Normal checks when diagnosed with BC

Hello
When I was diagnosed with BC I had a lung xray, a bone scan and a liver scan and am pleased to say all of which were clear.

But on reading through these topics I see that it is possible for BC to spread to the brain, so I am wondering what check is normally done to make sure it hasn’t spread to that area?

When I had my bone scan the dr checking the pictures and results said that I had a problem with my sinuses as a big black area showed up where my nose is. I’m not aware of any sinus problem, but should I be asking for a further check to find out what this is? I am a bit concerned about this, but then at the moment everything is worrying me.

I suspect the answer is nothing, but I can’t be of any more help as where I am being treated (Leicester) they don’t do any scans. I had a chest x-ray, but that’s all. They assume that if you have no symptoms, you don’t have spread.

I had a chest X-ray beforr the surgery but no scans which is the norm in Cumbria.

Seems to make sense to me as they just cause you worry, anything teeny isn’t picked up and it’s better to have detailed scans if or when you have symptoms is what I’ve been told. At the 3 month check up the lovely consultant surgeon pointed out that you can be fine one day and develop something a week later so how often should we be scanned, once a week, every day?

Could get mad couldn’t it :slight_smile:

Angie

I also just had a chest xray as part of pre-op I have turned down routine scans for all the reasons above

Vertangie

Do you go to the Cumberland Infirmary? If so would you like to meet up? I too have been told the same as you re scans but have to say I don’t agree with the reasons given, I think it is a money saving exercise. Other hosps give all scans routinely and yes things can develop afterwards but at least we could have some peace of mind for a time. I had lymph involvment too so it could have spread. I bet private patients get the full monty!

Irene

I was private initially and did not get any scans - had the standard mammo, detailed mammo to area where they saw summit dodgy and then ultrasound. Had chest x-ray as part of pre-op assessment and have since had bone scan - ordered by GP due to back ache … thankfully that was all clear.

I think we all attribute every little niggle to ‘it’s back’ and it’s so hard to believe that we are ok.

lilac, I agree with your last line 100% I’m going through a very low time at moment, convincing myself I have secondaries but with no real good reason for this (ie no lump or severe pain).

Irene

IreneM, yes we should meet sometime but in the meantime ask for the scan if it would help you. Obusco said that if we want them, even jsut for peace of mind that they could arrange them, it’s just that it won’t actually give you peace of mind for very long, but there is part of me that would like to know that there’s nothing sinister there right now but seeing as I’m on a course of FEC I like to think that even if there was there won’t be soon :slight_smile:

Hi

I only had a chest x-ray as part of pre-op (seems to be the norm in the West Country) but was shocked to be called back and told I had a shadow on my left lung. This meant my WLE was put on hold while a CT scan was arranged and during the 3 week period from scan date to results I convinced myself the BC had spread. Luckily it wasn’t as bad as I thought, doc is 90% sure it is a benign nodule?? Nevertheless I now have to undergo another scan and check-up next month and if no change, another scan in 6 months. I know I should be grateful that this fab hospital is not dismissing me but the BC is enough to cope with at the moment. Haven’t been offered a bone or liver scan but I guess health authorities do things in their own way.

Peacock, if you are worried about anything ask the doc to explain why they are doing the tests and what the results mean.

Best wishes

The bone scan issue seems to vary from area to area - in Lothian we get it as routine…

Hi,

I had my treatment in the Gloucester area and after dx and pre-op I had a chest x-ray and blood tests. I was told if anything had showed up in the blood tests they would investigate further as they look for specific things that indicate more trouble.

I am now over 2 years since dx and have never had a bone scan. It is left up to me and if I have any ache or pain that lasts more than 2 weeks then to get in touch with the hospital and further tests will be organised.

Sheana x

Hi,
everyone in our area has a routine cat scan and bone scan, to build up a clear picture of what is going on, and from that to decide on the treatment. I had a chest x ray and they forgot to tell me that it needed a repeat 4 weeks later because of a shadow. They say not to worry it happens all the time. Easier said than done. My routine cat scan is Wed so should get a really clear picture of what is going on from that. Smileyface hope yours gets sorted out, you have made me think about it. Peacock I was told it is very rare for BC to go to the brain and that is why we are allowed to have the cold cap. It is different for some other cancers that are prone to metastases in the brain. I also had to have an ECG before starting the epi as it is a huge dose on the TACT2 trial.Sheana, I was also told they look into a pain that you have had for 2 weeks but move fast if you are unlucky to find a lump of course. Are you all having your tumour markers tracked in your blood tests? They put Ca 15-3 on my blood test form for it each time, but they take longer to analyse so I get mine a dose behind each time.
Good luck everyone on here
Lily x

Hi Lily,

I haven’t had another blood test since the one after dx. No mention of tumour markers has ever been made to me either.

Since coming on this site I amazed at the differences in each hospital’s approach to breast cancer treatment…it makes me feel that mine was very casual really with minimum tests/investigations etc. I wonder if it’s down to money and the postcode lottery that is talked about?

At the time of dx, I had no comparisons to make obviously so went with it all assuming it was a standard, across the country plan of treatment that I had unwillingly entered. My eyes are being somewhat opened by others’ stories.

Sheana x

Hi

I went to Oxford and had no chest xray, scans or anything other than the initial mammogram and ultrasound. I felt really left out so asked and was told that they had no reason to suspect that I had any problems. Other women who have been treated at Oxford have had scans etc, depending on their stage and grade of cancer, so it isnt just the hospital’s protocol. I am very happy too about not having any more xrays or scans than I need for two reasons - so I dont get overexposed to unecessary radiation and so I dont have the stress of waiting for results that are unlikely to be positive. I dont truly believe it is to save money either. It is in everyone’s interest to pick up cancer early, as the earlier its treated the less it costs the NHS. It will give you a snapshot of whats around at that time. Three months later, there may well be new developments that it didnt pick up. This could mean therefore that you could have routine scans every few months just in case.

I also haven’t had any further blood tests since the pre-op and know nothing about tumour markers. I’ve got my first appointment with the Onco on Weds to decide my fate, rads or chemo, or both, and all this info is really useful - I will be taking my notebook with 101 questions!

One thing that has puzzled me though, I bought 2 bras, size and cup bigger for comfort after op. It’s now 3 weeks and both boobs seem to be expanding and bras feel tight. I know I’m eating more with nothing else to do but is this normal or will I end up looking like Jordan??

Lily - good luck with the scan on Weds.

I had chest x-ray, liver, stomach, kidneys ultrasound…ct scan, bone scan, mri…Said they wanted to do every scan possible!!! All clear thankfully…x

Hi,
Ct scan went ok so just waiting for the results - again! I said I was unlikely to be able to drink the thick barium, as on chemo. The nurse then gave me it in water, it had no taste and was literally just like drinking a jug of water. Very relieved and needle went in first go as a bonus. I liked the fact that they used my inner elbow, which is the only vein that has stood by me so far! Anyone going for a scan, it was not an ordeal, although I was concerned as have picked up 3 years of extra background radiation from it. Still as I have to have rads too, that is a massive amount and probably more likely to have an effect. I know they say flying on holiday to US is the same as tons of dental x rays.
Smiley, my chest got bigger and bigger after the drain was taken out. It felt engorger like when I was breast feeding. It was one sided and got so big I could not submerge it under water in the bath, like a great iceberg!! It just gradually defalted like a balloon!
I have a chemo diary which they record all my levels in, the tumour markers, etc. It has everything in it so that if you are out of the area or on holiday and ill, docs know what to do and the size of your doses, drugs, etc. Do they have these in all areas?
Anyway wishing you all well as we walk the walk together
lily x

Hi all,
my first post - dx 24th June this year, and I’ve had a wide local excision then a repeat to take away more. There is a lot of comment about tumour markers on this thread - could someone explain what they are, when they are used and what they do? I’ve heard no mention of them from my breast unit (in Glasgow).

Hi

I presume that tumour markers are the small titanium “V”'s that are inserted when you have a wide local excision. My surgeon says that they are put in to indicate where the tumour was when you have subsequent mamograms etc.

Angela

Hi all

I’m the same as you Jivebunny. Had WLE and going in for another op nextweek. Wonder why treatment differs so much around the country. I’ve never been offered any scans, but Cathy, I’m being treated in Oxford too. Did get a chest X ray pre-op, as did all the othersin the pre-admission clinic.