The last 6 weeks have been very difficult, since I had meeting with the oncologist to hear the results of the path lab analysis, following my RML lobectomy. In hospital I had been told that the surgery had gone well, so expected to hear either a) no lymph node involvement or b) lymph node involvement. In fact it was c)….no clear margins as tumour was touching the minor fissure. The oncologist said this meant that microscopic cancer cells could have been left behind (subsequently the surgeon said there were cancerous cells left behind).
That possibility hadn’t been on my agenda, so it was a huge surprise. Anyway, they wanted to do a CT 6 weeks post the surgery. My way of coping with things is to gather as much info as possible. Although I had read it at the start of all this, I hadn’t understood the significance of the screening report stating that the tumour abutted the fissure…. I do now.
If I had known this pre-surgery, there are questions I would have asked. Not that it would have made any difference, but I would have been prepared for this news. In some ways my reaction has been stronger/worse than when I was told I had cancer.
Apologies that this is turning into a novel (if only it were fiction!)
So yesterday I learned
1. They do not propose RT. As there is nothing visible they would have to cover a bigger area and I’ve already had RT on my other lung.
2). I have now developed pneumonitis in my left lung from the RT I had in December, which means they are more reluctant to give any more RT. It also explains why I’m still getting quite a lot of chest discomfort on that side.
So close surveillance is the proposal with scans every 3 months for at least a year.
I’m aware the news could have been far worse, but I find this uncertainty extremely difficult to cope with. I know everyone gets scanxiety, but I don’t feel able to forget about it and just get on with my life.
So sad to hear that the path analysis was not good and that you are also in discomfort from the treatment on your other lung.
I had a RLL around the same time. Although my margins were clear the tumour was very big and I now find my head full of worry about recurrence. I want to be able to forget about it and not worry about what might happen but it is so hard. I found out yesterday that i am to have first CT scan 3 months post surgery but not told why, only that the respiratory consultant had requested it, despite being told previously by oncology that it would be 6 months after surgery. I need to find a way to positively reframe this.
I understand how difficult it is to cope with the uncertainty of what might be found and hope we can both find a way of being able to live and enjoy life meantime.
Expectations are so important with coping with all this, I think. Before my surgery I was told that I would have my first post surgery CT at 3 months and that seemed to be standard at my hospital. Then, if all was good it would move to 6 monthly.
My recovery is going well. The scars are healing well and the nerve pain is managed by medication, although still have a bit of discomfort. I have been really tired but my thyroid medication is to be adjusted and that should sort it out.
You’re so right about expectations. I was told by oncology it would be 6 months, so when two weeks later I find out it’s 3 months I start to wonder why and, of course, I overthink it.
Did the RT work on your other than the side effect of pneumonitis?
I’m going to do my best to go ahead live my life and do things I enjoy with family and friends while I can x
I’m pleased to hear your recovery is going well…..long old process, isn’t it?! Your last sentence sounds great and wise….i will try and follow your footsteps.
re left lung. The good thing is it hasn’t grown or spread. Too early to say more than that apparently,…..the tissue inflammation of the pneumonitis obscures the tumour - So nothing more than the absence of growth can be determined for now. As I was fortunate enough not to have any symptoms, an improvement in symptoms can’t be used as a measure!
