No Scans to Check for Metastasis

It’s a really interesting question.  I don’t think in the UK you would normally get this screening. The department you are under just deals with breast cancer so I suppose that is what they concentrate on. I know quite a few on here are referred for DXA scans but they are to check bone density. I think I would go to your GP and explain all your symptoms and then maybe he could do blood tests and get your back x-rayed.  I am sorry my reply is not more helpful but maybe someone else can offer better advice. Hope you get the reassurance you need.

Evajean x

I wonder if it is post code dependant on whether you get a scan at diagnosis.  I agree you should go back to the GP for a referral for your other symptoms.  There was something in the press about how GPS now have or will have access to diagnostics.

Hi Miss Tangled, sorry to hear of your diagnosis. I too was HER2 positive plus ER and PR positive and grade 3 idc so aggressive too. After my surgery I asked my surgeon about scans to check for spread as I had cells found in my lymph nodes under my arm and had an axillary clearance. It wasn’t something she did but on referring me to my oncologist she asked for a staging PET/CT scan to be done which he requested to check for any spread. Maybe it depends on whether cells are found in lymph nodes but I don’t know. I am surprised they don’t do a scan to check as I would have thought it was important to check to make sure of no further spread. Maybe it’s worth bringing this up with your oncologist again and explain the reason why you would like a scan to double check. I see that some people have mri scans/ ct scans  before surgery to check so I don’t understand why your oncologist wouldn’t request this. 
Wishing you all the best and hope you get a scan to put your mind at rest.

Hugs from cuffcake x x x x x

I thought CT scans were fairly routine. I had the mammogram/ultrasound/biopsy at breast clinic after finding a lump and was then sent for MRI.

The MRI showed it was on my chest wall, which is maybe why they sent me for CT scan as you can't remove chest lymph nodes, only those in your armpit and mine was near the centre of my chest. 

They also said it was to make sure they gave me the right chemo - I had to have chemo before surgery to shrink it down so that they could get clear margins.

Maybe they're happy with where yours is, shape and size, grade etc that they don't think you need a scan? 

Hi Beatthebreast

It wasn’t presented as a clinical decision based on my specific diagnosis more that this is now not a standard practice for this particular NHS trust. They told me they used to do it but now don’t. I’m guessing it’s to do with budgets. 

They will MRI my breast to check the chemo progress once I get started with that. I just didn’t realise it’s not standard practice to screen for spread to other areas. 

When you read so many stories of other peoples experiences with breast cancer metastasising it’s hard not to worry that something could be being missed because it’s not even being looked for.

I also have lymph node involvement. The way it was presented to me was that my NHS trust used to carry out scans to check for spread but now no longer do. I’m guessing it must be a budgeting issue. Doesn’t help the worry of something being there that’s being missed because it’s not being looked for. I’d be more than happy to pay for my scans, not sure how I would go about that though. Guess I’ll have to ask. 

Gardinia, Evajean

I was told my NHS trust used to offer scans but no longer do so I’m guessing it’s a budgeting issue. I was told they would do scans but often not find anything else so it wasn’t cost effective. I’m sure for the people who did have something found it felt absolutely worth the cost but I understand how much the NHS is struggling. My cancer treatment centre is oversubscribed by 12 women a week already. It can barely cope with the number of women needing treatment. 

I am lucky enough to have a family member offer to pay for my treatment if going private would mean broader and faster care and treatment but my oncology dept are discouraging me from doing that and getting even a rough idea of cost is proving almost impossible. 

I know I’m not the only person in this position that desperately wants to throw everything they can at their cancer and be healthy again to avoid spread and reoccurrence. Unfortunately it does feel a bit like it’s a lottery as to how many resources you can access based on where you live. 

It is so awful to face all this waiting. The mind goes into overdrive and you imagine all sorts going on in your body. I didn’t know they used to offer scans. I think it must be partly due to budget but also the sheer numbers going through the system. Every time I went to the breast clinic it was just so busy. Hope you get something sorted soon. Take care.

Evajean

I had 2 CT scans and a nuclear bone scan after it was found in one node. It was a LOT of radiation over a 2 week period, as the consultant ordered it before clearance (nothing was found in clearance and the scans). It used to be that a consultant referral would get scans done quickly, but I've now been waiting a month on an MRI that way from them after hurting my shoulder moving things. I went to see my doctor as a routine check for other issues a few days after, and mentioned my back, which has an area damaged many years ago, and seen on scans but not clarified as anything other than not notable. She asked if I'd like an MRI to find out what it was, and I had the scan a week later through an NHS privately used clinic, with results next week. You might go to your G P about the lower back pain and try that route if it's an issue and for peace of mind, though stress could cause pains too. 

Such a coincidence but have just received my very detailed discharge letter from the Breast Unit. It gave my Cancer as stage 1and tumour Grade 2. Underneath it said “A CT scan of your chest, abdomen and pelvis was not required for you as you had a tumour with a good prognosis”. So I presume if the outlook was not so good they would arrange CT scan.  I was ER positive but Her2 negative.  I think if it was me in your position I would phone the breast nurse and explain the ongoing discomfort in your back and loss of appetite. They can send you for a scan so maybe push for it.