Scans

It seems that a lot of people have had scans such as CT,MRI,US to see if the BC has spread. I’ve not had any scans at all since being diagnosed, i’ve had 2 ops & now started chemo & they’ve not even been mentioned & i was just wondering why not. Why do some people have them & some not, is it to do with age or whether u have node involvement etc. I haven’t actually asked if i need them but i’m just curious.

hjv,
Think it depends on the hospital/oncologist to a certain extent, but biggest influence seems to be whether the axillary nodes are affected or not.
Mine were not and I had no scan beyond the diagnostic mammogram and ultra sound.
If the cancer has affected the nodes they look more to see if it has spread elsewhere.
When I had bad hip pain a few months after the end of chemo I had a bone scan which was clear.
Will be interesting to see what other people say
Lavender
xx

Hi

I had a large, grade 3 lobular tumour - it was also multifocal - but no nodes involved. I had to have mx and they’ve chucked FEC-T and rads at it - but no scans (apart from the rads planning one and an MRI of my boobs pre-surgery to check on the ‘good’ boob and get a clearer picture of the tumour.).

Dx

I’m still trying to get scans. Was diagnosed in Oct 2010 (18mm grade 2 tumour),and had mammogram and U/S as part of the diagnosis. Then surgery. The node biopsy showed it had spread to my nodes so had full ANC in Jan 2011. Then had chemo and rads.

According to my oncologist (this is in Scotland), they would only offer scans if 4 or more nodes were affected but I only had 3 nodes affected. I don’t really see what difference that one node makes. So tomorrow, when i go for my rads follow-up or whatever it is you get when you’ve finished treatment, I will ask again…

Possibly a money-saving decision? News today was going on about how cancer costs too much to treat and how treatments are being ‘over-used’…

Al x

As an absolute minimum your onc should instruct a bone scan and ct scan of chest/abdo/pelvis when he first sees you, as a benchmark to check for spread. I had NO node involvement,but it haf spread to my liver & bones. I had NO side effects so we would not even known about the secondaries if I had not had my ct & bone scan. My liver tumours did not show up on a liver ultrasound,and my tumour marker was onky 24 with normal bloods,so that would not have been an indication either. Insist on those two basic scans to rule out mets, your life may depend on it! Yes, it is down to money, but it’s your life. Remember cancer can spread through the blood,as in my case, not just the nodes. Good luck!xxx

Hi Hjv and everyone else,

I too have been wondering about scans. No node involvement but my mind is not at rest about the liklihood of spread. Sore ribs and cough for 5 weeks I am now wondering if my ‘asthma’ was misdiagnosed 6 years ago?

Would love a scan for peace of mind, but I too have had none at all. I am being treated in Scotland. would be interesting to know if geography plays a part.

Carolyn

Crabbit, I think you are right.I suspect it’s purely a financial decision based on how your local health authority is doing financially. I think you all have to insist on these basic procedures. How on earth is your onc supposed to treat you if he had no clear picture of what’s going on inside the rest of your body?.I do not advocate regular ct/bone scans after primary or secondary diagnosis, one a year is more than enough, but you onc cannot treat you with correct drugs etc… if he does not know if it has spread or not. I don’t think many primaries spread, they are often caught nice and early, but this info would also ease your minds and stop the sleep-reducing worry. Insist on baseline tests and gentle hugs to you all.

Hi Horsie, when I see my ONC for RADS planning session I will mention to her again.

Thank you.

If she gives you a load of flannel about node involvement then mention my case of no node involvement,but spread through blood. I am sure that you really do have ashma, but Peace of mind is a great thing… good luck with rads. I have just finished mine.they really are a doddle, more time taken in positioning you on the bed than the zapping. Xx

hmmm, thanks ladies, this is really interesting.

Horsie, i had micromets in 2 nodes,the rest were clear but i remember seeing on my path report ( i snuck a look when i was in for my op) that there was mention of vascular invasion. So i should definately have had a scan because of that then??

I see my onc after the next chemo i think so i’m definately going to ask him.

Hi everyone ,im in yorkshire and we dont get a scan either .No nodes involved but it doesnt stop you worrying .My lump is right under my breast in the fold .Almost on my ribs and i brought the question up that when i feel lumpy in that area how do i know if its a thickening or rib tissue?how do i check properly in the future?
When i went to see my onc she checked me and said all was fine ,but in the first instance i was checked 3 times and told(even by my surgeon )that there was no lump theter was nothing there and only by me insisting was the cancer found.
When i saw my onc there was a very kind nurse in with me who had suffered BC herself,20 years ago !!and still gets scared from time to time .She knew i wouldnt feel any better till i got a scan to check it had all gone so she spoke to my onc who in turn told me to speak to my breast cancer nurse .Apparently if you are worried it is them who arranges it all.
I spoke to my bc nurse who didnt really want me to have one as she said i didnt really want to come across as being paranoid or it wouldnt do me any favours in the future!!!However she has spoke to my surgeon who will see me on oct 3rd and i have to see if he will let me have a scan.
I know exactly how everyone feels,just one scan to check it has all gone and the lumps and bumps are just scar tissue you just need to know.
Push for one as your mind will not rest until you know for sure .Be persistent . Good Luck .Sharon xx

Good advice Lisha! be a pain in the bum - insist on a CT and bone scan! Most of you reading this won’t have any spread, but the peace of mind will help you keep positive and help your road to recovery. Not sure about vascular invasion hjv123, am not medically trained, but as you are currently having treatment you are well placed to get your onc to go through, line by line, your path report. Get him to explain fully the vascular invasion bit ( i had none) and then get him to clarify HOW he knows that your cancer has not spread. Good Luck to you all.xxx

I had an MRI as my lumps (despite being very big!) did not show up on an ultrasound. I had a fine needle biopsy on one lymph node which was positive and then had a CT scan which was clear. Psychologically I really think this helped as you are so panicked at the beginning, imagining the very worst, but this helped put my mind at ease and get on with the treatment.

Had meeting with onc and am now getting booked in for bone scan and CT. She said that they are reluctant to keep using scans every time you get an ache or pain, which I can understand, but I’m happy that I can at least see (hopefully) that it hasn’t spread anywhere else yet.

Good luck with your oncologists Crabbit and hjv123.

Al x

yay hay! success, Well don Al. The peace of mind when they tell you you are clear will be well worth it.hugs to all.xxxx

Hi all

I too was wondering about scans as they werent originaly offered or discussed. I am booked in for a bone scan for friday but i think only because i kept bleating on about my back pain which ive had since BEFORE dx. I thought a the time i pulled it doing Zumba but it keeps coming back and is so playing on my mind. The oncologist said that there was no evidence of vascular involvement so she is fairly confident it is not related but i will feel better when the scan confirms this for sure

I had a huge 7 cm lump but no node involvement, I’ve had mastectomy, chemo and rads but have been refused all scans. Everyone I speak to in the department says that the chance of a false positive is just too high. They say they see all sorts of things and have to treat them as secondaries even if they dont think they are. I dont want to risk this but I finished treatment a year ago and am anxious every single day that its elsewhere in my body, I just dont know what to do. I feel like my surgeon would give me a scan if I really kicked off but maybe its not a good idea?

Hi Ladies, just thought id add my experience…
Had 4cm lump,NO node involvement, mx,chemo and rads followed by hormone therapy, after treatment finished last aug i started getting bad back ache…took alot of complaining to onc before he sent me for bone scan, this came back ALL CLEAR!! but i wasnt happy with answer as pain was terrible at times so he agreed to then do an mri, but said ‘im not expecting it to show anything’…well turned out i have extensive bone mets and cancerous lumps in chest wall!!! he doesnt say no now when i ask for anything :slight_smile: so my advice would be if you are unsure of any pain or symptom that worries you then keep on at them, you’re life is worth much more than the cost of these scans!!

Take care all, Tracey xx

Not sure what to make about the last two negative posts. Im sure its highly unusual for the high tech scanners they use to have so many fals positives and false all clear results. I had my scan today and all went well. Should get results tuesday

Hi Clare,
Hope all goes well with your scan results. The waiting is the worst.

My BCN told me the bone scans often show things as hotpsots that are nothing to worry about - old injuries of bits of rheumatics/arthritis (i can never remember which is which). I was euphoric when she phoned to say mine was clear! Don’t know if there is any equaivalent for CT scans as no-one siad anything.

Hopefully you scans will be clear, as mine were, and you can take the next step along that route.

Take care.