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I couldn’t tell you about this yesterday, because I needed to do a little bit of research, but I didn’t have herceptin because there’s a potential issue with my heart. I’m going to give you the facts, and then I’m going to tell you how I put the story together.
The facts:
- A major side effect of herceptin is that it can cause problems with the heart, leading to heart failure.
- Herceptin hasn’t been in use long enough for scientists to work out for sure whether the deterioration it can cause is reversed when the drug is no longer being given.
- In order to monitor this, herceptin patients have an echocardiogram (an ultrasound of the heart) before treatment begins, and thereafter every three months or so.
- My most recent echocardiogram was on 13 December, and the one before that was on 13 September.
- The key measure for herceptin patients is something called the ‘ejection fraction’, which is the efficiency with which blood is pumped from the heart. It’s measured as a percentage, and average ejection fraction is between 50-65%. My ejection fraction was 65-70% in September, and had dropped to 55% in December.
- The guidelines for herceptin state that if the ejection fraction falls below 50%, or if there is a 10%+ drop in ejection fraction between one echocardiogram and the next, then the drug cannot be given.
- I therefore need to have another echocardiogram to check the result and see what my ejection fraction is now. If it’s gone up again, herceptin can restart immediately. If it hasn’t, then it’s a trip to clinic to plan what happens next – one possibility being seeing a cardiologist and taking drugs to counter the effects of herceptin. Essentially it will be a case of balancing risk to heart of continued treatment v. risk of cancer returning if I don’t complete the course of herceptin.
So, that’s where I am. Here’s how I worked it all out.
- Shortly before leaving for the PICC line appointment, I had a call from a nurse on the Trevor Howell Unit to tell me that I wouldn’t be having herceptin because there was a problem with my echocardiogram results, and I would be sent an appointment to discuss this in clinic at the end of the month.
- When I mulled this over afterwards I thought that it’s not really on to tell people that there might be a problem with their heart, but they needed to wait a couple of weeks to find out more. I also wondered why, if herceptin is so urgent (I was told I could possibly miss one treatment while having my tooth sorted), it was OK to leave things until the beginning of February, when it would have been 2 months since the last treatment.
- I checked out with Nathalie and Gerri what they thought. They agreed that it wasn’t really on. We decided that after the PICC was done we’d go up to Trevor Howell and find out more. (We were like Nancy Drew, but with knitting.)
- So we did. We waited the statutory 40 minutes before talking to the lovely Jo, who’d called me earlier. I told her that I wasn’t really very happy waiting until clinic to find out more about the problem. She offered to call the oncologist on duty for me, then remembered that there was a breast cancer clinic going on, so suggested I pop down and catch the oncologist there. If we missed her, Jo would then contact her for me.
- We went down to the clinic, which is at the other end of the hospital. No-one was waiting but two oncologists were still in the office. When one of them came out (let’s call her Onc A), I asked if the other one (Onc B) was still in there, and said I’d come down to see Onc B as she’d been dealing with my care that morning. Onc A looked perplexed as I didn’t have an appointment. I explained that the Trevor Howell Unit had sent me. Onc A went back to talk to Onc B. She then returned and said that Trevor Howell Unit hadn’t told Onc B that I was coming, and Onc B now had to call the Trevor Howell Unit (presumably to initiate disciplinary action against Jo for showing a bit of initiative).
- We waited. And waited. Half an hour later Onc B emerged and I stopped her, explained who I was, and asked if I could talk to her. She gave me the information about the ejection fraction stats (apart from the averages, which is part of what I looked up later, as well as the long term effects of herceptin on the heart) and said that a request for an echocardiogram had been sent and “hopefully” I would have an appointment there before the breast cancer clinic appointment I now had for 27 January.
- I suggested that I go to the Cardiac Investigations Unit and make an appointment in person, as I was – y’know – there already and everything, and she looked at me as though I was a little bit bonkers and said testily that echocardiograms were a different department and so out of her hands. She did go and print out the request for me to take with me, though.
- Nathalie, Gerri and I went to Cardiac investigations Unit, where I had a lovely chat with Pamela, the endlessly kind, patient and efficient receptionist, who gave me an appointment for 9am Monday. (She would have got me in today or tomorrow, but I am working.)
- Onc B said that there would be a 48 hour gap between the echocardiogram being taken and the results being available. So I will call the Trevor Howell Unit on Wednesday next to check on the results, and if they are OK (ie 55%+) I’ll arrange to restart herceptin straight away. If not, I’ll wait until clinic to talk about hat happens next.
So. That’s where my heart is… Alan and I talked about it last night, and Ned, Joy, Alan and I talked about it again this evening, and we agreed that, if it comes down to possible permanent heart damage and risk of heart failure versus possible return of breast cancer from not having more herceptin, we’d err on the side of heart caution. But we’ll cross that bridge when we come to it.
One thing’s for sure, though. Communication skills and respect for patients among oncologists ain’t improving any.
your post appears to sum up the NHS – left hand happily doing one thing, right hand another and never the two shall communicate.
I hope you echo goes well and try not to worry too much about it and the results. I was born with a heart condition, and medical knowledge of heart and treatment of it, is far more than that of herceptin and as they are aware of a potential problem it can be closely monitored.
Out of curiosity what hospital do you attend?
Hi Lyndsey
Thanks for your reassurance.
It's St. George's in Tooting.
The NHS seem to make more work for themselves, rather than less. Why the jobsworth attitude is beyond me.
I hope that it is just a blip and that all is well
So often medical staff throw off these lines that they think nothing of and then leave the patient absolutely petrified and in a state of confusion.
And they complain when we resort to the internet for explanations!
I think it's great the way you've taken these problems in hand and dealt with them. Inspirational as ever, Stephanie!
Gosh, Stephanie, sometimes I don't know how you manage not to hit anyone, or at least have a major hissy fit. It's raising my heart rate just reading this story. Gah! Possibly even GAHtoCANCER!
Lady GaGa could probably come up with some catchy little gah! bah! pah! to cancer tune.
One thing to keep in mind is that your situation is not NHS specific. Really, there is a shocking amount of that sort of attitude in medicine, period. I live in the US and I see it here.
In this case hardening isn't just about arteries. Well done, Stephanie and co. for persisting. And thank you for yet another eye opener. Here's to a high-five echo result.
Thanks, everyone, for your lovely and supportive comments. They are much appreciated. xx
"Like Nancey Drew, but with knitting". Lol, excellent! Shame about the rest of your tale though
Wishing you good news.
I've just read your post about Herceptin and the heart. I applaud you for doing your research. As a survivor I learned early that we must each be our own patient advocate.
I did my Herceptin for a year – my numbers went down but I only had to skip one treatment. Thankfully they returned to a normal range after I finished the Herceptin. I'm praying your treatments go well.
Hello Iris
Thank you for sharing your experience, and welcome to the blog! You are so right about advocacy…..