Just needing a bit of advice from someone with a bit more experience of managing scanxiety! And to park this somewhere.
I started chemotherapy and immunotherapy treatment in January, first CT scan to check how things were going in April. Cue the anxious wait from hell until I saw the oncologist. I was really wound up by the time I got to see the consultant, and was very surprised to be told it was good news, no evidence of disease. Pre treatment it was all doom and gloom and stage 4, one in six chance of stabilising it etc. In effect, I felt like I'd been given a death sentence. Although they didn't give me a sell by date, thankfully.
I've done a further 5 rounds of immunotherapy, had another scan and am now back in limbo waiting for results. No matter how positively I talk to myself, I can't get rid of the awful sense of dread I get, waiting on results. I'll need sedating for the visit to the oncologst at this rate. I try to tell myself it went well last time, you feel well etc, but I am getting myself very wound up again. Constantly thinking 'What if...' It is so hard to keep positive, yet I know that I've not had any evidence of disease since my biopsy in November. Hope is a tricky customer, I am frightened of feeling it. The last time I dared to hope, I was diagnosed, and that was pretty crushing. I know I should be grateful that things seem to be going well.
I've got to get used to this, the plan is 2 years on immunotherapy. I am definitely triggered the minute I get scanned, it's like a clock starts ticking in my head. In between scans I function normally. I can withstand the physical effects of treatment, it's the mental battle I have with myself that is the hardest part.
Any advice please from anyone who has been there? Thanks for reading, allowing me to dump my brain content here, and for any pearls of wisdom.
Hi Newbie (Helen), It is something we all have, especially at the start. My way of coping is just to keep busy. I can't go for a walk, which was always something I enjoyed but I do read a lot, I do jigsaws on my iPad, there are plenty of free Apps. I also like word games, they are all free and you can play Scrabble etc against the computer.
To be honest, I don't think it will be possible to have a shorter space between scan and results by Consultant because someone needs to do a written report about the scan and I know in Scotland they are very short of people qualified to do it!
Have you thought of speaking to a councillor? Maybe talking it out will be as helpful as writing it down! Or have you thought of doing a Blog on this site? I always meant to start one but never seemed to find the time and when I had the time, I went off the idea but it could work for you.
The way I feel is IF I get anxious, the C is in control, so as has been said, it won't make any difference to the outcome, so I keep busy and that's MY way of being in control. Do you do any craft work, knitting, painting, cross stitch etc if not why not challenge yourself to start something new!
Good luck with your scan and results, there is no reason why the treatment won't keep working! So please don't make yourself ill when the treatment is controlling the cancer, you have to take control of yourself. The more you try the easier it gets!
Love Annette x
Hi Mmum, that's a really interesting take on it - I like how you look at reason for the scan is getting feedback about the treatment and approach. My Oncologist is really good, and will have a plan B if plan A isn't working. That's a helpful shift in thinking. Thank you. I'm going to put that in my journalling!
That's great advice Annette. TBH I am fed up of the chunk of my life C has had so far, and I was doing really well before I got scanned. At least I know that scans and waiting is a consistent trigger now, I can be ready for it next time! I can and will 'take back control' of my own mind, don't want to let C take away anything more than it already has from me. Shifty b****** that it is! Thanks for replying! Helen x
I think just putting it out there and asking others was a help today. My mood has shifted, and it's given me a kick in the right direction. I've journalled today, and I have a plan for tomorrow which is more normal for me, so that's good. I just get stuck in unhelpful thinking patterns (and in my head) around scan and appointment times, which is why I posted. I just needed to get my thoughts in one place and see what other people do. And if I get another no evidence of disease on Thursday, then I think I can trust that the immunotherapy is working its' magic which may make it less stressful next time around. Thanks for taking the time to reply. Helen x
Hi Helen, I really like what Annette has said. I have had to deal with anxiety caused by cancer as well as a past relationship. I do strategy tactics computer games because if I want to win a battle I have to really concentrate. It makes me focus on the game rather than the cancer.
I used to do needlepoint, which is perfect if you want to relax but my eyes and fingers make it more difficult now but definitely worth it if you don’t have arthritis and cataracts!
I also used to play the saxophone but I found it increasingly difficult due to chest pain. Changed to learning the clarinet and, for me, it is easier on the breathing. I was really enjoying it but haven’t played for a few months due to covid cough but I think I’ll try it again.
Walking is always good. I’ve also joined a local over 50s group. My first meeting is in a few weeks and I’m looking forward to meeting other women. My closest friends don’t live nearby, so I think it will be fun to meet new people.
Update. Thanks for all your comments. Just to let you know my medical team are miracle workers. No evidence of disease, for the second time!
I think it’s totally natural to feel anxious waiting for the results, much like we do waiting for exam results or any other major update. I usually try to make sure there is plenty in the diary, for example going away for a few days prior to the meeting with the consultant. Funnily enough, I usually find calm has descended by the time I am sitting in the waiting room. I try not to focus too much on the downside of what might come to pass. Rationally, I can’t do anything to change it, and unlike in the exam scenario, it’s not a reflection on how hard I have worked. In a scenario where treatment isn’t working, the sooner this is revealed, the more time there is to address it differently.
I have TNBC spread to my liver. I have had 4 cycles of Pembrolizumab plus NAB-Paclitaxel. I had a liver MRI today, I have a CT on the 15th and see my consultant on the 21st, so am in a similar phase to where you were at your April review.
Just seen your update too - really pleased for you.