Recurrence worries- thoughts

I am constantly thinking about this as well and I’m only one chemo treatment in! I’ve been told yearly whole body scans can make anxiety worse due to all the false positives and unnecessary biopsies etc and apparently it doesn’t change survival rate statistics by having a full scan rather than waiting for ‘symptoms’ I don’t really get how that works unless the cells would be too small to be seen on the full body scans for distant. I completely know where your coming from though with wanting this done as I am the same and it’s on my mind 24.7  

It’s so hard isn’t it. So many breast checks but no body checks and distant recurrence is more likely than local so very strange. I have heard of a blood test which is in trials which checks for circulating cancer cells. I’ll need to do more research on that. 

I just think of distant recurrence can be caught early then it’s more treatable but can only be detected early with scans. 

I also think / worry about this. I guess it is a resources (time, money, capacity) issue. I think it also depends on which hospital you are under and their approach. Two friends with private health care have full annual scans and one has them with NHS but has had three local recurrence so is high risk. 
Although I would like the reassurance of a scan, I also think, when would you stop? When do you start to feel safe? 
I am trying to control the things I can with diet and exercise and trying to let go of anxiety. My GP was a bit brutal when I saw her about something I would never normally worry about - she said I was chasing the cancer diagnosis… harsh but also true. We have to draw the line somewhere although obviously need to be vigilant. It is difficult. 
I have also heard about that blood test - it would be amazing to have such a simple check on offer. 

You make such a valid point, when will it stop. I guess we need to trust our bodies hard when we’ve been through so much trauma. I find it hard because I had no symptoms of breast cancer so makes me extra paranoid also a lot of people I spoke to on the chemo ward with other cancers didn’t have any major symptoms either so just makes it extra worrying. 

Yes that is harsh but true what your GP said, sadly xx 

Exactly this - difficult to trust our bodies when they have let us down… but I am much better informed now about what causes cancers and (even though i thought I was healthy!) now have a healthier lifestyle. X 

I think as well as eating healthily it’s probably a good idea to deal with stress, I gather there’s a bit of research going on about stress and cancer.

I firmly believe it can be a causal agent, in my case I was highly stressed in looking after a disabled husband plus a daughter who had a primary  refractory blood cancer (and lived a good distance away at the time, too) so I was at home or on a train zooming north to her.

A few years after she got to remission and through a donor bone marrow transplant, I got my dose of bc. Thought to be low risk, I had a mx plus implant (I knew I didn’t want to be flat) plus 5 years of oestrogen busting drugs, 3 Letrozole and 2 tamoxifen which is less bone-disruptive. I then had a year in which I reduced some weight (yes hormone drugs can help you put it on!) then looking after hubs who got diagnosed with kidney cancer which didn’t respond to the meds so he died. Then a few months later I felt the lumpy bit by the end of the scar felt a bit harder and I had some discomfort in chest muscles, so sought an appointment. 
yes it was a recurrence. This time I had to go flat and as it had spread to one lymph node I had radiotherapy. I’m now on Abemaciclib and Exemestane, hopefully to sort it for good.

i too try and keep as healthy a life style as possible, exercise probably more than I ever did before, plus try hard to keep stress levels under control. 

If you can, try to get some counselling to get to know yourself better and deeper, as I feel this is a good way to deal with stress before it gets to a damaging level.

hugs xxx

Every day I wake up apprehensive.

I had left breast cancer in 2023 with several tumours triple positive. I had mastectomy, chemo, radiotherapy followed by Herceptin, Zometa six monthly injections and letrozole for ten years.

I freak out over letters arriving in the post if it has Nhs on the front I start panicking. 

I feel trapped in this constant anxious feeling even though they told me I was cancer free.

Cancer was found in my second ever mammogram and they were very small so I hadn't felt anything, so not sure what I'm supposed to look out for.

I have no idea what should cause concern. 

I'm really sorry if this offends anyone, but I'm always a step away from meltdown.

This thread definitely resonates with me. I don’t have any answers though! I went to a ‘Fear  of recurrence’ session at Future Dreams House in Kings Cross (can’t recommend this place enough, they do online sessions as well as in person). The session was useful and it made me realise that actually my big fear is that I have a recurrence that has already spread. But re annual scans, my own feeling is that it’s not just a money issue. It’s also about risk versus benefit. All scans using radiation carry a measure of risk so have to be used with caution. I’d never refuse one because I’d assume that if it’s being suggested then it’s a good idea, but I can see that it’s equally not good to do ones that are deemed unnecessary. I had radiotherapy ‘willingly’ to reduce my risk of recurrence but I know it comes with risks of side effects, short and long term. 
My hope is that all the recent reports of studies involving blood tests to detect cancer activity long before any symptoms would be manifested, will lead to ‘kinder’ ways of finding cancers. I’m in a study myself relating to a mutated gene that I carry (ATM), and I have blood tests every one or two years, and fill in an annual questionnaire. I’ll never know the results as it’s anonymised but it will hopefully help in the future. 
In the meantime, my personal approach is to focus on diet and exercise, and general ‘wellbeing’. It can’t hurt and gives me a bit of a feeling of power. Love to all, HFxx

Thanks Happy Feet!

 That really helps.

I need to focus more on healthy eating, and exercise so I'm going to try hard to start that this week.

As you said at least it will give me a sense of proactively doing something positive xxx

I am spiralling at the moment and hear you … my anxiety is through the roof as I have an ultrasound of my abdomen and a full body bone scan next week .. I had my bloods done to start ribociclib to prevent recurrence and one of my liver bloods is abnormal .. AST is 178 so I am petrified it’s spread  …. I am noy coping at all … I am only just finished radiotherapy because I had one out of two sentinel lymph nodes positive and I am appauling at coping with any of it .. so I am interested in techniques that really work because I can’t live with this level of.severe anxiety xx