I’d love to know if in some parts of the country women with breast cancer have annual CT or MRI scans as a matter of course.
I was diagnosed with grade 3 in 2005 and have never had a scan (other than a bone scan to check for bone mets) even though my prognosis is poor. When I talk to people with other types of cancer they seem to always have annual scans as part of their follow-up.
What’s normal in your area? It would be really interesting to know.
Janice.
Hi Janice,
As far as I’m aware ( and I’m only finishing chemo on Wed) I just get a yearly mammogram and have been told that I’ll onyl have additional scans if I have symptoms of something…my prognosis is not marvellous either…
xx
Hi Janice,
I have been advised by my medical team that they do not do annual cat/mri/ultrasound scans as they have very large doses of radiation and by giving scans yearly it will subject you to too much radiation which can cause future health problems.
I will only be given scans if and when I have any new aches/pains or symptoms that I dont currently have or cannot be explained.
I hope this helps?
Regards
Julie
Scans can also lead to false positives, which is why my oncologist dislikes using them routinely. I didn’t quite believe this reason, but then I had to have one to make sure that I didn’t already have secondaries and the scan turned up the possibility of pancreatic cancer, which was really scary and fortunately wrong.
If you look back over the months you will see I am always moaning about this! I have never been offered scans, further scans or tests routinely even though I had lymph node involvement. I am sure it is a money/regional thing. I live in Cumbria
irene
I have never had an MRI or a CT scan , but do have an annual mamograms for 5 years.
Hugs
Marge
xx
I have annual mammogram and ultrasound.
I had a grade 2, 2cm lump. dx Sept 2007. wasn’t offered chemo. Am 45 years old. Had surgery, lymph sampling (clear) rads and Tamoxifen. I was given a bone scan when I asked how I would know if it had gone into my bones but have been refused other scans. I have 6 monthly prods and pokes and some of those are so quick they wouldn’t notice a problem and I have yearly mammograms. I too would like an MRI. How do we know what to look for?? I have raised red lesions on the underside of my breast which I am terrified are skin mets but am too embarrassed to ring bc nurse again. Know exactly how Irene feels. Don’t know if this has helped but you are not alone.
Best wishes
Debbie
I have been offered annual MRI scans my surgeon says it is because my BC didn’t look as it should on my first mammogram even though it was a large lump stage 3 grade 3. It definately showed, I could see it but apparently the radiologist says it didn’t show what it was and they’re worried if I do get a reccurrence they wouldn’t see it early enough.
However something showed on my first MRI on the other breast so they called me back for an ultrasound but could not find anything so dismissed it, they said that the MRI does show everything up but if they’re going to then dismiss it why not just do ultrasound. Now it is always at the back of my mind what was on the MRI.
Lisa
Debbie (thrifty),
You will get those red lesions checked out, won’t you? It’s always scary and embarrassing, but it’s not worth leaving it and if it is something, giving it a chance to take hold. I don’t know anything about lesions, but I’d definitely ask.
Hope it’s nothing
Jacquie x
Thanks girls for your help with this. I think I agree with Irene that it’s probaby about money as there are just so many of us with breast cancer (44,000 new cases every year - just think what it would cost to scan us all annually!).
Debbie, dont worry about contacting the breast care nurse again, they really dont mind how often you ring them if you’re concerned and you have a right to be bothered. Jacquie’s right, you should get it checked.
Best wishes to you all,
Janice x
Hi Debbie (thrifty),
I want to ‘ditto’ what Jacquie has said.
Take care, get phoning
Carol
I was dx Aug '05 with a 2 cm grade 2 stage 2, her neg, prog pos, oest neg, one node (encapsulated) infected. Had lumpectomy, chemo, rads and now tamoxifen. My surgeon said before the op that if the cancer was more than 1.5 cm i would have to have chemo, or if it was less than 1.5cm but with at least one infected i would also have chemo.
I finished chemo (3xfec and 3xtax) jan 25th 2006, 25 rads followed. I have blood test (just for ´cancer marker which they said was accurate in 88% of women so worth doing) every 3 months and check with onc where i have physical exam… Once a year (for rest of my life they say) a mammo, echo scan (dont know what its called in English that one they use when your pregnant) over my boobs and under arms and see surgeon with all these results. Phew.In France so possible different.
What are these ‘markers’ you mention?? surely we should be offered them in the Uk if its as simple as a blood test.
I find it all very worrying as on the one hand we shouldnt have too much radiation and yet if we have pain and dont have scans and have secondaries its spreading and surely early treatment is best.
I had a bone scan and CT liver and lungs in March which thankfully were clear but have had very low back pain for over 2 and a half months. Xray and bloods are fine and they wont do a bone scan.
My 2 yrly mammogram is on the 17th, I asked about an MRI and was told that if he requested it it maybe refused and i would have to have a mammogram first anyway.
Although my breast was mishapen at DX the cancer was not easily detected on the mammogram infact that appt was horrendous 4 mammograms i had. Then on the ultra sound and needle biopsy i was told it was 1.5-1.7 in size turns out it was 4.4cm.
Sometimes i try hard to block it all off but then on the otherhand i want to know more but wonder if in the long run it actually helps. Is ignorance BLISS??
I trained as a nurse many years ago and actually think the people who know very little coped the best.
Interesting post though.
Rx
The cancer marker test they do is called CA 15.3, but there are different ones but this must be the on ethey do for BC. I get really paranoid every 3 months getting this test done before the following day i get a copy of the results delivered to me so i rip the envelope open in the street to see what it is!!! its just something they like to keep their eye on, if it goes up it means there is probly a new tumor/mets somewhere so they will start doing tests etc.Oh god, it doesnt bare thinking about, i have it all coming up in a weeks time, i hate that damn mamo.Its also such a strugle to find a vein.
I was diagnosed in March 2005 with Grade 3 multifocal cancer with 6/14 nodes positive aand lymphovascular invasion. I had a bone scan soon after starting chemo. Since then i have had 6 monthly checkups which have just gone to annual check ups. My annual mammogram (I’ve had 2) now go down to 18 months. This does worry me as i had no symptoms before my first routine mammogram picked it up. The idea of waiting for symptoms to appear terrifies me. My hospital doesn’t do tumour markers as far as i’m aware.
Kelley
Thanks for your comments re checking skin. One week on, it looks as though the marks are fading but see the consultant again at beginning of Nov so will mention it.
take care everyone
Debbie
xxx
This is an interesting thread, I was told that i would start getting yearly mammogram (remaining breast)/USS after my diagnosis August 06 as well as the 6 monthly check ups. To date I have not had a mammo/USS, I did get my first check up with surgeon & Onc a few months back and all was well.
I am now going it alone though, as I raised a few concerns via the hospital and to be honest my surgeons replies left every one including myself feeling that he was less than the right person to care for me. So I refuse to be seen by him, I’m also too embarrassed now to face my ONC or BCN as the same concerns were directed to them, although both of their replies were very much what we had hoped to hear!
So I’m now ‘go it alone girl’ as I have not been offered any support from elsewhere.
Lynn x
I get really angry when I read this - and the excuses hospitals give, as they did me locally before I asked to be referred to the Royal Marsden. I have just finished chemo and am in remission. I will have tumour markers from blood tests every six weeks and a CT scan every four months initially. I had 2 CT scans before chemo, one mid-way through my chemo and one at the end. This is all on the NHS. I would urge people - if they are anxious - to ask for follow-up scans and not be put off by excuses about radiation.
I was told I would only be offered a scan if they were suspicious the cancer was somewhere else. I had a lot of pain in the muscle in my back for about 6 weeks on the side where I had surgery as I had jerked something when I went 10 pin bowling. The onc asked if I had any bone pain in my ribs and my answer was no; she said if the muscle thing didn’t go away they would get it investigated, but they would not be expecting to find anything in my case. Thankfully the pulled muscle thing cleared up after I went to a few yoga sessions, one or two of the stretches sorted it out.