the standard radiotherapy, so will not have the benefits of a shorter treatment period. But it means I’ll be monitored for 10 years to see the long term effects of the treatment, and it feels great to be part of a long term medical trial which will help treatment of other patients.

This news piece from July 2014

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Sleep, exercises, Netflix and flowers

I’m recovering well from the operation, drugs are staving off the pain, although my body is confused. The codeine is making my head high as a kite, but my torso feels like a bloated lead balloon. The joys of constipation. Enough said.

Fortunately I’m sleeping well (is that the drugs too?) and my appetite is as healthy as ever. But I do feel like a space cadet – no way should I be anywhere near a car or heavy machinery.

My boob feels massive and very tender. Quite normal, apparently, after the operation. I feel like one of those body builders whose muscles are so big the can’t put their arms by their sides. My poor boob is bruised yellow and purple.

I have lots of visitors, new flowers nearly everyday, shelves of cards. Feeling very supported. Thank you.

Also just signed up to Netflix as I’ll be sofa surfing a lot. I can watch films while I do my exercises to prevent lymphoedema.

 

 

 

Home, lovely home

At home, lovely home, with this little beauty purring on my lap. A good place to be as I have been horizontal on the sofa, asleep, nearly all day.

Happy with my recovery, Dr Caris discharged me this morning, and the nurse loaded me up with drugs for pain and laxative to counteract the effects of the drugs. This sounds like fun. And another stack of leaflets and an exercise DVD.

My mum, dad and brother were at home with me. A relief for us all that the operation is done. Now my plan is to get my strength back after the operation so I can focus on whatever my treatments will be in the coming months.

 

Goodbye tumour

My day started early with no breakfast, not even a cup of tea allowed, and a frosty walk down the hill to the Whittington. Feel apprehensive but not worried.

First stop, Nuclear Imaging department for the blue radioactive dye to be injected just beside my nipple. Not painful at all. They lay me on the table and strap my arms and legs in (do people often fall off the tables??). Then large plates close in to your sides, and they capture images of your insides. Not claustrophobic, but I felt like a foot in the Clarks’ fitting machine my brother and I used to have our feet measured in when we were little.

Then two hours to kill before I could be admitted. I take a walk in Waterlow Park (not many people know it, and it’s lovely – great views across London) and have a peak at Highgate Cemetery. It’s cold, sharp and bright – a fine winter’s day to clear your head. And I’m gasping for a cuppa.

Waterlow Park

Highgate Cemetery

I’m admitted as a day patient (means you’re in for under 23 hours), taken to a room to prepare. No bed, just a chair. Odd. Then a succession of healthcare professionals come in to see me. None of them can sit down as there’s only one chair. Odd. Various forms to fill, preparations to make, questions to answer.

Standard attire is two gowns (one on either way), surgical stockings, paper knickers and then a blue paper shower cap, “just to complete the look”,  I commented to one of the nurses. Her eyes twinkled in amusement.

Those paper knickers are something else. They’re huge and baggy, “one size fits all” apparently. I put them on and they felt backwards. So I swapped them around and they still felt wrong.

Rocking the two gown and paper knicker look while I wait for surgery.

Bottle green surgical stockings. Oh, the glamour

One of my visitors is Dr Caris, we haven’t met before but I immediately warm to his Dutch straight talking style. He explains what will happen in surgery and checks my understanding. Professor Vaidya checks I’m ok if Dr Caris operates, and that he’ll be overseeing the whole operation, which is all fine by me.  Dr Caris also draws an arrow on my neck pointing to the boob that they need to operate on. Now I know I’m in safe hands.

There is just a 1 in 100 chance that they will not get clear margins with the excision. In other words, all the cancer has not been cut out. If so, then another operation. Whilst highly unlikely, at least I know there may be further procedures. It’s also explained to me that my breast will take at least six months to settle in to its new shape, but I can have cosmetic surgery to make my breasts even if I want. That all feels like a long way off. I just want this cancer cut out.

Two nurses walk me to the anaesthetic room, where it becomes a veritable gathering. I’m there earlier than needed, and I lie on the bed hooked up to monitors, with two or three nurses, various medical students checking in and the anaesthetist.  Her friend, another anaesthetist, evens pops in at one point. A few awkward silences ensue as I lie there in my blue paper hat, staring at the doors to the operating theatre.

There’s a clock on the wall, ticking away. I can hear the monitor beeping my pulse. So, I try to get my heart rate to 60 to match the ticking clock. I get to 61 – the assembled company seem impressed with my party trick. At some point I drift off…..

I slowly stir in the recovery room. Dr Caris pops in – all went well with the surgery. They only took out two lymph nodes. Phew. I have two incisions – one in my breast and a much smaller one in my armpit.

Staff buzz around me, I’m groggy but very thirsty. They’re waiting for a bed on a ward, so I have a long wait in recovery. Then someone puts an NHS snack box by my bed – like one of those snack boxes you get on flights. Bloody hell, it’s a ham sandwich. On one of the many forms I filled out I stated that I don’t eat meat, but this message didn’t get through. But in the box is also apple juice, two cream crackers and a block of sweaty processed cheese – in my drugged up, starved state they are like manna from heaven.

I’m wheeled to the ward, is it about 8pm? By some miracle, mum has located my ward and is on the hospital telephone to check in with me. She asks where I am – I have no idea!

I look around and everyone looks much sicker than me. Then, joy of joys, the tea lady appears and I get a cup of tea. Bliss. Locate my mobile and make calls and texts. It’s done, the tumour’s out. We’re all relieved. Now sleep.

Toast

No, no, no, not toast as well!   The news broke today that toast, roast potatoes and chips may all increase our cancer risk. Reading in to it, I suspect media scaremongering. I will continue to enjoy my (unburnt) toast, muffins and crumpets.

In other news, there was a quiz on the BBC website to see which kind of garden bird you are. I love a pointless, Buzzfeed type quiz, so I gave it a go.

Turns out I’m a blue tit, which amused me, as I will be tomorrow after I have blue radioactive dye pumped in to my boob.

I’m all ready for my operation tomorrow. List written, bag packed (including crossword book, cereal bars and earplugs), cat sitter on standby.

Nil by mouth after 2.00am, so I’ve made a massive vegetable stew to fill me up this evening. I will keep the rest in the fridge so I have healthy, easy dinners ready if I don’t feel like cooking once home again. I’m not too apprehensive about tomorrow, I’ve had general anaesthetic and operations before. Just want to get this tumour cut out and start my recovery from cancer.

 

Transylvania will have to wait

Today I should have been on a plane to Transylvania for a holiday with one of my great friends. Fortunately she is able to go without me, but I will really miss being surrounded by crisp white snow, visiting Bran Castle,  and seeing bears in the wild. Another time.

Cancer can really mess things up. At least there’s travel insurance.

Instead I did a crazy, cryptic clue hunt around London with my family. It was great fun and we walked miles in the winter sun – the Thames was looking especially splendid. And somehow we ended up in M&M World. I do not understand that place.  It disturbs me.

Last day at work for a while

I have an amazing team at work, we have been through a lot together, but what they achieve is wonderful and I’m hugely proud of them. I am lucky to have a job and team I love.

Often my roles requires me to make presentations and give announcements. I always prepare my mental script, make sure I’m clear on objectives and anticipate questions and reactions. Telling my management team last week about my cancer diagnosis was no different, except it couldn’t have been more different. As soon as I shared my news, eyes pricked with tears around the room (mine included) and the shock was palpable. But immediately they rallied around me and offered support. Wow.

Since then, the gestures and words of affection and positivity from everyone at work have been astonishing. I come home every night quite overwhelmed but hugely strengthened.

Today was my last day at work for a while. I asked my team to make it a low key day, and it was, although I was given some wonderful cards and gifts, lots of hugs, and this fabulous message light box. How lucky am I?

Tsunamis and ripples

When I was in the consulting room this week, there was a stack of patient files on the consultant’s desk. Some fairly thin (like mine), others very thick. It struck me that each file represents a person, a story, their treatment, their hopes and fears. It also represents all the lives that their cancer touches. How a diagnosis creates a tsumani and then hundreds and thousands of waves and ripples as the news touches family, friends, colleagues, acquaintances, friends of friends.

As soon as I had my diagnosis, I knew I wanted to be very open about my cancer. Sharing my news is part of the acceptance process for me, and also a way to garner the support I know I will need, and need right now. But an unwelcome shock for everyone I tell. The support, love and kindness has been utterly overwhelming. I have never had so many hugs, felt so much love. What a truly wonderful bunch of people I have in my life.

I love a plan

I saw my professor today to go through my results and confirm what happens next. After Monday’s events, I felt I was already pretty well briefed.

The consulting room seems to be a bit chaotic today with lots of coming and going, phone calls, a variety of nurses, a new set of medical students and a failing printer. The students examine me – I’m doing my bit for their training.

We all peer at the MRI images of my dangling breasts on the professor’s computer screen. Wow, my tumour is this little round, solid white ball. That’s the pesky bugger that’s caused all this trouble. And I can see the shadow that is the “something” but is just bruising (my poor boob).

Professor Vaidya is incredibly reassuring about that white shadow.

I’ve been booked in for surgery on Tuesday 24th, next week. It will be a wide local excision (lumpectomy) with sentinel node biopsy. All the scans so far show my lymph nodes as clear of cancer cells, but the sentinel node biopsy is a routine and important check. If they find anything whilst I’m in theatre, they will cut out the affected lymph nodes.

I’m hugely grateful I do not need a mastectomy.

We also discussed my treatment. Definitely radiotherapy, and I chose to be part of the Targit B trial. Maybe chemotherapy, maybe hormone therapy, but this will not be confirmed until we have the full biopsy results from my tumour and lymph node. So, there’s more of that limbo-land waiting to come, but right now I’m focussed on step one of the plan, which is to cut the cancer out.

 

Getting a cancer diagnosis launches you on to this incredibly steep learning curve, and for me information is power. I can feel in control if I understand what is happening. So, I read all the material I’m given and use the websites recommended to me. Beware, there is so much old and/or wrong information on the internet. You can scare the pants off yourself and become hugely confused. I think the NHS and charity sites are the most trustworthy.

At this stage my cancer has been diagnosed as a small Invasive Duct Cancer, which is the most common type (in my naivety, I never knew there are so many types of breast cancer). It is grade 3, ER7, PR0, Her2neg. This stuff matters because it tells us how the cancer is growing, what feeds it and so how to treat it to prevent a recurrence. In my case, it looks to be fast growing (grade 3) and oestrogen (ER7) feeds it. So, hormone therapy (eg tamoxifen)  is highly likely, and maybe chemotherapy too because it is grade 3. But we need the full pathology results before diagnosis and treatment can be confirmed.

 

So this is what panic feels like

At work this morning, about 10.45, my breast care nurse calls. Oh good, I think, I was going to call to ask about this Wednesday’s appointment anyway. What she then said knocked me sideways.

“Can you come in to the hospital today? We discussed your MRI results at the MDT meeting this morning and you need another ultrasound scan. We’ve found something on your MRI.”

Adrenaline instantly flooded through me. One of my colleagues looked at me with shock, she must have seen my reaction. I gathered up my things in a blind panic, I knew my team would see me suddenly leaving, but I had to get to the hospital straightaway. Fortunately it had poured with rain that morning, so I had driven and not cycled to work.

My thoughts kept going to a bad place, I kept pulling them back to a calm place.

“Oh my God, they found something!”

“It’ll be fine”

“Concentrate on driving”

“Oh my God, they found something!”

“It’ll be fine”

“Concentrate on driving”

At the clinic, I’m given a referral note for the Imaging Department. I go to Imaging and another wait with another pizza bleeper. I read the referral note as I wait. It instructs a scan of my right side. Phew. Whatever the “something” is, it’s not in my left breast.

The doctor performs the ultrasound scan of my right breast, and reassures me he thinks it is just internal bruising from the biopsy (I knew it had hurt!).

But I have to see one of the consultants to confirm. Another wait. His view is that it is bruising, and not anything suspicious. I then ask for more details of my case, and he confirms I will only need a lumpectomy and sentinel node biopsy at this stage.

This evening I am utterly spent. Emotionally exhausted. It’s the shock that is so draining – when I can prepare for an appointment, prepare to hear difficult news, it is so much easier to manage. But this is good news, this is great news, my MRI has shown nothing more. Now that’s worth celebrating (if I had the energy).