1 June 2015 – Biopsy (Cancer and Me 30)
It’s nearly 2 weeks since I got the confirmation that the lymphoma is back. And I’ve only just had the biopsy today. The results will be discussed in a haematology appointment on 10 June.
Joe’s got 2 GCSE exams after that, so he will be nearly done. We’ve managed fairly well to keep up the pretence of normality for his sake. But it is hard.
I’ve only told 2 people at work, as I don’t want to unsettle things when I don’t know what the treatment will be, if any, and therefore I don’t know how work will be affected. It’s not like last time. Last time I had to tell everyone at the first sign of anything being wrong because we had to cancel an expensive holiday on the day we were supposed to fly. This time we have been able to go through almost the same tests (this time without having to wait for a CT scan) without making such a fuss.
It’s hard not talking openly about it. It’s hard trying to keep things quiet when the hospital calls and leaves an urgent message about an “appointment for your procedure” on your home answering machine! And then they don’t fully explain how long it’s going to take. So one person said I should be done in an hour. When it came to it, I was there for 3 hours! I told the kids I was working from home, and only just made it back from hospital before the end of the school day. And it’s all the more difficult for the fact that I’m not allowed any heavy lifting (not even the laptop bag I carried into hospital) for the rest of the day.
The “procedure” itself only took an hour – but the preparation beforehand adds more time, and they make you rest for a while afterwards to make sure there is no unexpected bleeding. Thankfully I didn’t have to stay in overnight like I did last time! How would I have explained that?
For those who want to know the details, I’ll outline what an ultra-sound guided biopsy involves. I don’t remember describing what the CT guided biopsy involved last time, but never mind. It’s pretty much the same, but using a different scanner to pinpoint where the lymph node is in order to insert a biopsy needle into it to get a sample.
I was called into a private room in which there was an ultrasound machine and a bed. I was asked to undress and put on a gown and then lie on the bed, covering myself with a sheet. Embarrassingly, this was required because they needed to take the sample from lymph nodes in my groin, so this arrangement at least kept me half decent (ahem!) during the procedure. The nurse went through some paperwork and inserted a cannula “just in case”. The radiology doctor came in and explained what was going to happen, and then proceeded. She used the ultrasound scanner to find the lymph nodes that had shown up on the CT scan, and which she’d agreed with the haematology consultants to use. She then gave me about four local anaesthetic injections around the area. And when she was confident that I was numb she kept the ultrasound scanner on the area and took two samples with biopsy needles. I couldn’t see that part, nor would I have wished to.
I was then told to lie flat on my back for half an hour, and then the doctor said I would be fine to go home after an hour – but no driving, no walking myself home (we live 5 minutes walk from the hospital), and no heavy lifting.
So now I’m just a bit sore. I’ve got to be a bit careful washing myself for the next 3-4 days. And I’ve got to get my mind back into work tomorrow.
And all the time I am quietly wondering what is going to happen. How would I prepare even if I knew?
My guess is that, even if it turns out to be low-grade non-Hodgkin’s lymphoma again, I will be advised to go for treatment. I come to that conclusion since a) I have symptoms, i.e. I have been unwell (a third of low-grade non-Hodgkin’s lymphomas are apparently diagnosed with no symptoms, so I read); b) it has only been two years since my last relapse, even with Rituximab maintenance treatment and after R-CVP chemotherapy, so it won’t take long to develop further. The reason they don’t treat sometimes is because they have to balance the fact that the cancer is there with the fact that chemotherapy is, in the short term, quite a disruptive treatment, and the cancer itself is not immediately life threatening or impinging on quality of life. In other words, why make someone unwell through chemo when they are doing fine and are unlikely to feel anything but fine for potentially years? They are looking at quality of life over the long term, knowing that they don’t really want to give people too many doses of chemo. In my case, I think when they look at the long term they will probably say we really need to get rid of this, rather than let it come back every two years.
I don’t say this to Heidi, as she needs every chance to act normal until we know what’s going to happen. But again, I’m 70% sure it’s what they’ll say, even though I’m 70% sure it’s low-grade.
But that doesn’t mean I know what the treatment will be. I’m fairly sure there’ll be a stem cell transplant, as planned, even though my own haematology consultants say that opinion is divided over its use with follicular lymphoma. But preceding that, will it be R-CVP again? R-CHOP? Or something more aggressive like R-ICE? If it’s R-CVP there is every chance I’ll be working fairly normally and earning money, even if there’ll be a few days off here and there. If it’s R-ICE I probably have to give up work and just face the treatment. Being self-employed, that makes a big difference to the family finances, and therefore to the whole day-to-day way of life for everyone under my care.
The upshot is it’s not possible to predict, and we will not know until 10th June. Until then it’s probably not worth contingency planning.