Updated 1 January 2015 re. importance of having a companion with you to make sure that your appointments during TACE run smoothly. There have been reports of patients being left on trolleys in the hospital corridors, the language problem, and patients being overlooked and having to discharge themselves.
Of all the treatments at Hallwang, Trans-arterial chemoembolisation (or TACE) was the one I dreaded the most.
Two reasons: it involved the administration of chemotherapy, and it involved a surgical procedure.
I had fought hard to heal the cancer holistically and for almost two years used complementary methods. Chemotherapy was anathema to me, the equivalent of poison, with satanic side-effects. Surgery was something I’d never had because I’d (until the cancer) been relatively healthy and never had any surgery apart from some dentistry, and a biopsy.
Trans-arterial chemoembolisation (TACE) is a procedure in which a scalpel is used to make a cut in the femoral artery in (usually) the crease at the top of the leg and groin. A catheter is then passed up the artery, and into the sub-artery that feeds the tumour. Chemotherapeutic agents are squirted into that sub-artery which is then sealed temporarily. What this means is that higher doses of chemotherapy can be used and because it is localised, the side-effects are minimised.
The procedure was to be performed by Prof Dr Vogl of Frankfurt University, arguably the best in the world because he invented the procedure.
I started getting cold feet two weeks before the procedure. I was relieved when it had to be postponed because of elevated liver enzyme values from Removab treatment.
People kept reassuring me that it was relatively painless, a walk-in-the-park. The more they reassured me, the more I did not believe them. I was worried about the anaesthetic – what if it didn’t work? What then? I realised my fears were out of proportion to the procedure.
In the end I had to have about 10 hours of counselling before I could face TACE. I had Skype sessions with my counsellors in England, and also sessions with Carolyn, the psychologist at Hallwang.
In one of the sessions with Carolyn, I had a flashback to two incidents in my childhood when I had to undergo dental procedures with inadequate anaesthesia. These were not dreams, but real-life experiences which traumatised me.
In the first incident I was about 8 years old. A new air-gun type injection was being trialled and I was the guinea pig. It went off with a bang and hit my gum hard. I was shocked and started crying. It took about 30 mins before I would allow the second injection to be administered. In the meantime I was told that I was being stupid and childish to kick up such a fuss.
In the second, I was a teenager and had a wisdom tooth extracted. As I entered the theatre, there was another patient in a chair. She was screaming her head off. “What’s she having?” I said. “Oh, the same as you are having,” said the dentist bluntly. Before I could protest, I was made to sit in the chair and my eyes were bound up with a bandage so I couldn’t see anything. I felt totally helpless. I could feel and hear things, but I couldn’t see what was going on. I didn’t know what was happening next. If that wasn’t traumatic enough, at the end of the procedure, stitches were anchored into my cheek. Unfortunately, the cheek hadn’t been anaesthetised. I squealed in pain. “We don’t want any side-effects from you,” was the dentist’s charming reply.
So, not surprisingly, those two traumatic procedures got deep into my psyche and affected my response to TACE.
We left the clinic at 6.30am. As a precaution I got two EMLA pain patches. Usually only one EMLA patch is used, but I was taking no chances with the pain issue. The patch had to be stuck on the groin cease at least an hour before the procedure, to numb it for the injection of local anesthetic. I put one on at the clinic, and another when I got to the hospital. I also got an injection of Clexane which is watered-down heparin (a blood thinner) because apparently cancer patients have thicker blood which is prone to blood clots, and Clexane was to help stop that from happening – the clinic took no chances when it came to the health of their patients.
Patrice the taxi driver hit 120kmh on the autobahn and got to Frankfurt University by 9.30am.
Usually there was a queue of patients for the procedure, and I’d been told that sometimes patients weren’t seen until the afternoon. Something was different that day and by 10.30am I was told to go to change into my surgical gown. Hang on – wasn’t I supposed to have a consultation with Prof Vogl before the procedure? Grace and I looked surprisedly at each other, but we decided we couldn’t do anything and I followed the nurse to the changing room.
The other anomaly that day took place when I was changing into my gown. I’d stripped down to my woolly socks, preparatory to putting on my gown, when the door started opening. “Stop! Stop!” I squeaked, “I’m not ready yet!” But it was too late. Someone in surgical greens walked into the room. O.M.G. Prof Vogl in the flesh. I gesticulated speechlessly at the gown which lay on the bench, but Prof Vogl proceeded to ignore my protests and ran through a disclaimer form with me, and got me to sign it. So there I was, in my birthday suit, trying to have an intelligent conversation with a professor, and pretending that it was nothing out of the ordinary … yes, of course I streak around starkers everyday.
After that I had an MRI. This was to map out the arteries surrounding the tumour, and to choose the one that was feeding the tumour. After the MRI, I was made to lie on a hospital bed, then after a short wait, wheeled into the surgical theatre.
Everything was very bright and cold in the theatre. Next to the operating table was a bank of MRI screens. The nurses worked like a beautifully-choreographed team, prepping me by placing surgical drapes around the top of my leg, hooking me up to infusions containing a pain killers and an anti-nausea drug, and painting my leg and groin with disinfectant. I felt like a sacrificial lamb on the altar.
The nurse took off the EMLA plasters and prodded the area underneath: “can you feel this?” she asked. “Er … yes,” I replied. “Oh. Looks like it’s not working,” she said blandly. My heartbeat shot up to twice its rate at that point. If that was German humour, it was in very poor taste.
And then the Prof Dr himself arrived. “I thought you were a nervous patient,” he said. “I am,” I squeaked. “Well, you are doing very well,” he said.
The Prof Dr spoke perfect English and it transpired that he had two sons who were in public school in England. He started asking me questions and I said: “I suppose you’re trying to distract me from the procedure?” And he said “yes”.
I could feel the injection and I gritted my teeth especially when the anaesthetic was administered. It felt sharp and painful, and then all I could feel was something weirdly hot and wet, like I’d peed myself. It was only the local taking effect in the groin area. And then before I could say anything, the Prof Dr leaned onto the top crease of my leg – it felt like an elephant had put its foot on me. What was happening was that he had taken a scalpel and cut into the crease, straight into the femoral artery. Because it was an artery, there was a little spurt of blood. I gasped, and then almost immediately he inserted a catheter into the cut, and the gush of blood stopped. I felt an even heavier pulling and pushing sensation as he fed the catheter deep into the artery and through the system.
All the while, he was guided by the six screens which was real-time angiograms/MRI. He was kindness itself, and very calm and tried to show me where he was feeding the tube, but I was too nervous to appreciate the finer details of the procedure, and too polite to say I couldn’t see what was going on, in case he decided to repeat the procedure again.
It took only about a few minutes from the incision to finding the main artery that fed the tumour – apparently mine was a complex case. That’s how fast he worked.
The weirdest moment occurred when he passed the catheter through an artery round the heart. I actually felt my heart go flub-dub, and had a moment of panic. But it happened so quickly, and then he was in the artery that fed the tumour.
And then he squirted contrast medium, and I felt it like a heat going down my arm. After I confirmed I could feel the fluid, he then squirted the chemotherapeutic agents (carboplatin, doxorubicin and avastin). I felt them as a heat, mainly in my arm area.
After that he withdrew the cathether and placed firm pressure on the femoral artery to seal it with a special sealant. It felt as though the elephant was trying to kneel on my poor leg.
And that was that. A huge pressure dressing the size of a small diaper was put over the wound. I was transferred onto a trolley, and wheeled to a recovery ward where I spent the next 3 hours, not allowed to move so that the clot would form and the artery would not bleed out. It was very boring. I read, I was offered a sandwich from the hospital kitchen, but I had a posh packed lunch from Hallwang. I was fed with a litre of infusions and painkillers and all that fluid had to have somewhere to go, so this was also my first introduction to the use of bed pans, not the most glamorous of experiences!
A huge weight was off my shoulders. I felt as if I had conquered a personal Everest in both facing surgery and allowing myself to have chemotherapy. As I lay there, there was a moment when I actually felt a sense of gratitude to the chemotherapy would shrink the tumour.
After the 3-hour recovery, I had another MRI to confirm that the chemotherapeutic agents had been injected into the correct artery. And then I had a consultation with Prof Vogl. During the consultation he said that even without the treatments I was getting at Hallwang, I could expect a 20% reduction in the size of the tumour and he suggested I return in a months’ time for a second TACE. I left feeling tired, but elated.
I was lucky. Despite my fears, I had a relatively easy time with the TACE procedure. Other people have reported a great deal of pain, especially if they had scar tissue in the area, and also pain in their tumours, or sore legs.
My leg did become sore, as if I’d pulled a muscle, and I spent the next week with a distinctive limp, which I nicknamed the Vogl Shuffle. I wasn’t allowed to do any vigorous exercise. Unfortunately, I did go walking up a gentle hill, and that was probably not a good thing because a few days later, I developed a huge haematoma on the top of my leg. The bruise turned to all shades of blue and purple, it started at the top of the leg, and ended up running down the inside of my thigh. Here is a photo of it in its early infancy. [after I got home to the UK, I had several sessions with a cranial osteopath and that sorted it out]
Even though it was localised chemotherapy, I did have some side effects. I lost my appetite a few days after. I became both weirdly constipated and had runny stools at the same time. This lasted for about 6 weeks. (I sorted out the constipation using senna pod tea, and took copious amounts of probiotics.) I developed nose bleeds for about a week which I think was a side-effect of the Avastin that was used. And 3 weeks’ after TACE, my hair started thinning, but I never lost all my hair or went bald like with systemic chemotherapy.
All in all the side-effects were short-term and tolerable and manageable. In terms of what TACE can achieve in a very short period of time, the side-effects and discomfort are on balance, acceptable.
I had a friend with colo-rectal which the oncs said was inoperable. They wanted to give her 6 months of systemic chemo to shrink the tumour. She went to Hallwang and had one dose of systemic chemo, and 2 TACEs, spaced 4 weeks’ apart. When she got home to the UK, the tumour had shrunk 30% at least [possibly more – the doctors in the UK were so miffed she’d gone to Germany they wouldn’t tell her how much the tumour had shrunk!!] and was now operable. She was spared 6 months of systemic chemo.
So … given the choice between six months of chemo and/or an inoperable tumour vs a short procedure with localised chemo, which would you choose?
If you have mesothelioma, Prof Vogl is one of the few in the world who can help in shrinking the tumour.
While I was at the Clinic, two people in the group had TACE before me, and for them it was like a minor surgical procedure. One had squamous cell carcinoma and the other had genital cancer. It is a tribute to Prof Dr Vogl’s skill that he managed to access the arteries for these tricky areas. They both sailed through TACE.
TACE reactions depend on the individual. There are other blogs which post about more extreme side-effects. I won’t gloss over things; TACE is hard-hitting stuff, otherwise it wouldn’t work so well. But in general, the majority of patients get through the procedure without a bad experience. And if you read Ren’s brilliant (and funny and inspiring) blog posts, he’s always emphasised the fact that he’s the unlucky 0.1% of patients who experience the extreme nasty side-effects.
Update 1 January 2015 – Please note – the Hallwang taxi service (even though it costs Euro 500) and the taxi driver who picks you up and makes sure that you are OK is worth it’s weight in gold. The German system is efficient, but it does make mistakes. It has recently come to my attention that some patients have been left on hospital trolleys in the corridor after their TACE procedures, or no one has come to collect them after the rest period after the TACE procedure. So you must have someone to be there to make sure that you are not left stranded in a huge hospital with staff who do not speak English!!!
Can you get TACE privately in the UK? I believe some hospitals do offer TACE, but they tend to use it only for liver mets. I do not, at present, know of any hospital/surgeon in the UK that will do TACE for other regions of the body, e.g. the breast or throat, or brain or even colon. So the answer is: yes, it’s available in the UK, but I don’t know where, and it’s most likely just limited to the liver.
After I left Hallwang, I was going through my paperwork and comparing the chemotherapeutic agents that were administered during TACE, with my RGCC test results. I realised that one of the agents used was not in the top 3 – carboplatin, instead of cyclophosphamide. I had a minor panic – OMG, what if they’d used the wrong agent? (carboplatin was right next to cyclophosphamide in the sensitivity scale). All that suffering for nothing?
So I sent Hallwang an e-mail querying the choices. The reply I got was couched in medical mist, about the pharmacodynamics and pharmacokinetics of the choices. It didn’t answer my question. In the end I spoke to someone who understood oncology and gave me an answer: the reason cyclophosphamide was not used was because it gets broken down in the liver, and my liver values were very stressed at that point. Which was a perfectly reasonable answer. I calmed down at this point.
It’s easy to get lost in the technicalities of all the information, and frustrating dealing with doctors who are too busy with day-to-day activities to deal with queries properly. Grace showed how valuable her experience and resources were and this was a great help to me.
My Downton Abbey moment
After my 3-hour bedrest following the TACE procedure, I was told to get up and go for another scan. I got dressed very gingerly because the dressing at my groin area was huge, like wearing a diaper on the leg, and also there was some soreness. I hobbled to the door of the ward.
“Your car and driver’s waiting for you. ” The nurse said.
Car? Driver? Who on earth?
I got to the door and peered out. The taxi driver from Hallwang, Patrice, was waiting for me in the corridor.
“Ah yes, of course … my driver,” I said.
All that was missing was a royal wave as I left the ward. It was probably the first and last time I’ll ever be met by “my car and driver”. I’d been watching Downton Abbey the night before, and it was a surreal moment.